Walking the Fine Line

Baby, I'm AMAZED!!

2011-05-11T17:53:00.000-06:00

This little girl never ceases to amaze me!
She is so strong and so beautiful and is just ..... AMAZING!!!!

Enjoy!

Poor, Poor Neglected Blog...

2011-03-26T00:25:00.001-06:00

Oh my poor neglected little blog...
I've had good intentions. Really.
I've written so many updates, in my head. I just never had a chance to sit down at the computer and type them up.
Life has just been crazy.
WONDERFUL crazy!
I have been thinking a lot lately about the past year. So many positive things have happened. The best and most life changing was bringing Elaina home. She has had such a positive impact on our little family! She is such a sweet happy little girl. It is so weird to think that one year ago she was still at South Davis and we were doing our weekend transitions home. On April 2nd she will have been home for exactly one year! It has been an amazing year too!
Hmmm.... Let me update on all my kids.

Elaina is doing so many things now that she wasn't doing before. She can crawl like a madwoman! In fact, I have to keep her "confined" to the living room or she gets herself into trouble, lol. She can sit all by herself and pull herself into kneeling positions. She likes to sit with both of her legs under her behind so that it's easier to kneel up. She is "investigating" the whole climbing thing. I have a Wii Fit Balance board that is on a platform, making it 4 inches taller. She started putting 1 knee up on the balance board, but couldn't quite figure out how to climb. Well the other night she did it. She climbed up on the board all by herself! Of course once she was up there she didn't quite know how to get down. She hasn't tried to climb again, but I think it won't be long until she's regularly climbing up onto things. Her physical therapist is very pleased with her progress. She told me that Elaina is getting a lot stronger and is actually standing (with assistance only) much better. Elaina has a cute pair of pink Dafo's (foot/ankle braces) that she wears to help her support her weight. She does not like them. At all. In fact she cries the whole time they are on, but I keep putting them on her for small periods of time to help her get stronger. Hopefully some day she'll be able to walk! My little miracle baby turned 3 in January. Unbelievable! She was extraordinarily cute that day. She knew it was her day and she got spoiled rotten. Her favorite gift was the balloon bouquet that Ben gave her. I put her on the floor with the balloons and she was the happiest girl in the world. Elaina still loves her Disney movies. She goes through phases with which movie is her favorite. At the moment it's The Little Mermaid again. But this is new. For the last 3 months it's been Cinderella. Before that it was Monster's Inc. If her movie is not on, Elaina is crying. Not just whimpering, mind you. Full blown temper tantrum. She gets herself so worked up that she's gasping for breath and choking on the mucus that she's created with her tears. So, Mommy spoils her and lets her watch her movies all day long. :) It just breaks my heart when my normally happy little Princess cries... (I know I'm a big softie, but you pick your battles right?) So yeah, she's learning the fine art of manipulation and I'm loving every minute of it! She's started pre-school, but because she's so medically fragile, I'm having her home schooled for the remainder of this school year. So we get lots of visits from lots of new friends every month. She'll most likely go to the classroom in the fall. Very exciting!
Medically? We see Cardiology in June, but her sats are great. Still in the high 80's on the 1 liter of oxygen. She had an MRI in November, it showed that the swelling in her brain from the aspiration episode she had when she was 3 months old has completely healed! So I've been able to wean her completely off her seizure medication. It caused several weeks of sleepless nights as her body adjusted to less and less medication, but I'm so glad that she no longer needs the med. We see her Neurologist next week for a follow up, but I just know that she's fine in that area. I also took her for an Ophthalmology consult in December. She's been diagnosed with Optic Nerve Hypoplasia, which just means that her optic nerves are very small. It makes her legally blind, but he told me that she still has a lot of useful vision. She's farsighted because of it, but he didn't think that glasses would help her at all. She has one "lazy" eye, but he doesn't want to do surgery quite yet. So as of right now, we're just watching to see how she progresses. She's had a couple of ear infections, but otherwise she's managed to stay healthy and out of the hospital (knock on wood!) since last May!

Ben turned 8 last fall and is in the 2nd grade. His newest passion is Cub Scouts. He just earned his Bobcat and looks forward to Scouts every week. He's also a video game junkie. We got a Wii for Christmas (I really, really, really love my Wii Fit and that was the main reason for getting the Wii) and Ben loves to play as often as possible. He's still head over heels in love with his sister and is in awe of how much she loves him. :) He is very excited for spring and summer and can't wait to spend as much time as possible outside. His reading is improving and he's a pretty happy little dude these days! I just got him a bunk bed, and he is thrilled to have claimed the top bunk. I can't believe how grown up he is.

Why did I need a bunk bed? Well, that's because my step-son Chance came home! I don't know that I've talked about him on my blog before. Chance and Ben are brothers, and share the same Dad. When my husband, their Dad, died in 2003, it was really rough on Chance. He came to live with me and his Dad when his Mom died in 1997 and with his Dad gone, he was having a really tough time coping. Can you blame him? I can't. He did the best he could with the circumstances at the time. Unfortunately, he made some bad choices at the age of 14 which necessitated him being placed in a Foster Home. It broke my heart to do it, but ultimately, I know that it was what was best for him as well as for our family. Well, there is a happy ending! He worked really hard in therapy and in his placements, and last November the Judge decided that he could come HOME! SO, that means that TWO of my three children got to come home to me in 2010. It was awesome. Chance just turned 19, and is joining the Army. He is staying with me until he leaves for basic training. While it scares me to think of him being in harms way, I know that he's doing what is right. He has some really amazing goals and ambitions, and joining the Army is really going to help him. He wants to work in Law Enforcement, and feels that time spent in the Army is only going to benefit him in his long term goals. Amazing. I am SO proud of him and the choices he is making. He is a good big brother and Ben just loves having him home!

What about me? Well, I just run around crazy. Nothing new there! Being a single Mom, working and taking care of my house as well as 3 kids is exhausting, but worth every moment of it. The rewards are there. No wonder I have a hard time finding the energy to blog! If I get 5 hours of sleep I feel like I've won the lottery. :) About a month ago I got the "Spring Cleaning" bug and completely re-organized my little apartment. I moved all the furniture and completely re-arranged every room in the place. The best move was taking the computer out of my bedroom and putting it in the living area. My kitchen is very small, and I honestly didn't think a kitchen set would fit in there, but I found one that works perfectly. So, I turned my dining room into an office and now I can have Elaina in the living room playing while I work instead of having her in her crib, which I hated doing. Hopefully this will also allow me a little more flexibility with my computer time and I can start blogging more frequently. I've really missed blogging and want to get back into the swing of things!

Well, I wish I had time to post tons of pictures, but I have a feeling that if I don't post this now, it will just sit in my drafts. It's already taken me 2 days to get it written up this far! I will try to put some pics up soon.

Thanks for checking in!

Crazy Week!

2010-05-30T09:48:00.002-06:00

Well, that was sure a crazy week! Poor Elaina DID NOT like being back in the hospital. I don't think I've seen her pouty lip quiver as much in her whole life as I did the 4 days she was at Primary Children's this past week. We got to come home Thursday evening and she slept most of the following 24 hours. Don't get me wrong, she'd wake up.... but after about 20 - 30 minutes she'd drift back to sleep. Being in the hospital is exhausting! The good news is that she's stable from a Cardiology standpoint, and her numerous blood cultures and mucous samples never grew anything. So the conclusion is that she just didn't have any reserves to fight off her double ear infection and (assumed) strep throat.

To make matters worse, she didn't tolerate the changes in her feedings. We've put the increase on hold for now, she needs to get feeling better before we make any big changes. Part of the problem with the feedings, was that PCMC didn't have her "brand" of formula in house, and the person that orders them was on vacation. Hmmm. SO, dietary put her on a similar formula and then increased her volume from 700 to 1030. It was not a gradual increase, just BOOM, here ya go! Well, Elaina's body did not like the different formula, and the fact that the volume was increased so drastically caused us some grief. She turned into a little mucous ball, and was gagging and retching several times an hour. Because of her Nissen, she's unable to throw up, but that doesn't mean that her poor little body didn't try. She was so miserable. She couldn't even sleep for more than 30 minutes at a time and because of the aspiration risk, she didn't get put on her bi-pap for 2 nights. Poor baby. I finally brought in my formula from home and the doctor rescinded the order for increased feeds. Within 24 hours her oxygen requirement was down from 4 liters to 1.5 liters, and she was gagging and retching much less.

Once we were close to her baseline oxygen needs, we only had to wait until she was 24 hours without a fever. Well, we -Dr Black included!- were so anxious to get discharged that he wrote the orders and we were packed up and ready to go when the 24 hour mark hit. It was SO NICE to get home! I think Elaina was a little confused, because she was still unhappy when we first got home, but after her "rest day", she's back to her happy self.

Oh, and this morning, she's back to her 1 liter need of O2 and still satting high!

You go girl!

Thanks for checking in on us!

Hugs,
Hollie, Ben and Elaina

Time for a Tune Up

2010-05-25T14:05:00.002-06:00

Well, as much fun as it has been to be at home, Miss Elaina decided that she missed all the hustle and bustle of the hospital and we're back at Primary Children's for a little "tune up". She's been battling a double ear infection for a few weeks, and did really well after the first round of antibiotics. We went back to the doctor last Monday for a 2 week follow up and her ears were looking good. She had a pretty good, uneventful, week until Sunday.... She woke up Sunday morning and was a little fussy. This is not normal for Elaina, she's a pretty mellow, laid back and happy girl, so when she's fussy she's got a good reason. She was really sleepy as well, in fact she took a 5 hour nap! After her nap I had her in her saucer and felt like I needed to get her out. When I did, she was really blue and her arms and legs were really cold. I took into the bedroom and snuggled her in a blanket while I pulled out the pulse ox... no reading... I quickly pulled out my handy dandy portable suction machine and suctioned quite a bit of gunk out of her nose and throat. She still looked blue. I increased her oxygen and finally got a reading on the pulse ox. 72%. Not good, especially on increased O2. Her legs and arms were still cold so I tossed some PJ's in the dryer to warm up and took her temperature while I waited. 102.2 degress. Not good. I gave her some Tylenol and put the toasty warm pajamas on. Her sats went up to 78. A little better but still not great. I decided to put Ben to bed (not only because it was past his bedtime, but he was freaking out - silly boy) and I called the on-call doctor (because it was 9:30 on a Sunday night). He told me in no uncertain terms that I was to take her to the ER at Primary Children's. I called a friend to come and sit with Ben until my Mom could get there and loaded Elaina up. Once we got to the ER, they took one look at her coloring and scooped her away and put her in a room. Her ear infections have come back and we're pretty sure she's got Strep throat. In all the chaos of chest x-rays, and hustle and bustle of the ER somehow the culture wasn't done. The ER docs decided it was best to admit Elaina so that we could make sure that it wasn't a cardiac event causing her sats to drop so suddenly and so that she could get some good IV antibiotcs (it only took 2 pokes to get the IV and we still have it! knock on wood!) She had a rough night Sunday night with fever and a bi-pap mask that didn't fit very well. She also missed a dose of her Revatio (aka viagra - for her pulmonary hypertension) and we think that contributed to her rough night as well. She's currently on 3 liters of O2 (she came home on 1 liter) to keep her sats in the 80's. So far the Viral panel has come back negative, so hopefully it's just her ears and throat. She's coughing a lot more and seems to have a little more of a struggle to clear her secretions. We took a trip to Cardiology for an Echo yesterday and the cardiology team told me that her heart function still looks really good, so they don't think that her increased oxygen need is due to heart failure or a sudden event with her heart. I cannot tell you what a relief it was to hear that!!!!!
So at this point the general consensus is that her reserves are just a little low after fighting off a double ear infection a couple of weeks ago, so she just needs a little extra help with oxygen right now while her body is fighting. On a postive note, this has given us the opportunity to fine tune some of Elaina's meds and also increase her feedings, both calorie and volume, while under the watchful eye of doctors and nurses. Another positive is that Dr Black gets to be her attending physician, and although the in house team of residents is taking care of her, Dr Black is signing the orders and is in control of the labs, etc.
The goal right now is to be able to go home as soon as possible. We're hoping to get Elaina weaned down to 2 liters of O2 before coming home. I'm aiming for Wednesday, but we all know that Elaina does things in her own time and on her own schedule. We were supposed to have a Cardiology visit next week, but since she had the echo already, they want us to follow up in 4 - 6 weeks, once she's feeling a little bit better.

I don't have a laptop with me this admission, so I'll try to update when I can. Please pray that we get to come home tomorrow and that Elaina will once again show everyone how strong she is. So many of the staff her haven't seen her in almost 2 years and they are amazed at how big she is and how good she looks (even though she's sick!). I think she's feeling a little bit better today, she's actually given the nurses a few smiles! We're in room 3061 if anyone is at PCMC and wants to come say hello!

HUGS!!!!
Hollie, Ben and Elaina

Can it be?

2010-05-02T12:39:00.003-06:00

I cannot believe that Elaina has been home for 1 month already! The time just seems to fly by! We've been keeping VERY busy! Between the med schedule, feedings, and visits from our Home Health providers, not to mention the day to day things like homework, laundry etc, I've barely had time to sleep. I've had good intentions to update the blog, but sleep has won out!

Elaina loves being home! She is such a happy little bug! Here she is in the kitchen helping Mommy fix dinner:

and playing with her toys...

She's still having a hard time establishing a good sleep schedule. I was SO tired one night that after an hour of unsuccessful rocking, I put her in her crib. I figured that she didn't get rocked to sleep at South Davis, so she didn't really need Mommy to rock her, right? Well, I thought she was asleep. Then I heard a noise. Many noises. I peeked into the crib to see this:

On her hands and knees, rocking. On the bi-pap. Looking like an elephant. (Elainaphant, hehehehe!) As soon as she was "caught" she flopped over, like she was ready for bed. I moved her up onto her pillow, and tucked her blanket around her, telling her it was "night-night" time, and within 5 minutes she was asleep. Silly little girl!

She's been getting LOTS and LOTS of floor time. She's still not crawling, but she is SO close. She can get anywhere she wants, by rolling and scooting and pulling herself. A couple of times she has tried to follow me out of the living room, so I know that full mobility is close at hand.

And Ben? Well, he takes every opportunity that he can to love on his sister. His favorite thing is to hold her while she's sleeping. She was napping on my bed early one morning (after a particularly sleepless night), and Ben came in for some morning snuggles. I had to get up to get some meds, and when I came back into the room, this is what I found:

And of course, one of the favorite things to do is cuddle while watching Nemo or Little Mermaid.

Elaina is in LOVE with her brother! She gets excited whenever he comes into the room, and she loves to pull his hair to get his face close enough to give him smooches!

She's had a little cold for the past couple of weeks. Either that or allergies, the doctor wasn't sure which it was. So I'm keeping the suction close and giving a few extra snuggles afterward. She hasn't had a significant fever, so the doctor isn't too worried, but I'll be taking her in again on Monday, just to be sure. She's been coughing a lot and pretty congested. Dr Black told me to increase her oxygen a little bit right now to keep her sats up, but otherwise just keep her suctioned and happy.

Suction does NOT make her happy.

Luckily, kisses DO!

Thanks for checking in on us!

Hugs,
Hollie, Ben and Elaina

This is the life....

2010-04-05T21:45:00.005-06:00

Elaina is LOVING being at home. Probably just as much as we're loving having her here! She's keeping me busy, but I'm loving every minute of it! We got to go to my sister's house for Easter and Elaina was even able to have some play time with her cutie cousin Adam. Adam just turned 6 months old and the first thing Elaina did was to give him a kiss on the cheek. :) Super cute! Ben is out of school for Spring Break this week, so we've got lots of time to get things done and get settled in. I still don't have most of her things put away, but we've been having lots of fun playing and snuggling and enjoying this time!

We are pretty much home-bound until May. Her wonderful doctor has told me that I am not to take her out to Church, shopping, etc. until he gives his okay. Hopefully the weather will cooperate so that we can at least go on some walks or to the park, otherwise I'm sure we'll go stir crazy. Just a side note on her doctor. Dr. Black was assigned to Elaina the day she was first admitted to South Davis. He has been the doctor that has signed all her orders, adjusted her meds, and basically helped her to this stage in her life. I am VERY fortunate that in addition to his patients at South Davis, he also has a private practice in Bountiful. I am so glad that Elaina will be able to continue in his care. He's also Ben's pediatrician now that we've moved. I feel very good about having a doctor that fully understands our situation and knows Elaina's history so well.

This is just a quick post, but I wanted to tell you all Thank You for all your prayers and well wishes! What a journey this has been. I am so looking forward to this new chapter in our lives. We still have some obstacles to overcome, but I'm ready for the challenge (I think!).

I will leave you with a few pictures from our Easter weekend!
HUGS!!!! Thanks for checking in on us!
Hollie, Ben and Elaina

Word of the Day

2010-04-02T06:55:00.003-06:00

HOME!

That's right! You heard me!

All the orders have been written.

The room has been packed up.

Miss Elaina will be giving her final farewells to the wonderful staff at South Davis Community Hospital this morning!

My emotions are ALL OVER THE PLACE! It seems like I can't stop the tears from flowing. What a journey this has been... She's been admitted either at Primary's or South Davis for nearly TWO years! (Her last official stint at home was in May of 2008).

I've had the pleasure of meeting many, many, many fabulous nurses, CNA's and Respiratory Therapists. I've had the opportunity to meet many wonderful families and make lifelong friends. With that said, I am so excited for this new chapter in our lives!

Elaina was able to spend the last 2 weekends at home as we "transitioned". She was an absolute joy. Such a happy girl. She KNOWS what home is. She KNOWS she belongs here. In fact, she's showed me in no uncertain terms that she did NOT appreciate me taking her back to the hospital. She is going to be SO thrilled to be home to stay. Ben is super excited to have his sister home. He's on her side, you see. He did his best the last two weekends to convince me that Elaina didn't have to go back to the hospital at the end of our weekend visits. I heard him whisper to her when she was upset about being back in the hospital "I told Mom not to bring you back here. It's all her fault..." Little stinker.... :)

I've hesitated in making this announcement, because of the Jinx factor... In the past, every time I mentioned the "H" word, something would happen and instead of coming home, it would slip further away. But this time it's real. She's coming home to stay!

Wow. We're going to have so much fun! We're going to make so many wonderful memories, and actually get to LIVE without so many wires and monitors!

Well, I've got to GO. My little Bug is waiting for me. :)

HOME........ where the Heart is!

Love,
Hollie, Ben and Elaina

Awareness

2010-02-08T23:39:00.002-07:00

February 7th - 14th is CHD Awareness week

* Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in many cases the cause is unknown.

* Nearly 1 out of every 100 children born, are born with a CHD! Congenital heart defects are the #1 cause of birth defect related deaths, and the leading cause of all infant deaths in the United States.

* In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

* In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. However, only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.

I've been dwelling. Dwelling on the miracle that is Elaina. How blessed I am to have her here on this earth, when others have lost their valiant fights. I'm drawn to the blogs of families that have had to face the loss of their sweet Heart Hero's. My heart breaks for them, I cry for them. I pray for their peace and comfort.
I wonder about the future for Elaina. I have hope. Hope that she will be able to come home and make memories with me and Ben. Hope that the doctors will find answers or solutions for her heart that will extend her life. Hope that she will qualify for a heart transplant (this also comes with sorrow and anguish at the thought that another family would have to lose their child to save mine).
There is just so much uncertainty. I wish I could freeze this moment. Right now. She's stable. She's stronger than she's ever been. She has such an amazing sparkle in her eyes when she sees me..... I walked into her room today to find her "rocking" on all fours in her crib. She tilted her head to the side to look at me, then came the smile. The smile that told me more than any words could, that she loved me and was happy to see me. I lowered the crib rail and she launched herself sideways into my arms and gave me endless kisses. So sweet! So precious! We sat and snuggled. Talking to each other, playing pat-a-cake, singing songs ... until she melted into me and drifted to sleep. Nap time. I love being a part of that. There are days that I don't visit her until later in the day or the rare days that I miss (because I'm taking care of a sick Ben or have other appointments) and the nurses will tell me that she didn't nap, or stayed awake later than usual. She was waiting for her Mommy. It kind of breaks my heart that she waits for me. That she loves and anticipates our snuggle time as much as I do. {sigh}

RSV and Flu season will end soon, and then she will be home. HOME!

I am so blessed to be a Mother. I love my children with all my heart. They are my reason for being! They bring me joy and fulfillment. I guess I just needed to share this. To put it down, to remember how important they are to me. I learned a long time ago to take nothing for granted. Some of the things we value most can be taken from us in a heartbeat and our lives will be forever changed. I also think that our lives can be forever changed for the better if we embrace our challenges and trials and turn them into strengths. As I've pondered the happenings of the last 2 years with Elaina, I've decided that I wouldn't change anything. Don't get me wrong, it's been hard. Emotionally draining, harder even than when my 1st husband passed away unexpectedly. But I've grown from it. I've learned life lessons, and had my testimony of the Savior tested and strengthened more than I ever thought possible. My family is a gift from my Heavenly Father and I am so grateful for them. Thank you for all your love, support and most of all for your prayers. And thanks for checking in on us!
Hugs!
Hollie, Ben and Elaina

Happy Birthday Baby Girl!!!!

2010-01-21T01:18:00.000-07:00

ELAINA IS 2!!!

That's right, we celebrated her 2nd birthday this month. It was a fantastic day. Ben and I put up some streamers and a Happy Birthday banner in her room the night before, so that everyone would know that it was her birthday. I wanted to spend every minute of the day with her, and I was able to sneak over while Ben was at school for some one on one Birthday girl time for about an hour and a half. When I walked in the room, she was all smiles. I told her "Happy Birthday!" and got a HUGE grin. She knew it was her very special day. I pulled her out of her crib and was able to rock her for her nap. It was super special. I had to leave to pick up Ben from school and get everything for her party that evening.

This was her cake! It was made out of cupcakes, so cute!

She loved it when Grandma put her in her Bumbo seat on the table so that she could be in the middle of things!

Here she is checking out her cake. She has a very strong aversion to food, so I couldn't even get her to touch it. But I think she liked that it was Little Mermaid. Have I mentioned that The Little Mermaid is one of her favorite movies at the moment? Yeah. She's so cute when its on. She gets very tense and anxious whenever Ursula is on, and loves Ariel. I think she likes Flounder and Sebastian too, she smiles and claps a lot when this movie is playing. It's fun!

She's pushing my hand away because I was trying to get her to taste the frosting. I smeared it on her lips. :) She made it known that she did not appreciate it! Silly girl!

Of course once the frosting was on HER fingers, she didn't seem to mind too much!

She liked opening presents. I think she remembered Christmas with all the wrapping paper and tissue paper. Ben picked out a Little Mermaid toy for her. She's giving it "kisses". :)

It was a very fun party. We held it in the day room at South Davis. Her roommate Sherlynn (you can see her in the picture above) and one of the other patients, Caroline, came in and joined the party as well. She was so happy the entire time. I don't think I've seen her smile so constantly before. Don't get me wrong, she smiles A LOT, but these smiles just didn't seem to stop. It was a very special day, for my very special girl.

Back in bed after the party with her new Cookie Monster. Still smiling and happy!

Elaina has come so far in these 2 years! She weighs 22 lbs! She rolls over like crazy. She still isn't crawling, but she's constantly on her hands and knees rocking back and forth. She can nod her head "yes" and claps when she's happy or likes something. We're working on teaching her some signs, so that will be fun to see this year. She's starting to bear weight on her legs and can sit unassisted for several minutes at a time. We still have a lot of catching up to do, but she is such a miracle that I am excited to help her reach these milestones.

Happy Birthday sweet girl! I love you!!!!!!

p.s. I have more birthday pictures on my Facebook page. If you'd like to see them, click here
I will be adding some more to Facebook next week that my parents took, so feel free to check back if you'd like!

Catching up and the Holidays!

2010-01-19T22:25:00.004-07:00

WOW! So much has happened since my last post, and the days just seem to get away from me. So let's see if I can do a "quick" catch up. Ha!

Since I last posted:

Elaina had a cardiology appointment. It went well. They told us to come back in 6 months! She had an echocardiogram (not sedated) and was a very good girl. She held very still as long as I was holding her hand and she had her pacifier. She kept sneaking little looks at me, and would smile, as if she knew she was being good. Too cute. The results of the echo were EXCELLENT! In fact, the cardiologist said that her heart function looked to be in the NORMAL range for her stage of heart repair!!!! WITH GOD ALL THINGS ARE POSSIBLE!!!!! What a tremendous answer to many, many, many, many, many prayers offered by many people. Our Cardiologist was unavailable due to an emergency, so we got to see one of the many cardiologists that took care of Elaina during her long stay in the PICU. In fact, it was the same doctor that performed her coil occlusion in July of '08. He hadn't seen her since her discharge from the PICU, and at that time, there still was not much hope for her recovery. He was amazed by her color, her saturations (from 80-90% on 1 liter of O2), and her overall state of health. He said that they weren't able to get a very good look at her pulmonary arteries, and that the best way to determine their function would be in cath lab. He thought they "might" be able to stent them open at this point to allow better blood flow and help her become eligible for heart transplant. This is still a big IF, but at least it's something that's on the table. We'll discuss it further at her next appointment. All in all, he was very impressed with Miss Elaina! Way to go baby!

We had a wonderful Thanksgiving spent with family. This was the first time in over 10 years that I was able to spend Thanksgiving with my parents. It is really wonderful that they now live 5 minutes away from me and that I'm able to spend time with them! After the amazing dinner, I was able to go pick up Elaina and take her to Grandma's for the rest of the evening. She loved it! She was able to roll all over the floor and got lots of loves! She actually had a couple "stranger anxiety" moments, that's new! But in a good way, it means that she's finally reaching some developmental milestones.

Elaina with Grandma on Thanksgiving.

CHRISTMAS!! We had lots of fun the month of December. Santa made it to South Davis 3 times, the kids there were super spoiled. Elaina wasn't scared of Santa in the least. Ben was pretty nervous the first visit, but by the 3rd time, he was a pro. It was so cute. He's at that age when he's hearing things at school and trying to figure the whole Santa thing out. Going in for the 1st visit, he was trying to convince himself that there was no Santa, that it was all a hoax. He was pretty shy when he saw Santa, but sat on his lap and asked his little heart out. Then, as we were leaving it was starting to snow. He looked at me, and in a the voice of true Santa believer said "He IS real Mom! It's snowing, he brought the snow with him from the North Pole! Mom, the Jolly Guy is real!" Hahahahaha! He makes me laugh. So, the big news for Christmas? Elaina got to come home for 3 whole days! Yay! I brought her home the morning of the 23rd and got to keep her until the afternoon of the 26th. We did lots and lots and lots of "normal" things. Played (and napped) on Mommy's bed, lots and lots and lots of floor time, even baked cookies together on Christmas Eve. It seems like it took forever for Christmas to get here, but once I got her home the time just flew. The first night was a little rough, she was unsure of her new surroundings, but by day 2 she was loving being at home. I didn't even mind that she wanted to be awake and play at 6 am. It was precious time together and I will always cherish it! It really was good to have her home for those few days and it makes me anxious for the time that the doctors feel she can come home for good. It will be a lot of work for this Mama, but having her here made my home feel complete. Here are some pictures from our Christmas season. I have more posted on Facebook. If you want to see them, simply click here.

Ready to visit Santa

Santa!

Snuggle time with Ben after visiting Santa.

Hanging out in her crib while we put up the tree in her room.

Pictures from HOME!

Coming home was lots of work! After playing on Mommy's bed for a little while, it was time for a nap!

Floor time!

Christmas Eve
Ben got Operation from Aunt Kathryn and Uncle Don and Elaina got a dolly.
It was lots of fun to have visitors at our house!

Christmas morning.
Playing with some of her new toys in her exer-saucer.

I took this one when we were loading up to take her back to South Davis. I love how she has her hands folded up and the sweet look on her face. I wish we could have kept her home, but the time will soon come!

I just need to say what an incredible Holiday Season we had. There were so many things to be thankful for, so many blessings to count, and so many miracles to witness. It was magical. We truly created some priceless memories and I am so grateful! I love my children and I love that we were able to celebrate the birth of our Savior together as a family. I don't know what's in store for this next year, I only hope that we will continue to see miracles and that our love for each other will strengthen and grow.

Lots of fun going on in January, but I think I want to give it a post of it's own. :) This milestone deserves it. Also, it's really late and if I don't post this now, it won't get done! Look for a new post in the next day or so! (I've got all the pictures ready!)

21 Months Old!

2009-10-13T10:45:00.000-06:00

Fall is in the air. I cannot believe how fast time is going by! Elaina turned 21 months old on the 11th. She is doing SO well! The last couple months have been crazy busy. Ben and I finally moved closer to Elaina. We're just a few minutes away now, and I LOVE IT!!! It has been SO wonderful to be able to spend more time with both of my kids. Ben started 1st grade this fall, and he's loving it. He turned 7 on the 21st of September, and is now missing his 2 front teeth. Since he's in school all day, and we live so close, I've been able to have some visits with Elaina in the afternoons, pick Ben up from school and take him to South Davis to have a visit as well. There are also days that I go visit with Elaina while Ben is at school and then can have some quality 1 on 1 time with him as well. Ben is adjusting to homework and the move. It was hard on him to leave friends and his comfort zone, but he's resilient and seems to be adjusting well.

Elaina is just getting so big! She's decided that she wants to be mobile. She spends her days rolling around in her crib or a playpen by the nurses station. She can roll all the way over, from front to back and back to front. Once on her tummy, she'll push up on her arms to check out her surroundings. The nurses have told me that they've caught her on her hands and knees rocking back and forth, attempting to get ready to crawl, but as soon as she realizes that she's being watched, she stops doing it. I've never been there to catch her in the act, but I will keep trying! One of these days I'm bound to walk in and see her in action. I've taken to walking in with my camera in hand so that I can capture those kind of moments. And moments like this:

A lot of Elaina's energy is also going to teething! She's now working on 10 teeth! Seems like they all decided to come through at the same time! She's cutting 3 on the top, 3 on the bottom and 4 molars, one in each corner. Poor baby! But she's chewing on everything in sight and still smiles all the time.

I tried to get a picture of the teeth, but got this cutie smile instead. :)

She's thinking about rolling over.....

Ben's first day of school. The timing of our move was not the best. Ben started first grade at his old school in Orem, and then we ended up moving 2 weeks later. I debated keeping him out and having him just start once we moved, but decided that he would miss so much review in those 2 weeks that it would make it harder on him in the long run. He's a trooper, and did really well with the transition. It's always hard to be the "new kid", but he's starting to make friends and seems to enjoy the new school.

We were able to get one last weekend in with the family at the lake. I think Ben could live in the sand and water! He's fearless, and that scares me! Bear Lake stays shallow for quite a way out, and there were a couple of times that he really freaked me out because he went so far away. I had to haul him back to shore and threaten loss of water privileges if he didn't stay close. All in all, I think he had a wonderful time and we loved being able to spend time with family as well!

One of the advantages of living closer to Elaina is being able to participate more in her daily activities. Ben and I were fortunate to be visiting one night when it was bath time! Since I didn't have to worry about an hour drive home, we were able to stay and help with her bath. They put her on a gurney and basically shower her with a hand held shower.

She loves bathtime! She tries to eat the washcloths and splashes in the water!

All clean and pretty after the bath, she's showing us her tricks. If they put her pulse ox probe on her right foot, she pulls it off. For some reason, she'll leave it alone if it's on her left foot, but her right foot is the one she puts in her mouth, so she pulls until the probe comes off. Then she eats it. Of course it alarms, so the nurses come in and tell her she's a stinker for pulling at her probe and making it alarm, but she flashes a smile or two and since she's so cute she gets away with it!

Elaina continues to make so many improvements in her development. She's making up for lost time! She LOVES to be upright. She has fun in her saucer, she loves to sit in it and play with the toys. But she loves, loves, loves to sit in her Bumbo seat in her crib and watch Little Mermaid. The nurses will put her in the seat for a couple of hours at a time. Her back and neck muscles are getting so much stronger. For the longest time, it was difficult for her to hold up her head, even when she was upright. Her head would lean forward, with her chin on her chest. Sitting in the Bumbo has really helped that. She's got much better neck control and is sitting taller every day.

This picture was taken about 5 weeks ago. Notice how she's upright, but leaning forward a little bit?

This was taken a couple of days ago. She's much more upright and is holding her head up better.

Such a happy girl! She's even started laughing out loud! Not every time, but if she's in the right mood and feeling ticklish, she will give a giggle or two! She loves to play pat-a-cake, she loves to read books, she loves to play with her finger puppets. She likes to watch her movies! She's such the couch potato! Nemo is still a favorite, but I think that Little Mermaid is a close 2nd, if not tied for favorite movie. It's funny, if other movies are on she'll still play and interact and fall asleep if she's tired. BUT, if Nemo or Mermaid are on? NO WAY! She gets grumpy if you try to play or sing or take her attention away from "her" movie. It's cute. Kinda. Unless Mommy wants to play.......

And her newest accomplishment? See for yourself:

That's right!!! Sitting up, un-assisted! She lasts anywhere from 1 to 5 minutes. It was hard to get this picture, because she kept trying to grab the camera and it would make her fall over. She's so proud of herself (and she should be!) whenever she does it. Too cute!

Elaina has a cardiology appointment at the beginning of November. They are going to do an Echo this time, so I'm a little nervous. She seems to be doing great. Her sats are high, she ranges from 82-93%. I have noticed that her fingers and toes go blue on occasion, but she pinks back up within a few minutes. Its usually when she first wakes up from napping, so I don't know if that's anything to be concerned about or not. I'll talk to her Cardiologist about it, just for my peace of mind.

Well, thanks for taking the time to check in on us! Most of my boxes are finally unpacked, I have a few to sort through in my closet and some pictures to hang, but then we'll be all moved in. I'm hoping to be in a better routine soon, so hopefully I'll be able to post more often. Not having to drive so far really has it's advantages.

Hugs!
Hollie, Ben and Elaina

The one with all the pictures...aka the long overdue post

2009-07-17T14:39:00.013-06:00

What have we been up to, you might wonder? Why haven't I posted for so long? Settle in, this is a long overdue catch-up post!

WELL, for starters, I was having some issues with my lovely computer. The fan went out, and so it decided it didn't like to stay on for long periods of time. Not fun. So, I got a new computer. I wanted to update, but then life got busy! Good busy. Not like last summer. Oh my. Last summer was a living nightmare. We've been having lots of fun and excitement this summer. Elaina is one happy little girl!

We love to play with her and tickle her until she laughs!

I took Ben to ride on Thomas the Tank Engine. I've taken him every year since he was 3. He loves, loves, loves going! There are all kinds of fun activities, trains to play with, stories being read, a petting zoo, and loads of other activities. Not to mention a Gift Shop that will leave your wallet empty.

Riding on Thomas

Ben and Thomas!

Then, of course, we've been spending lots of time with our Elaina-bug. Now that school is out for the summer, I can take Ben with me as often as I like. I don't have to worry about finding a baby-sitter or rushing back to pick him up. It's good for all of us!

Ben and Elaina. She's not so sure about being out of Mommy's arms.

Elaina loves to play in her highchair. They also let her play in one of those saucer things, but I've never been there when they have her in it, so no pics of that yet. Her head control is getting much better. She's able to sit with assistance now for 2 -3 hours at a time.

We went to our Cardiology appointment. It was good. In the words of our Cardiologist, everything looked "Okay". Elaina's saturations have been very good. She's still on a liter of oxygen and will remain on that much for now. She has times that she will "high sat" at 90 or so, but he said that was good for her brain to get a little extra oxygen. She usually sats between 82-87%, which is very good all things considered. He said that he doesn't need to see her for another 6 months! Great news! He made a few changes in some of her meds, took away 2 of her diuretics, and said that once all these changes have taken effect I can make arrangements for her to come home! Yay! He also said that he would like me to think about taking her back to Cath Lab to find out exactly what her heart function is looking like. That won't be until next spring or so, BUT he said that depending on the pressures, etc. that he might consider talking Transplant! WooHoo! I'm not putting all my hopes on this one, but if you remember right, last fall I was told that there were no more surgical options available for her, and now he said that she may be eligible for a transplant! He told me to focus now on her quality of life and not worry about the quantity. He seemed pretty pleased overall with how she was doing. Go Turtle-bug! She sure showed them! :)

All hooked up to the EKG machine.

Back at South Davis after her Cardiology appointment.

So, Ben and I have continued to smother her with love and kisses!

THEN, I got a call from the Recreation therapist at South Davis. She was organizing a trip to the Hogle Zoo for several of the children, and wondered if Ben and I would like to take Elaina with them! Duh. I jumped at the opportunity to do something out of the hospital with both of my kiddos. In all reality, this was Elaina's very first outing. Lifeflights and trips to the doctor/hospital don't really count as outings in my book!

She wasn't so sure of the sun at first....

In fact, she was pretty unhappy with the whole situation.

And she was tired from having to get ready so early. (She's like her Mommy, NOT a morning person!)

Once we started walking, she fell asleep. It felt so, normal, to be pushing a sleeping baby in a stroller.

She only napped for about 30 minutes.

She HAD to hold on to her pacifier.

Ben loved being there with his sister, too!

Happy girl in the shade!

We stopped for lunch. Ben and I brought a 'picnic' from home. Elaina is helping the nurse give her a bolus feeding through her g-tube.

She's been fed, now it's time for a diaper change! lol :)

Saying goodbye at the end of the day. The group from South Davis was only able to spend about 4 hours at the Zoo. Ben and I stayed behind once they left so that we could ride the train and carousel. There were also a few exhibits that we couldn't go in, because they were not accessible for strollers/wheelchairs. It was so sweet, Ben did not want Elaina to leave. He cried and cried once she was put back into the SDCH van. It was so sad to him that she had to go back to the hospital and didn't get to stay and play with us. What a good big brother he is!

Then Ben and I got to go to one of our favorite places on earth, Bear Lake! Just about the whole family was there, except my brother who is working in Alaska this summer. We had so much fun! It was raining and cold most of the time, so we didn't get to swim or go down to the water, but we played lots of games and watched movies.

The sun came out the day we left! Figures!

That's my happy guy!

My cute niece Kate rode with us to the lake and on the way home. On the way back we decided to stop in and visit Elaina-bug. She sure loves her cousin Kate!

Kate, Ben and Elaina

Ben and I have been able to visit 2-3 times a week. Making sure to give Elaina lots of hugs and kisses!

She finally let me get a picture of her two bottom teeth! She's also got 2 on the top, but they're coming in slowly and hard to see in pictures. She's got a great bite! She likes to grab my hand and chomp on my fingers. I love letting babies teethe on my fingers.... :)

She's very good at pulling off all her leads and wires.

She loves to be tickled! She's starting to laugh out loud now. Too cute! Her vocal cords have been damaged from all the intubations, so her voice is extremely soft. So sweet to hear her try to 'talk' and laugh now!

She's learning to pose for the camera....

..... and likes to make faces!

Elaina did so well at the Zoo, that we got permission to take her out any time we like. I get unlimited day 'passes' with her and my insurance will cover 10 overnight stays. I'm going to save the overnights for our transition home! My family (on my Dad's side) has a wonderful 4th of July/summer tradition. Each year we go to a fish hatchery in North Ogden, and catch trout. We then go up the canyon and a have a fish fry, with homemade root beer and then go tubing down the river. It is a super fun tradition that has been going on for over 60 years. Well, I wasn't sure that I wanted to take Elaina up the canyon, since cell phone reception is not so good up there, and if something happened, emergency service wouldn't get there very quickly. But the majority of my family had never been able to meet her since she's been in the hospital most of her life. So I decided to take her fishing. Intermountain Healing Hearts, the support group that I belong to was was having their annual summer picnic at Primary Children's that same afternoon, so I figured I could take Elaina to both activites! I picked her up at 8:30 in the morning, and didn't take her back until 8:30 that evening. We had a wonderful day! It was so nice to be able to go out and do "normal" family activities!

Elaina loved being outside. She sat in the shade and clapped when the wind would blow the leaves in the trees! She saw her first duck fly overhead and her eyes got huge as it swooped in for a landing!

Ben fishing with my mom, my brother-in-law Craig and my niece Kate.

Ben and Kate.

She was such a happy girl!

Back at South Davis, after a long day out with Mom and Ben. She still looks happy! She only slept for about an hour or so all day. She didn't want to miss a thing. The next day, however, was spent catching up. The nurses told me that we must have worn her out, because she slept most of that day!

She continues to just be a happy girl! She's got the sweetest disposition! She's had a rash on her chin, and we've tried a couple different lotions and ointments to clear it up, but that's the extent of her problems right now! Unbelieveable! A year ago, I was making the hardest decisions of my life, and now I have this:

and this:

On July 11th, Ben and I went to South Davis to celebrate another milestone for our sweet Elaina.

She is 18 months old!

We took her for a walk to celebrate.

South Davis has a small playground for the residents, so that's where we headed. Turns out, it's just swings, so it didn't really work out well for Ben, but we had fun getting some fresh air for an hour.

Outside and loving it!

Back inside, we stopped at the aquarium in the lobby. Elaina wasn't very sure about it until she saw a "Nemo" swim by. She still loves watching Nemo and has added Little Mermaid to her list of favorite movies.

Getting ready for bed with one of her favorite CNA's. She had another fun and busy day with Ben and Mom!

We sure love all the wonderful nurses and CNA's at South Davis! They take such good care of my little Elaina-bug!

So, that's a little bit of what we've been up to. Ben and I have both had some illness and loads of doctors appointments, but I'll save that for another post. I'm hoping to find a place in Bountiful in the next few weeks. As soon as we're settled into our new place, Elaina will be able to come home! I hope that we can have a smooth transition. Life just keeps throwing curve balls.....

Anyway, thanks for checking in on us! I know that I'm living a miracle and a blessing in my life. My children are so precious to me. Thank you for all your prayers, support and encouragement. We wouldn't be here without them! Have a great day!

Hugs,
Hollie, Ben and Elaina

Phew!

2009-05-19T23:11:00.005-06:00

It's been awhile since I posted. Sorry, I've been crazy busy! I'm finally moved out of my house in Orem and am looking for a place in or near Bountiful. For now, Ben and I are still staying with my friends Colleen and Najee. School ends next friday, so I'll be able to have a little more flexibility with my move after that point. I'm hoping that things will go smoothly and that we can be in our new home soon.

We had a pretty good Mother's Day. Ben woke up that morning not feeling well, and by mid-day had a fever. He slept a good part of the day and had very little appetite. Needless to say, I didn't make it up to Bountiful to see Elaina. Monday morning, he was full of energy, and even though he still had a yucky nose, I decided to send him to school. No problems Monday. I sent him to school Tuesday. He came home and told me he had a headache and started with a really bad cough. By bedtime he had another fever and was throwing up. He had a really rough night, so I decided to take him to the doctor on Wednesday. Well, the doc didn't like that his chest still sounded crackly after he coughed. So Ben got to have his first chest x-ray and the doctor determined that he had a case of Pneumonia! Poor kid! After a 5 day course of anti-biotics, he's getting back to normal. His cough is still lingering, but it's less frequent and he's back up to full energy.

With all the time I spent moving and then taking care of Ben, I wasn't able to see Elaina until this past Sunday. She's so cute. She has finally figured out how to get the nurses attention. She can pull off her leads! Of course, being the sweetheart that she is, she'll either put them back on (the sticky ones) as soon as the nurse comes in the room, or she'll smile and hand them to the nurse to put back together! She knows how to get attention! When the alarms go off, the nurses come in! It cracks me up. She's still trying to roll over, but doesn't like that her g-tube gets in the way. She also likes to try and pull herself up by grabbing the rails on her crib. She doesn't get very far, but she's getting stronger. I really think that her high chair has helped a lot. She loves to play with toys and watch movies in her chair. Sometimes she's out in the hallway so that she can see all the action and sometimes she's in her room watching movies with her roommate. Too cute! Her upper body strength and stability are increasing. She likes being upright! As I was holding her on Sunday I noticed that she would try to pull herself more upright. When I sat her up on my lap I got a great big smile! Little baby steps I know, but I am so proud of her!

I realized that Monday (the 18th) was a 1 year anniversary. It was the date she was admitted to Primary Children's last year. I can't believe it's been a whole year since I've had my baby girl home. What a year it's been, too! Crazy. Hopefully she'll be home soon and this can be all be behind us. She's getting there, my little turtle-bug!

This is just after her admission to Primary Children's last May. Dated May 19th in my photo archive.

This is now. Holy cow, what a year!

Well, that's about all I've got to report for now. We see Cardiology on the 27th, so I should have another update then. For now, we'll just keep on keeping on! Have a wonderful and safe Memorial Day weekend!

Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Bout time!

2009-04-27T22:29:00.006-06:00

Okay, this post is long overdue. But in my defense, there has been a lot going on! I'm trying to get moved out of my house in Orem. I've moved in with my friends Colleen and Najee temporarily. Hopefully this will allow me to be able to save up the necessary amount of money to get moved up to Bountiful once school is out. Between working, spending time with Ben and driving up to spend time with Elaina, I've just been too tired to post. Besides, I wanted to share some pictures, and this way I get to post LOTS of them!!! Anyway, we had a wonderful Easter. Ben was sick, so I didn't take him up to see Elaina. I celebrated Easter with her on Saturday and then came home in time to color eggs with Ben and spent Easter day with him. It was very nice.

Elaina has been doing great! She is such a happy girl! She's just full of smiles, and I even get small giggles from her if I tickle her just right! We've started letting her sit up in a high chair for a little bit each day. She likes to lean to the right, so she gets a toy or something soft by her side to help her sit up straight. Friday was the first day, and she only lasted about 1/2 hour before she started to cry and wanted out. The nurses put her back to bed and she fell asleep in minutes. Sitting up is really hard work! Saturday she lasted an hour, but she only made it 45 minutes both Sunday and today. I don't have any pictures of her in the chair yet, they always put her in when I'm not there, but hopefully I'll be able to get a picture some time this week. I took Ben with me on Sunday and it was a great visit. We put Nemo on and they watched it together. Elaina smiled and "talked" (or rather grunted!) through the whole movie. It really is her favorite, she gets so excited at certain parts, she'll kick her legs and then extend them out straight and reach for the tv. It was fun to see both of my kids interacting together. They love each other so much! I had Elaina on my lap and Ben reached over to give her a hug. As he was hugging her, she leaned in and gave him a big wet baby kiss right on the cheek! I think it made his afternoon! Then, as we were getting ready to leave, I put her back in her crib. She rolled to her side, grabbed one of the bars on the crib railing and rolled herself onto her tummy. She just looked at me, like "and what do I do now?", so I rolled her onto her back, and she immediately rolled towards us again. Ben decided that meant that she didn't want us to leave, and I'd have to agree. It's SO hard to leave her! I'm still excited at the prospect of bringing her home soon. She's doing well, and hopefully it will continue!

Well, it's getting late, and my computer takes forever to upload photos, so I will leave you with these! This is what we've been up to!

My pretty little Easter girl!

Sitting with assistance! She looks so pink in this one... :)

Pulling her sock off. They can't put her pulse ox on that foot because she'll pull it off. She actually managed to get her toes in her mouth while I was holding her on Sunday. She seemed very proud of herself when she did it too!

This is my sweet Aunt Janet. She's my Dad's oldest sister. Elaina and I were thrilled that she came to visit!

She's got the "touch". She had Elaina asleep within a few minutes. Elaina just loved being rocked by her!

How sweet, Elaina is just holding onto Janet's hand. It was a wonderful visit!
(Thanks for bringing her Marney! I should have taken some pictures with you too!)

The aides were running behind schedule this day! I got there and she was still in her nightgown with her crazy hair! Too cute!

Such a happy girl! She's reaching for my camera strap. If I'm not careful she grabs it and tries to steal my camera so that she can eat it. :)

Mom and Elaina, having some snuggle time! I love the dress she's wearing with the ladybug. I bought one for her when she first had her g-tube, and I swear this dress runs small, because after it was washed, it didn't fit her. So I rebought it in a size 3T, thinking it would fit for awhile, and it still seems to be a little on the snug side to me. Hmmmm, maybe she's just bigger than I think she is!

Loves with big brother. So sweet!

So Ben loves to hold his sister. He hates that I always take my turn first (what can I say, I miss her too much to hand her over when I first get there! I need to get my kisses in first!) Anyway, I finally gave him his turn and after holding her for about 10 minutes, he said, "Mom, Elaina feels good in my arms! I like how she feels!" He is going to love having her at home!!!

This is my favorite picture of them all! I LOVE her smile! She is so happy to be in Ben's arms! It just melts my heart!

Well, thanks for checking in on us! We're still trucking along and someday soon I'll be able to post more often, because we'll all be under the same roof!
Hugs,
Hollie, Ben and Elaina

A Light at the end of the Tunnel....

2009-04-09T22:23:00.002-06:00

I had a Care Conference at South Davis.

It was WONDERFUL!!

Here's the best part:

Her doctor looked at me and said, "So, when do you want to take her home?"

YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!
Time for a BIG Happy Dance!!!!!!!!!!!!!!!

Okay, so I can't take her home just yet, but it's out there. We're discussing it. It's going to happen. She still needs to be cleared by Cardiology and we don't see them until May 27th. In the meantime, I get to start learning her cares (g-tube, etc.), they are going to fine tune her meds, and Elaina will be working more with Early Intervention. If things go as planned, I could have her home in early June! I am SO excited! The best part is that she won't be coming home on Hospice, she'll just be coming home.
HOME!
Okay, can you tell I'm little excited about this? As long as she continues to be stable. As long as she continues to sat well. As long as she doesn't have any setbacks, she's coming home. I just can't stop saying it! She's gaining weight so well that they are going to cut back her calories. Everything that was talked about in the care conference was positive.

Thank you all so much for your love and support. I am so grateful for a kind and loving Father in Heaven! I am so grateful that He has allowed Elaina to blossom and grow. I know that it is through His Mercy, His Love and His Divine Plan that she is here. I am so grateful for my Savior. What a beautiful Easter season. My thoughts dwell on the beautiful loving gift that the Savior gave us. He suffered for all of us, He knows the pain that Elaina has gone through, as well as the grief that so many us of have felt in our lives. I know that God lives and that He loves us! I am so Grateful that my heart is overflowing!
Hugs,
Hollie, Ben and Elaina

It was teeth!

2009-04-02T23:25:00.006-06:00

Elaina-bug is pointing at......
Her new tooth!! That's right! On the top. In fact, she's cut 2 teeth since I last posted. That brings her total number of chompers up to 3. Two on the bottom and now one on the top. She's still got a little bit of a runny nose and a pretty icky cough, but I'm really blaming it all on teething. Who knows, maybe the other top tooth will decide it wants to make an appearance soon!

Other than some teething grouchies (that's to be expected), Elaina has been doing great! There was some confusion with the nurses on how to administer her feedings, but it finally got worked out and Elaina seems to be tolerating them very well. We went to the GI doctor on Wednesday. He pulled the long tube out and replaced it with a nice mickey button. It's so much nicer to hook her up to for feedings! He said that things looked great and we only needed to come back and see him if she started having problems! Yay Elaina!!!

After we got back from our appointment with GI at Primary Children's, we were able to meet with Early Intervention. Elaina meets with Carole a few times a month for physical, occupational, etc. therapies. When Carole comes in, she also works with the staff to teach them what to do with Elaina so that Elaina is having some type of therapy daily from the nurses, respiratory or Mom! This visit was also our 6 month review. I can't believe that Elaina has been at South Davis for 6 months, holy cow! When we had our evaluation 6 months ago, Carole determined that Elaina was developmentally about 4 months along. This was in all her areas of development. When we evaluated her this time, here's what we came up with:
Gross Motor 4 months old (still)
Fine Motor 9 months old
Cognitive 7 months old
Language 6 months old
Self Help 12 months old
Social/Emotional 7 months old

That all averages up to be about 7 1/2 months old. Very good progress, considering that she's only been without her no-no's for 2 months! Carole gave me some good ideas for "play" time and wants us to start learning some sign language. Elaina doesn't use her voice very much, and when she does it is SUPER quiet. We think that her vocal cords sustained some damage from all the intubations, etc. She is making some coo's and grunts, and I finally heard her giggle the other day, but her language skills are pretty far behind. As of right now, we don't have any appointments up at Primary Children's until the end of May when we have a Cardiology follow up. I'm kind of excited (and scared at the same time) for this appointment. I feel like she's doing so well, but I'm worried to find out otherwise. Oh well, it's too far away to start stressing out now, all I can do is continue to pray that Elaina will get stronger with each passing day. Her saturations have been wonderful. She 's almost always in the 80's (unless her naughty fingers have pulled the canula off!), and she even set her alarm off when I was holding her yesterday because she was at 92! The alarm sounded on and off for about half an hour and then her respiratory therapist decided to change the parameters so that it would stop alarming!

Anyway, that's what happened in our world this past week. Ben is doing great. No more seizures that I've been aware of. He is very anxious for some warm weather. He's an outside kind of boy, and winter makes him very restless. He's got some severe spring fever! I've started my house hunt again in Bountiful. I'm hoping to find something that I can move into by the beginning of June. School is out at the end of May, and I'm pretty wishy washy about transferring Ben to a new school this close to the end of the school year. Part of me wants him to stay in the same school, with the same teacher and friends, but part of me thinks that he'd make new friends quite easily in a new school, even if it is at the end of the year. I guess I'll just have to see what happens and have faith that things will work out the right way.

On a sad note, I learned today that Dr. Hawkins, Elaina's heart surgeon was diagnosed with pancreatic cancer and given 3 months to live. He has resigned his post as Chief of Cardiothoracic Surgery. I will be forever grateful for his abilities and his dedication. He has touched many families and saved many lives. Please keep him and his family in your prayers during this difficult time.

Well, I'm heading to bed now. My eyes don't want to stay open much longer. Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Routine

2009-03-25T21:40:00.004-06:00

Time indeed marches on. You may have noticed that I've added a spot for Paul Cardall's benefit concert. Paul was born with Tricuspid Atresia as well as some other defects and has had many surgeries during his lifetime. I've met Paul, and he is currently awaiting a heart transplant. He's a member of the Intermountain Healing Hearts support group that I belong to. Anyway, please support the concert if you're local, or stop by his blog if you're not.

I was able to attend the funeral services for Mercydez, and it was truly a blessing to me. Nic and Ashley had such a blessing in their little angel. You could feel her presence there, the Spirit was so strong. I am still struggling with their loss and they continue to be in my prayers.

Things continue on in my life. Sometimes I start feeling like my life is so boring, because I'm in a routine, but it's far from boring! The stresses continue and so do the blessings that come from the trials. Ben had another seizure. Right now I'm not sure why. The doctor wanted me to give him a multivitan with Vitamin D and his neurologist wants us to follow up with him in a couple of weeks. If the seizures continue I may just have to adjust the dosage on his medication. It's dosed by weight and since he just went through a growth spurt, he may be outgrowing the dose prescribed to him last November. The kid's a rock! He weighs 66.4 lbs! He is one solid little guy! Other than the seizure, he's doing great and loving kindergarten. He's slowly learning how to read. He's struggling a little bit, he's convinced that the pictures tell the story, and so he doesn't want to look at the words, but we're working on it. He'll get there.
Elaina is doing okay. I was able to go and visit her today. She's caught something, but we don't know what yet. Just today she started coughing and having a runny nose. I'm not sure if the cough is from the mucus or part of the bug. She would cry each time she coughed (which made me wonder if she has a sore throat), and wanted to just snuggle and sleep. Her nurse finally gave her some Tylenol and that seemed to improve her mood a little bit. We'll be keeping a very close eye on this one, that's for sure! Her saturations were still very good today, she was 84-87% the whole afternoon. Maybe it's just more teeth???????? I hope that's all it is! She's still tolerating her feedings very well. We have an appointment with her GI doc next Wednesday.
Well, that's it for now! I hope everyone has a wonderful week! Thanks for all the love and support and thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Time Flies!

2009-03-16T23:49:00.004-06:00

I feel like I don't really know where to start. It's been an up and down week. I feel that I need to start by mentioning that another sweetHeart earned her Angel wings this past weekend. Sweet Mercydez Haws passed away on Sunday morning. She fought a valiant fight and touched many people with her courageous battle. Mercy was 8 days older than Elaina, and was her neighbor in the NICU when she was born. I feel privileged to have been able to form a friendship with Ashley (Mercydez's mom) over the last year. My heart is so saddened by their loss. They are a strong family, and I can only imagine the pain and sorrow that they are faced with now. Please keep them in your prayers.

The rest of my week? Well, lets see..... :)
Elaina pulled her g-tube out last Sunday. It wasn't all the way out, but enough that formula was coming out around the stoma and they were concerned. They could also hear an air leak around the opening. They replaced the tube and she got to have an x-ray to check her placement, and everything looked good. She is still slowly working back up on her feedings. So far she seems to be tolerating them at about 60 cc's (2 oz) every 2 hours. When they try to go up to 90 cc's (3 oz) she gets fussy and cries. So we're at 60 and holding for now. That's okay. We'll get there!

Remember when I mentioned that I thought she might finally be teething? Well, she is. Because she is in a hospital setting, they have to write orders for absolutely everything. I'd asked if there was any way that she could have some Orajel to help numb her sore gums. So, the doctor had to come and take a look. He decided that she wasn't teething. The small fevers and mild pain must be associated with something else, so no order was given for the Orajel. Well, a couple of days later, I came in and low and behold, she has her first tooth! Yay!! We're not sure exactly when the tooth poked through since no one was checking for it (doctor said no teething going on!), but when I went in last Tuesday it was there! She seems so proud of herself too!

I wasn't able to get a picture of the tooth because she pokes her tongue out every time I put my finger in her mouth, but I'll keep trying! It feels like the tooth next door is ready to come in as well, so I went to the store and bought some Orajel myself and took it in for her to use. She's very happy and seems to be doing very well. I am so grateful!

She's discovering that she can grab things with her hands now. Her latest discovery is her foot. So cute. She'd just hold on as long as she could and when her hand would slip, she'd grab it again!

My parents came to town for Spring Break this week, so it has been nice to visit with them. It's also nice for them to be able to see Elaina. This is my sweet Mom, giving Elaina some lovin'!

My sister Liz was also able to come for a visit. She loves to sing lullaby's to all the babies and quickly put Elaina to sleep. It was so sweet! I think Elaina could have snuggled with her Auntie all night! Thanks Lady. :)

Ben and I were able to go and spend some time with her on both Saturday and Sunday. Here they are "in the zone" watching "Finding Nemo" together:

Comfy as can be! What a pair! Melts my heart.... :)

So that's it in a nutshell. Life is Good! I am so grateful for the many blessings I have! I love my family so much!!! My parents will be here for a few more days, so it looks like another busy week is on the way. Thanks so much for checking in on us!
Hugs,
Hollie, Ben and Elaina

A Ray of Sunshine

2009-03-04T22:23:00.006-07:00

Elaina is my sunshine.

Ever since I found out that I was pregnant with her, "You are My Sunshine" has been her song. Ben and I sang it to her just about every day before she was born, and I have tried to sing it to her every day that I am with her since her birth. There are some days that the words have been too hard to sing, so I just hum it, but it's her song. She is my sunshine. She brings such joy to my life!

This has been a pretty good week. I've had some hard moments, but I've tried to keep everything in perspective. On Monday, a sweet little one lost her battle with CHD. I've been following her blog since last spring when I met her parents up at Primary Children's. Gracie had HLHS, and passed away a week after she got a heart transplant. My heart has been so heavy this last week. I've wanted to blog, but felt at a loss for words. My heart and prayers are with this sweet family.

The things that have lightened my mood are being with my two children. Ben has been such a sweetheart. He came to me the other day after I'd finished reading an update on Gracie's blog. I had been crying and he wiped my tears and asked me what was wrong. I told him about Gracie and her valiant fight. That night at bedtime when we prayed, he prayed for Gracie and her family. It was truly remarkable that my 6 year old could demonstrate such love and compassion for another family. What an amazing little man. I love him SO much!

Elaina has been on the super sweet side this week too. She's over the c-diff, adjusted to the g-tube and back to her happy and sassy self.

She is teething, so she has her moments of being unhappy, but luckily a little bit of Tylenol seems to do the trick. She has brought me SO many smiles and has filled my soul with love. She LOVES kisses and has developed the habit of grabbing my hair and pulling my face to hers when she wants some extra loves. It's pretty cute. Even the nurses could tell that she was doing it to get some kisses from Mommy! Today we went for a follow up with her GI Surgeon at Primary's. He said that her incision is healing very nicely, and the stoma looks great. We'll be going back in a few weeks to get the long tube taken out and her button put in. (This doctor likes to wait at least 6 weeks to make sure that everything has had time to heal before switching things over.) He also said that we could start working on bolus feedings! Yay!!! No more continuous feeds during the day!!! He still wants her on continuous at night to help vent her tummy and give her a little extra nutrition, but we're going to start out with 3 oz every 2 hours during the day and slowly work it out to larger volumes spaced a little bit further apart. I am so excited! This is another step closer to being able to come home.

I've decided that for now I'm only going to be blogging once a week. If something important or exciting (or heaven forbid scary!) happens, I'll be sure to post. But things are just so crazy that I decided to make blogging part of my schedule and to try posting weekly. We really are in a good routine. I'm able to go up to South Davis 3 - 4 times a week to spend the afternoons with Elaina. I spend the mornings working and once I get Ben out the door, I'm off. The days I don't make the drive to Bountiful are spent running errands, doing laundry and working at my 2nd job. This job also carries over into the evening and sometimes later at night, so my free time to play on the computer is limited. The best part is that Elaina is stable. Stable is good. She's looking more pink all the time and starting to meet some of her milestones. She can almost roll over! She loves to grab and put things in her mouth! She's still developmentally delayed, but she is catching up and I'm very proud of her progress.

I thought I'd leave you with some pictures (as I promised forever ago!) from the last couple of weeks. They are in no particular order, just some of my favorites.

Today, smacking her lips at me!

Still smacking those lips!

Monday. She was trying to grab the camera out of my hands so that she could eat it! Her chin is a little bit chapped. I think it's from teething. She's putting everything to her mouth, even her stuffed animals!

This was last week. Even in the purple dress she's looking a little bit pink! Her saturations are in the perfect range, 80+ regularly!

Reaching for her mobile. If they put things too close to her she'll grab and not let go! There are beads hanging from the mobile and she loves to pull and hang on to them.

Another little sassy smile from Monday. Don't you just love her hair? Her tech Michelle loves to play with it and put it in piggies and ponies! Too cute!

I don't know if you can tell, but she's sticking her tongue out as far as it will go and then is "biting" down on it and smiling at the same time. Her smiling eyes are the charmers!

A Valentine's Day pic with her Valentine Teddy Bear.

She looks like she just got caught doing something. She was being super cute with the camera on Monday. Full of smiles and fun expressions!

Well, thanks so much for checking up on us! I'll post again next week!
Love,
Hollie, Ben and Elaina

Doing Great!

2009-02-25T23:13:00.003-07:00

Sorry for not posting for so long! I'm finally over this stupid sickness! It really knocked me down for a while! I think Ben might be starting to get it, so I'm keeping a really close eye on him. He was out on Monday with a super bad migraine headache and the pukies, seemed better on Tuesday, but started having a little bit of a runny nose today. I don't know what's up. Oh well, hopefully its just a little bit of allergies since we've had a couple of spring days here this week. Elaina is doing fantastic. She seems to be glad to be back at South Davis and settled right back into her routine well. She's once again being stingy with her smiles, at least for my camera! I was able to spend some time with her today, but the batteries on my camera are now dead so I'll have to share pictures on a later post. She's pretty much over her C-diff and has demonstrated that she can tolerate the continuous feeds very well. The only time that she's had problems is when the drip backs up and she gets a large volume quickly. They have her set up on the "Murphy Drip" still. Basically, her feeding pump is running continuously and dripping into a large bolus syringe. The syringe is attached to her G-tube, so her tummy is being vented (burped) at all times. They are doing this because the bi-pap machine that she is on at night is putting quite a bit of air into her tummy and the doctors don't want her tummy to expand quite that much yet, besides too much air gives her a tummy ache and that is just no fun. Her Nissen incision is healing nicely, and she didn't seem to be bothered when I touched it today to take a look. However, I think that her first little tooth is getting ready to come in, she's liking to "bite" my finger and anything else she can get into her mouth. She's had a couple of short low grade fevers that the nurses are attributing to teething, so we'll see when it finally comes in! Everyone thinks that she's looking really good and you can tell that she loves to have the no-no's gone. Sometimes she forgets that she can bend her elbows, and then when she remembers you can just see her eyes light up. She really enjoys interaction, she loved it when I played pat-a-cake and peek-a-boo with her. That's when I got the smiles. She also loves to be tickled, but I still haven't heard an actual laugh out of her. She's just quiet. I did get some coo's and grunts today, so I'm still hopeful that she'll begin to catch up and become more vocal. Anyway, so that's pretty much all the new news! I'm still busy as ever, working my 2 jobs (my 2nd one has slowed down a little, but that just gives me more opportunity to spend time with my kids!), being Mom and enjoying all the blessings in my life! I'm hoping to start the house hunt again next month and start getting moved up to Bountiful soon. That would just make life SO much easier!
Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

A Case of The Sickies

2009-02-16T09:57:00.003-07:00

What a weekend! Elaina made it back to South Davis, and just in time! She tested positive for C-diff B. It's been tough on her to deal with. She's been sleeping quite a bit, but I guess that's to be expected. I think she was glad to get "home". She's been doling out smiles to her favorite nurses at South Davis and they are all SO happy to see her back. She's still having times where she seems to be hurting, but they are taking very good care of my little Elaina bug! I got home and then GOT SICK! It started out as a migraine and then turned into a pretty nasty flu. I've spent the entire weekend in bed with a fever and aches and throwing up. Not fun. Ben and I are staying at my friend Colleen's house, so at least there are other adults in the house that have been able to pick up my slack and help me out with Ben. He was super sweet on Valentine's day. He gave me some roses and asked me to be his Valentine! So cute! I found a giant stuffed ladybug with hearts on her face that I had to buy myself. It's bigger than Elaina, so I don't think I'll be taking it up to South Davis any time soon. It can stay at home and get snuggled by me or Ben whenever we miss her. I've got pictures I want to post, but it will have to wait. I'm still not feeling very good this morning and I just don't have the energy to do it! :( Anyway, I've been feeling guilty all weekend that I didn't post that Elaina was out of Primary Children's, so please forgive me!
I'll post more once I'm feeling better!
Hugs,
Hollie, Ben and Elaina

Staying Put

2009-02-11T15:13:00.004-07:00

It's Wednesday and we're still hanging out at Primary Children's. Elaina is up to full feeds, but she's having some difficulty with absorbtion of the food. Her stool output is far too large, so they're having to replace fluids through her IV. The doctors are running some tests to see if she has C-Diff or something else that would cause this. Her CRP has been elevated for the past couple of days, but she hasn't had a fever since Sunday afternoon. Anyway, it's looking like we're staying put once again until this can work out. The doctor told me maybe Thursday but most likely Friday morning, so hopefully we'll be out of here by the weekend. The hardest part for me is being away from Ben. I miss him terribly, and I know that this is bringing back memories for him of our long and difficult summer. He's a trooper and seems to be handling it well most of the time. I am SO very grateful for my Aunt Kathryn and Uncle Don. Ben is staying at their house until I get home. I don't know what I would do without such a wonderful supportive family.

On a positive note, Elaina seems to be feeling a little better. She's started handing out smiles to a select few, and has needed less pain medicine. She's been pretty sleepy the last couple of days, but her sweet personality is starting to peek through!

Thanks again for all the prayers and good thoughts coming our way, I can feel the strength it gives me.
Hugs!
Hollie

Friday Night at the Movies

2009-02-06T22:14:00.007-07:00

We're still hanging out on the floor at Primary Childrens. Elaina seems to be doing better today. She still had a little bit of a fever this morning, but as the day progressed it went away. Just to play it safe, the doctors ordered labs - blood, urine and a respiratory panel. So far everything has come back negative, so I'm feeling like the fever is just her body's way of dealing with surgery and the "foreign" g-tube in her body. She also started out her day in a little bit of pain and was fussy. She had to have a dose of morphine to get her over the hump, but has seemed comfortable this evening. They decided to re-start her feeds this afternoon, but we're still working up slowly. I asked them about starting with Pedialite (thanks for the suggestion Kathy - I'm looking forward to a copy of that manual!), but they didn't want to do that. :( They thought that the Pregestimil she's on was broken down enough that it would be just as gentle on her tummy and wanted to give her as much nutrition as they can. They're working her up VERY slowly. They started at 2 ml per hour, we're up to 4 ml and will be jumping to 6 ml in about 1/2 hour. The goal is to get her to 9 ml by tomorrow and then we'll work up from there. I was able to talk to her surgeon this afternoon and he said that as long as she's up to 36 ml he could see no reason why she wouldn't be discharged on Monday. Yay Elaina!

Now a couple cute stories from our day today. Elaina is enjoying her new found freedom from the no-no's. She's decided that it is her job to make sure that her oxygen is NOT in her nose. She rubs it out constantly and poor baby has scratched her nose with her fingernails due to her efforts. So she's in her crib, and I look over and this is what I see:

Notice, she's not happy. She's grumpy. BUT, I can see her face, NO feeding tube in her nose, NO oxygen canula in her nose, just her sweet face. :)

So I put her oxygen back on and tried to play with her. She was NOT amused. She did not like that I had my camera out to play. Here's what happened when I tried to play:

After putting her oxygen on again, I put my camera away(for a moment) and decided to try and find something else to make her feel a little bit better. Her nurse came in and gave her a sponge bath while I tried to think of ways to help her feel better. I've had Child Life on a mission all day to try and find a copy of Nemo for her to watch, but for some reason there isn't one single copy to be found in the entire hospital. I was just about to give up all hope when I was channel surfing (to see if I could find something that might capture her interest!) and Finding Nemo was on Disney Channel!!!! We caught it at the very beginning and her mood changed instantly. She started kicking and getting excited and then settled down to watch her movie. It was SO CUTE! A couple of times she started to smile at her favorite parts and then caught herself and went back to her straight face. Here she is "in the zone" watching her favorite Nemo:

She's been in a much better mood ever since. She hasn't needed any extra pain medicine, and she went to sleep without seeming to be uncomfortable.

Still no smiles today, but at least she had a good evening and enjoyed watching her movie. Hopefully I'll be able to get a smile out of her tomorrow!

Thanks again for all the love and prayers!
Hugs,
Hollie, Ben and Elaina

Darn it!

2009-02-05T09:30:00.002-07:00

Good news and not so good news.
Good news first. We're out of the PICU. We got moved to the Children's Surgical unit yesterday afternoon. It was a much better transition than the last time. We actually got moved into the exact same room that we were discharged from in October. So that's kind of nice.
Now the not so good news. Elaina couldn't tolerate her feeds. We started out at 2 ml an hour, and then were supposed to move up 4 ml every 6 hours until full feeds were achieved. She tolerated the first increase, but when we tried to move it up to 10 ml an hour, she was miserable. They tried to feed her and vent it at the same time and it just backed up. Within about 30 minutes there were 3 hours of feeds backed up in the tube that was supposed to be dripping into her g-tube. She was very agitated, so it was decided to stop feeds. Surgery is concerned that her bowels just haven't woken up yet from surgery. That coupled with the fact that she hasn't been fed gastrically for the last 9 months means that we truly need to proceed with caution. She's also developed a small fever. This is her first fever since we were discharged from Primary Childrens back in October. They've drawn labs to make sure that she's not developing an infection. Her stoma site (where the g-tube enters her stomach) looks pretty inflamed, so I'm a little concerned. I've been asked why the tube is up so high on her tummy. I talked to the surgeon about it when he rounded this morning, and he said that it's just her anatomy. That's where her stomach is, so that's where they put the tube.
Well, the rest of her team is coming by for rounds, so I'm gonna go. I will post more either tonight or this afternoon when I know what the plan is and once it's been implemented.

Thanks for checking up on us!

Hugs,
Hollie, Ben and Elaina

The End of the Day...

2009-02-03T22:56:00.003-07:00

Elaina on Saturday before the surgery. What a happy little girl!

Holding hands with Aunt Becky after surgery. She kept rolling herself onto her side.

Sleeping with her no-no's on. She has an NG tube in her nose to help drain some of her stomach acids and to keep air from building up in her stomach post op. They are using it to give meds and "burp" her. Since it's going through the new Nissen, it would be EXTREMELY painful if she pulled it out and it had to be put back in. Poor baby, we have to save her from herself!

She got some bigger no-no's. She quickly demonstrated her Houdini skills for the PICU staff. Her poor little tummy is all bandaged up.

Poor tummy. They put the g-tube up a little higher than I've seen them on other kiddo's. It's in the same area as the Nissen incision. I got to see it today during a dressing change. It looks pretty good, it isn't too swollen.

She was pretty upset that I wanted to "play" and take pictures when she didn't feel good. She refused to give a sad face to the camera and kept turning away. I didn't take very many pictures.

Finally sleeping after a rough day!

So here's the "plan". :) (You know how quickly that changes!)
We're supposed to start feedings tomorrow and then we'll move out of the PICU to the floor (Children's Surgical Unit). They will continue to work on feedings for a couple of days, with the goal of being discharged by Friday. She will go back to South Davis and we will then discuss the timeline for her to transition home!
It is going to take some time to work up to full feedings for Elaina. She has not been fed into her tummy since May of last year. This means that her stomach is very small and won't hold very much. She's alreay getting her oral meds into her stomach, but it seems to be slightly uncomfortable for her. I'm hoping that feeds will help that as well. They are going to have to start her out on formula very slowly, 2 - 5 cc's per hour on continuous feeding and slowly work her up to her full feed. It's going to take several days to stretch out her stomach. Hopefully she'll be feeling better tomorrow. She's still very sore and uncomfortable. I held her for a little while. I piled pillows all over myself and had the nurse gently lay her on the pillows. I was so worried that it would hurt her that I didn't hold her for very long. She took a nice little nap in my arms and then went back to her bed. I hope I can get in some better snuggles in the morning. Well, I'm off to bed. I just wanted to post some pictures!

Post Op Day 1

2009-02-03T14:14:00.002-07:00

So Elaina is doing well today. We're still in the PICU and it's looking like tomorrow will be the earliest that we're moved to the floor. She had a pretty good night, no problems. They are trying to wean her off the morphine today and giver her Lortab. She's seems to really be struggling with the pain. She's had to have a morphine bolus twice to help her get through it. She was just given the 2nd one about 20 minutes ago so that she could tolerate a dressing change. The surgical nurse came to look at her g-tube and Elaina started crying, so we decided to wait to change the dressing until she was comfortable with the pain med. After her dressings are changed I get to hold her for the first time since surgery. Yay!
I will post again once I'm done with my snuggles!

In the PICU

2009-02-02T19:08:00.002-07:00

Good news! She was able to tolerate coming off the ventilator and went straight to 1 liter of oxygen by nasal cannula. They have a ventilator on standby in her room, but it's looking less and less likely that she'll need it. Her oxygen saturations are in the high 70's and low 80's. She's in some pain, but the nurses are keeping on top of it. The doctor said that they are going to hold off on feeds for at least 24 hours. Right now it's still looking like we'll be in the PICU until tomorrow or Wednesday, then we'll go to the 3rd floor for a couple of days and then Elaina will be able to go back to South Davis. I've taken a few pictures, but the cord I need is buried in one of my bags and I can't get to it at the moment, so I'll have to post later. So far, so good. Thank you so much for keeping us your thoughts and prayers.
Love,
Hollie, Ben and Elaina

Update

2009-02-02T14:11:00.002-07:00

The doctor just came out and talked to me. He said that she did very well in the surgery. There were no complications, and no blood loss. She tolerated the anesthesia well and they are going to try to extubate her now. I won't be able to see her in the PICU for about another half hour, so I won't know if the extubation was sucessful until then. If her recovery goes smoothly, she'll be in the PICU for 2-3 days, on the floor for a day or two and then back to South Davis. Hopefully she'll be back at South Davis by this weekend! I will update more in a few hours, once I've been able to see her.
Thanks for all the prayers!
Hollie

In the Waiting Room

2009-02-02T12:28:00.002-07:00

They just took Elaina into surgery about 10 minutes ago. They told me that the surgery will last an hour to an hour and a half depending on how long it takes to get lines in. At this point they're not sure if she'll be off the ventilator after surgery or not, we'll just have to play it by ear. Elaina started her morning off pretty happy. She had lots of big smiles for me and some little silent giggles, but as the morning progressed, she was a little unhappy and fussy. She napped in my arms for most of the time that we waited, but I think that she was fussy because she was just hungry since they stopped her feeds at midnight. Please keep her in your prayers. Today is going to be a tough one!
Thanks,
Hollie

At The Hospital

2009-02-02T11:03:00.002-07:00

Hi Everybody! This is Becky, I'm Hollie's little sister, and i'm here at the hospital for Elaina's nissen and g-tube surgery. Hollie asked me to post an update. We got here about 9:15 this morning, just a couple minutes before Elaina arrived. Hollie got to go behind the scenes with Elaina for the pre-op mumbo jumbo... and i sat in the hall... oh well. :) but what i've HEARD is that she's cleared for the surgery and we're just waiting for an operating room to open up. Apparently, the room that was scheduled for her needed to be used for an emergency surgery. So now we're waiting. Elaina is doing well, although a tiny bit fidgety/cranky because the poor thing hasn't had food since midnight. She's such a sweet little munchkin :) what a cutie! Thanks for reading, and I (or Hollie) will keep you updated throughout the day.
(((hugz))) Becky

Doing Well

2009-01-22T20:12:00.004-07:00

This past week just seems to have flown by. I seriously don't know where the time goes! I was able to attend a Care Conference at South Davis a few days ago. It was nice to be able to meet with members of Elaina's "team" to get the full picture. Doctor, nurses, respiratory therapy, nutrition, child life, early intervention, etc. were all in attendance. The general consensus was good. Elaina is in a very stable place right now. They reiterated that she is still very fragile and the scales could tip very easily. I don't think that she'll ever get out of the fragile category. But stable is good. Her saturations are continuing to improve. She was between 88 and 90 when I was there for a few hours today. In fact, I thought she looked practically pink!! :) She's attempting to become mobile. She likes to scoot herself around in her bed. She'll start at the top of the bed and arch her back until she's at the foot of the crib. She turns herself sideways and sometimes trys to roll herself over. She gets about half way over and then runs out of steam. She's got the sweetest little personality. She's so playful and happy all the time! She really likes to watch Disney/Pixar movies. I think that she likes the colors and fun characters. Her favorites are Finding Nemo, Cars and Monsters Inc. She also loves to listen to fun upbeat music. We had a really good time today playing pat-a-cake, itsty-bitsy spider, and piggies on her toes. She is extremely tickilish but doesn't laugh out loud. So cute! That pretty much catches us up. Surgery is still planned for the beginning of February, her snotty nose and cough have cleared up, so hopefully she won't have any problems that could delay our big day. Well, I thought I'd finish up the post with a few pictures from my last couple of visits. She's just getting so big!! By the way, she weighs 20 lbs!!! But she's still at only 30% on the charts. Not bad for a little one that started life out at barely 5 lbs!

Sucking her thumb, I can't wait until the no-no's can be gone for good!

I think she might finally be teething. I don't feel a tooth quite yet, but she's drooling more and her gums feel harder to me. She rarely takes her fingers out of her mouth once her hands are free.

I think she was trying to talk to me. She's just so expressive!

Such a Big Girl! We'd just finished playing with some of her toys.

Chewing on some of her toy rings. I love how she is starting to explore things more with her mouth.

:) So cute! I love the ponytail on top of her head. :)

Her smile melts my heart every time!

Playing with her wires. At least it's not the NJ tube!

Trying to figure it all out.

Thanks for checking in on us!
Hugs,
Hollie, Ben and Elaina

Picture Links

2009-01-13T13:33:00.003-07:00

Okay, so I am SUCH the slacker lately. I have no time to accomplish all that I need to accomplish. So, I've put all the Christmas and Birthday pictures in my Facebook albums and thought that might be an easier way for anyone who wants to to look. I've linked it above, so just click on "Christmas" or "Birthday" above, and you should be directed to the right place. It took me less time to create the Facebook albums with all the pictures than it took to upload the few I posted yesterday on the blog! Go figure!
Anyway, I've got to run again, but I appreciate all the love and support! I had a great birthday yesterday, thanks for all the well wishes!

Hugs!
Hollie, Ben and Elaina

Birthday Girl

2009-01-12T16:59:00.004-07:00

Happy 1st Birthday Elaina!

We had a wonderful Birthday Celebration for my little Miracle. Here are some pictures of her big day!

My computer has NOT wanted to cooperate with me today, so I will be adding and updating this post tomorrow. Today is my birthday (Elaina was my present last year!) and I need to leave for a birthday dinner at my friends house. For now, I hope you enjoy the few pictures I was able to get on here!

Hugs,
Hollie

False Alarm

2009-01-07T20:51:00.002-07:00

No surgery today. Apparently there was some kind of mix up with scheduling and Elaina's surgery has now been scheduled for February 2nd. In a way this is a good thing. I hadn't been able to talk with the doctor about the surgery before today. The doctors at South Davis had only scheduled a g-tube placement, they didn't schedule the Nissen proceedure. When the surgeon talked to me today, he told me that after reviewing all of Elaina's charts, he wondered why he wasn't also doing the Nissen. I told him that to the best of my understanding, she needed to have the Nissen for her reflux and throwing up problems. The main reason for her being fed by NJ was the risk associated with throwing up. So now we're on the same page and both the Nissen and G-tube will be done. Good news, he didn't forsee any complications during recovery for her. He thinks that she is strong enough to undergo this surgery and will only need a couple of days in the PICU post-op and will only need to be at Primary Children's for a week before being able to go back to South Davis. This truly is one step closer to getting her home. I'm very hopeful that by spring, when there is much less risk of flu/strep/rsv, etc being brought home, I'll be able to have her home. She was in a very good mood today and was quite playful and fun to be with. I was so glad to be able to spend time with her. Her nurses had her dressed up in a cute outfit and had managed to pull her hair into a tiny pony-tail on top of her head. It wasn't a big ponytail, but it was completely adorable. She's so cuddly that I just want to eat her up! :)

Ben's appointment went well yesterday too. His MRI results were normal. Such a huge relief! The neurologist thinks that he will outgrow the seizures once he's in his teens or early 20's, and he seems to think that the medication is working well. We have to go back every 3 months for follow up, and if Ben has another seizure at this point, I need to call and let the doctor know. Otherwise, Ben is doing just fine. I hope that I'll be able to sleep a little better now. I was hopeful that the results would be good, but there is always that little voice of worry at the back of my mind that I just can't quite shut out.

Well, things are still crazy busy and it seems I rarely have time to do everything on my list that I need to. But there is always tomorrow, and somehow I just keep on going on! I promise that I will post lots of pictures soon. I keep taking them, so I have lots to share. I want to see if I can figure out how to make them into a slideshow or something fun when I have some time this week.

As Elaina's first birthday approaches on Sunday, I just have to say how amazed I am by what the past year has brought me. I am so grateful for my family, for loving friends and most importantly, I am grateful for my Savior. I know that I have witnessed a miracle and that Elaina's life is a gift from a merciful Father in Heaven. Looking back, I don't know how I survived some of the trials. I just know that I wasn't alone and that He continues to bless and strengthen me. I am excited for the coming year, and I look forward to the challenges that are ahead of me. Elaina's continued improvement and good health are a positive sign. I know that things can change quickly, but I feel that I am so blessed for every day, every hour and every minute that I have her in my life. Ben and Elaina truly are the greatest gifts I have ever received and I am so proud of both of them.

Well, thanks for checking in on us. Thank you as well for all your continued prayers and support. We couldn't do it without you all!

Hugs,
Hollie, Ben and Elaina

Happy New Year!

2009-01-02T12:16:00.002-07:00

I hope that everyone was able to have a wonderful and safe Holiday! Ben and I were able to spend a week with my sister Tricia and her family for Christmas. It was very nice to be with family and for Ben to spend time with his cousins. Ben was so cute on Christmas, he was thrilled with all the presents that he got and was on his best behavior. We were able to attend a couple of family Christmas parties and I really enjoyed getting to catch up with cousins and aunts and uncles. We were also able to spend some time with my parents over Christmas and went out to the movies.
Elaina continues to astound me! Her oxygen saturations are staying in the mid 80's (82-87%), and her color is continuing to improve. She's trying to roll over and is full of smiles! She is so strong and beautiful! It was so fun to open presents with her and see the excitement on her face with some of the toys that she got. I left my camera at my friends house (oops!!!), but I will post pictures as soon as I get the opportunity.
Next week is going to be a busy one. I've got 2 appointments on Tuesday up at Primary Children's, one for Ben and one for Elaina. Then we have our big day on Tuesday. I will try to post more as I know what is happening.

Well, sorry for the short post, I just wanted to give a quick update and let everyone know that I hope you have a fantastic New Year! I plan on it being a good one!
Hugs!
Hollie, Ben and Elaina

Tis the Season!

2008-12-20T10:41:00.006-07:00

Merry Christmas and Happy New Year!!!

Well, it certainly is the Season for Celebration! I can't believe how quickly time passes! This time last year I was blissfully unaware of the challenges that lay ahead of me. Last Christmas I was on bedrest with Elaina, but anticipated the best conclusion for my pregnancy. Little did I know that this wonderful, scary and blessed journey would begin a few weeks later. In a way, I'm glad that her heart condition wasn't pre-diagnosed, since I was able to enjoy the holidays in ignorance of the journey that awaited me. However, now that I am well into the CHD journey, I must express my gratitude. As Christmas gets closer, I am so grateful to be able to celebrate my Savior's birth. I know that it is through the prayers and faith of many that we have survived this year intact! What a beautiful time of the year to reflect on the many blessings that I have in my life. I am so grateful for Ben, for the way he makes me laugh, for his perseverence during this tremendous trial, and for his never ending hugs and kisses. I know that God sent him to me for a reason, and he really is a wonderful, kind, loving, and strong boy. I cannot imagine what my life would be like now if I did not have my sweet little Elaina. She is truly a miracle. Her eyes are wise and filled with love and happiness. It seems that she is always smiling when you gaze into her beautiful brown eyes. She has taught me so much and I will be forever indebted to her for the lessons I've learned this year. She continues to grow and get stronger.

I just found out this morning that they are planning a GJ tube surgery for the 7th of January. She goes in on the 6th for a pre-op workup, the same day that Ben has his neurology follow up. I hope I'm able to juggle both appointments! Holy Cow, I never seem to be able to get a rest! As I mentioned in a previous post, my move to Bountiful has been delayed. I think that I've been able to work out a solution, and I'm hopeful that Ben and I can be settled in soon after the New Year. (Fingers Crossed!!!!) Ben hasn't had any more seizures, at least while awake, that I'm aware of. I still don't know the results of the MRI, so I'm hoping that no news is good news. Otherwise everything is still as crazy and out of control as usual! My jobs are going well, and I am very hopeful that the 2nd job I took on will soon allow me to have some of this financial burden lifted off my shoulders. My car is still on the outs, and with colds and sniffles abounding, I've been a little limited in my ability to be with Elaina as often as I'd like. It's a good thing that her love is so unconditional. She lights up every time I walk in the room, and the sound of my voice will wake her up from her naps when I get there. She's really getting big and is really a happy little girl. All the nurses and aides at South Davis are in love with her. Every time I go to see her, she has had her hair done, or nails painted and is all dressed up and content. They've really taped her NJ tube well (tons and tons of tape!), and so they're letting her have lots more hands free time, with her no-no's off. She loves to suck on her fingers and play with her tongue. She's not very verbal yet, some coo's and growls, but she's a smiler. She's got a room-mate that is 18 months old, and they sit and stare at each other. It's too cute! He loves to watch Disney movies, and she's started to become interested in them. Her favorite is Nemo, she smiles and kicks the whole time it's on. What a sweet-heart!

Well, I'm a Super Slacker, not only in the Blogging department, but in the Christmas Card department as well. So, instead of gathering addresses and all that jazz, here's your Christmas card! These are some of my favorite pictures from the last several weeks. Happy Holidays!!!

All dressed up in her Christmas dress!

On Santa's lap at South Davis!

Ben was so nervous that he forgot to ask Santa for what he wanted. It was hilarious once we got back to the car, all of a sudden he remembered all that he'd forgotten and wanted to go back for a 2nd trip!

Elaina loved sitting on Santa's lap!

Back in her room, still in her pretty dress.

Watching Mom put up the Christmas decorations around her crib.

Playing with that crazy tongue! :)

Kicking her feet at the garland above her crib, she loves the decorations! I even tied some bows on her mobile!

Trying to "talk" to Mom!

"Please take off these No-No's!"

Blowing bubbles at Mom. She was so stinking cute that day!

I just barely missed her smile. She was still happy though!

This is one of my favorite outfits. The pink leopard pants just make me smile! She's getting so chunky! Go Girl! Not bad for a heart baby!

I hope and pray that everyone has a safe and wonderful Holiday season! Give all those sweet babies a kiss from us and I hope you all know how much I appreciate your friendship and support!
Happy New Year too!

Hugs,
Hollie, Ben and Elaina

I need more hours in my day!

2008-12-10T12:46:00.003-07:00

Well, life continues to be hectic. It seems that there is never enough time to get everything done that I need to. Elaina is doing very well. She's not throwing up as much the last several days, and her NJ tube has stayed in for over a week now! She's happy and smiling and cooing and growing, growing, growing!!! She will be 11 months old on Thursday! Holy Cow!!! When she was born in January and I was told about her heart condition and then with the events of the summer following her Glenn, I didn't think that I would be able to celebrate her 1st birthday. Now that day is just a little over a month away, and it's looking like we'll be able to have a fun Birthday celebration for her! Still no word on when they are going to schedule her g-tube surgery, but I keep asking. She's still struggling with a runny/stuffy nose, but it doesn't seem to be affecting her saturations or her happy disposition. She is just the sweetest thing and I'm thrilled to be able to plan her first Christmas this year. South Davis allows decorations (including small trees) for 1 week before Christmas and 1 week after. I've got the cutest little tree ready to go and a couple of wrapped presents as well as other fun decorations for her room. I'm so excited!
Ben is doing okay. We got the results of his EEG back, and it shows some abnormal activity in his left frontal lobe. We've met with a neurologist and he is somewhat concerned. He told me that the type of seizures that Ben is experiencing usually occur when the child is sleeping. His 1st two seizures did happen in his sleep, which would be expected according to the EEG and neurologist. The fact that he has now had two more seizures while awake is very concerning. The doctor started him on some medication and ordered a sedated MRI. The MRI results are not back yet, so I'm still on pins and needles wondering and worrying about him. I've had such a hard time sleeping. I keep checking on him throughout the night because I am so worried about seizures. He seems to be his normal self though. He's SUPER excited for Christmas and has already mailed 3 letters to Santa! It's so fun to watch his enthusiasm.
Well, that's about all the news. I've been burning the candle at both ends. I'm working 2 jobs, taking 2 kids to doctors appointments and still juggling my time between Ben and visits to Elaina. My move has been delayed a couple of weeks, but I'm still hopeful that I will be in my new place by Christmas. I'm excited for the move, mostly because I'll be so much closer to my ElainaBug, but I'm dreading the packing, etc. I've got lots of helpers lined up, so hopefully it will be an easy move this go around. Things really are looking up. Deciding to take on my 2nd job is really going to benefit my family in the long run, so it really is worth all the lost sleep and stress it's giving me right now. I am so grateful for all the blessings that my Father in Heaven has given me and I am looking forward to celebrating the birth of the Savior this Christmas.
All my love!
Hollie, Ben and Elaina

Life of a Crazy Woman!

2008-11-25T11:54:00.003-07:00

So, I last left off by mentioning that Ben had been sick. Well, as the weekend progressed he seemed to get better. He claimed to be feeling better on Monday, so against my better judgment I sent him to school. Well, about an hour after school started I got a phone call. It seems that while playing at recess, Ben had a seizure!!!! I freaked out, prayed for my car to start (my alternator is out!), and sped to the school. I took him straight to the doctor. A little past history, the week that Elaina was born Ben had 2 seizures. He had blood work done, at CT, and an EEG. The results were inconclusive, and since he hadn't had any problems since, the doctor told me it was probably something random and wouldn't happen again. Anyway, I ended up having to take Ben up to Primary Children's for some additional testing with this new event having happened. I won't have results back until after Thanksgiving. Then to make my busy life even busier, I was able to take Elaina to her cardiology appointment on Wednesday at Primary Children's. SHE IS DOING GREAT!!!!!!! Her cardiologist was amazed at how well she's doing. He said that her numbers were all in the normal range! Hooray! He told me that there still aren't many options for her future, but her present looks fantastic. He also gave the go ahead for her to have a nissen/g-tube proceedure! Yay! I think that the nurses at South Davis are almost more excited for that than I am! Just this last week Elaina has pulled out her NJ 5 times!!!! Little stinker, she's wiggled out of no-no's and pulled the tube out with socks on her hands, any way that she can do it! So now she's being watched VERY carefully and we're just waiting for the doctors to decide when the best time for the surgery will be. She'll go back to Primary Children's for the surgery and initial recovery, but her bed at South Davis will be saved. Hopefully I will be able to have her home some time this spring, if all goes well. It's getting there!
Oh, and did I mention that I caught Ben's gomboo? I've spent the last week in bed with a fever, sore throat and cough. I'm finally feeling better today, but I'm sure grateful for the friends that took me to their house to take care of me and Ben through this last illness. Well, I'm sorry for the short post, but I only had a few spare minutes and really wanted to post an update.
Life is crazy!
Hugs!
Hollie, Ben and Elaina

Update

2008-11-14T20:41:00.003-07:00

Things are going well. Another INSANELY busy week for us. I've started working a 2nd job to help cover expenses, and I think I'm going nuts. Not because of the job, I LOVE IT! But because of the time that it is taking. Like my 1st job, it's something that I'll be able to do from home and do in my own time. But now, while I'm learning the ropes and getting started, it's taking up a lot of my time. I was able to see Elaina several times this week and she is doing great! Her sweet little personality is really starting to show, and boy oh boy does she love Mommy! :) Every time I go in to visit she is full of smiles, coo's and is just a wiggler! The last 2 times, as I've put her back in her crib when I'm ready to leave, she's started to cry. Talk about breaking my heart! I've stayed and played with her in her crib until she's happy and then sneak out while she's watching her mobile. The velcro strips on her no-no's have come off, so they have been putting socks on her hands to help her not pull at her face. Well yesterday, with her nurse at her side and socks on her hands, she pulled out her NJ again! Silly, silly girl. So she took a ride to Primary Children's to get it replaced. They told me that she was pretty happy to take the ride, and when she got back to South Davis she was exhausted and slept really well through the night. I was going to go in to see her today, but Ben woke up with a fever, cough and a tummy ache. After throwing up several times, he slept for a few hours, but he still isnt' feeling good tonight and I'm going to go and snuggle in bed with him and watch a movie. Poor kiddo. I guess it's the season. Well, please know that I check on all my blog friends all the time, but I haven't been able to post much due to how busy I've been. I will be able to move into my new place at the beginning of December, so hopefully things will calm down and I'll be able to post more often again. Elaina has her Cardiology appointment on Wednesday, so I'll be sure to let everyone know how she's doing. Hopefully this weekend will allow me to do some much needed catching up (on sleep as well as other things!)
Hugs!
Hollie

Prayer Request for Katie

2008-11-08T22:59:00.005-07:00

There is a family that I've been following closely. Their sweet heart, Katie has HLHS, and is REALLY struggling. Their struggle closely resembles the struggle that I had with Elaina this past summer and my heart is filled with emotion for them. I know that prayers can be answered and would like to ask anyone that is willing, to join in prayers for this family as they contiue to fight this battle. Katie is not doing well, and is not expected to survive the next 48 hours. They are praying for a miracle.
Thank you SO much!
Hugs,
Hollie, Ben and Elaina

Still here!

2008-11-07T19:25:00.002-07:00

Sorry for not posting more lately. I have been SO busy that I barely have time to sleep! I have tons of pictures, but I am having problems getting them downloaded to my computer. Ben has been coming along on several visits and I was able to get some good pictures of the two of them together. Elaina really loves her big brother. She follows him with her eyes and smiles at his goofy faces. She especially likes to be tickled. There have been a couple of times that I thought I heard a small laugh, but then I couldn't get her to do it again. She's getting there though! She's still congested with a small cough, but no fevers. It seems to be getting gradually better. I'm chalking it up to season change and reaction to the flu shot she got a couple of weeks ago. Her sweet personality is really starting to show and I am so pleased. She is such a pleasant, happy little girl! She is easily entertained by her mobile and colorful toys. The nurses and techs at South Davis actually fight over who gets to play with her! It is so nice to know that she is so well taken care of! I am very anxious to be able to move to Bountiful. I think I finally found a place near South Davis. It is about 5 minutes away from Elaina, so if I needed to get there quickly it would be possible! If everything goes according to schedule, I should be moved into my new place before Christmas! My fingers are crossed! I am going up to visit Elaina on Saturday, my Aunt Marney is going to be in town and Ben and I are going to visit with her when she comes to see Elaina! I am very excited! I will take more pictures and hopefully I'll be able to get the silly things downloaded for my next post!
Love,
Hollie

Elaina Bug and Jedi Ben

2008-11-03T00:16:00.003-07:00

What a weekend we had! Halloween was a blast!
Thursday was super busy trying get costumes organized and sewn. A special thanks to Colleen and her super sewing skills! She made Elaina's costume as well as Ben's. We spent the afternoon planning and shopping, and then were up late making the perfect costumes for my kiddos!
Friday I volunteered as one of the room mothers for Ben's party. Since I was in charge of the game portion of the party, I decided to dress up for the event and went as a witch with purple hair. Ben was so excited that I was there and that I wore a costume! We played Halloween Bingo and I think that the kids liked the game. We played until everyone won, and I gave out some fun party favors and suckers to all the kids. Ben had fun giving out the leftovers to his friends at the end of the party. After school we stopped by Aunt Kathryn's and Uncle Don's for a quick hello and trick or treat and from there we went up to South Davis. We got there in time for a visit from my sister Liz and her husband John. Liz helped me get Elaina dressed in her costume before they left for another Halloween get together. They have a really neat tradition at South Davis. All the residents (including the Adult Units) dress up for the event. All month long the nurses donate candy. They have a contest for the department that donates the most. There were TONS of treats donated. Everyone lines up in the main lobby and down the hallway in their costumes and then the fun begins. Families from the community bring their kids for a safe trick-or-treat environment. Ben got SO MUCH CANDY! He was in heaven. After he'd gone through the line, he came and sat with Elaina and helped me hand out the candy. It was a lot of fun. I had Elaina in a small stroller and she really did well. I took her out a couple of times and held her in my lap, but people tended to want to touch her when I was holding her, so I put her back in the stroller where she wasn't getting touched. She was very interested in all the costumes and was happy and content. I didn't keep her downstairs for the entire evening, I was worried about exposing her to so many people, but it was fun to spend the evening with both my kids. After I got Elaina back up to her room, we spent a little bit of time playing with her, but the excitement of the evening wore her out and she was tired, not to mention that all the candy had wired Ben, so I decided to leave. We stopped by my Grandma's house and did a little bit of trick-or-treating on her street, and then we went to Colleen's house. I'd forgotten my camera at home, so she had been sweet enough to let me borrow hers. I've been spending the weekends with Colleen and her husband Najee. They live closer to Bountiful and so I don't have as far to drive when I stay with them. They are also so good with Ben and we have really been having fun playing games and watching movies at their house on the weekends. They are also helping me in my search for new living arrangements, so we keep pretty busy on the weekends.
Anyway, here are some fun Halloween pictures! Hope you enjoy them as much as I do!

Elaina Bug!

She was in such a good mood!

Ben was "Luke Skywalker" super Jedi!

Okay, now he's a Vampire Jedi. She's just a cute Bug!

Sitting up so well in her stroller.

She's a people watcher!

All worn out from our evening fun.

Elaina wasn't sure what to think about Mommy's purple hair and giant eyelashes. At least she didn't cry!

Little Miss Houdini Strikes Again!

2008-10-28T22:58:00.002-06:00

Elaina was absolutely beautiful today! She was all dressed up in one of her hot pink dresses with a big flower in her headband. She was extra sweet and cuddly and made some really funny faces at me. She's found her tongue again and was actually smiling a big smile while sticking her tongue out as far as it would go. She wouldn't do it once I pulled out the camera, but I'll keep trying. She's starting to get a little bit ticklish, but hasn't quite figured out how to laugh yet. We played with some toys, sang some songs and I got in quite a few kisses (one is never enough!) during my visit.

When I got to South Davis today, Elaina was napping. She'd managed to wiggle out of one of her no-no's and was holding onto her oxygen cannula. I looked at the monitor, and her saturations were 81%! Not bad for having the oxygen out of her nose! While I was holding her, the alarm kept going off because she was as high as 89%! HOLY COW! She's doing this with a stuffy nose and a cough, I can't help but wonder what she'd be doing if she wasn't congested. Right now Cardiology doesn't want us to turn her oxygen any lower than 1 liter. At least those were the instructions that I was given before leaving Primary Children's. Although at that point, we felt that she was having a good day if she was 75% and didn't think that she'd ever truly sat over 80% on a regular basis. I'd been told that when she was 80% or higher, it was probably a false read on the pulse oximeter, and to be fair, that was most likely true at that time. But Elaina has been showing these high saturations for several days now, and I'm wondering if I should call her cardiologist and ask if it is still necessary for her to be on at least the 1 liter or if it can be turned down to 3/4 or 1/2 liter settings. We have a cardiology appointment on November 19, so I may just wait until then to ask, but it is so suprising to have her sats so high (for her!).

Anyway, my visit ended far to soon. They always do. :( I gave her some extra kisses, and put her back in her crib. The nurse was in the room, and I mentioned some concern about the tape (or lack of it, to be exact) on her NJ tube. I told her that I was worried about it getting pulled and she told me that she had re-taped it this morning and that it was quite secure. She was in the process of putting Elaina's no-no's back on as I left the room. I made my hour drive home, and no sooner had I given Ben his kiss and hug hello, and my phone rang. It was South Davis. The charge nurse was calling to let me know that my Sweet Little Miss Houdini had struck again. Somehow, she'd wiggled out of her no-no's and had pulled her NJ tube out of her nose. So, she had to take her 1st trip back to Primary Children's tonight to get her tube replaced. One of the nurses told me that she was so cute on the stretcher in her pink dress and big bow. She told me that Elaina was looking around and seemed excited to take her ride!! She's not back at South Davis yet, but they have been calling me with updates. The last I heard they were just waiting for the transport to come and take her back. Silly girl! She just doesn't understand that if she pulls it out, they've got to put it back in. In any case, I'm sure she enjoyed having no tube in her nose for the short amount of time that it was out.

My Princess Elaina

2008-10-23T00:07:00.006-06:00

When I got to the hospital this afternoon, Elaina was all dressed up! She was in her prettiest pink frilly dress with a huge bow.

The nurse told me that she was out of clean clothes, and this was the only thing that was left in her drawer. In my defense, I'd brought her clean laundry with me and there were a couple of onesies and 3 pairs of pants in her drawer. If you ask me, I think the nurses were just having way too much fun playing dress up! Elaina was asleep when I got there, she'd spent the morning doing physical therapy and in her swing. I put her clean clothes and blankets away and then pulled her out of the crib for some Mama snuggle time. While she was glad to see me (I got a huge smile when I kissed her cheek), she wasn't happy about being awake. So, we snuggled and rocked for a couple of hours while she finished her nap. When she woke up she was ready for some more fun. Luckily I had my camera in hand and was able to capture her cuteness!

She's still congested, but not quite as much as Monday. However, I think that her cough sounded a little worse. She doesn't seem to mind that much though, and the medical team continues to watch her carefully.

Anyway, I hope you enjoy the cute little video! She was being so sweet!

Picture Time!

2008-10-21T01:20:00.005-06:00

Elaina had a pretty good day today. Once again she's having a little bit of throwing up, it's mostly secretions and bile. They are watching her closely so that it doesn't happen when she's on her c-pap. I talked with the doctor about her cough and stuffy nose, but we didn't really get anywhere with it. She hasn't had any fevers (can you belive it?), so they aren't too concerned. The nurses and respiratory are keeping her nose suctioned to help her be comfortable. They are going to keep a good eye on her and see if it gets better or worse and then treat it accordingly. At least she's turned into a really good mouth breather! She was making all kinds of noises in her sleep as I held her yesterday! The congestion could be one of the several things I talked about in my last post; reaction to flu shot, teething, or a real cold. She seemed better to me today than she did yesterday. Hopefully that's a good sign. Today though she just wanted to be a snuggle bunny. She stayed awake my whole visit, but she didn't really want to play, she just wanted to be snuggled close while I sang to her. As soon as I'd sit her up and try to tickle, or play with toys or peek-a-boo, she'd start to fuss. So I obliged her and just rocked and sang her lullaby's with her snuggled up close. What a sweetie! She did give me some smiles and that always makes my day!!

Okay, it's picture time! These are some of my favorites from the last week or so.

Ben came to visit! He loves to hold her even though she's getting so big! He's so cute, we taught him how to hold his arms to support her head when she first came home from the NICU, and he still puts himself into the same pose now when I put Elaina in his arms. The poor kid's arms are too small for this growing little girl!

Looking at her mobile.
I LOVE the big flower on her headband. I found them at a local grocery store and the flower is just basically glued to a hair clip and detaches from the band! I bought 2 bands (they came with 2 flowers) and an additional 3 big bows. Since they're all interchangeable, we'll be having lots of fun!

My sweet friend Ann sent me this cute pillowcase. I use the pillow to help prop Elaina up when she's playing in her crib, or to help support my elbow when I'm holding her in the rocker. I had a pillow with a white pillow case on it, and housekeeping took it away thinking that it belonged to them!!! Thank you SO much Ann!!!

For the life of me, I couldn't capture a smile with camera that day!
She did give me several though!

"Hmmmm, wonder if I can pull this NJ out when nobody is watching?"

"Oh, just saw my mobile! That makes me happy!"

Silent laughter? Could be, she absolutely LOVES her mobile.
She won't smile at me, but as soon as the music is on and the mobile is turning, she's all grins!

Even in a blue dress with a blue blanket, she's absolutely adorable!

Well, that's it for now! I'm up WAY too late and have TONS to try to accomplish in the morning!

I feel like such a slacker!

2008-10-20T00:19:00.002-06:00

I have been so incredibly busy that I just haven't had time to post. Elaina is doing very well at South Davis. I think that she might be getting a cold, so I'm a little bit nervous about that. I'm hoping that it is because she got a flu shot (not the live virus mist) and that is what's causing it. Ben and I need to go get our flu shots this week. Anyway, Elaina's very happy and content in spite of having a stuffy nose and a little cough. Maybe she's finally teething? Who knows. I will be talking to Dr. Murphy on Monday morning and see what she thinks about it. Otherwise she is absolutely adorable. She's smiling so much more and is starting to anticipate when I tickle her or play peek-a-boo. I've taken some very cute pictures and some super cute videos over the past couple of days, but I am too tired (and lazy - at the moment!) to download them all and post them tonight (it's after 12:30 am and I need to get to bed!). I will continue to take more cute pics and hopefully post them all within the next couple of days. I took the opportunity to spend some time with one of my very best friends this weekend as well. For all intents and purposes we're sisters. Colleen and I have been friends for 23+ years. Wow! She and her husband live about half way between my house and South Davis. Colleen and her husband Najee are two of the kindest and most generous people I've ever been privledged to know. Ben loves Najee, he's such a good role model, he builds Lego's with Ben and encourages Ben to make good choices. They invited Ben and I for dinner and a movie on Friday night. We stayed up late talking and laughing and playing games. Sometimes that close friendship makes it hard to leave. They have a nice guest room in their basement, so Ben and I ended up staying with them all weekend long. It was nice to spend some good quality time with my friends and Ben. I was also able to take Ben with me up to South Davis to visit with Elaina. All in all it was a perfect weekend. I didn't get any of my Saturday "to do" list accomplished, but I guess I have the rest of this week to work on it!
I'll try to post pictures on Monday night! Thanks for checking in!
Love,
Hollie, Ben and Elaina

More decisions

2008-10-14T23:03:00.003-06:00

Not much exciting going on around here! ;)
We're trying to get into the new routine with South Davis. I've decided that I can't go up every day to see Elaina, as much as it breaks my heart. There are several reasons for this, one being that I've been spending approximately $400 a month in gas, and I just can't afford it any more. South Davis is in Bountiful which is actually further north than Primary Children's, and adds an additional 10 minutes each direction to my commute. Another reason is that I really feel like I need to take some extra time with Ben. It's been so hard on him to not have me home after school every day, and to have me get home so late every night. Most nights I get home between 7:30 and 8:00, which is so super close to bedtime. I spend all morning with him, but no time after school. All my morning time is also shared with working, so I'm not able to give him my full attention. Once he leaves for kindergarten, I've been heading up to see Elaina and spend the afternoons with her. I get there around 2:00 and stay until 6:30 and then head home. This schedule is getting more and more difficult for me to handle. It seems like everything else that I need to get done is being pushed aside so that I can spend (split!) time with my kids. I'm not able to keep up on laundry, grocery shopping, and other household chores as well as I'd like. I feel like such a slacker sometimes. So, now that I've listed all my reasons, I've decided to stay home 2 days a week to see if I can get back on top of everything. In a perfect world, I'd have a maid that would come and clean for me and I'd send my laundry out (or have unlimited $$ to just buy new clothes all the time!) and have all my groceries delivered to my door. Oh well, this is just for a short time, it won't be forever. That's because I've made another decision as well! I currently rent my home, and my contract ends at the end of December. So, I've decided to re-locate up to Bountiful. It will be hard on Ben to change schools, but in the long run it will be for the best. If I'm 5-10 minutes away from Elaina, I can visit her while Ben is in school and then go back later in the evening with him for another visit. I should be able to manage my time a little better if I don't have have a 2 hour commute added to my daily routine. Not to mention the gas expense. I'm glad the prices are coming down, but it's still a lot of money every week. I'll be able to look around town on my visits, especially when I take Ben with me on Saturday's and don't have to worry about hurrying home. Moving isn't something that I like to do, and I've done it too many times recently - 6 times in the last 6 years!! Hopefully I'll be able to find someplace that we can stay for a long, long time!

Elaina is doing really well. She's adjusting well to South Davis and seems to like it there. The nurses are falling in love with her, and have lots of fun dressing her up and playing with her when I'm not there. She's still been having problems with throwing up stomach acid, but I don't know if we'll ever not have that be a problem. They adjusted her reflux meds again today, so hopefully that will help to control it a little bit. Her nurse told me today that she rolled from her back onto her side! WOW! She must be feeling better! She's still getting out of her no-no's, but they have her NJ taped better so she's mostly just pulling out her oxygen. They moved her into a different room this weekend. She's so quiet that they couldn't hear her cry, so they moved her into a room that is much closer to the main nurses station. She still has a window, but it looks onto a covered patio so she doesn't get direct sun anymore. She also has a room mate, so there isn't as much privacy as we're used to. That's okay though, we had shared rooms in the PICU so it's nothing new. I'm planning on taking some pictures when I visit tomorrow. I went to Wal-Mart (first time in months!) tonight and got her some cute new clothes. She's growing so fast, she's outgrown most of the clothes that I have for her now. I just HAD to go shopping and buy some new stuff. Thank goodness for Wal-Mart! :)

Double Tag

2008-10-10T10:09:00.005-06:00

So, I've been tagged a couple of times in the last week, and I'm finally getting around to doing my tag post!

TAG #1
My friend Megan tagged me for a photo tag. You have to pick the photo from the fourth file and then the fourth photo.

This picture is of Elaina when she was in the hospital last spring. This was before her heart cath and all her surgeries.

TAG #2
I was tagged by both Megan and Emily for this one!

Random Facts about me:
#1 I lived in Paris France for 1 year when I was 13 years old, while my Dad was on a research sabbatical.
#2 I lived in Omaha Nebraska until I was 15 years old.
#3 I was a nanny in Philadelphia for 2 years after I graduated from High School. (1988-1990)
#4 I was 32 years old when Ben was born.
#5 I was widowed when I was 33 years old. Ben was 11 months old.
#6 I can honestly say that I was 37 when Elaina was born, she was born 1 hour before my birthday!
#7 I love to cook and bake! Soups are my favorite, and I love to make up my own recipes. I really enjoy baking and decorating cakes, I even made a wedding cake for one of my friends once!

Okay, I double tag: Brytten, Melynda, Kathy, Stephanie, Tina, Camille, and Aimee!
So hard to just choose 7! :) Have fun!

Getting Settled in

2008-10-08T20:48:00.003-06:00

Well, it seems that we are finally starting to get settled in to South Davis. Transitions are always difficult for me, but so far this one has gone very smoothly. I must say that the atmosphere at South Davis is much different than I expected. It is a long term acute care facility. The majority of the residents are on ventilators with a traech, or are confined to wheelchairs. Most of them have significant developmental delays as well. In a way, it feels like Elaina doesn't quite "fit in". That said, I think we're going to like it here. Rooms are shared, but the other bed in Elaina's room is empty, so she has the bed by the window. So far it's been fairly quiet and it's nice. The nurses are on teams, and the teams rotate every 8 weeks, so there is quite a bit of consistency of care. Someone comes into the room every 30 minutes to check on her, so she seems to get quite a bit of attention. I have a "get to know you" care conference on Thursday, so that will be good to make sure everyone is truly on the same page. She is such a content little thing! She rarely cries, and if she does, there is a good reason for it. I think she likes that she's not getting poked as often! I had a good day holding and loving her, I keep the no-no's off the entire time I'm there. I was getting ready to leave, so I put her back in her bed and put the no-no's back on. I turned on her mobile as I was walking away (it breaks my heart to leave...) and she flashed me a beautiful smile! I think her mobile inspired her, but I still had to stay and take a few pictures while she was willing to give those precious smiles away, so enjoy!

"You almost caught me Mom!"

There's the smile!

getting some sun from her window

Happy girl :)

I LOVE THIS SMILE!!!!!

A Surreal Day

2008-10-06T23:24:00.005-06:00

What a day!!!!! I think that pictures can tell it best:

Getting in some good snuggles.
Yes, she's smiling!!!
She decided yesterday that she was ready to share some smiles.
She's still stingy with them, but these are the first smiles she's given out since May! There is nothing more beautiful than her smile! I thought my heart was going to explode when she smiled at me today!

All packed up!
Can you read the sign?
It says:
"I'm leaving Primary Children's after 143 days!"

Unbelievable!! I didn't think this day would ever come!

We weren't the only ones that were excited that this actually happened today!
I couldn't stop crying, I'm such a baby!

Getting loaded into the ambulance for the transfer.

Ready to go to South Davis!!

Getting settled into her new bed. They'll soon learn to put pink blankets on her bed. The blue (and some purples) don't compliment her skin tone.
She was behaving herself without the no-no's for a minute.

She loves her mobile!!
She's getting so big, she weighs 16.5 lbs!

Such a pretty girl! I love her eyes, she's getting so expressive.

This is another one of her new tricks, she loves to blow raspberries. She was doing it all day long today. She's so funny!

Can you believe this? She's holding her rattle all by herself and moving it around. She never ceases to amaze me!

Words just cannot fully express how I'm feeling today. I am so blessed. I know that I've witnessed a miracle. I am so proud of Elaina, she amazes me each and every day. My heart is full of love for this sweet soul that has graced my life. I know that my Heavenly Father hears and answers prayers. I see His hand in my life on a daily basis and I am so grateful for it. Today starts a new chapter in our lives, I hope and pray that we continue on this road to recovery and that home can be in our future.

Running Away...

2008-10-02T13:39:00.002-06:00

Ben and I are off to Bear Lake! We're hoping to enjoy each other and get rejuvenated this weekend! It might be stormy on Saturday, but we'll try to get a little bit of lake time in on Friday then we'll be home on Sunday.

Elaina is just so precious. I spent last night with her and she was very interactive and playful. She got a new toy from her friend Mercydez (thanks Ashley!) and she loved it. We played with it for about 45 minutes before she lost interest. The physical therapist played with it this morning too, and she was just as excited about it. She was able to grasp it and she brought it to her mouth. The most exciting part was that she cooed! I was holding her and playing and singing to her, and she cooed at me!!!!! It was so beautiful! Up until now, the only noise she made was crying when she was unhappy. This was definitely a happy noise. It just made my day! Of course it also made it harder to leave her, but I am so pleased with how she's doing. I have lots more to share, but I'm outta time, so I'll post more when I get back from the lake!
See Ya!!!
Hollie

Getting Closer

2008-09-30T13:52:00.004-06:00

Well, we're getting closer. After meeting with the doctors from South Davis on Monday, a decision has been made to transfer Elaina on Monday Oct 6th. She still needs to finish up some IV antibiotics, and a tiny bit more fine tuning of diuretics and then we can go! They stopped her antibiotics on Sunday, and by early Monday morning her fever was back, so they decided to have her finish the anti-biotics (as well as the work up) at Primary's before she goes. Her NJ tube got clogged again (some of the nurses are just not flushing it well...) and when they replaced it, her throwing up stopped. I think it's odd, her throwing up started last week when the tube was put in. I almost think that there was something wrong with the tube or placement that caused the throwing up. She had several x-rays to check the placement and they looked okay, but it just seems odd to me.
Anyway, I decided to stay home today to get caught up on errands, laundry, dishes, etc. I'm going to take Ben up to Bear Lake this weekend for our last weekend of the season. I'm not sure if any of my sisters will be able to join us, but I think that the fresh air will be good for us regardless. So, I have a lot to do to get ready for the weekend. I'll be spending the night with Elaina on Wednesday and then Ben and I will be off! Hopefully I'll be able to post again before we leave.
Thanks again for all the love and support!
Hugs,
Hollie, Ben and Elaina

Angel Brooklyn Bailey

2008-09-28T20:16:00.006-06:00

This weekend has been so full of emotion for me. Darling little Brooklyn Bailey earned her angel wings on Saturday. She was 2 1/2 months old and fought such a valiant fight with her CHD. In the time that she was in the PICU, I formed a very close relationship with her parents, and have been so amazed at their courage and the strength that they have exhibited during this time. They have been an inspiration to me. I pray that they are comforted at this time and that they may be able to find some peace....

Elaina has had an okay weekend. She's been having some problems with throwing up for the past couple of days. It's just secretions and stomach acid, but it's happening several times a day. I also think that she's looking a little bit swollen, but so far the doctors haven't decided if they want to give her any extra diruetics. I think that they are still a little bit worried about getting her too dry again. She's also looking more blue to me, but her sats are in the high 70's to low 80's. We are going to have a care conference with Dr Murphy (from South Davis) on Monday, and I plan to discuss some of these issues with them. I should know when she's going to South Davis on Monday as well. We're hoping it will be some time early this week!

Ben came to the hospital with me this weekend and he really enjoyed spending some time with his sister. He was always so concerned when she would start to cry, and he was SO upset when the nurse had to give her the Lovinox shot. He's been so amazing during all of this, he has had some tough times, but he is doing his best to understand the situation. He's sure a handful though, he's got too much energy to be burn when he's contained in a small hospital room!!!

Little Miss Houdini

2008-09-26T11:15:00.003-06:00

Elaina is a very intelligent young lady. It has not taken her very long to figure out that, not only does she NOT like the no-no's, she can get out of them. It only takes her a couple of minutes to wiggle her arm free from the restraint. Once free from the no-no, she love to pull at (or pull out!) anything that she has decided doesn't belong. She pulled out her IV on Tuesday morning and got blood everywhere! Anyway, I just had to get it on video. I'd left the room for just a minute to get some ice water, and when I got back, this is what I found:

She really cracks me up.
We're still talking with Dr Murphy at South Davis, and if the infection on her leg continues to improve, we're looking at transferring to South Davis some time the beginning of next week.
Well, I've got to get Ben off to school and head up to the hospital to give some "huggles and buggles" (Ben's term!) to Miss Elaina!
Hugs!
Hollie, Ben and Elaina

Not going as planned...again!

2008-09-23T23:34:00.004-06:00

I was told last week that we would be moving to South Davis at the beginning of this week. As of right now, we're still in the hospital and it doesn't look like we're going anywhere fast. On Friday, we decided it was best to catch Elaina up on her immunizations. She can't have any that are live virus, this is a DiGeorge thing, but she can have all of the other ones. Well, on Sunday morning the doctors noticed that the site on her leg where the shots were given was very red, swollen and was hard. They drew a nice little line around the area to make sure that they'd notice if it got bigger and decided to just watch it. The redness is starting to gradually subside, but it's still swollen and hard. In fact, I think its poking out more than it was the other day. To make things worse, Elaina spiked a fever last night and this morning. The doctors took her down for an ultrasound of her leg, and she's got cellulitis! For those that don't know, cellulitis is an infection of the skin and the soft tissues underneath the skin. So now she's on a minimum of 7 days of Vancomycin and won't be able to go to South Davis until this is cleared up. Oh well, things were going so well that I guess I kind of anticipated a few more bumps in the road. Another thing that happened on Friday night was that Elaina spent another night in the sleep lab. She's been struggling on her c-pap at night, having de-satting episodes, so they wanted to find out what her optimal settings should be. They've decided to move her peep (the force of the air) from a setting of 10 up to 14, and decrease the amount of oxygen from 8-10 liters down to 4-5 liters. So far she's still having a hard time on the c-pap, but I'm hopeful that she'll adjust. I think the main problem is that the mask doesn't fit her well, and when she fidgets it slides off her nose and the air blows into her eyes. Poor baby. We'll get it all situated, eventually. In the mean time, we'll just hang out at Primary Children's! We've got good friends here and at least we're out of the ICU!

Just hanging out and behaving herself with the no-no's off!

Thanks for all the sweet birthday wishes for Ben. He had a great birthday and loved it when I'd read him the comments from "his" blog! I'm still trying to recover from the busy weekend, but it was worth every minute!

To My Birthday Boy

2008-09-20T21:53:00.007-06:00

Happy Birthday my darling Ben!!

We had a fun Birthday Celebration tonight at Chuck-E-Cheese. I loved taking you up to the hospital this morning to spend some time with your sister. We got to go shopping for your presents and spent the whole day with each other.
I'm so glad that your 6th Birthday was a fun one!

The last 6 years have just flown by....

1st Christmas 2002

4 months old

Halloween 2003 - 13 months old

Age 3

Filling Elaina's bears with your loves

We have been through so much together, the two of us. You've made me smile each and every day!

I love you SO very much!

Mommy

The Sickies

2008-09-18T11:09:00.003-06:00

It started on Tuesday. Ben wasn't feeling well. I couldn't get him to eat any breakfast or lunch. He wouldn't get out of bed. Anyone that knows Ben knows that he never stays still, so when he's laying down in bed and not up and jumping all over the place, I know that something's wrong! Then he started throwing up. Poor kid couldn't keep anything down. I tried Gatorade, Sprite, water, and it all came back up. He was crying that he was thirsty, but nothing would stay in his tummy. I was up with him all that night. Finally at about 6am the puking stopped and he was able to get some rest. When he finally woke up on Wednesday he seemed to be just fine. His fever was gone, and he was back to his energetic self. I kept him home from school just to play it safe, but he's ready and raring to go today. That also meant that I didn't make it in to the hospital. I'm hoping that I can go today, I miss my little Bug. Because I haven't been up there for a couple of days I'm feeling a little bit lost. I'm not really sure what the plan is at the moment, but I know that she's doing well. Elaina is continuing her physical therapy and has only had 1 fever this week. The doctors are still working on getting her fluid balanced and on some minor electrolyte replacement. Otherwise it looks like we're getting closer and closer to being able to move to South Davis. I'd imagine that we'll be having a care conference in the next week or so....
Thanks for checking in on us! We love you all!
Hollie, Ben and Elaina

Physical Therapy Fun

2008-09-15T20:49:00.005-06:00

Elaina has had a pretty uneventful weekend. The doctors are still fine tuning her diuretics and balancing her electrolytes, so she's had to have blood draws and a couple of chest x-rays, but that was the main excitement this weekend. I was able to spend the night with her on Saturday and she had a great night. We spent most of Sunday catching up on snuggles. The nurses joked with me that I need to stay every night because the only time she does well on her c-pap is when I'm in the room! Ha!! I wish I was able to stay all the time, but Ben needs to have me home to get him off to school. Oh well, it's good to feel needed anyway!

Right after I got to the hospital today our new physical therapist came in to work with Elaina. I was holding Elaina, but she was awake, so we decided to "play". Elaina seemed to enjoy it and she is doing really well!!

The physical therapist brought in a mat for her to use on the floor.

She's able to hold her back straight without too much help. (If she let go, Elaina would fall, but she's getting pretty good at balancing.)

Elaina had fun playing with the toys. She looked up at me when I called her name!
Here's a short video of her following one of the toys. This was near the end, so she's a little bit worn out, but it's still cute.

The physical therapist told me that she was very impressed with how well Elaina is doing. She said that she's developmentally delayed, but mostly due to the amount of time that she's spent in the hospital. She seems to be catching on quickly, but is still very weak. She will try to reach and grab for toys, but doesn't have much strength to hold on to things. The PT also put her on her side to encourage her to roll over. Elaina was able to balance herself on her side, and would roll onto her back when she was following the movement of a toy. Rolling to her stomach is still far into the future, but she was able to bring her arm from behind her back to her front. She should improve over time, she is just starting on this part of her recovery. I know it probably sounds silly to be excited over such little things, but I just can't help myself.

Elaina also got a new swing today! It was donated to the hospital, and since it's made out of fabric, they don't allow it to be used by multiple patients (to help prevent spreading germs) so Elaina gets to keep it! She absolutely loved it and fell asleep shortly after getting in. Of course I'm sure it helped that she had just used up all her energy in physical therapy!

It's a little blurry because the swing was moving, but she was loving the music and watching the little toys moving above her head!

On a personal note, I broke a tooth today! I'm not really even sure how it broke. I felt something in my cheek, and it was a piece of one of my back molars! Holy cow! Anyway, I've got a dentist appointment tomorrow, so I won't be making it to the hospital. There just aren't enough hours in the day for everything. The nurses assured me that they would hold and rock my sweet girl since I won't be able to be there. I hate going to the dentist.... :)

Fun Times...

2008-09-12T12:07:00.006-06:00

Quick update, I'll try to post more later! It's been crazy! I went to the doctor this morning and he confirmed that I'm having an allergy attack. Great! I'm relieved that it's not a cold, now I don't feel guilty for going to the hospital yesterday. Speaking of yesterday, it was a GREAT day!!! My sweet Ben pulled out his first tooth!!! He was so excited for the Tooth Fairy to come that I couldn't get him to fall asleep. He kept hollering at me that the Tooth Fairy hadn't come yet and he wanted me to catch her for him! What a sweetie. In the end he fell asleep, and this morning let out a huge yelp when he realized that he had a shiny gold dollar under his pillow!

Elaina also had a good day. It was her 8 month birthday! The nurses dressed her up in her prettiest dress, and there was a cute poster on her wall. I took in a cake (my favorite scratch cake, pineapple! Yummers!) and some fun decorations for her crib. On a side note, she passed her swallow study! What a good girl! I'm not sure what we're going to do with this information, but at least it's a step in the right direction. Here's a cute picture of her in her birthday dress, and a little video. She's so content, I just wish I could get her to smile.....

I'll update more later!! I'm off to the hospital!!!

Hugs,
Hollie

Daxton Cook

2008-09-10T10:25:00.008-06:00

I got the best news ever this morning! My friends the Cooks got a call at 2:25 this morning that their son Daxton got a heart!!!

He has been on the transplant list waiting since the end of June when his small body had 2 heart attacks! He was just one month old at the time. He and his family have been through so much during the past several months, and I just cannot express the overwhelming feelings that I have for them at this time. They are preparing to go into surgery within the next few hours. Please keep them in your prayers that all will go smoothly and that Daxton's body will accept this amazing gift. Please also keep the family that lost their child in your prayers. Pray that they will be comforted in their loss and that they will be blessed for giving the gift of life to other families.

Hugs,
Hollie

p.s. I "hab a code in my node...." Well, I hope it's not a cold, just allergies... Anyway, I'm staying away from the hospital for a few days just to be on the safe side. I would hate to get anyone - especially the babies - sick. I hope to be there on Thursday for Elaina's 8 month birthday, but we'll have to see how today goes. I started feeling better yesterday as soon as it rained, which really makes me think it's allergies...... I'll update on Elaina later!

No No's?

2008-09-08T20:25:00.003-06:00

So, Elaina is good at pulling out her NJ tube. So good in fact, that the team has decided to go to drastic measures to prevent it from continuing to happen. Elaina is now the "proud" owner of her very first set of No No's.

She doesn't fight them too hard, but the instant that they are off her, she grabs and tries to pull all the tubes out of her face! The nurses struggled this morning to even get her weight, because she was so grabby! She's such a cute little stinker!!!
Anyway, she continues to have a fever and as usual nothing cultures. The Infectious Disease doctors are going to do one last blood draw, and then we're going to assume that the fevers are due to medications and/or how wet or dry she is from her diuretics. They will only culture her in the future if there are other indicators, besides fever, that she has an infection.
Speaking of diuretics, she's super dry again. I tried to tell them on Friday and Saturday that she was getting too dry, but it seems that no one listened to me. Today they started giving her more "free" water (an extra 20 cc's per hour) to see if they can get her to balance back out. Her sodium was increased and some of her other electrolytes were also out of balance, an indicator that she's dehydrated.
Tiffany, our favorite music therapist, came today and sang lots of beautiful songs. So soothing in fact, that Elaina and I both fell asleep in the rocker. Tiffany asked my permission today to write a special lullaby for Elaina. I, of course, agreed. I can't wait to hear it. Hopefully she'll give me a copy of the lyrics so that I can post it.
Anyway, that's about it. We had a super nice weekend. Saturday morning we attended a Gold Medal Mile Fun Run/Walk for CHD awareness that was put on by Intermountain Healing Hearts. It was amazingly fun and well attended. Ben got a heart snake painted on his face. Isn't it cute??? He had such a fun time with all the other heart families!

I was able to spend Saturday night at the hospital and then went to my cousin Valerie's birthday party on Sunday. It was lots of fun and was the perfect end to a great weekend. Monday started the week all over again with work, getting Ben to school and the daily commute to the hospital. Now I'm home for the night, have a little bit of homework to help Ben with, then it's off to bed and start all over again tomorrow!

I am so grateful for all the blessings in my life! I love my children!! I love my family and all the friends (local, online, etc.) that have been so supportive of me during this long journey. It's not over yet, and just knowing that I have people that care and are praying helps to give me the courage to continue on this difficult path!

HUGS!!!!!!
Hollie

Ramblings of a tired Mom....

2008-09-05T21:24:00.003-06:00

What a day! I am so tired that all I really want to do is crawl into bed and sleep for a year, but here I am on the computer instead. Elaina is...well, she's being Elaina. Now that we're on the floor, we have a whole new group of doctors (and residents) working with Elaina. Not only does this have the positive aspects of new eyes seeing things that may have been overlooked, it has the negative aspects of re-doing things that have already been done. The new docs want to revise her diuretics, they think that they are the cause of her fevers. So here we go again. I gave them my input and asked them to check with the other doctors and her Cardiologist, so hopefully that happens. I had a care conference today, and it went fairly well. Elaina still needs to prove some stability/predictability in order to be moved to South Davis. I was a little bit resistant to continuing the South Davis plan initially. After all, the reason I'd looked into going there in the first place was because we weren't able to get to the floor and I wanted Elaina to be in an environment, out of the ICU, that she could prove a little stability before she comes home. (I really don't need to have her Life Flighted back.) Now that she's on the floor does she need to have another downstep? Actually, it might be a good thing. A very good point was made at the meeting today, Respiratory Season starts in a few short weeks. Primary Children's is the place that all the kids with severe respiratory illnesses (RSV, Influenza's, etc) will be admitted. They won't be admitted for treatment at South Davis, so in order to protect Elaina from these nasty bugs, South Davis is still an option if she's not stable enough for home within the next 3 weeks. The other main issue of concern was feedings. Elaina has become VERY proficient at pulling out her NJ tube. In fact, she's pulled it out 3 times this week. (Silly girl, she just doesn't understand that they have to put it right back in!) They don't have the ability to put in NJ's at South Davis, so if she pulls it out, she gets to take a fieldtrip back to PCMC to have it put back in. SO, we're thinking about doing a swallow study next week to see if she has the ability (or is strong enough) to protect her airway and maybe do NG feeds again. The problem would be giving her enough calories during the day, because it would be too dangerous to feed her at night while she's on the c-pap (it dramatically increases her risk of aspirating). We wanted to eventually get her strong enough for the Nissen and either G-tube or GJ-tube surgery, but that is still 4-6 months down the road. Now it's weighing the risk/benefits of NJ versus NG while she's still in the hospital. Even though her aspiration risk would be greater with NG feeds, if she were to be at South Davis and monitored by nurses, it would be safer than being at home with me sleeping at night. This could possibly mean keeping her at South Davis until the surgery, so another 6 months in a hospital setting. I don't know what to do. I want her to come home, but I am just one person and can't stay awake 24 hours a day. I can't afford to hire a nurse to come in at night while I sleep and my insurance won't cover it either. South Davis is an excellent facility, and their focus is really rehabilitive, so they would be able to help Elaina with her delayed developmental skills. They can work with her on the feeding issues (other than the constant hassle of replacing NJ tubes) and provide her with a better quality of life than she has at Primary Children's. So I have more big decisions to make in the upcoming days and weeks. Right now all I can do is wait for the tests to be performed and for the results to come back so that I can make the best decisions possible. I can't worry about something that hasn't happened yet (well, I could but that would be an awful waste of precious energy!) and I'm not willing to make an uninformed decision, so we'll just have to see what the next couple of weeks brings. Well, I'm going to go crawl into bed now. This whole move to the floor and big care conference stressed me out and I haven't slept well for a couple of nights. Hopefully I can get a good nights sleep tonight so that I can enjoy my weekend! Thanks as always for all your love and support.
Hugs!!!!!

Surprise!

2008-09-04T00:09:00.002-06:00

Surprises today!!! I decided to go to the hospital late today. I had some housework that needed to be done, things to put away from our weekend, etc. I figured that since I stay the night at the hospital on Wednesdays, I'd get some things done while Ben was at school. I was just getting ready to leave when my Mom called. She told me that the hospital had been trying to get in touch with me, and when they couldn't, they called her. They had been calling my cell phone, which was in my purse and I didn't hear it. Anyway, the reason that they were calling was to let me know that they'd decided to move Elaina to the floor!!!!!! We are officially out of the PICU!!! I must say that I was not prepared for this, and so I've gone through a huge range of emotions today. I've mostly cried and cried. I can't say that I was excited when I found out. I was actually a little bit upset and frustrated! I know I'm going to sound crazy, but just yesterday they told me that she wouldn't be able to be moved anywhere until next week. We also have a meeting set up with the doctor from South Davis on Friday. The whole reason that I was looking at having Elaina go to South Davis was because we couldn't get her to the floor! Now that she's here, is South Davis really necessary? Urgh! I am very confused about the direction that we're going in now, and I'm not really sure what to do. I was also a little bit upset because they moved her to the floor before I could get to the hospital and I'm the kind of person that likes to have some control in what happens. Anyway, now that I'm here and we're all settled in, I'm feeling pretty good about the change. I love my floor nurses (I had the same ones when we started out here in May!) and they all remembered Elaina. Melissa (my favorite tech) came and loved on Elaina for a long time. She was SO happy that we were back upstairs. I know that Heavenly Father answers our prayers and that we don't get to choose the way that they are answered, this is part of His plan, and I need to just accept it as part of the miracle of her life.

We're back!

2008-09-02T22:48:00.013-06:00

It was a wonderful weekend.

I got some much needed rest, relaxation and fun outside of the hospital.

Ben had a blast -

and we avoided getting sunburned.

(watch out girls, shark's gonna get ya!)

The weather started out great, lots of sunshine with a cool breeze by the water, but by the end of the weekend it was rainy and storming.

(is this guy happy or what?)

We enjoyed the cabin and played games and made some great family memories.

(My niece Maddie, nephew Cameron, Ben and brother's in law John and Craig playing a game outside on the deck before the weather turned on us!)

(My niece Kate playing a game inside)

My Mom and Dad bought into the cabin (shared with 3 other families) just this summer. They live in Nebraska and will be moving back to Utah when they retire next spring. Since they weren't able to be here for our first official weekend, my sisters and I (and our families) did our best to "break in" our new family retreat. It was great, hopefully we started some fun traditions as well!

Elaina had a good weekend. NO FEVERS until I got back today! What the?????? Anyway, they started her on her antibiotics today, and we have a care conference planned for Friday. Dr Murphy from South Davis will be in attendance and we will be making some decisions as to Elaina's future care at that time. I missed her like crazy over the weekend and it felt SO GOOD to hold, snuggle and catch up on kisses today. I think she missed me too. She was asleep when I first walked into the room, but as soon as she heard my voice she woke up and got fussy until I was able to pick her up (I had to wash my hands first...) and give her some long overdue smooches! Mmmm, she's fun to kiss!

Just snoozin'....
(the stupid thing between her eyes is to protect her skin from the c-pap)

Not too much else to report, I'm exhausted from my day today.... Sometimes vacation (all the packing and unpacking) is a lot of work!!!! Well worth it though! I'm ready to face the next leg of this journey!
Hugs,
Hollie, Ben and Elaina

The Newest Plans

2008-08-28T22:19:00.006-06:00

Plan 1: Elaina's Plan
On Tuesday, Elaina had an echo done. There was a little concern, because they saw something in her Inferior Vena Cava (IVC). At first, they thought it was a clot. They assured me that they were already giving her the treatment for this, her Lovinox shots, and that they wouldn't really know for sure if it was a clot until the Cardiology team was able to take a better look at the echo. They wanted to compare it to not only her past echo's, but her cath lab results. They wanted to know if it was something new or if it had already been there for awhile. I decided not to TOTALLY FREAK OUT!!! and to wait for the final say. Well, today Cardiology came and talked to me. They said that it's not so much a clot as it is a strand of something waving in the blood flow of the IVC. (Scary note, the IVC connects to the right atrium of the heart. I really don't want anything going to her right atrium....) The general consensus is that it's probably from the broviac, and that it's what is causing her fevers. So, as soon as her next fever spikes, they are going to start her on Ancef, a different IV antibiotic than she's ever been on before. They are going to keep her on this antibiotic for 5 days and then switch her to amoxicillin for an additional 7 days and see what happens. The hope is that her fevers will disappear, and she will be able to "prove herself" so that she can be transferred to South Davis. Of course, knowing Elaina, nothing will be that simple. :) As it is now, we will be in the PICU for at least 2 more weeks. Oh well, going home is overrated anyway.....

Plan 2: Hollie's Plan
So, since Elaina is just going to be hanging out on antibiotics this weekend (and is otherwise as stable as she gets - give or take a fever!), I have made a decision. It was a VERY HARD decision for me to make. But, I've decided that Ben needs some uninterrupted Mommy time. I am going to take him on a small weekend trip to my family's cabin at Bear Lake. Here is a picture taken from the deck of the cabin, looking towards the lake:

Bear Lake is truly one of my favorite places on earth. Ben loves it just as much as I do, and I honestly can't think of a better place for a weekend of rest and relaxation! My siblings (and their families) will be there as well, and it is going to be fantastic fun! There is a public beach a very short drive down the hill (mountain) and the water is absolutely amazing! It is so clean and blue, you can actually be shoulder deep in the water and look down and see your feet. Bear Lake is famous for it's raspberry crop and it's a tradition to get a fresh raspberry shake on every visit. I discovered chocolate covered fresh raspberries last summer when I was pregnant, and I'm going to have to get some of those too! They dip them in chocolate and then put them in the freezer, and when you bite into it the fresh raspberry explodes into juice in your mouth. YUM!!! After 102 days in the hospital (79 in the PICU) I think 4 days away is justifiable. There is a part of me that feels guilty leaving Elaina in the hospital all alone, but Ben needs to have some fun with Mom and that's super important too.
Here's the catch. Since our cabin is an official "getaway", there is no internet access. SO, I will not be posting until Monday or Tuesday. Please don't get worried. If something happens with Elaina, I will have my Mom post (sorry you can't be with us at the cabin Mom!). Otherwise, I'll post tons of pictures of us having fun at the lake when we get back! Oh, if you're local and are going to be at Primary Children's please go give some loves to my sweet heart! Hold her and rock her and tell her that Mommy misses her, if you have the time.......
Thanks so much for all the love and support!
I don't know how I'd survive this without it!
Hugs,
Hollie, Ben and Elaina

Another Day Down

2008-08-26T23:06:00.009-06:00

And another fever, or rather several fevers. Not as high this time, just 102 or so... We still have no answers. They are running every test that they can think of just to say that they looked. Poor baby is once again a human pin cushion.

If I let them see me smile, they will poke me with a needle....

They are beginning to think that these fevers are cyclical and are just Elaina's "new normal'. Here's the glitch. Dr Murphy from South Davis came and evaluated Elaina on Monday and said that she thought that transferring Elaina was possible, but not until her condition was "more predictable". So now the plan is to take blood samples every day for a week, trend her temperature hourly for that week and when nothing cultures out and her temperature is all over the place we'll just call it her "normal" behavior and then attempt to convince the doctor at South Davis that she is stable. So, she's not stable enough to go to the floor, she's not stable enough to go to South Davis (and they do hospice!), and I still have the option of taking her home. I think that is just crazy at this point. If she's not stable in a hospital environment, then how could she possibly be stable enough to go home with just Mom!?!? That's just setting me up for failure, so I'm going to hold out for South Davis.

(Thanks Kathy for the cute sheep! She adores it!)

Nothing much I can do but wait and watch. I've been moved into the back of the PICU (bed 28 for anyone that is local and wants to come say hi!) where it's quieter and I can sleep in the room and have my own bathroom (no shower). It's further away from all my heart baby friends, but I guess I'll survive.

Ben started Kindergarten yesterday. He's so darn cute!!!! He absolutely loves it. He woke up early this morning and was super worried that he was late for afternoon kindergarten. He gets to pack a snack for recess and has already made friends at the bus stop. He also informed me that his loose tooth is ready to come out. It's NOT, but he is so ready to grow up! So here are a few pictures from his first day:

Standing in front of the school

Ready to go inside!

Making new friends in the playground.

Showing off their wiggly teeth! :)

Sitting in his spot, ready to learn!!!

We're Okay!

2008-08-25T10:41:00.003-06:00

SO SORRY FOR NOT POSTING!!!
I've had such a crazy few days.
First, Elaina is still about the same. She's having fevers, although not as high as she had the other day, but still fevers. They have sent more blood for cultures, even though we never get any answers this way. They've also sent more poo to see if there is something going on in her bowels. Her poor little bummy is so red, her poo is just SOOO watery and there is blood tinged mucus as well. It could be a virus, but we won't know for a day or so. Otherwise she's sweet as can be, and still continuing to work hard.
I took an opportunity on Friday to take a tour of the South Davis Transitional Care facility. It's a lot different than what I'm used to at Primary Children's, but I feel that it would be in Elaina's best interest to be transferred there. She's just having such a hard time proving any stability in the PICU, and because it's the ICU, there are certain things that they have to do in her care. Today the doctor from South Davis is going to come and evaluate Elaina to see if she would fit in to the level of care offered there. I'm hopeful that she will be able to go, it should only be for a couple of weeks, but they will be able to "fine tune" Elaina's needs for home. They also have the ability to slowly transition home, 12 hour trips home, 2 nights at a time, that kind of thing. This way it won't be so scary for me to be home all alone with her and her 24 hour nursing needs. I will know more this afternoon and will post tomorrow.
Now, the reason for not posting for so long. On August 17, my sweet Aunt Judy passed away. She was 83 years young and so full of love and life that it took my whole family off guard. I was standing in my kitchen when my dad called me that night to tell me the news, and I almost fell over the shock was so great. My dad is the baby brother in his family (he has a baby sister), and this is the 1st of his grown siblings to pass away. (His oldest brother Bob was killed in WWII) Anyway, this past weekend was filled with the viewing, funeral and family time together mourning our loss. Her son, daughter and grandchildren gave her a truly beautiful funeral. My Aunt Joanne was here from Las Vegas and also spoke, it was so hard for her to get up and talk about her big sister. They were so close and loved spending time with each other. It was so nice to be able to see cousins from out of state that I rarely get to hug, but I truly wish it had been under different circumstances. It was a beautiful but bittersweet weekend. My parents did a quick trip out for the services, getting here Thursday night and going home on Sunday morning. I could see the sorrow on my fathers face as well as his remaining siblings and it hurt to imagine the feeling of loss that they were forced to experience. I love my Aunt Judy tremendously and I know that there is an empty spot that cannot be filled in our family. She will be greatly missed.
Love,
Hollie

Photos by Now I Lay Me Down To Sleep

2008-08-21T20:44:00.012-06:00

I finally got the pictures back from our photo shoot last month! So here are some of my favorites. They're all black and white and I really love them!

Fevers, fevers, fevers....

2008-08-20T22:58:00.006-06:00

Fevers are not my friend.
They are not Elaina's friend either.

Today Elaina had her highest fever ever. It was 40.9 Celsius. Round it up and 41 C translates to 105.8 Fahrenheit, so she was just burning up. They gave her an "ice bath" by putting cold wet washcloths all over her body and under her arms. She's also on a cooling blanket. At one point her heart rate was 220 due to the fever, but once she cooled down, her heart rate went down too. The hard thing is that it keeps going back up if she's not constantly cooled and given both Tylenol and Ibuprofen. They drew more blood for cultures and also took a stool sample. I guess her diapers are very liquid with mucus and there was a tiny bit of bloody streak in some of the mucus in one diaper, so they decided to send a culture just to be on the safe side. They also stopped all of her diuretics and increased her fluid intake by quite a bit because she's just so dehydrated from the constant high fevers. Anyway, at this point I really don't know what's going to happen or when we will be going home. I talked with one of the nurse practitioners tonight about the possibility of transitioning to a Pediatric Transitional Acute Care facility and then to home. There are definite pros as well as cons to this possibility. There is just a lot that I have to think about. These fevers are scary and I truly want what is best for Elaina. I have some serious praying and tough decisions to make.
Ben and I had a great day today! We went to his Kindergarten assessment this morning. We asked the teacher about getting into the all day program and she said that we would need to test first. Well, he did such a great job that she told us that it was very unlikely that he'd get into the all day class. She said that the all day class is tailored to kids that don't know their abc's or how to write their names and such. I guess Ben's just too smart for his own good! I took him to lunch and to run errands afterwards and we had a great day together before I came up to the hospital.
Well, thanks for all the love, prayers and words of encouragement. This journey is difficult, but I know it's worth it.
Love,
Hollie, Ben and Elaina

In a Holding Pattern....

2008-08-18T22:26:00.003-06:00

So much to tell....
First, Elaina is still having her fevers. She's between 102 - 104 on a consistent basis. SO, it was decided today that her broviac is the most likely source of these fevers. Since it's the only "foreign" object in her body (not counting the feeding tube!), the general consensus today was that her body was fighting it and it needed to go. On a quick side note, little stinker bug decided today that she was going to make life more difficult for everyone and she pulled her NJ tube out. They were able to get it back in, but she kept trying for the rest of the day to get it back out. I'm gonna have to keep my eyes on her and socks on her hands!! Anyway, back to the broviac..... We ended up taking a trip downstairs to fluoroscopy where the offending line was removed. They let me stay in, behind the glass due to the radiation, and I was able to watch the 'real time x-ray' as they removed the line. Elaina got some sedation, and they inserted a small guide wire into the line. There was a small balloon holding the line in place, so they had to make a small incision to get it out. It took less than half an hour. On the upside, we were able to get a peripheral IV into her so that we can continue giving her the good antibiotics. Oh! and get this! They got the IV into her LEFT FOOT!!! ON THE FIRST POKE!!!! This is the foot that was so purple, attached to the leg that was so dusky, that they were talking to me about amputation! I forgot to tell the IV team not to touch that leg, and then they poked, and I thought, "oh no, they're not going to get an IV there...." but I didn't want to say anything, just in case it worked (I was praying that she didn't have to have ump-teen-million pokes for a single IV), because I knew that if I said something they would pull it out and poke her somewhere else before they even tried to flush the silly thing. Anyway, I was VERY pleased that we were able to get IV access, on the first try no less! So now the plan is to watch her and see how she does. If her fevers go down (hopefully they go away) we will be home by dinner time on Tuesday. If she still has fevers, we will continue to watch her and give her the IV antibiotics for another day or so, but we are definitely the closest we've ever been to getting home. I even went to the grocery store tonight and stocked my fridge with good things to eat and easy things for Ben to grab for himself when he's hungry. We're getting so close.....Keep praying us home!!!
Thank you all SO much!!!!

Gotta be kidding!

2008-08-16T22:36:00.002-06:00

I will never learn. I must not ever say the word "home". I must not even spell it out.
Today Elaina spiked another fever!!! This is the highest one in awhile, 40.1 (aka 104). Nothing is helping bring it down. We've been giving her Tylenol, setting her on ice packs, you name it, and the fever stays up. It's gone as low as 102, but not down to normal for any extended period of time. Poor baby. When her temperature is up, so is her heart rate and she is just plain miserable. So, here's the worry: we think her broviac line might be the source of the fever. If it's infected, I just don't know what we'll do. The strongest antibiotics are IV, and if we pull the line, there is no guarantee that we can get IV access. She's such a hard poke....
Anyway, I'm once again discouraged as home feels like it's slowly slipping out of my grasp....

It's all good...

2008-08-15T23:41:00.002-06:00

I left the hospital on Thursday, without Elaina, but it had been 2 weeks since I'd been home and seen my Ben. He's finally over his cold and I was in desperate need of hugs and kisses! I got home at about 4:00 and Ben and I snuggled up on my bed to watch a movie, and both of us fell asleep. I woke up at about 6:30 (I needed that nap!) and made him his favorite dinner, spaghetti. He woke me up bright and early this morning, but I went back to sleep for a little bit. We had a good day, it was so much fun to spend the day with him. He starts kindergarten on the 25th! I'm supposed to take him to his kindergarten assessment on the 20th. I guess his school is trying out a new program, all day kindergarten. I really hope that he gets chosen for the program. With as much time as Elaina takes, it would be nice for him to be at school all day. I took him school shopping this afternoon, I can't believe how big this kid is getting! He was so cute, he wanted me to buy all kinds of school supplies. I told him that we needed to wait for his teacher to give us a list, but he was having a super hard time not putting everything in sight into the shopping cart. Anyway, he's having a sleepover at his friend Sean's house tonight. He was super excited. It's kind of neat, Sean's mom Heather and I have been friends for about 23 years. Holy cow, I feel old!! I'm so grateful that our boys get along so well. It's super fun, especially for them. Poor Sean has 3 older sisters (who all adore Ben too!) and so he especially loves it when Ben comes to play!
Elaina had a good day today too! I didn't make it up to the hospital until shortly after 7pm. I was able to snuggle her for a little while before it was time for her bath and bedtime chest PT, suction, and medications. I am going to be one busy momma when I get home! The discharge planner talked with me today and everything is set for M-o-n-d-a-y! I, of course, am not going to fully believe it until we are in the car and on our way home, but everything is ready! I'm going to spend Saturday and half the day Sunday at the hospital, then go home Sunday (if I get the warm feeling from the docs...) and plan on coming back up on Monday morning to get out of here! We're getting closer! I really hope that this time it's for real!

Answers?

2008-08-13T22:58:00.002-06:00

This day started out with high expectations. I truly thought that I would be able to find out SO many answers. I got some, I'm not sure they were the answers I was looking for. But in a way, they were.
I had my Care Conference at 3:00 this afternoon. This conference was actually planned last week when they were trying to get Elaina moved to the floor and they had been talking to me about hospice, DNR papers, etc. The reason that we waited until today for the conference was that Elaina's cardiologist, Dr Cowley (we see him both in and out-patient) was not available until today. I'm glad that we waited. Dr Cowley tells it like it is, and I really respect that. He told me that he agreed with the decisions I'd make concerning Elaina's DNR and he said that he would continue to advise me on it (for possible revisions) when and if it was necessary. He said that he thought it was worth sending Elaina's records to Stanford, but he said that he didn't think that a heart/lung transplant was something that he would recommend for Elaina. He told me that the waiting list is two years or longer sometimes and that the last he heard, it only extended life by a year and that it was a miserable existence for the lung recipient. He did support my decision to get the information from Stanford and to make an informed decision on my own. He also told me that he thought that there was a chance that Elaina could continue to improve and that if she does, there will be other surgical options available for her down the road. Probably not until she is between 3-5 years old, but options will become available the older she gets. This is all dependent on her lungs improving and her pulmonary arteries growing with her. Of course, no one has a crystal ball and no outcome is ever a guarantee. We just have to take it one day, one week, one month at a time. We also talked about feeding methods. Right now NJ is the best way to go. We cannot risk stomach contents that she could potentially asperate. Eventually we would like her to have a Nissen and G-tube, but that would be 4-6 months down the road. She isn't strong enough right now to go through another surgery, and since she tends to use her stomach muscles to breathe, having them sore from surgery would really decrease her ability to get stronger. In all, the conference was very good and I know that I do have a good grasp of the situation as a whole. Anyway, there is a concern that I will be able to manage all her cares by myself when we get home (shhhhhhhh....we're aiming for m-o-n-d-a-y), so the team was hoping that I would be able to have a couple of family members come and spend a day learning how to do some of her cares so that I can have a helping hand now and then. They've strongly advised me not to take her many places in public. They said that a walk in the park or in open places is okay, just not allowing anyone to touch her or get too close. No church, no stores, and very very cautious at the doctors office.
Once the care conference ended, Elaina was taken in for her scope. It lasted less than 30 minutes and they said that everything looked good. There is some scar tissue on her vocal cords, but that's to be expected with how long she was on the ventilator. Otherwise they didn't find any obvious obstructions. They said that her obstruction is most likely in the soft tissue at the top of her throat (which they can't repair surgically) and she will outgrow it eventually or it could be due to all her secretions. Either way they fully agreed with the use of her c-pap. I really feel like it make a huge difference today. She was on it for 12 hours last night and all day her saturations hovered around 80 on 1 liter of oxygen. It was great! She also didn't have any fevers today and didn't need a whole lot of extra sedations. I'm willing to take as many good days as she's willing to give me. She really wanted to snuggle when she got back from the scope, and I was glad to be able to give her lots and lots of extra hugs and kisses!

Sleep Lab Results

2008-08-13T00:04:00.003-06:00

The sleep lab results came back today. Elaina gets her c-pap! In fact, the results have started quite the commotion here! Elaina has severe obstructed sleep apnea. They told me that she had 20+ episodes every hour that they were monitoring her. They also recommended a follow up by the ENT team (ear, nose, throat) as soon as possible. So they came by today and after a thorough examination, it's been decided to take her to the OR for a scope. I'm little confused as to what they are doing, after I got back from break tonight the nurse was calling it a bronchoscopy, and I know that she had one of those a while ago when she was intubated. Anyway, from what I understand, they are going to put a little camera down her throat to see if they can find any obvious obstructions. I'm not quite sure what will happen if they do, but there's got to be a cause behind her apnea, so we'll just wait and see!
I also have a Care Conference scheduled for Wednesday afternoon. I'm having one because I want to be able to talk to not only Elaina's team in the PICU, but her Cardiologist as well to make sure that we're all on the same page. We're also going to discuss the whole Stanford thing. I know that they started the referral last week, but they told me it could take up to a month to hear anything back. Anyway, I want to know what Elaina's cardiologist thinks about the idea as well as what his future plans are for Elaina. I'm preparing myself for the worst case scenario. They haven't given me the most positive outlook so far, so I'm not fooling myself into thinking that it's going to change dramatically just because I asked for a care conference.

So today was hectic busy, but that seems to be the norm here. Elaina still had her fever today. She's got the team pretty confused. They're starting to wonder if the fevers are a sign of heart failure, but she doesn't have any other prominent symptoms that would point to that, so it's just got everyone puzzled.
Well, I am totally completely exhausted. I didn't find out until 11pm that I didn't get a sleep room, I was on the stand-in list (in case one of the other families went to a hotel or something) but I didn't get lucky this time. Oh well, I'll sleep on the pull out in Elaina's room. It's not the most comfortable thing in the world, but it sure beats sleeping in my car!

Please help me pray for my friends the Bailey's. Their daughter Brooklyn isn't doing well. She's just one month old and the doctors don't think that there is anything else that can be done for sweet Brooklyn. She's got so many clots caused by procedures that they don't know how much longer she'll be able to hold out. Her family has been given the "talk" and now have to make the hard decision regarding Brooklyn's life. I know that prayer is what has gotten Elaina and I to this point and I have faith that the Bailey's can find comfort and the answers that they seek.
Thanks for all the love and support!!

PICU Day 61 and....

2008-08-11T23:41:00.003-06:00

And Miss Elaina decided that she wanted to have a fever. She's been about 102 all day, even with Tylenol. They can't give her Ibuprofen with her Lovinox, so we had to just hang out. I wanted so desperately to hold her, but my body heat with her fever was not a good combination. So we put ice packs under her back and cool rags on her head. I held her hands and gave her lots of loves. Poor baby, the fever made her so uncomfortable. We were able to give her a little extra sedation just for comfort. I decided not to take her on her daily walk, I really didn't want to take any risks since she had a fever. I'm hoping that it is just related to fluid balance. This morning the cardiologist thought that she sounded a little 'wet'. They thought that her heart sounded more like a gallop and less like her normal swooshing. We decreased her free water and took down the rate on her feeds, so hopefully that will help her out. She did a 2 hour car seat trial, and passed with flying colors, so at least that's out of the way. Everyone passing by was so excited to see her sitting in her car seat, even though it was in her crib.
We didn't hear back about the sleep study yet. We're hoping that we'll know by Tuesday. The nurse practitioner told me that if the report isn't in the computer by mid-morning that she will call down and see what's holding it up. Fingers crossed. She's off the c-pap for now, we don't want her getting used to it if she doesn't get to have it at home.
Anyway, no one will give me a definate answer about going home. So, I'll stay and try my hardest to be patient. I want to go home! I miss my house, my bed and most importantly, I miss my BEN! He's still getting over his cold, so I haven't seen him in over a week and I am going through major withdrawls. I miss his hugs, I miss his kisses, I just miss him. It's so hard being away from my sweet boy. I keep hoping that I'll be home soon so that my kids can be back together under one roof.

One final note:

HAPPY BIRTHDAY ELAINA!!! WOOHOO!!!
7 MONTHS OLD!
KEEP DOING IT SWEETHEART!
I LOVE YOU!!!!!!

Day 60 in the PICU

2008-08-10T20:52:00.002-06:00

So, we've now been in the PICU for 60 days. It seems like forever!

Not too much really going on. Elaina was able to have her sleep study last night. I won't know the results until Monday and then we'll start talking about getting out of here. I really don't see an urgent need for Elaina to be here now. She's getting all her medications by mouth, so no IV at the moment. The broviac is still in, but not being used for anything but labs, and it will come out as soon as we're ready to go out the door. I think it's just red tape that's keeping us here for the most part. We're on floor status, but not on the floor, so we've just been hanging out. Lots of snuggling going on here!! I took Elaina on another wagon ride, but the outside adventures were vetoed by the other doctors, so we've just stayed in the PICU. I'm pretty much doing all her cares and giving all her meds, holding her and just plain doing the Mom thing. I know that it will be much different once we get home, but I'm feeling up to the challenge. I realize my stresses will change, but it will be SO nice to be at my house and sleep in my bed. Not to mention, I am SO tired of cafeteria food!!! A good friend took me to dinner the other night and it felt so good to do something normal. It's not something that I've done in a long time, and I'm sure I won't be going out often once Elaina is home. I loved it!!
I think the hardest part about leaving the hospital will be the friends I've made here. There are so many other heart mom's (and other mom's!) that I feel so close to. It's amazing how having a child with medical problems draws families together. I'm going to miss seeing them, they are all so strong. Daxton, Teagan, Stella, Dylan, Jackson, Gracie, Brooklyn, and many others are here and still fighting their heart battles. Their parents have all given me strength and comfort during Elaina's stay here and I will miss seeing my friends. I will keep them in my prayers and in my heart.
I will know more on Monday, so I will try to post as soon as I have information. Could be we're out the door Tuesday or Wednesday. Of course I truly won't believe it until we're in the car and driving home!!!!!!!

Friday Follies

2008-08-08T23:31:00.008-06:00

Elaina had a good day today! She's back down to 1 liter of oxygen and her sats hovered in the high 70's and even 80! The PICU doctors tried to transition us to the floor, but the doctors on the floor were "afraid" of her. They said that she looked too blue and her acceptable sats were too low (we accept sats of 60 or higher...) and that she would continually scare the nurses. Can you imagine being afraid of this??

Or this?

So we decided to take a wagon ride around the PICU today instead.
Elaina even got to sit in front of the window and see the blue sky and clouds.
If she's really good tomorrow, the Nurse Practitioner said that we could take a walk outside to the Angel Garden for some fresh air! I'll take lots of pictures if we get to!

We're once again talking about the "H" word. I'm not going to spell it out because I swear I jinxed it last time. There are just a few more things holding us up and then we can get out the door. Home Health won't pay for the c-pap unless Elaina passes a sleep study. The pulmonologist came and evaluated her today and he said that he thought that the c-pap was helping her, but that in order for her to pass the sleep study he'd need to have her oxygen down to 1/2 liter or less. The doctors agreed to lower the O2 for the study (they want her on 1 liter minimum) so she's scheduled for Saturday night. He also told me that he had seen a lot of kids with Di George that had sleep apnea, and that they all benefited from having c-pap at night. He just transferred to Primary's from Denver. Hmmmm. Any other DiGeorger's out there that use c-pap? Anyway, we've changed her to floor status (in the PICU) and the docs wrote an order in the chart that I (Super-Mom) am in charge. The nurses do their assessments every 4 hours, but I get to give her all her meds, do her chest PT and suctioning, change diapers, and practice putting on her c-pap. Basically, I'm doing in the hospital everything that I'll be doing at home. They want to make sure that I am comfortable and confident in her cares to ease the transition.

She was really tired after her busy day of socializing and wagon riding, so she took a nice little nap. Notice the cute blanket? My sister Tricia and her daughter Kate made this blanket and donated it (along with many others) to Primary Children's. It found it's way to Elaina's bed and when I told the nurses that Elaina's cousin had made this blanket, they told me that we could take it home! Yay!

This is after her bath and with her c-pap on. She really loves to snuggle with her teddy bear. The c-pap puts her right to sleep too. Of course I'm sure it helps that she got her bedtime meds a few minutes before. I hope that she can have a restful night....

Thank you all so much for your encouragement and support. I try so hard to remain positive, but it's hard sometimes when the doctors keep forcing her condition down my throat. I won't know anything from Stanford for a few more weeks, so I'll post when I hear something. I know that through our Savior anything is possible and that He has a plan for Elaina. I am so grateful for her and her life. I know that if I live every day to the fullest and fill it with joy and happiness I will never regret the time I spend with my sweet angel. She remains so precious to me!! Please know that your words of kindness and prayers mean so much to me and help give me the courage to continue on this journey.
Love,
Hollie

Tough Day

2008-08-06T23:29:00.009-06:00

**WARNING**
Emotional material, proceed at your own risk.
Pictures at the bottom of the post.

I have had a really rough couple of days. Call it a reality check of the worst kind. Elaina continues to improve, but I've been forced to face the reality of the situation. It has been really difficult to make some of the decisions I've been asked to make, but I feel like I have made the right ones.

I've been told for the last month that there are no surgical options left to repair Elaina's heart. The doctors now think that the central shunt that was put in during her last OHS is not open and giving her adequate blood flow to her pulmonay arteries. This is why she continues to look dusky and her saturations stay in the high 60's to low 70's. To open the shunt would mean a trip to Cath Lab. Unfortunately, the risk outweighs the benefit of this. They only way that they would be able to get good access to the shunt would be to go in through her Glenn. Not only is this highly dangerous, but a clot in her Glenn would be fatal. All of her past cath sites have clotted. There is no way to guarantee the success of this procedure. She would also need to be re-intubated for this procedure, and I just cannot do this to her. Again, the risk outweighs the possible benefits.

Due to Elaina's pulmonary hypertension, and her partially collapsed lung (permanent) she is not a candidate for a heart transplant. Here's where the biggest problem lies. Her pulmonary arteries are small and the doctors are not certain that they will grow with Elaina. They have told me that it is quite possible that as her body outgrows her pulmonary arteries, she will continue to have saturation problems until her heart and body just give out. They do not know if this will be weeks, months or what. They cannot give me any idea of what is going to happen from this point on. BUT, if Elaina's pulmonary arteries do grow, there may be surgical options available for her when she is 2 or 3 years old. There is just no way to predict the outcome. I sure wish I had a crystal ball sometimes...

Yesterday they asked me to think about signing a "Do Not Resuscitate" (DNR) order for Elaina if her heart stops. They believe that CPR would not be successful and that it would be a very traumatic way for Elaina to die. Even if they were able to resuscitate her with the CPR, there would be no way to surgically repair the damage done to her heart by the event and/or the resuscitation efforts. It would just prolong the inevitable. I completely fell apart. I feel like my world is crashing all around me. Needless to say I had a night filled with prayer. I am so scared and only hope that I have made the right decisions today and can continue to make the right decisions for Elaina's future.

So, now we get to the new plan for Elaina as well as a possible new option to explore!

Right now, the plan is to get Elaina strong enough so that she can go home and have time with Mom and Ben. She's back onto regular nasal cannula oxygen (currently 3 liters) as of today. We'd like to get her back down to 1 liter if possible. We still need to get her diuretics and electrolites balanced. We're getting close, but it will still be several days before we get there. We are hoping to be able to transition to the floor before going home. This is just to make sure that Elaina is truly stable and to give her time to gain more strength. Going home is in the future, but the most likely scenario at this point is that we are going to go home on Hospice care. Not exactly what I'd had in mind up until now, but it's probably for the best. Just because we start out with Hospice does not mean that it will continue, if Elaina once again proves everyone wrong, it can be cancelled and we can move forward in a different direction. The benefit is added peace of mind at home and some helping hands for Elaina's many medical needs. The point is that nobody is certain of the outcome and I want to be as prepared as possible.

Now, there is still an avenue of hope that I am going to pursue. Just because Elaina doesn't qualify for a heart transplant doesn't mean that we're out of the running completely. One of Elaina's doctors thinks that she may possibly be a candidate for a heart and lung transplant. Here's the twist, they do not perform this procedure at Primary Children's in Salt Lake. The nearest facility that performs this procedure is Lucile Packard's Children's Hospital at Stanford. Dr. Zebrak also works at Stanford and she said that if we get the ok from Elaina's cardiologist, she will personally contact the team at Stanford and see if Elaina is a candidate for this procedure. She said that she would also be able to arrange transport for Elaina if I were to decide on this course of action. At this point I want to at least know what our options are, I don't know if Elaina is even eligible for this, but I want to be able to make an educated decision. When it's all said and done, I want to look back and know that I didn't leave any stones unturned and that I did what was in Elaina's best interest.

I also know that God works miracles. I may never even need to go to these extremes. Ultimately this is all in God's hands, and it is His plan that takes precedence. I truly put my trust in Him and hope that whatever the outcome is, it will be a miracle in our lives.

That said, here's some pictures. She's such a sweetie!

No NJ!! She sneezed it out! I had to take advantage of the cute cheek moment!

Thanks Brynn for bringing up the cute flower backdrop!

You've got to just laugh at the ridiculous c-pap setup that she's wearing! This is what they plan on sending her home with!!! Funny thing is, she tolerates it just fine while she's sleeping. Go figure!!

Had a good day

2008-08-04T22:03:00.002-06:00

Elaina had a pretty good day today. She didn't really have that many changes. We're still tweaking her diuretics and electrolites and she was able to come down to 7 liters on the high flow. She was awake for a good part of the day and seemed very interactive. I even think I caught a couple of coy little smiles. No big grins, but at least she seemed pretty happy. Her eyes are SO expressive. Sometimes I really feel like she is trying to tell me things. I'm going to have to film her tomorrow, she's so sweet. She loves having all the attention, but she didn't cry today unless it was for her binky. Thank goodness for the binky! We've decided to try putting her on c-pap tonight to see if maybe having the benefit of positive pressure in her lungs for a period of time will help her overall. This is actually something that I could do for her at home if we find that it helps. She can be on c-pap at night and then her regular oxygen during the day. If I understand correctly, the positive pressure given by the c-pap will help open up her airways and she won't have to work as hard. I guess when she's asleep her breaths are more shallow and she breathes faster, so we're trying this in an attempt to give her a little extra rest at night because the c-pap will do part of the work for her. We're just doing it as an experiment tonight and we'll see if it helps her out. If it doesn't seem to help her, she'll go back to the high flow and we'll keep on truckin!
I stayed at the hospital again tonight. Ben has a cold, and since I really can't afford to get sick right now (for a number of reasons...), I'm staying away and leaving him in my Aunt Kathyrn's capable hands. Poor kiddo, he hates to be sick....