Is anyone there?

Hello?  Does anyone ever check this dead blog anymore?
I'm so sorry for my absence.  Please just know that we have been enjoying life to the fullest!

Elaina continues to thrive and defy medical expectation.  She loves pre-school.  She loves being outside and especially loves to swing.  She is still in love with her Disney princesses.  Cinderella, Belle, Ariel, she loves them all.  She also finds great joy in Nemo, Monsters, Inc. and Cars.  What can I say, she's addicted to all things Disney. If you really want to make her happy, give her a sippy cup of ice water and play bouncy (or tickle) with her!  She is such a happy sweet wonderful girl!

Ben just turned 10 and is growing up into an amazing young man.  He is the best big brother that any little girl could ever ask for.  He loves being a Cub Scout (he just earned his Bear badge), he loves riding his bike and swimming.  He loves building his lego's and is obsessed with all things Mario (Nintendo).  Throw in some Angry Birds and reading some Diary of a Wimpy Kid and that makes his life complete.

Now that I've done a brief catch up, I just wanted to say that I'm going to make a private blog.  If you'd like to keep up with us, please comment with your email address so that I can send you an invite.  I just worry about trolls and others that take advantage of special needs families and I want to be able to post pictures, etc. without worry.  :)  Thanks for your understanding and I hope you'll want to keep up with us!

Hollie

** Side Note:  I will still keep this blog.  I will update for any medical emergencies or procedures, so if you don't want to give me an email address for the private blog, you can still check here if something big were to happen!  Thanks! :)

Baby, I'm AMAZED!!

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

Enjoy!

Poor, Poor Neglected Blog...

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!

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

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?

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....

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

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

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!!!!

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!

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!

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

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