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 I finally brought in my formula from home and the doctor rescinded the order for increased feeds.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!)