All About Audrey: Home Again!

We are so thrilled to be back home and all together once again! Audrey was released from the hospital on Memorial Day last week, and we have slowly been settling in since then. She still isn't 100% herself yet, (lots of crankiness, fighting sleep, waking up to feed during the night, etc.), but shes's making progress each day for sure. We know she's probably still hurting from the trauma of open heart surgery, so we just try to keep her pain controlled the best we can and be understanding when she's not acting like she used to prior to this surgery. I know it must be frustrating for her to be back in her normal setting, but not be feeling good or be able to put weight on her arms. (We're under yet another 6 week period of sternal precautions in which she can't be lifted under her arms and she can't really do anything on her tummy so as to keep pressure off of her arms and chest.)

We hit a few speed bumps at the hospital that we had to deal with before she could come home. She ended up needing two chest tubes put in, one on each side, to drain fluid that was collecting outside of her lungs. Luckily, those drains worked well and only prolonged her stay by a few days. While one of the chest tube drains was in, it became apparent that the fats from my breast milk weren't being properly absorbed by her lymphatic system, which happens from time to time after cardiothoracic surgery due to them cutting through the lymph nodes, etc. As a result, we had to wait for that issue to clear a bit and she was placed on a special formula that has special fats that don't need to go through her lymphatic system. She'll have to stay on that formula for 6 weeks while her system heals, but luckily can continue her fat free fruit and vegetable diet as well!

Overall her surgery was successful, but we will have to watch the patch on her LPA to make sure she doesn't outgrow it since it already had to be replaced since her first surgery- just seven short months ago. Should that patch need attention, it would hopefully just need to be ballooned out via cardiac catheterization. We will also need to keep an eye on her aortic valve that was slightly damaged in surgery, but hopefully it won't cause noticeable issues and may not ever need to be repaired. Obviously her doctors will be keeping a close eye on all of her heart issues, but those two mentioned above are relatively new to us.

We had her follow up appointment with her cardiologist yesterday and her echo cardiogram and chest x-ray looked great, but the part that was music to our ears was when her doctor said that more surgeries or procedures shouldn't be in her near future!! What a huge relief! This time around was definitely much, much harder because she was so aware of what was going on and it broke our hearts each time someone in scrubs walked into her room and she immediately burst into tears. Every. Single. Time. Plus she just seems to be in more pain this time, bless her little heart.

The best part of all is that we will be slowly introducing her into society over the next few weeks, haha :) She already had a mini visit with her brand new cousin Harrison, and will be going to her first family celebration with her cousin Grace tonight!! Soon, public venues will even be visited! I know this sounds crazy because for most people taking their babies out is completely routine, but it is so exciting for us to finally take her out and to meet all of her loving supporters. Keeping her cooped up the last 7 1/2 months has been so hard for our families and us, but all I have to say is that it was well worth it! She would have been in trouble had she caught a respiratory infection, but we are so happy that our efforts prevented her from getting sick at all! Now her body can handle illness much better so we know it's just a matter of time before that first sniffle or cough, but we're much more ready now. She has so many new friends to meet; she has no idea what she's in for and I can't wait!

Thanks again to everyone for checking in on us, bringing meals, sending care packages, sending sweet cards, etc. The hospital stay was really difficult since Charlie and I were alternating shifts with Audrey, so all of your kindness really helped lift our spirits in what was sometimes a lonely and scary time and still continues to do so today. All of the prayers said for Audrey were answered and we couldn't be more thankful for each and every prayer. The love for our little girl is still overwhelming and we can't wait to tell her about it one day.

Love to all,

Christie, Charlie & Audrey

Here are some pictures from the last couple of months, prior to surgery:

Wild flower pictures at the farm :)

Little chunk loves her bouncer!

Some of her pictures at 7 months

Poor baby has no idea what's about to happen as we wait in the cardiac surgical holding room

Post surgery:

Day 2 in the PICU with her precious name sign from her cousin Grace!

Swollen from all those fluids

Day 3 of recovery

Finally, on day 4, the we got the first smile! We didn't get another one until the next day.

Finally getting more comfortable

Snuggles with Grandma :)

She was so bored with the hospital that the only thing that made her stop crying was a trip around the hospital floor in her first wagon ride! She loved the fish tank too!