Surgery Day

We have entered into the final phase of Everly's NICU stay with her surgery now behind us.
Today she had the gastrointestinal tube (or gtube) put in place and the Nissen Wrap. The Nissen Wrap is supposed to stop reflux by preventing the baby from being able to throw up. This is accomplished by wrapping a portion of the upper stomach around the base of the esophagus. It is common for surgeons to accompany a Nissan Wrap with the gtube because a gtube typically increases reflux. In Everly's case she was already very irritable from moderate reflux. We hope that this prayerful decision to do the Nissen was the right one. Another update from this past week is that Everly has received ear molds to help mold them into a pretty shape and placement. Her ears were not terribly malformed, but the plastic surgeon noticed that one was "cupping" while the other was very "flat". Both stuck out more than what's considered normal and would continue to stick out more as she grows. The good news is that in the first 4 weeks of birth the ears are so maleable that the dr can mold them into a nicer shape. Everly barely made the cut by having the molds done at just over 4 weeks of age. The molds are a great non surgical option and they are also covered by insurance. That's a rarity for insurance to cover 100% of anything so of course we were on board. I will say that she looks pretty cute with those ear muffs. She's my darling little Princess Leia. Now looking forward we can expect Everly to start her recovery and head home by the first week of November. We are getting close!

 Pre-surgery

If you turn up the volume on this video, you can hear baby girl snoring.  I'd say she was quite comfortable after her surgery. 

1 Month

Everly is 1 month old today and weighs in at a whopping 9lbs and 20.5 inches!  When I realized the possible extend of her NICU stay, i toted all her newborn clothes to the hospital so she could get her use out of them. The nurses are having fun dressing up my baby doll in her pink, polka dots, and bows.  Here are some 1 month old pictures and an updated status on Everly.

• Everly will be on the insulin regulating medicine, Diazoxide, for up to 1 year.  We will check her glucose levels at home. The only side effect to this medicine is "unsightly amounts" of body hair.  Whoa!  Matt and I had a good laugh about that, but we may not be laughing in a few months when our baby looks more like a little monkey.  
• The second genetic test, micro array, came back normal!  We are so happy to finally know that our baby girl doesn't have a genetic disorder.  
• She was put on Prilosec to control her reflux.  Since being on the medicine, Everly has been a different baby. She is much happier and has been able to catch up on her sleep.  
• Tomorrow she will have an Upper GI.
• Everly continues to have a difficult time eating and no progress has been made with the bottle.  If the upper GI looks good, Everly will be scheduled to have g (gastrointestinal) tube put in place.  This will allow us to feed her directly to the stomach. We will continue to practice bottle feeding at home. In the meantime, the g tube allows her to get full feedings, proper nutrition and sugars for her growth and development.  This will take the stress out of feedings for us. 

3 week update

I never expected that Everly would still be in NICU 3 weeks after being born. I guess I was a bit oblivious, or maybe just hopeful, that her condition wasn't so serious.  But the good news is that Everly is doing much better than her first week in NICU and is making strides each day. Since coming off of ivs and oxygen, we can tell that Everly feels more comfortable. Her tone, color, and manner has drastically improved.  This past week we got confirmation that Everly has congenital pseudoarthrosis of the clavicle. We can opt to do surgery or just let it be. The condition is not painful nor does it giver her much physical limitations, unless she is very active. If she is anything like me and loves to be active and play sports than we will most likely do the surgery. Feedings continue to be a challenge. Speech therapy attempts to bottle feed her once per day. Everly has become quite content with tube feedings and does not like the idea of having to work for her food. In fact, she purely despises the milk the instant it hits her tongue. She has maxed out at 10mls through the bottle and her feedings are 75mls so there is a lot of work to do before she can come home. Regular feedings (both with frequency and volume) are critical to maintaining Everly's blood sugars so we have temporarily ommitted breast feeding until she is more stable.  I am glad she still gets my breast milk through the tube feedings though. The endocrinologist saw Everly on Wednesday and placed her on diazoxide, which is a temporary 3 week dose of medicine, that is intended to regulate insulin production. Everly cannot come home until she completes her dose. Although we are very anxious to have her home and to get into a regular routine we are ok with whatever time she needs in the NICU to be healthy. I don't want to have any scares when we have her home.