Thursday, January 1, 2015

First Holiday

We thought Brayleigh would have been home for the holidays. After nearly three weeks in the hospital, though, Miss B. had different plans. On the morning that she was supposed to be discharged (nearly two weeks ago), she had a fairly significant medical event that would change her level of treatment. With no warning, Brayleigh's oxygen saturation levels suddenly dropped, suggesting she was not getting enough to maintain good breathing. At the same time, her heart rate plunged and instantly a code was yelled out by one of the medical staff.  Brayleigh's hospital room was quickly swarmed by over 20 doctors and nurses running to her aid. She recovered fairly quickly on her own, but since then, everyone has been on alert and highly vigilant at the sound of any alarms blaring from her bedside monitoring equipment. 

The last couple of weeks have been very trying with her having increased apnea episodes, several desaturations (or desats) and more discomfort with feedings. Our baby girl's first Christmas was certainly not like what we had envisioned. She was switched from a feeding tube that went straight into her stomach to one that goes into her intestines to help minimize the discomfort from acid reflux. Brayleigh also had to undergo a sleep study and an EEG to monitor her brain activity over a 24-hour period. To make matters worse, an x-ray showed that she could have had what looked like a larger amount of air in her intestines and would have to be off of her feedings all together and on antibiotics until it resolved itself. Only several x-rays would determine how that would progress.
So because Brayleigh was unable to feed, she needed a stable IV line to be able to give her nutrients. Since she is so small, she does not have many "good veins" available to have a steady IV in the arm or foot. Therefore, she was scheduled to have a minor surgical procedure done this past Sunday to insert a central IV line into her neck and through the large vein leading right up to the heart. Chris and I were hesitant to have her endure such a procedure, which would require general anesthesia and intubation (a breathing tube, which she may have difficulty coming off of). A less invasive procedure was attempted previously, but the team did not think they would have much success. Well, a few minutes before she was scheduled to go to the operating room, the medical team decided to try the less invasive procedure right at her bedside to insert the IV, and were successful!!!!! It was one of the best Christmas presents yet....

Brayleigh has become more stable through a host of trials including new medications and being off of her feedings, but most importantly, she has been granted her strength through the grace of God. Her tiny little body has proven that she is such a warrior, fighting to show us that there is certainly a plan for her existence. And despite being told that she may be with us for a week when she was born, Miss B. turned 12 weeks old on New Year's Eve.  What a way to close out 2014, and what a precious gift our family was blessed with.