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.


  1. I just saw the story of your beautiful baby and your beautiful family on Fox 5 Atlanta, and I had to reach out to you to say THANK YOU. Thank you for sharing your journey! Thank you for sharing Brayleigh and for pouring out your hearts in the story and your blog entries/updates. It was an extra special blessing to see your daughter thriving . . . sucking on her pacifier, looking so alertly at her dad, etc. I am grateful for each new day and each new ray of hope that God has bestowed upon you, grateful for the strength and courage that you have found in yourselves and each other to rise and face the future (the "God in you" that I saw and felt displayed on television). It touched me not only as one loving, caring human being to another but also as one parent of a sweet baby girl diagnosed with Trisomy 18 to another.

    Even though visiting the Trisomy 18 Foundation website and/or doing a little research certainly shows me how many other parents/families have faced the same or similar experience, for a long time I've felt alone or felt that there was no one (at least locally) that could literally relate to my joy and my pain—that is . . . until today. After seeing your story today, I don't feel alone. And, just in case you feel alone too or will ever feel that way in the future, I really wanted to reach out to you.

    I am so glad to see the love and support you have around you. I know you have the help and prayers of family, friends and health professionals, but please know that you can add me as one more person who is truly in your corner and would be more than happy to help with anything you may need. I realize you don't know me, but I live in Stone Mountain and would be more than happy to sit with the kids while you get some rest, lend a listening ear, offer a hug, run an errand, cook a meal, clean the house, wash clothes, etc. for you. All you have to do is ask.

    Please feel free to contact me anytime at I'm planning to donate and walk in the March of Dimes' March for Babies April 25th in support of baby Brayleigh, and I would love to meet you there. May God continue to bless you/your family and thanks so much again!


    Kisha Day