While in the NICU and soon after Brooklyn’s Trisomy 18 diagnosis, several nurses suggested we watch a video on YouTube made by a family who’s son had Trisomy 18. This video (Corrie still hasn’t watched it) and the hearts of Matt & Ginny Mooney became the inspiration for how Corrie and I would commit to celebrate each day with Brooklyn. Turns out, Matt & Ginny are friends of friends and I’ve had the opportunity to talk with Matt over the phone. They are incredible people and have been a huge blessing to our family.
It has been a while since my last post and a lot has happened, but a lot remains the same. We are still living day by day, moment by moment. There really isn’t a better way to describe our lives right now. Each day seems to bring a different set of familiar or new challenges and celebrations.
I wrote a long update last week and intended to post it but decided not to. The overall tone was frustration and discontentment, which was definitely how we felt last week. Brooklyn had been struggling with being extremely inconsolable and fussy, she had lost weight for the second week in a row, and her red blood cell count had decreased after two weeks of improvements. All in all we were discouraged.
Fast forward to today and life is much different! Brooklyn gained quite a bit of weight, her red blood cell count is up, and has been completely off of oxygen since 9am today. She is also much happier and really isn’t that fussy thanks to some new medications that are taking care of the neurological discomfort that was causing the fussiness. Praise God!
We are extremely thankful and are enjoying our daughter so much. Corrie and I are also sleeping better because Brooklyn is sleeping again.
I really wouldn’t have believed someone while we were in the NICU if they said I would write today’s post one day. Brooklyn had her 3 month birthday on Valentine’s Day and is 97 days old today! Brooklyn is truly a fighter and we are amazed.
After being in this for a while, we are aware that all of the progress Brooklyn has made could change in a blink of an eye. We are monitoring her very closely because she may need a little help from the oxygen or may need to be back on it 24/7. Since being home, she has never needed it to be her only source of oxygen. It has been in place to ‘hold her hand’ and give her a little help.
We still struggle with being anxious and fearful of the future, but as we have fought to do since the beginning, we try to stay present and thankful for right now. Today has definitely been a fun, joyful, and exciting day for our family and we pray for many more!