Journal entry by Taylor Swanke —
2 fabulous updates for lil Rayah!
2/15/23 - Day 113:
Sweet Rayah has once again shown us how strong she truly is.
The only thing holding this girl up from going home is having the stamina to eat. On the twins’ due date she was transfered down to CHOW MKE to have further evaluation done.
They changed up her formula a few times, speech therapy has met with her, she had a swallow study done, and an upper GI scan.
The swallow study revealed that at the time she shows her stress cues while eating (pushing the nipple out of her mouth, shutting her eyes, brady d-sat episodes) she aspirates a small amount. Obviously this can be unsafe for her so the decision was made to place a gtube. She lacks some muscle tone yet due to her prematurity but still has plenty of time to work on those muscles. With the gtube we will be able to work on bottle feeding in the comfort of our own home. She doesn’t show her stress cues until about 20 mls has been consumed. So right now she takes 15 mls orally and the rest by gtube. We will continue to work with her until hopefully she can get to the point of taking full feeds by bottle.
Yesterday she had the gtube placed and did amazing! She was able to be extubated shortly after the procedure. Although she did need some reminders to breathe, a little caffeine and some momma snuggles helped with that. She came back to her room on oxygen with a flow of 0.5 lpm, but once the cannula was removed a while later she never needed to go back!
Hunter and I are so proud of her and are more than ready for her to come home. Wesley misses his sis and can’t wait to show her the ropes of living at home💗💙.
2/17/23
115 days.
2760 hours.
Countless miles traveled between home and the NICU.
1 long crazy rollercoaster ride.
Intubation, cpap, intubation again, umbillical line, IVs, heel sticks, an infection, PICC line, eye exams, head scans, echocardiograms, a massive PDA, xrays, surgery (intubation again), and a gtube.
Today we have ended the insane ride that no one plans or dreams to be on - soon my babies will be reunited and our family will finally be back together! Rayah is so pumped to be back with her brother. 💗💙
Peace out CHOW NICU W808 - we won’t miss you! ✌🏼
PS. No words will ever be able to describe how thankful we are for all of the nurses and staff at SEH NICU - our babes wouldn’t be where they are without you! You all will be another family to us! 💗
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