Progress and Bottle Feed

Emy is healing from her bowel perforation surgery and showing signs of progress. Last week through Sunday, she was on varying doses of vasopressin, epinephrine, and norepinephrine to maintain her blood pressure. It was hard to say why she was hypotensive for so long. On Sunday evening, her CRRT circuit went down and they didn’t restart it until Monday morning. That was not ideal but it also meant that I was able to hold her Sunday evening and Monday morning!

When I held her I gave her kisses on her plump cheeks. She tracked my face and moved her face so she could see me as I bent down closer to her. After the kiss, she shook her head a bit in surprise. It was so pleasant interacting with her in my arms. She studied my face so intensely. Additionally, she gave me a few smiles on Sunday and Monday, which she hasn’t done since the day of her bowel perforation surgery. In total, she gave me 3-4 intentional/awake smiles and 3-4 smirks/sleepy smiles.

When her CRRT machine turned on, so did her voice. I came to realize that the cause of a lot of her fussiness/irritation is likely due to the CRRT machine. It was heartbreaking to see her go from being so peaceful to inconsolable in a matter of seconds. My hope is that she will eventually get used to it and it won’t bother her as much, otherwise this will be a difficult month for her from a pain perspective. Please pray that she is able to find comfort and peace while she is on CRRT.

Emy has been off her blood pressure medicine since Sunday evening and has maintained her blood pressure without intervention. This was a great achievement for her because that meant she was finally able to receive breast milk through her G-tube again! This will help her growth immensely.

In addition to her G-tube feeds, the speech therapist tested her oral skills today by giving her milk with a bottle! She started with only 3 mL, but the speech therapist said she did better than expected: no gagging and no spit-up. This is wonderful news because 22q, Emy’s genetic disorder, is commonly associated with palate and swallowing issues. Due to her need for respiratory support, she missed the window of opportunity early on in life to learn how to eat orally as a reflex— at this point, it is a skill she needs to develop. Please pray that she continues to develop this skill in the coming weeks. We are so thankful to God for her progress this week.