It was a good class, but it was kind of a general class for all babies leaving the NICU. Just a little sad since a lot of the topics discussed did not apply to Neely - like feedings and poopy diapers. We did learn some basic baby CPR. This is great to know and I don't understand why they don't have a nurse come to your room to go over this after any baby is delivered. A lactation nurse helps you with the whole breastfeeding thing, but I think it would also be great to have a nurse come in and do a basic CPR demo.
Anyway, the class was great and we stopped briefly to visit with Neely before I had to take mom home. We thought we'd be right back after dropping mom off, but things never quite go according to plan with the Lucquetes. After lunch and me getting into another silly argument with Josh, Laney started throwing up all over the car! She hardly ever gets sick, so we were freaking out. She had a fever of 100.9 and was definitely not herself. She was whiny and clingy and kept drifting off to sleep. Probably just a little bug, but when you've been in NICU mode for so long, you can't help thinking something much worse is happening. She threw up another time, but we brought the fever down by the end of the night.
Needless to say, we were afraid to go see Neely and get her sick, too. Especially when we are so close to getting her home! We called to get our update from the nurse and she said that Caty (earlier shift) had put the ostomy bag back on. Yay! This meant that the rash around her stoma was finally gone! It was great news, but I still missed holding my little girl.
We went to see her today and she looked great. Four hours a day, she is completely off the TPN (IV feeding). They usually leave her "plugged in", with a bagillion tubes coming out of her Broviac. Today, Caty was able to cap off her IV so that, except for the leads that monitor her heartbeat and breathing, she was completely portable! I got to hold Neely for a couple of hours. She was mostly sleepy, only waking up to let me know she wanted her pacifier back NOW. She did have some good awake and alert time. Caty said Neely had even done about 5 minutes of tummy time earlier in the day.
Other than the rash around the Broviac, she seems to be making progress. She's off the morphine, but is consolable. I'm hoping they start feeding her more frequently again. She was up to 5 cc's milk every 3 hours + 1 cc milk through her g-tube every hour. Would be nice to get back to that point.
She's not gaining much weight - she was only 8lbs 3 oz last night. I don't know how big she needs to be for transplant. It seemed like she was putting on weight better before. But that was before they stopped the feedings. Maybe that tiny amount of breast milk did help her put on weight. Or maybe she just expends more energy now because she is a little more awake, alert, and active. Not sure, but it would be nice if she could drink more milk. I fed her at 6PM (she drank like a champ again!) and it just seemed like she wanted more. It hurts that I can't feed her more. I have to remember that she is not starving - she is fed, even if it's not the way we prefer.
We practiced changing her ostomy bag today. Caty walked us through the process and I feel a lot more comfortable about it. Today might have been our last time seeing Caty - she is off until Thursday. I definitely want to take Neely home as soon as possible, but I am sad if we truly won't see Caty again. She has been like a surrogate mommy to Neely. I know she must be the same way with all of her patients and the NICU is blessed to have her. I do hope we will be able to see her again before we go.
Neely had a visitor today, Aunt Bekki! It feels weird to call her a friend - she is more like family. She's the daughter of Jack and Letty Callaway, who were like another set of grandparents for me and my brother. It was great to see her! She is such a great listener and also gave me some great advice. She also gave Neely a beautiful blanket that my Tante Letty made almost 30 years ago (for Bekki's son). Words cannot express how precious this gift is. I don't have a lot to remember the Callaways by - not even a picture - so this ... well I'll always treasure it!
Okay, time to go clean something or go to sleep. Or pump milk. Or eat ... did I eat? Goodnight, my friends :)