Since Cora was released on Sunday, I had two days to spend with mom before she went back home. I was glad for those two days because I didn't see much of her at all since she was with Kimball and I was with Cora the whole time. On Monday we went to the River Park Square and did some shopping. We had lunch at the park across the street where Kimball did the usual - rode the carousel, played on the huge radio flyer slide, visited the geese, fed the garbage goat, climbed the blocks, and ran through the fountain. We spent all day at the Square.
Cora did exceptionally well besides one little episode of discomfort. She obviously needed venting and it took me a while to get her calmed down but other than that she did great!
Cora had physical therapy on Wednesday morning which went wonderfully as well. Thursday when speech came, the nutritionist also came. So Jan, Jordan, and I all worked together to tweak Cora's new diet. We started bolus feeds and oral feeds with the bottle. At first we started with 2 ounces but about 20 minutes into that Cora was not tolerating it well so we took it out and adjusted her feeds to 1 oz. Her whole feeding schedule is very confusing, overwhelming, and a bit annoying. The day time feeds are different than night time feeds both in the recipe/concentration of the formula and also the rate and dose that she gets at her feeds. Some are oral, some are pumped into the G tube. It's confusing, thank goodness Jordan wrote it all down!
But, by the second oral feed of the day Cora was not tolerating the 1 ounce bottle well. I didn't know what to do. Was it the bottle, the volume, the concentration, the pain, or the teething?!?! Of course this happened after business hours when I couldn't contact the right people but thankfully Jan is wonderful and lets me bug her as needed. She suggested I just go back to what she was tolerating and call Jordan and the doctors in the morning. I changed her feeds back to the normal 20 calories every 24 hours at a rate of 35 ml.
This morning I called Jordan to see what I should do and she suggested that we get her weight back up to where it needs to be and up to a full feed with full fortified calories and then work in bolus and oral feeds. Good plan! Today we bumped her up to 22 calories and so far she's good.
Getting her stomach back to where it was is going to be a much longer and harder process than I expected. I know the fundoplication made her stomach a bit smaller and it also shrank because of not eating anything (because of the NJ tube and because of the hospital stay) but I thought she would've been able to tolerate the one ounce just fine. But that's ok, one thing I've learned is that Cora is on her own growth/time table and I work around her needs. I think her little tummy just couldn't handle the volume so I'm glad Jordan tweaked her diet to allow for calorie build up first before we introduce bolus and oral feeds.
One thing that will be hard for me to adjust to, is her schedule. For example, if Kimball and her are ready for a nap at noon, I'll just feed them at 11:30 and put them both down. But Cora's schedule is now very strict and not only do I have to get up but I have to wake her up as well to eat. I can work around no naps, but it doesn't make it convenient to go out in public at all. It's difficult to explain without knowing every detail of what she's eating and when, but it will most definitely be quite difficult to leave the house. Which will be hard. I am a homebody but every now and then I need to get out of the house for errands or other house stuff. And have girls night, especially girls night! But it sounds like those will be out of the question for a while. Boo!
Other than that, she's doing really great!!