As many of you know, we brought June home on Monday after 117 days in the NICU. The doctors decided Friday was a little soon since changes were still being made throughout the week. Each day, different tubes were pulled, and then they gave June some time to see how her body would handle the change - she is really not big on change.
By the end of the week, surgery wanted to trial feeding her by mouth. Essentially, June has never eaten by mouth. They trial-ran feeding by mouth a couple times when she still had a hole in her stomach, but she hasn't ever consistently eaten by mouth to get nutrients. The doctors agreed she should stay over the weekend to monitor her for 48 hours since this was a major change. June did okay eating by mouth - it was a lot of work for her and takes a long time. Sometimes, we need to vent her G tube because the pressure on her stomach makes her uncomfortable. June came home on a feeding pump. She is fed 33 milliliters of formula and breast milk an hour for 22 hours a day. For two hours a day she is off the pump (especially since we have a lot of doctor appointments to go to in the next couple months). The goal is to see if she can eat by mouth enough that she will eventually only get food through her J tube at night. They prefer that she nurse so that she has better control of the milk flow.
In the meantime, we hurried to get the house ready for June: carpets were cleaned, house was disinfected, medical draw was organized (that was a new one), and getting supplies to prepare to be on house arrest for the next several months, etc... We had CPR training specifically for June, took the NICU to home class, and trained on her medical equipment, medication and cares.
We got home Monday by 4 p.m. Within the hour, home health was coming to admit June. They will be coming twice a week to weigh June and check on her J and G tubes. We got June's medical binder organized and figured out our medical care routine for morning, midday and night. Then we settled down for some much needed family time.
We are starting to get a handle on the medical routine: flushing tubes, giving medication through her J tube, cleaning her tubes, and preparing her food - not to mention just remembering what it's like to have a newborn in the home: multiple outfit and bedding changes, figuring out what cloth diapering system is going to work the best and getting into a sleeping routine. Sawyer is adjusting - some moments are more graceful than others :)
Today we went to the doctor's office for both June and Sawyer. And tomorrow we have our initial meeting with Early Intervention Services to talk about June hitting her developmental milestones.
By the end of the week, surgery wanted to trial feeding her by mouth. Essentially, June has never eaten by mouth. They trial-ran feeding by mouth a couple times when she still had a hole in her stomach, but she hasn't ever consistently eaten by mouth to get nutrients. The doctors agreed she should stay over the weekend to monitor her for 48 hours since this was a major change. June did okay eating by mouth - it was a lot of work for her and takes a long time. Sometimes, we need to vent her G tube because the pressure on her stomach makes her uncomfortable. June came home on a feeding pump. She is fed 33 milliliters of formula and breast milk an hour for 22 hours a day. For two hours a day she is off the pump (especially since we have a lot of doctor appointments to go to in the next couple months). The goal is to see if she can eat by mouth enough that she will eventually only get food through her J tube at night. They prefer that she nurse so that she has better control of the milk flow.
