- how much food to give the girls to keep the full, yet not make them puke
- at what time to give Maddy her Prevacid and Zantac in between feedings to reduce the pain of the reflux
- what position they like best to rest and sleep
- how long or short they can stretch between feedings
- how to keep on a schedule
- how many feedings per day they'll take
If we're fortunate, next week, we'll get to throw another big variable in to our daily equation. A variable that's invariably as cute as the others-Isabelle. For the last week and a half, the docs and nurses at Edward NICU have been preparing her to come home after a way-too-long four-month stay. They've continued to look for any explanation of why she may be having difficulty eating and have been practicing with a new feeding schedule.
I think I mentioned before that her ENT exam showed there was nothing anatomically wrong that would cause her to have difficulties eating, swallowing, or breathing.
Also, the results from the MRI came back negative, too, which we were ultra excited to hear.
Her direct billirubin numbers are also way back down, close to the normal range. Hers was up near 4.0 and is now back down to 2.2. 2.0, and below, is considered normal. We were expecting this to happen once she was off of the TPN and she's right on schedule!
Feeding-wise, they've been consistently sticking with a 9pm-6am continuous feed through her NG tube. This gives her, and will hopefully give us, the most rest possible when she gets home so she can grow and we can try to keep our sanity. She'll get four bottle-feedings per day at 9am, 12pm, 3pm, and 6pm. We're expecting that she'll eat some by bottle, hopefully more over time, and then we'll have to finish the feed through the NG tube.
Meg and I have already received some training on the medical equipment we'll have at home for Izzy, but still have another session this Friday. I'll write another post on that topic later, when I have some photos to go with it. For now, I'll leave you with some pics from the last week, including Izzy's first captured-on-camera smile. Enjoy!
Meg and Izzy, practicing with her bottle-feeding
This is the first photo I have of Izzy smiling. I can't stop looking at it :)
No paparazzi (aka Dad)! It's odd that I now have a shot of each of our girls in this pose. Did they not know, in utero, that they were being born in to a photographically-focused family???
Meg's mom, Sharon, came to stay with us for a week. She hadn't seen the girls since they were first born and was so excited to see her "big" girls. She helped Meg and me out a ton and even managed to dress up some of our windows while she was here. "Thanks Grandma Sharon!"
After many, many suggestions to try it, we are now on the Moby bandwagon. This thing rocks and is Maddy-appoved! It truly does have mystical powers that can lull even the crankiest of babies to sleep.
Madelyn, catching some Z's after a big bottle
Sophia, getting some tummy-time on the mat. "Hey kid! Why don't you try lifting that head up?"
Before we can bring Izzy home, her primary caregivers need to graduate from the NICU with training on how to feed her, as well as how to insert and remove her NG tube. I stopped by the NICU today, but forgot to let them know I was coming and I missed my window. I didn't even get to hold her because she fell asleep while she was eating and was completely knocked out! Nurse Erin told me she hasn't been sleeping exceptionally well during the day. There was no doubt that she was off somewhere in la-la land and I wasn't about to bring her back from that trip. Erin had to hold her there for an hour like this! I love our nurses :)
Your girls are just beautiful. Sometimes when I read your posts I think about the horrible situation you found yourselves in when Meg was pregnant and being told that, in order for Madelyn to live, Sophia and Isabelle would need to die. I couldn't help but feel joy, seeing that picture of Isabelle smiling, knowing that there were those who loved and cared enough to get her (and her sisters!) here safely, and that that sweet sweet smile was a result of the answered prayers of many.
ReplyDeleteCongratulations of your sweet little family. I'll continue to pray for all of you, and especially that Isabelle will be well, and that she'll get to be home for her first Christmas. :-)
Thank you so much Holly! I'm a little partial to them myself :)
ReplyDelete
ReplyDelete小可愛視訊-真愛旅舍視頻聊天室
ut聊天室視訊-真人裸聊秀場
小可愛視訊聊天室-裸聊直播間
美女視訊影音-真愛旅舍聊天室破解
視訊聊天交友-美女裸聊視頻直播間
視訊美女-做愛裸聊室
173免費視訊-視頻真人秀聊天室福利
金瓶梅視訊-293真人秀場聊天室
live173影音視訊live秀-台灣uu視頻聊天室
live173影音live秀-免費視訊-uu視頻聊天室