Our journey through dealing with preeclampsia, HELPP syndrome, premature birth, Necrotizing Enterocolitis, the Jejunostomy procedure, the trials, tribulations, joys & sorrows of the process & some interesting bumps in the road.
Friday, March 1, 2013
Mommy writes the update today
Well, to give Ray a break from doing the updates, I'm going to write today and maybe throughout the weekend. Ray and I drove back to Rochester today after working and having appointments the past 2 days. Ray came home Wednesday night to get away from RMH for a little longer than one night.
Upon getting into town, we went straight to the hospital to see Zoey. When we got there the nurse told us that the surgeon wanted to be paged so he could come and talk to us about the contrast study done yesterday. We weren't sure what to think of this...either he wanted to tell us about it and that there was nothing wrong, or that he wanted to tell us about his concerns personally since he knew we'd have questions we'd want to ask him as opposed to his residents, assistants, etc. While I was doing Kangaroo care and incidentally all 3 of us were napping, the surgeon came by. He said the contrast study showed that there is definitely a blockage in the lower half of her intestines so they are not able to re-feed the contents of her colostomy bag into the bottom half of her bowels to allow her to absorb more nutrients. The plan now is that they added TPN which is her nutritious supplement via her central line. They took the lipids out of it because it has caused her liver disease. They are watching her on that but had to find a way to add the TPN because Zoey needs to gain weight. They are hoping the liver disease fixes itself by removing the lipids. So the plan is watch and wait for Zoey to get to 2.5 kilos (roughly 5 pounds) so they can go back in with surgery to fix the obstruction and reconnect her bowels so her GI system is hopefully back to order and in working condition. The surgeon said they could talk and try to push Zoey to be transferred to EC but she'd have to get transferred back to Rochester for surgery and if there were any complications. We decided that it wasn't worth the risk and she might as well stay in Rochester, possibly for the remainder of her hospital stay.
Zoey has been doing well with her breathing and lung development. They switched her to hi-flow a few days ago and has been mostly on room air at 2 liters. This is what any of us would be on if we were in the hospital and needed oxygen. Today, they moved Zoey to 1 liter since she's been breathing so well. She has been on room air even with the change or just slightly above that only requiring a percent or two of help with her oxygen level. This is nice to see her doing well on one of her major organs that they were concerned about at birth.
Ray and I had a productive evening as well. We went and completed one baby registery tonight and will do the other one tomorrow morning before going to the hospital for the day. This is a major accomplishment since we have no idea what to register for aside for suggestions others have provided. We also are living 70+ miles apart half of our weeks so it's hard to have time to both be at a store at the same time to look, talk, and pick items we would like Zoey to have. Ray was tired of shopping before we were done and tried telling me the store closed when in fact it was still open for nearly 2 1/2 hours yet. There was a sales associate nearby so I asked when they closed. Ironically they are open until 11pm so I told him we had plenty of time to keep looking. The sales associate gave him props for trying.
The main goal for Zoey right now is ideally 30 grams gained per day. After one day with TPN added she gained exactly 30 grams. So for the next week, two weeks, three weeks, whatever it takes, we will just keep on keeping on and watching her hopefully pack on the grams or ounces every day.
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