We’re in the south so I had better start talking like I’m in the south.
Miss Maisie has been doing very well since our last update. She came out of the isolette and has been maintaining her temperature very well. The concern about taking her out of the isolate has also been that she would be working too hard maintaining her temp that she will use up her calories instead of putting on weight. But… that night she put on almost an ounce! She has been pretty consistent since. This means one less wire connected to her little body.
The major concern has been her feeds.
This hospital is a teaching hospital and has their set-up as follows: the residents do a rotation through the NICU (and the other NICU as well as PICU), and they ‘take’ a maximum of 24 patients. All the rest of them are with Nurse Practitioners. The Nurse Practitioners can have 60+ patients at a time. That might seem crazy but the outcome is that the Nurse Practitioners get A LOT of experience whereas the Residents only get the month that they do this rotation. Maisie is with the residents. This means that her care tends to be slightly more conservative as the residents don’t really know what the baby is capable of. This has not really been a concern until this past week.
I had been putting Maisie to the breast and then we were feeding her through the NG tube when she tired out. The other 4 feeds (when I wasn’t there) were done by bottle and when she tired out, the rest would be tubed. It became clear that the residents were figuring out how much she was getting by mouth and basically ignoring anything that she might be getting at the breast. That means that, at best, she was only ever going to be 50% PO (by mouth) according to the percentages, as I am there for 50% of Maisie’s feeds. When you simply look at that number, it looks like Maisie wasn’t doing very well… I spoke to many of the nurses and the consensus seemed to be that if I breastfed, Maisie would be in the hospital for very possibly an extra week. So… I stopped nursing and started doing bottle feeding when I was there. It didn’t feel right but in the greater picture, the doctors were getting their numbers and our little Miss Maisie was growing and getting stronger and getting closer to discharge. A couple of days ago the doctors said that she was taking 71% of her feeds and improving daily. She is also gaining weight like there is no tomorrow. She has been putting an anywhere from 15 to 40 grams per day.
About 3 days ago, Maisie really started instinctual rooting and really opening her mouth. The nurses had been telling me that Maisie would ‘click’ and suddenly seem to ‘get it’. It appears as though, she was suddenly getting it. But every time I went, I was giving her a bottle and explaining to each new nurse why I wasn’t breast feeding, especially after I had fought so hard to breast feed. Finally yesterday, I put her to the breast again. She had a beautiful wide mouth and was turning her head every time I touched her cheek. It seemed silly to not put her to the breast. But… it meant that once Maisie tired out, they would tube the full feed – 36 mls – and pretend that nothing had been by mouth. I spoke to the nurse and explained my concerns (we had actually spoken about them earlier) and he offered to go and speak to the resident and get a different order which included breast feeding and didn’t penalize Maisie and I for this choice. He came back with the best possible scenario. It seems that when he asked the resident, there was a Nurse Practitioner standing right there. The resident expressed her concerns that if I breast fed they wouldn’t know Maisie’s caloric intake. After some discussion the resident asked the Nurse Practitioner what she would suggest. It was suggested that I put Maisie to the breast, let her nurse and when she was done at the breast, give her a bottle and when a certain period of time was over, call it a feed. Monitoring that for a few days will clearly show whether or not Maisie is doing well with it through her weight gain. Additionally, if she did not get enough, she would wake up after an hour or so after the feed, hungry. That would be a clear sign of how she was doing. What a relief. Soooo….
Maisie is nursing again.
Maisie might be getting her NG tube removed today. Thats pretty exciting. It means that they will be allowing all of her feeds to be done by mouth. When she shows consistent weight gain over the course of a few days to a week, she can be discharged. Exciting stuff!
We now have a car seat which can accommodate a wee one starting at 4 lbs. I’ve done all of the training and now all that needs to be done is to put Maisie in the car seat for an hour and make sure that her heart rate remains regular and does not drop. Then she will be good to go! She’s been pretty solid as far as that goes so I do not foresee any concerns.
I’m feeling like we are in the home stretch. I still don’t know when we’ll get home but I think that I can see the end of our hospital stay.
We are having some adoption process issues. I can’t talk about them here at this point, but they are very frustrating and have caused some tears in the past week. I know that it will all go well in the long run but…. It’s the timeline that I am concerned about. Some things that should already be complete, aren’t. And there is really nothing that we can do about it.