Not as hypertonius as one supposes

I tried going to NICU by myself yesterday morning, but I started to cry after sitting there for 10 minutes waiting for Wyatt to wake up. I told the nurse, Diane, I just couldn't do it that day and I went home. Rus went to the evening visit by himself. He fed Wyatt maybe 10ML with a regular nipple.

We both went this morning. I tried to feed him with the Pidgeon, which is the bottle he has had the most success with. He only took around 7ML. He just didn't seem interested. He breathed heavy a lot and quickly fell asleep.

During rounds they decided to change his feedings. He was 2oz every three hours. Then 2oz whenever he woke up, but not to go past four hours without feeding him. Now, they are increasing up to 3oz every four hours. He is supposed to bottle feed "as tolerated" then the rest to be gavaged. No one seems to know what to do. He has a weak suck and isn't coordinating his suck-breath-swallow well. It is neurological, but what it means right now I don't know. Obviously, we haven't given up on feeding him completely.

Debbie, the NNP, suggested that the nurse call Marie Waters and get her over here again and that maybe Wyatt's new room was too stimulating for him. Debbie isn't even assigned to him, but she seems to have taken a bigger interest in him then the intern assigned.

I don't think the fact that the nurses are using different nipples every shift is helping. That is why I want to talk to Marie Waters. She apparently wrote a feeding plan, but today's nurse didn't read it until we mentioned that Marie had been there and fed him 45ML. I am beginning to feel like they don't really have a clue and aren't going to take the time to really help him feed by bottle. Well, some do. I am eagerly awaiting Pat's return on Thursday.

The neurologist came by again for an evaluation. He said that the hypertonia is less severe than Friday. Not that it is severe at all. It's actually quite mild, which is what he meant by not significant. I asked about that. He said what he meant was that it was very mild. He might need a little PT to make sure his joints stay loose. He said it won't get worse. I also asked about talking to Dr. Baker, the geneticist, and he said that he had not. He said he will probably re-examine Wyatt tomorrow. I felt generally better about things after that discussion.

That was until I talked to the SW who asked what the neurologist said about the cause of the hypertonia. I mentioned brain trauma, infection and genetics. I said his cleft palate makes everyone suspicious. She asked about the pathology on my placenta. So I told her. She said "Oh." Later she directed me to the March of Dimes website.

I felt like the whole drama of my pregnancy came up again. I have to keep telling myself that Dr. Walton didn't think that there were issues because the decels were self-recovering. I mean who knows what happened before I got to the hospital, but for now I choose to believe Dr. Walton's assessment. Had the situation been so dire, I don't think the other doctor's would have even discussed sending me home before the OCT. And Wyatt's APGAR scores were good.

And I shouldn't make anything of the March of Dimes website as she mentioned it during the last mother's milk support group meeting. It's got a lot of boards and you can blog your story if you want.

What I am learning as I read more is that what Wyatt will be like is a huge mystery that might not be answered for years. Part of me just wants to bring him home from NICU so they won't find any thing else wrong with him. Francie brought that up as well. She said you have to wonder what they are really doing for him at this point. I have wondered that as well. She said there is no reason why he can't go home with a feeding tube. He doesn't seem to have had any apneas or bradys lately.

It is just the oxygen that is the issue still.

I would gladly bring him in every day to Kaiser for a check-up or Epo shot or whatever. I could learn to re-insert a gavage tube. I would just like him to be in a quiet, stable environment where he has consistent care by people who actually love him. I realize that a lot of joy in these posts is gone and we haven't been taking as many pictures. I need to stop freaking out and enjoy Wyatt more. That's why he needs to be at home.