Happy Birthday

Yesterday, I happened to visit Wyatt just as the neurologist was finishing his exam. I wish I would have come in 20 minutes later. Dr. Malhotra started by saying congratulations on our baby, which is the same as saying, "I have bad news to tell you." as far as I am concerned. He told me that he did find that Wyatt had some hypertonia, which is abnormal, but not significant. So he is reassured. Well, I am glad for him.

Honestly, I was so distressed that most of what he said to me is little bits and pieces in head now. I know he mentioned benign hypertonia. I know I asked about cerebral palsy, although I know they would never make a diagnosis this early. He said he couldn't make that diagnosis now. There are some things he can look for at 3 months. He said what usually happens is that Wyatt would see him every 3 months.

I know he said the hypertonia was definitely neurological. He said it might be contributing to his feeding issues.

He said Wyatt didn't appear to have any brain injuries, he didn't have any infections. There is a possibility there is still something genetic. Although, He did say that Wyatt looked quite normal. I asked because of the cleft. He said yes, that was the unknown. He knew that Dr. Baker had been there, and there had been some testing, but he was going to talk to Dr. Baker about possibly doing more testing. He said Dr. Baker thinks that the cleft is isolated. I told him that I didn't want him to do anymore genetic testing without talking to us first. I don't want them slapping some meaningless label on Wyatt. He said even if they did diagnosis him with something it wouldn't necessarily help him as these things aren't curable. He wants to do an EEG on Monday and if we want they can do an MRI at some point. They wouldn't do the MRI for a while though, as it requires sedation.

Rus didn't come with me because he had to go to the DMV to get his license renewed. Between that and the news from the neurologist, and his hysterical wife, I don't think he had the greatest birthday ever. Rus' take on the neurologists finding was totally different. He thinks the neurologist looked at him for five minutes and slapped a label on him. He thinks Wyatt is fine. He has never most faith that Wyatt will be OK. I wish I could find that strength, but I keep waiting for the next wave of devastation.

We did go out to dinner to El Raigon, with his parents, which was decent. But I started to cry again on the way home.

We just wanted a child so badly and we tried so hard. So much keeps going wrong. Every time someone talks about a child doing something or I see a child doing something, I get so upset wondering if Wyatt will ever be able to do any of those things. I have this image in my mind of him crawling and turning back to look at me, giggling. I wonder if he will ever do that. I wonder if we will be able to crawl or even bottle feed.

Wyatt's attempts to bottle feed yesterday were a bust. We couldn't help feeling like we are doing something wrong. No one in NICU is that familiar with the bottles and we haven't been there when Marie Waters has been there to feed him. Marie was only able to get eight ML in him. We did get a CD with videos on feeding your baby from her. We watched several of the videos, including one on the pidgeon, and we thought maybe we had unlocked the key to feeding him. We tried this morning and he was just not sucking very much. He had the bottle in his mouth, but wasn't interested. I feel like a failure.

I don't know what to do. Nurse Nancy thinks that he is being gavage fed too long and just not getting hungry. Pat thinks he needs to be gavaged over an hour. Pat thinks he is too low energy and sleepy. Nancy thinks staying awake for three hours is abnormal and he should be sleeping more.

The conflicting info is driving Rus nuts. I am driving Rus nuts with my hysterical fits of crying. I am getting tired of running interference between Rus and the nurses because he is getting so angry at them.

We are sort of falling apart. I am not always crying about Wyatt. Some times I am crying because I feel like this is causing a wedge between Rus and I. And I know that isn't unusual. This is a really stressful time for both of us. We handle the stress really differently. I wallow in despair and Rus gets angry. To me this feels like chronic devastation. I should be delighting in Wyatt and I do most of the time, but there are just some days when it is too much to bear.

Wyatt lost 10 grams last night and only put on 5 grams last night. Maybe the feedings are wiping him out.