Eviction Notice

It has been a long few days. One day is starting to run into the other, and it is hard to keep track of things. Fortunately nothing too dramatic has happened.

Lydia was his night nurse last night. She seems to have warmed up to us significantly. The first time we had her she was rather distant and didn't seem to be interested in answering our questions. Now, she brings Kate coffee and looks after us very well. We think the change is because she is good friends with Holly. Mary was his nurse during the day yesterday, and Joyce is back on today.

Last night Henry weighed 1925 grams which was up 15 grams from the previous day. He is still down from a couple days ago when he weighed 1930 grams which is just shy of 4lbs 4 oz. Hopefully he will resume gaining an average of 20 grams a day again. Growing seems to be the cure to all that ails him so set backs like this week are rather frustrating.

After Kate left on Thursday night, I stayed until around 4am. I think I mentioned before how we gut stuck in these cycles. He feeds and then needs to be held upright for 1-2 hours after feeding to prevent reflux. Then before you know it he feeds again and has to be held again. It is very difficult to leave because when he has the reflux he is basically gagging and can't breathe. How do you leave your child when you know at any minute they might start gagging? Of course the nurses will be there and the monitors are on but the best thing to do is to prevent it by holding him upright.

I have enjoyed feeding him via the bottle the last couple days. It is a bit nerve racking in that he might forget to breathe and have an episode or get things down the wrong tube. However, so far he seems to do very well at it.

I feel a bit guilty because I have not been a big fan of the breast feeding. It is not possible to know how much food he gets when he breast feeds and he has not been gaining weight when he does it. It is also a big production to get him to latch on. It is very frustrating for Kate to have him go into hysterics while trying to feed him. Joyce is the only one who can really seem to get him to latch quickly by holding his head and forcing him on. I have tried to emulate her technique but I'm missing something.

I have to admit that I've also been disappointed to be excluded from getting to hold him and interact with him as much because it seems he always needs to be fed. I know it is important for Kate. Besides the bonding aspect for her, I think it would also be nice if she could be some reprieve from the breast pump.

I think that the most interesting thing to happen in the last couple days was a conversation between Kate and Dr. Erenberg, the latest attending to be in charge of the NICU. He started the conversation by telling Kate that they needed to get Henry home because he has overstayed his welcome. He adjusted Henry's oxygen to a level that is what he would get if he went home on oxygen, 1/8th of a liter of flow and 100%. This equals .125 liters which is significantly higher than the .05 and .02 that he has been on the last two days. It is also much higher than the percentage of oxygen he has been getting which is between 30% and 50%.

During the conversation, he gave the impression that Henry was going to be going home in very short order. The main concern here is that he is having brady episodes very frequently. We have been told that he can't go home unless he has gone at least 5 days without a brady. Erenberg gave the impression that he would be going home regardless of this and that he wanted him to go home without monitors so we wouldn't know when he was having one of these episodes.

Thankfully it seems this was a misunderstanding. We talked to Moe Kane, one of the fabulous nurse practitioners in the NICU, and she said that he will not be going home while having brady spells. She confirmed with Erenberg that he was really only making changes to the oxygen.

We talked to one of the other parents who has been there for a long time that we see at all hours of the day and night. He had been told by the nurses that Dr. Erenberg had a bad bedside manner. The nurses were actually curious to see how this parent and the doctor got along because this parent is not shy in telling the doctors his opinions on his sons care and the nurses could see a train wreck coming when the two of them first interacted. We'll have to see if anything comes of this.

One good thing Erenberg has done is to order a ph probe for Henry. This will go down his nose and hang out in his esophagus and read the ph levels. This will give them confirmation as to whether Henry has reflux or not. All the nurses and nurse practitioners have said he has classic reflux which is extremely common in preemies. Dr. Erenberg said that reflux and brady episodes are not related. This was a bizarre statement as it goes against what every other person we have talked to has said and seems to contradict what we see everyday as we watch him have these spells. Depending on the results, it might affect the decision to put him on medication for the reflux or if they do something like put him in a special bed and sling that can tip him more upright. Of course if it shows he does not have reflux at all, then I don't know where that leaves us.

I finally got a good nights sleep last night, or good days sleep since I went to bed around 5am and got up at noon. Kate went in to see Henry earlier today. I'm going to try to drag her away to go see a movie this afternoon while Grandma is there watching Henry.