Today was a much better day. Kate's parents visited in the morning and let us know that Henry was doing well, calm and restful. Kate visited in the early afternoon and was able to hold him for a while and he continued to do well. Kate and I stopped by after 8pm and ran into her sister Carolyn who visited for a while. Again Henry was restful and calm. His weight was up to 1060 grams (2lbs 5oz). That wasn't as much of a gain as we would like to see on a non lasix day. Hopefully tomorrow he won't drop down below 1000 grams after the lasix. His day nurse was Henry again and his night nurse was Arlene who we had not seen before.
So I think this snuffs my potassium theory. I liked that theory but am glad to be wrong since being right would mean Henry suffering great discomfort twice a day. I think we'll stick with the gas pain theory for now. That makes me feel like I over reacted. But I guess that is something that parents, especially first time parents of sick children, have a right to do. Hopefully we didn't get the members of our blog audience too concerned. Welcome to that wonderful rollercoaster that everyone keeps telling us about.
Kate had an awkward conversation this afternoon when she went to visit. The nurse Henry was taking care of baby Henry again. He said he wanted to have a talk with her. He expressed concern over our stress levels and said that he didn't think we were having as positive an experience there as we could be having, that we focused on the negative. He mentioned that we needed to trust the staff and that they really knew what they were doing and if we had problems with them we could talk to them about it. He said that we were having an easy time of it in the nicu compared to many other babies. He also warned us not to over stimulate Henry because he knows that it is natural to want to touch and reassure a baby when it is stressed but that patting and rubbing motions are not good for preemies.
We know Henry was well meaning, but it did not have a positive effect on either of us. First, Henry has only taken care of baby Henry 3 times. We haven't seen him around when he has not been taking care of baby Henry either. So for him to feel like he knows enough about us and how we interact with our child and to lecture us on our emotional state was bizarre to say the least.
Secondly, his observations seem to be flat wrong. He specifically told Kate that I was stressed when I came in yesterday. Anyone who knows me would be hard pressed to find a time when they could categorize me as stressed. When I reflect on my interaction in nurse Henry's presence yesterday, I feel like I was calm and pleasant and basically spent the majority of the time asleep with Henry on my chest. Both Kate and I also know that for preemies you don't pat or rub, you gently hold in a way that contains the baby to simulate a womb where they have boundaries. On top of that we really don't touch him very much. We both take the approach that if he ain't broke, don't fix him, meaning don't touch him if he is doing ok.
The comments about not having as positive an experience as we could have actually made me feel upset. We are appreciative that Henry is alive and feel he is doing well given the circumstances. I think that in the long run this will be a positive experience for us because we will have a much greater appreciation for just how delicate life is and what a gift our baby is. If we had a regular pregnancy I don't know that we would have as much an appreciation for that. However, to tell someone is basically being dragged through the emotional meat grinder (or veggie grinder for you vegans and such) and experiencing what is probably the hardest thing they have ever had to deal with that they aren't being positive enough, especially when you have really only interacted with them twice, is really overstepping the bounds.
The comments about not having it as rough as others in the nicu again just seem inappropriate. Yes, we know it could be worse. For someone like him who has worked in the nicu for 20 years, maybe we seem like cry babies worried about the smallest things for nothing. We haven't been here before, and we are going to be concerned for our child. If only the people who have it worst off have the right to be concerned, then I guess well need to take a poll in the nicu and see who has the crappiest situation and give them a special t-shirt or something. There have been times when the doctors have flat out told us that things don't look good. Maybe he felt we should reserve our concern for those times. However, we know things can turn on a dime. When his last pic line went bad, it was Kate who pointed it out to the nurse. We spend more time with him than anyone and so are most likely the ones who are going to pick up on subtle changes that might reflect bigger problems.
As far as trusting the staff goes, we certainly do appreciate them. So far we have only had one nurse who we did not like because we didn't feel she was competent. We had her on her last night working there so didn't raise any stink about it. Other than that we have been tremendously impressed with the staff. We have had two nurses a day for 8 weeks and can only really complain about one. It is remarkable to me that so many people can be so outstanding. That said, we don't blindly put our trust in medical staff anymore. We put our trust in Dr. Chen and his staff, Kate's OB, and if we had continued to trust them, both Henry and Kate would likely have ended up dead. Fool me once, shame on you, fool me twice, shame on me.
I believe Henry may have received some of his information from Nadine. I will have to admit that I was rather stressed the previous night when Henry was screaming in pain every three minutes for four straight hours and we couldn't figure out why. One reason was that I was exhausted. There were a couple nights this week where I didn't have more than 2-3 hours sleep and I wanted to get home and rest but we just couldn't leave him like that. Basically, when our baby is stressed, we are going to be stressed. I don't really see any remedy for that.
It is possible he was privy to information from a survey that Kate filled out about nicu satisfaction. It had a lot of open-ended questions. She was rather glowing about the staff but mentioned problems with the noise levels and the sanitary practices of visitors. I still think he does not understand us very well and grossly overstepped his role as a nurse by making these statements.
On a lighter note, some more pictures have been added to the previous posts so please scroll down and take a look.
Adjusted Age
1 comment:
I wanted to follow-up on Jeff's comment about how we know it could be worse.
On Mother's Day weekend, a new NICU baby was placed across from Henry's station. I talked briefly with his mother. She had been in the hospital under observation for ten days. She developed an infection, making it necessary to deliver the baby, a son named Jackson, early. Jackson was born at 24 weeks and 5 days. He weighed 1 lb 10 oz. He was placed on a high frequency oscillator, just like the one that Henry had been on.
Henry had been born at 25 weeks and 2 days, weighing 1 lb 4 oz. It was hard not to make the comparison, even though it is true that every baby (and situation) is different.
On the Tuesday night after Mother's Day, Jeff went into the NICU in evening to visit Henry. A nurse had asked him if he was aware of what was going on. The area around Jackson's warming bed had been screened off to give his family some privacy. Jackson died.
So, yes, our situation could be much worse. For a 25-weeker, Henry is doing well.
The survival rates for a baby born at 25 weeks is somewhere between 50% and 80%, depending on the study. For information on preemie survival rates can be found at: http://meriter.com/living/preemie/survivalnew/survival.htm
For some reason, male babies have lower survival rates and higher disability rates than do female babies.
So far, despite the close calls that we have faced, we have been very fortunate. Henry Joseph is a handsome baby boy who has shown a tremendous will to live. And, we continue to be optimistic.
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