Monday, December 1, 2008

NICU Reality

I suspect that I might have better coping skills if I had had more than 4 hours of sleep last night, but it didn't happen. It has definitely been UP and DOWN these last few days. "The Children's Hospital is is the best!" they say. "People come from hundreds of miles because they are so great!" they claim. "If you want your baby anywhere, it's there for sure!" they insist. Really? REALLY? I'm sooooo not convinced.

I have been putting out multiple fires for three days and having to go in to advocate for things that seem like no-brainers to me. It is so terrifying to leave my fragile baby in the hands of perfect strangers and have to trust that they won't make him even worse.

On Saturday they accidentally screwed up his ventilator settings and he nosedived into a respiratory alkalytic state. Wanna read some scary stuff? Google "Respiratory Alkalosis". Fortunately the nurse that came on an hour later caught the error almost immediately and he was back to normal in less than two hours from start to finish. Being in that state for a prolonged amount of time can cause cerebral palsy, quadraplegia, severe mental retardation, and a host of other complications. What does "prolonged" mean? I have called every neonatologist in the state that I have access to to ask that question and apparently there is no official answer. They all seem agree that his duration shouldn't be problematic, but no one could or would guarantee that because there are no controlled studies.

I was a total head case all night Saturday, so on Sunday we bailed on our niece's baby blessing (still feeling really guilty about that), sent our kids to church with a neighbor and went to the hospital. I told Justin that we weren't leaving until I felt comfortable again. We were there for hours, and after having a little round table with the (traveling/on-call) neonatologist, resident (of the day), and the nurse (who at least had seen Crew before and happened to be the one who caught the error the day before), I felt a little better.

Still, on this particular situation I'm sitting here going back and forth between really frustrated that it happened in the first place and extremely relieved and grateful that it was resolved so quickly by a fluke half-day assignment by the "right" nurse with the right knowledge of the equipment and Crew's history. I feel pretty confident that she got some help from Dex that day.

Head Shape
Now that his body has so much less swelling, I have started to notice that his head shape is starting to get long and thin. It looks like they have just been rotating his head almost exclusively from one side to the other, spending little or no time in the middle or any other position. At our local hospital they are Nazis about keeping their head shape in good condition from day one. So, I called one of his nurses last night and asked her what she thought of the shape of his head. The following comments are NOT an exaggeration or embellishment:

"Well, preemies get what we call "toaster heads". The ventilator is so heavy it pulls it over and then they really get used to having it on the side so even when they aren't on the ventilator anymore they prefer their side so then it just continues... yeah, they pretty much look like that for the rest of their lives. But I wouldn't worry; it doesn't look so bad once they grow hair."


I went in this morning with that discussion on the agenda. I met with (yet another) neonatologist and (a different) resident and (yet one more unfamiliar) nurse. I told them that I was concerned about his head shape and wanted to do everything we could to intervene and make sure we were addressing it starting now. They assured me that they always do everything they can and always rotate it to midlines and never just side to side. I told them "what I had been told" but didn't specify who had said it (could have been Grandma for all they knew) just so that I could see their reaction. They were horrified and said, "oh, no no no, maybe many years ago, but certainly not today. I pursed my lips and said, "could we please make it a really big focus of his treatment because it was one of his nurses in this NICU at this hospital that told me that." Their jaws dropped and they were suitably horrified. They promised me they would make sure.

BUT... I didn't see them write it down, including in the file that gets passed between the nurses. So I had to be the one to request that the nurse put a big note in there for whomever sees Crew next. He sees so many nurses that don't know anything about him and for crying out loud, the one who does know him well is the one who embraces the concept of being a toaster head!! I find them to be amazingly disorganized. Everyone always complains about the terrible communication at this hospital so I have been surprised at how well they have communicated with me since he has been there. It didn't occur to me that they wouldn't communicate with each other!

Fentanyl vs Ver-sed
Yesterday at our little round table we discussed weaning him further off his pain medicine. He had been on fentanyl 4 times a day plus additional as needed. The doctor encouraged them to stay away from additional Fentanyl as much as possible and to use Ver-sed instead because it might just be agitation, for which Ver-sed is more appropriate. Plus, Fentanyl slows down the digestive system and Ver-sed does not. We just started him on feedings yesterday and we don't need any interference!! So the message was very clear: go for Ver-sed first.

Today at the round table Fentanyl was discussed again. I told them (since they were all different staff from the previous day and no one else seemed to have note of it) that Dr. B. had recommended going for the Ver-sed before Fentanyl. They all nodded their heads and said that sounded like a good idea. (Idea? That was the plan.)

So a few hours went by and I went to pump. I was gone for 25 minutes and when I came back the nurse told me that he had been upset and agitated so she had given him a dose of Fentanyl. WHAT???? Were you not standing right there when we discussed this? Does no one write anything down? I reminded her that she was supposed to try Ver-sed first and she said, "oh, ok, that sounds like a good idea. I'll do that next time." Like it was brand new information? And why wasn't it already in his bedside folder from yesterday in big, bold letters? Again, I had her write a BIG note and leave it in the chart for any other nurses that come into contact with Crew. Honestly, folks, I'm not asking you to think outside of the box, just follow the plan!!

Milk Wasting
I store some of my milk at the hospital. I have probably 15 or so big bottles full of recent milk and 20-25 older bottles that have colostrum and tiny amounts of milk. They are all organized by age and size, bigger, more recent in the back, older, smaller right in the front. He's only drinking very tiny amounts of milk now and after it is thawed they have only 24 hours to use it before they have to throw away excess.

So, wouldn't you think that if you know he is only going to use 20 cc's of milk in a 24 hour period that you would try to find one of the 25 bottles that have less than 20 cc's in it? Nope, one of the nurses left all those great colostrum bottles and tiny bottles and pulled out one with more than 70 cc's in it that was actually harder to access. Thanks. A. Lot. Do you have any idea how hard it is for me to make milk?? By all means, just throw it out when you have other options. No problem. I asked about the policy on that this morning and was told in chagrin that it really depends on the nurse. Again, I say WHAT? So, on Wednesday when I go up I'll be bringing a colorful little sign to hang on his milk bin that says "please use tiny bottles first". Why should I have to be micromanaging such ridiculous things?

Ultimate Rejection
Add to all of this that Crew completely rejected me today for the first time in his 22 days of life. He didn't want me to sing to him, talk to him, touch him, or even look at him. I had to peek under a corner of the blanket for a few seconds at a time. He opened his eyes and was friendly for just a few minutes when I first arrived. After I changed his diaper he was absolutely done. Even having the blanket cover pulled back half way from the isolette was too upsetting for him. It killed me to not even be able to touch him when I wanted to so much.

Anyway, that is what has been going on these last several days. I have disabled comments on this particular post because I just need to vent so that I can move forward and I don't want to start a discussion on it.