Sunday, January 18, 2009

Children's Hospital, Round Two

Time drags when you have to commute to see your baby. I was sitting by his bed this afternoon, having a good snuggle, and I thought to myself "ok, so we've been here for a week and a half so far. Right? Roughly. Almost two weeks? Right? I think that's right. CRAP!! Oh my goodness! We've been here for almost 5 days! Sigh..."

It hasn't been so bad this time (first day total melt-down notwithstanding). I think it's a much different experience being on the nurse practitioner "green" team instead instead of the "purple" resident team. Plus, I have had a lot more consistency with the nurses this time. I have had one nurse three days in a row and one nurse the other two days. It makes a gigantic difference when you can't be there all the time.

The other difference? Well... I received confirmation from a secret source that I am on the high-maintenance mom list. I'm not exactly sure how I feel about that. But, when it comes down to it, I suppose that if it gets me the information that I need and the best care possible for Crew, I'll take the bullet, social hit notwithstanding. I'm very lovable once you get to know me. I've only yelled and pounded my fist once... and frankly, they totally deserved it that first day.

I still find myself having odd conversations on occasion, and their philosophies and approaches are sometimes in sharp contrast to what I am familiar and comfortable with. Their approach on breastfeeding, for example, is quite different than the one at our local hospital. Based on the differences in philosophy, it's not surprising to me that their success rates are so different. Our local hospital has a very high breastfeeding success rate. The Children's Hospital, by their own statistics, has very very low success. If I was dead set on being a successful breastfeeder, I'd be in a more difficult spot right now. Fortunately, I'm kind of wishy washy on the whole breastfeeding thing anyway, and I know my milk is probably on its way out.

That being said, we've been "practicing" breastfeeding a lot over the last few weeks. Crew does super duper well at it (when he's awake) and he'll be trying out a bottle tomorrow. When he's in the mood, he's a little boobie barracuda (sorry, is that crass?). My milk production is really struggling with the stress of the last couple of weeks. I'm working on building it back up, and fortunately I have a pretty good freezer stash should things go completely south, which I expect to happen eventually. I'm not willing to take medications or herbs, pump every 45 minutes, or otherwise do what is necessary to build and maintain my weak supply. Please, no advice on this issue. Seriously.

Being at the Children's Hospital is still exhausting. Our entire family was in bed, lights out, last night at 8. And I'm still so tired today. This arrangement is also a lot harder on the kids because trips to the hospital are so much more time intensive. Kinley and Tanner are already starting to fray and Kinley is being far less supportive when I go to the hospital "again???"

He hasn't gained any weight at all since he went up on Tuesday. In fact, he's lost a few grams. I'm really glad that I was able to convince the surgeon to do the surgery before we hit 2000 grams because I just don't know how long it will take to get there when he has so little bowel to work with. We have had to fight for every gram along the way and he is plateauing again. He is slated for surgery this week; no date or time has been set quite yet. Since he'll already be on a ventilator and sedated, they plan to do his MRI as well.

Overall, it hasn't been as miserable this time around. What does that mean exactly? It means that I'm comfortable enough with his care that I don't have to take prescription medication to sleep at night. If it means that I have to be on a naughty list of overly involved moms for that to happen, so be it.


thunderbugs said...

I've been quietly following your blog and haven't commented before. I actually tried to comment before, but my own little munchkins were constantly interrupting me, so I gave up after a while.

I think you should be proud to be on the high maintenance list...They just don't like people questioning how they do their jobs, but sometimes these things do need to be questioned, especially when your childs' health is on the line.

How many times have you heard that you really need to stand up for your health when it comes to doctors? Good for you for standing up! Keep it up!

I really think its wrong to have a High Maintenance list in the NICU. Every parent is under tremendous amounts of stress when your child is in this situation to begin with, but you're also mourning the loss of your other child. If they did their jobs and acted like caring human beings instead of robots, you wouldn't have to keep on them all the time. They really need to get over themselves.

I've had my own experiences concerning my children and doctors/hospitals and I can't believe how insensitive some of them can be.

By the way, Crew is such a cutie!!! Hang it there and I'll keep you and your family in my prayers...


AdronsCatherine said...

I really do have to give you some breastfeeding advice...

You do what is right for YOU and YOUR FAMILY!!! If that is breastfeeding, then so be it, but if not, by all means be proud of every bit you do for your child, and know that you are the best mama Crew could possibly ever have :o) Don't let yourself be pressured into anything, and don't guilt trip yourself over any decisions you make. You are wonderful, and amazing, and funny, and sweet, and I know that you are a real blessing to your family :o) If there is anything that keeps you from being as happy as you can possibly be, or keeps you from enjoying your family, then it's quite alright to question it's importance.

Ok, so that wasn't really bf'ing advice - just my general philosophy on life and parenting =) Keep hanging in there, and be proud of being on the high maintenance mom list - that means you are informed and interested in your child's care and well being! Not something *I* would be ashamed of, that's for sure!