Saturday, May 24, 2008

I got several pictures today, and not just of Quinn. But I'll have to postpone posting them until tomorrow. Something to look forward too.

We went to visit as a family today. I have gotten to the point where I can slip off my ID bracelet, but I forgot it today. As I walked into the NICU, the guy at the desk said "Do you need a new bracelet, Mother Fackrell? We can't let you in without one." Does anyone else find that strange? Someone that they know by name, but it's policy, and we live by policy. I complained about having to wear something all the time when I only need it a small portion of the time, and the woman sitting there said that if I have a better suggestion, they will listen to it. So that's a project for me. Come up with a better system besides semi-permanent branding.

Dorian and Faith were bouncing off the walls in the nursery, so they didn't last very long before Kurt took them back to the playroom. I talked with Quinn's nurse, another new one. His two primaries are on vacation, so he gets a string of new people for the next few days. His O2 was at 55% when I first got there, but that was the first time that day it had been above 40. Most of the day it was at 35. He has a flat spot on his head where he usually lies, and so they are trying to even him out, but he doesn't like the other side so much. Therefore, he needs more O2 on that side. Weird, huh? He's back up to full feeds too, and hopefully will stay that way. I was given some things to read about broncho-pulmonary dysplasia, which is a fancy way of saying he needs oxygen longer than they hoped he would. The reading material included an overview of having a baby at home who needs oxygen. Looks like fun.

The nurse said a nurse practitioner would want to talk to me about the Hepatitis B vaccine. I looked confused and said I had already declined it. She said it's because he's nearly 2 months old (by one way of counting at least), which means time for a round of vaccinations, and they use Pediarix, which is DTaP, plus inactivated polio, plus Hep B. I politely declined the vaccine, and we moved on. The NP did come to talk to me, but didn't try to talk me into it. She also wanted to make sure I had gotten the info about breathing issues, and asked me my least favorite question of all "How are you doing?" I usually avoid this question by saying "I'm here." Sometimes I want to take people by surprise and say "I'll give you a hint: my journey with this baby involved going to hell and back. Guess what: I'm not back yet." But I just told her I'm taking it one day at a time, and I was enjoying holding my baby that day. She said he has made great strides, and would continue to do so. Then Kurt and the kids rejoined us and we got some pictures. But as I said that will have to wait until tomorrow. I can't believe I'm up this late as it is.

1. I'm grateful I got more pictures of all of my kids today. We're a growing family.
2. I'm grateful we got to spend some time outside on a beautiful day.
3. I'm grateful I spent some time with friends tonight.
4. I'm grateful to know there are so many people willing to help and serve in times of need.
5. I'm grateful for what I've gained from these experiences.

4 comments:

Nemmer said...

I'm so impressed with your strength. My youngest was in the NICU for 10 days before being released, so I can imagine a lot of what you are describing. I too was irritated, even infuriated, at the staff at times. Our baby did come home on oxygen, and while I was immensely grateful to have him home (ie. not in the hospital anymore!), dealing with the oxygen at home was stressful too. I'm wishing you the best of luck, and speedy progress for little Quinn!

Anonymous said...

My suggestion to the NICU? Use a code-word system.. ONLY the people with the code-word are allowed to visit the patient and to receive information over the phone (which is generally only the parents that have the code-word)... The nurses cant say ANYTHING unless you tell them the correct word.. This is how the Childrens Hospital where Alo spends all of his time is set up.. even the nurses that know my voice on the phone still ask for it. And while it is a hassle its a lot better than the bracelet. Or tell them to keep poloraid photos of the parents in the childs chart or with the secrataries.. This was done in Kaias NICU that way people knew what the parents looked like.

Jan Kate Brower Arnell said...

khourt... great suggestions! so Brownyn... "how are you doing"... sorry, I couldn't resist. You see, from some of us who really care but are really not very good with words, we don't know what else to say. Please know that despite our lack of vocabulary, our hearts and prayers are in the right place. How far away is this hospital from your home?

Bronwyn said...

Jan, I know the intentions are good. I would be ungenerous to think otherwise, but I'd much rather prefer "Good to see you" and leave it at that. And I can't even say that I would do the same for someone going through something similar, because people deal with crises differently. I'd much rather hide from people, hence the blog where I defer all questions, but others might actually want to talk about it in person. who knows. Thank you for your prayers.