I guess it's not "today" anymore, but I'll speak like it's still the 28th. I'm staying overnight in Joshua's room because I was here tonight, and I'm only able to see him in the morning tomorrow, so it's easier to just stay here than drive the 35 minutes each way home and back.
We had a little scare today, actually James did since he was the one here for it. The oxygen Joshua gets is humidified, and condensation can form in the tube. He took a breath expecting air and inhaled water instead. That caused him to panic, kind of like me on my first SCUBA dive when I took my mask off and freaked out when I inhaled water, so I bolted for the surface...very uncool of me. Anyway, I think I understand how he felt a little bit. When Joshua freaked out, his heart rate dropped alarmingly low, and he stopped breathing, so his sats (percentage of oxygen) dropped from 98% to 70%. The alarms went off and people ran into the room to resuscitate him, and things normalized after a couple of scary minutes. Prior to that, he was needing to work harder to breathe, so they had to turn up his oxygen. We were hoping they could wean him down to low flow oxygen, but no so today. Now he's looking really good, sleeping peacefully with his suped up high flow oxygen.
Tonight he had his first weight loss, down 10 grams. Hmmmmm...just a wild guess here, but it could be due to the FOUR poops he had today. He was a machine! So proud of him! :) He's still at 3 lbs 11 oz.
There is a NICU Social every Wed night, and I went for the first time tonight. I knew there would be food there, and I was hungry, so I thought I'd sneak in and out. Well, it turns out it was a support group type thing lead by a social worker, where we all sit down in a circle and go around the room and talk about ourselves and any issues we are having. So much for staying under the radar and doing a "grab and go" with the free food. I found it very interesting, though. The take home lesson for me was...we have it pretty easy compared to other NICU families. I thought a month in the hospital was a long time, but every other family there (5 families besides me) has been here several weeks longer, as early as Jan 9th. One woman was on bedrest for 7 months, the last 7 weeks in the hospital, had a baby at 29 weeks, 2 lbs 3 oz. They (like us) were told to plan on going home around the due date, but they are now 2 weeks past their due date, and they still can't get their little girl to feed on her own, so they are stuck here. Another couple, the one with a baby born on Jan 9th, has had to endure 3 surgeries, and the baby has hydrops (very serious) and a rare genetic syndrome. Another family lives 1.5 hrs away, and they only see their other kids on weekends. No I can't complain about anything. Another thing I feel fortunate for is not having to juggle work with all this. One mom in the group was telling about how hard it is to work full time while balancing life with a baby in the NICU. Her husband was stressed out because it's the end of the month, and they are out of money, and they can't afford gas to get to the hospital. Oh the things we take for granted!
My nurse tonight had a baby born at 34 weeks who spent 3 weeks in the NICU. Her hospital bill was $158,000 for the hospital stay alone, not including the doctors, xrays or labs, and she's still fighting her insurance company 6 months later. She knew of a baby born at 24 weeks who had hospital bills for $980,000 for his NICU stay. It's depressing even thinking of it, so I'm glad we don't have to worry about that with Tricare.
Bottom line...we are so thankful that we have it so "easy" compared to many other families. A couple of sayings come to mind that we can all take to heart:
1. Count your many blessings, name them one by one.
2. Count your blessings and your problems. If your problems outnumber your blessings, count again.
No comments:
Post a Comment