Archive for July, 2008
First weeks home
So it’s been a couple of weeks since the last post. This is of course because we are busy being actual parents and not just spectators. She wakes up every 3-4 hours to eat, 24 hours a day, so we’re a bit tired. The last couple of days have been especially tiring because she has a bad case of reflux and would scream bloody murder everytime we put her down to sleep. When she was first born we couldn’t pick her up, and now we can’t put her down. We finally went to the after hours clinic and they prescribed some medication that should help, and so far it seems to be. She started off eating about 30-40 ml per meal, but now she’s up to 60-80 and growing like a weed. We weigh her every week and yesterday at her appointment she was 5 lbs 10 ozs.
Haley has also had two eye appointments, the first one showed Stage 1 ROP in her left eye, but by the second one, it had resolved itself and she’s at Stage 0 ROP, they’ll keep following her for a few months to make sure everything is progressing as it should.
As you can see from the pictures she’s still on oxygen, but has been reduced to 1/32 of a liter per minute which is as low as the regulator goes (they have special ones that go down to 1/64th, but she might as well be off of it at that point). We also had a fiasco with our first oxygen company. It started out with the respiratory therapist not getting the results of a spot check to the doctor’s office. The oxygen people claimed that the doctors lost it, but if that’s the case, wouldn’t they just be able to send another copy? The next issue came when Haley was down to her last tank at home. I hooked her up to her last tank on a Sunday, and they said to call when we did that. I waited till Monday morning, and was told that nobody would be in the area until Thursday, and when I told them that she would run out before then, they told me I could come pick some up. That’s right, the home oxygen company’s solution was for me to go pick up oxygen. The final straw came when the doctor ordered an overnight pulse-ox trial. First they gave us a pulse-ox meter without an alarm, and told us to try her on room air overnight. The guy said they needed 6-8 hours of her sleeping. We explained to him that she’s a baby and does not sleep that long, ever, he said to just do it for when she sleeps the longest. We explained that she’s a baby and pretty much does the same thing 24 hours a day, he was at a loss. We had pretty much had it at that point, and called our insurance company and switched. We now have Apria and couldn’t be happier. I cannot recommend Freedom Oxygen for your infant oxygen needs, if you are an adult they might be better, but they definitely don’t know how to deal with babies.
A lot of people ask us if we’re going to have another one. I don’t know that if you asked any new sleep-deprived parent if they wanted another one that they would tell you yes. For us it’s even more of a concern because we could have another 12 weeks premature baby in the NICU. So the jury is still out on that one.
When I first started this blog, I thought we’d have more problems and that other parents with babies in the NICU could come and read about our story. As it turns out, it was a lot easier than I expected. I’m not saying it was easy, but it could have been far worse. I would have to say the three worst moments were when doctor first told us that they were going to have to take the baby. I doubt anything will ever be scarier than that. The second worst moment was when we had to leave the hospital, but had to leave Haley there. It was hard to see all the other parents loading their newborns into the car and heading for home after 2-5 days. Last was when actually got to take her home. It was happy, sad and scary all at the same time. Happy because we got to have our baby at home, sad because we had to leave all the nice people we met in the NICU, and scary because we’ve never been parents and we now have a fragile little baby at home.
If I had any advice to give to other NICU parents, it would be to get to know the nurses, doctors and NP’s that are taking care of your baby. They’re people too, so ask about their lives and not just about your baby. Don’t ask when your baby is going to get to go home, because they don’t know. You end up spending a lot of the time at the hospital and it’s a lot easier when the staff are more like friends, than just some people that are taking care of your baby.
If you know someone with a baby in the NICU and want to help, don’t call to find out how the baby is doing, they don’t have time to talk to everybody. You can help them by doing their laundry, cleaning their house, or making them food. With all the running back and forth to the NICU, those things tend to fall through the cracks.
Haley was in the NICU for 59 days, and we’re glad she’s home even though sleep is a foggy memory of something we used to do.
