Many, if not most, preemies need supplemental oxygen while in the NICU. Eating, growing, and just being alive take a lot of extra effort for them. And a lot of preemies have BPD (bronchopulmonary dysplasia, or chronic lung disease). But Grunts had more or less a normal course during his time at the hospital and I had always thought that he would be weaned off oxygen before he came home and we would never look back. According to the book Preemies, only around 5% of preemies go home on oxygen, an encouraging statistic (Linden et al. 396).
But since we live at a higher altitude, a larger percentage of preemies in our area go home on oxygen. It was disheartening to find out that Grunts would be one of those kids, but we adapted to it more quickly than I thought we would.
Not to say that life with home oxygen is fun. Yes, it's a necessary measure, and it does feel nice to have the extra peace of mind it gives us - I don't worry as much at night when he's sleeping because of it. (Haha, just kidding - I still get up several times a night when I think he's being "too quiet" to make sure he's breathing.) But the inconvenience and immobility of it all is rough. There are lots of different setups, but ours involves two tanks of different sizes - both are technically portable, but one is much smaller. Each has a one-strapped carrying case. We have a large machine in our dining room where we can refill the tanks ourselves. And, of course, there are the nasal cannulas, which fit in Grunts' nose and attach to the tanks. The cords for that are short enough to keep us tethered to the tank but long enough that we trip over them regularly. Supposedly you can get tubing that is long enough to carry around the house, but that's probably not a good idea with our three very naughty cats. And, frustratingly, Grunts is starting to become more aware of it and will often rub his nose like crazy against our chests to try to expel the cannula.
It's also hard to go places with the oxygen. It's really too awkward to carry around for long periods, so for now my dreams of packing up the baby in his carrier and schlepping him around easily are put on hold. Luckily, the oxygen tanks both fit in the bottom of his stroller, so we can still take walks around the neighborhood.
Grunts had been sent home from the hospital on 1/32 liters, the lowest possible setting. "Just a whiff," as staff described it. I had some concerns before he was discharged, as he was still desatting quite a bit in the last two days while he drank his bottle. (For the uninitiated, desatting is when your oxygen saturation levels drop. For preemies, there's a range anywhere between about 85-95%, and dropping below that for too long can be potentially dangerous.) But he was discharged anyway, so I figured the staff wouldn't send him home if he were in a bad way.
Since then, we've had almost weekly room air challenges at the pediatrician's office. That's when his oxygen is removed for half an hour and they strap a pulse oximeter to his foot to see how he's breathing. Part of the time it seems like he's improving, but I usually try to feed him during the challenge, and this is when he has trouble. His oxygen saturation levels roll up and down quite a bit during mealtimes. 10 weeks from being home and he still hasn't been weaned off oxygen, so my mother-in-law suggested that we try the challenge with his oxygen on, just to see what his normal is. And guess what? Grunts isn't doing that great even with his oxygen. He failed this week's challenge again. His numbers apparently weren't dangerously low, and the doctor said there shouldn't be any damage done from the low amount of oxygen he's been on (something I'd worried intensely about), but she bumped it up to 1/16 liters anyway. He is scheduled to see a pulmonologist soon so maybe they'll be able to shed some light.
It feels like a huge step backwards. Every week we'd told ourselves "maybe he'll have improved a lot! Maybe this will be the week he'll finally be weaned." But now, being on a higher level of oxygen makes it seem like there's no end in sight. I'm trying not to worry that he's gotten worse, and am instead wondering if he just needed to be on a higher level this whole time. Our physical therapist says that there are two camps of preemies: those who are weaned from oxygen almost immediately after coming home, and those kids who need it longer-term. Now we know where Grunts falls. She said, hopefully, that he still probably shouldn't need it for more than a few additional months. Even that optimistic conjecture fills me with dread, as I imagine Grunts will more active soon and it will be harder and harder to keep the cannula in his nose. What are we going to do when he starts crawling? Or rolling over? Or discovers his hands?
The only other good thing I can say about all this (besides the peace of mind mentioned earlier): something like this teaches you that you can get used to almost anything given enough time. With this, as with many other aspects of preemie parenting, you have to discover and embrace your new normal.
Did your preemie have short- or long-term oxygen needs? How long were they on home oxygen? What are things that helped make life with oxygen easier?
Linden, Dana Wechsler., et al. Preemies: The Essential Guide for Parents of Premature Babies. 2nd ed., Gallery Books, 2010.
Grunts had been sent home from the hospital on 1/32 liters, the lowest possible setting. "Just a whiff," as staff described it. I had some concerns before he was discharged, as he was still desatting quite a bit in the last two days while he drank his bottle. (For the uninitiated, desatting is when your oxygen saturation levels drop. For preemies, there's a range anywhere between about 85-95%, and dropping below that for too long can be potentially dangerous.) But he was discharged anyway, so I figured the staff wouldn't send him home if he were in a bad way.
Since then, we've had almost weekly room air challenges at the pediatrician's office. That's when his oxygen is removed for half an hour and they strap a pulse oximeter to his foot to see how he's breathing. Part of the time it seems like he's improving, but I usually try to feed him during the challenge, and this is when he has trouble. His oxygen saturation levels roll up and down quite a bit during mealtimes. 10 weeks from being home and he still hasn't been weaned off oxygen, so my mother-in-law suggested that we try the challenge with his oxygen on, just to see what his normal is. And guess what? Grunts isn't doing that great even with his oxygen. He failed this week's challenge again. His numbers apparently weren't dangerously low, and the doctor said there shouldn't be any damage done from the low amount of oxygen he's been on (something I'd worried intensely about), but she bumped it up to 1/16 liters anyway. He is scheduled to see a pulmonologist soon so maybe they'll be able to shed some light.
It feels like a huge step backwards. Every week we'd told ourselves "maybe he'll have improved a lot! Maybe this will be the week he'll finally be weaned." But now, being on a higher level of oxygen makes it seem like there's no end in sight. I'm trying not to worry that he's gotten worse, and am instead wondering if he just needed to be on a higher level this whole time. Our physical therapist says that there are two camps of preemies: those who are weaned from oxygen almost immediately after coming home, and those kids who need it longer-term. Now we know where Grunts falls. She said, hopefully, that he still probably shouldn't need it for more than a few additional months. Even that optimistic conjecture fills me with dread, as I imagine Grunts will more active soon and it will be harder and harder to keep the cannula in his nose. What are we going to do when he starts crawling? Or rolling over? Or discovers his hands?
The only other good thing I can say about all this (besides the peace of mind mentioned earlier): something like this teaches you that you can get used to almost anything given enough time. With this, as with many other aspects of preemie parenting, you have to discover and embrace your new normal.
Did your preemie have short- or long-term oxygen needs? How long were they on home oxygen? What are things that helped make life with oxygen easier?
Linden, Dana Wechsler., et al. Preemies: The Essential Guide for Parents of Premature Babies. 2nd ed., Gallery Books, 2010.
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