a few days ago we went to see the lung doctor. cld or bpd kids get one- so don't get jealous just yet...the doc was AMAZING! i really appreciated all the extra time she took with me... as you can guess i ask about 1 million questions when i don't understand something. she was great with ms. wren and long suffering with me.
i know it's the question on everyone's mind- and lips- "when will she be off oxygen?"
i asked her in her opinion, (because really it depends on wren, there's no set guideline), when she thought we could expect to be off.
she said CHRISTMAS! ugh. so. sigh. i suppose i'm ok with that. i have to be- right? i just want so badly to have a baby without attachments. i want so badly to have as close to a normal experience as possible with my sweet little poop machine. but that's not going to happen. she's going to be 6 months old before we can pretend to be "normal"...
so here's an overview of the rest of the appointment:
- she was impressed with wren's oxygen requirements. (sating fine on 1/32, and sating 88-95 on nothing, when i wean-tested her. i couldn't actually wean her remember, because of the risk of ROP.)
- she was impressed with her growth. gaining almost 2lbs since she's been home! what a fatty! the more she grows, the more her lungs grow... the sooner she's off oxygen!
- she put her on reflux meds. there's more about that here.
- she double checked the electrolyte labs, and left her diuretics the same.
- she listened to wren, and checked for retraction, etc.
- she said we could leave the SAT monitor off for as long as we felt comfortable. just spot checking and using it when we're not interacting with her directly. (like while sleeping, or in the other room... like she's ever in "another" room.)
- she said that we'll know wren is ready when she's sating at least 95 all the time on nothing.
the doc was great to explain the diuretics a little better to me. since she's premature she's got a higher risk for fluid on the lungs. and keeping those suckers dry is a great way to keep her oxygen needs down. they probably won't change her dosage, she'll just stay on them for so long that it becomes a minute dosage based on her weight. they don't ever just take them off cold turkey- it can cause rebound fluid retention. one of the diuretics causes more sodium and potassium waste. one of them actually keeps the other one from causing so much waste. (sorry i can't remember which is which.) so they work best together. apparently it's standard fare to put the cld kids on both of them.
most importantly i suppose was the point that we want wren to be healthy. even though i feel a bit like a pack mule... the oxygen helps her exert her cals in other places and pack on fat. so, for as long as it helps her not have to work so hard, we'll be toting that canister around.