Confessions of a Premature Drama Queen

I’ll post more later and pictures, but for now Haley is home.

She also got some results back from the state lab, turns out that she’s Cute positive. From what they told us, it’s a progressive disorder where she will continue to get cuter and cuter. Long term prognosis is good although they say it has a paternal wallet sliming effect in later years.

Haley’s schedule has been changed so that she gets fed every three hours whether or not she wants it, but she gets to pick the route. If she’s awake and demanding then she can have a bottle, otherwise it’s down the tube. We try and make it in for the bottle feedings (mostly every other time) because we need the practice. We went in yesterday afternoon at 3:00 for a bottle feeding and little Haley was just as feisty as can be so she got a bottle. She pretty much downed it in two gulps. She’ll be a champ when it comes to drinking beer in college (at Stanford). After she ate Nichole held her for a while, and while I was watching her she was still sucking to beat the band. So both Nichole and I think that she’s still hungry, but the nurse doesn’t have an order to give more food and Haley eventually falls asleep. We leave plan on coming back at 9:00.

At 9:00 we show up and Haley  gets cranky right after we start changing her diaper, and so we hurry up and do that, the nurse weighs her and we get to try a bottle again. Once again she downs the bottle and still keeps on sucking. Nichole takes off her shirt (woo-hoo) and puts naked Haley on her chest. About two minutes later Haley has flipped her self around and is heading south for the promised land. She misses and starts sucking on the hospital gown Nichole is wearing. We decide to let her have a go at some more productive sucking and within 5 minutes Haley’s latched on and going to town. Ten minutes later we burp her, swaps boobs and then Haley proceeds to pass out.

Neither one of us could believe how active she was. Just a few days ago we couldn’t get her to finish a 30 ml bottle, and now she’s downing 34 ml and looking for more. I think she just needed a break with some tube feedings and some time to get over her immunizations. We think we’ll be rooming in mid-week and she’ll be home by the weekend. Don’t quote us on that though.

On another note, milk storage is becoming somewhat of an issue:

We have that, plus three Rubbermaid containers here, and two at Nichole’s parent’s house. If know someone with a baby in the NICU long term, think about buying them a freezer or at least offering to store some of the milk. And if you have a baby in the NICU, freeze the bags so that they are flat, if you don’t you end up with little milk nuggets that don’t store very easily. If they are flat you can get about twice as much in a given space. I lay them in the little tupperware container on the top until they are frozen and then put it with the rest.

Alright, so we didn’t room in last night, and Haley is not going home today. But it will be soon!

On Thursday, when we went in to feed her at 8:00, she took about 15 ml and then was done. They kept telling us to try and wake her up to eat more, but she wasn’t budging, and seemingly every time we tried, Haley kept having bradycardia episodes (her heart slowed down). Needless to say, it scared the bejezus out of us and we in no way wanted to take her home in her current state. Fortunately the neonatologist agreed, and they said she’d have to be watched for 3-5 more days, and not have many more brady episodes before they send her home. They also put her feeding tube back in because she’s a tired little peanut. She had her first set of immunizations which doesn’t help with the fatigue either. Hopefully she’ll get all rested up and back to eating her whole bottle, and we’ll room in sometime during the middle of the week.

So here we are all cozy and settled into our schedule at the hospital, Haley’s doing well, we’re meeting new people, and making progress on readying the nest for her arrival. We’ve got a couple of weeks until she comes home, we think it’ll be Father’s day weekend at the earliest, or the next weekend at the latest. Well, that’s what we thought. We go in to see Haley bright and early yesterday morning because she’s most active then, and Nichole got to breast feed her for the first time when the nurse, Donna, says that she’ll probably be home within the week. Oh no, at least I have a week or so. Later in the day we return and Haley has been moved to an ad-lib feeding schedule (whenever she’s ready, but at least every 4 hours). Oh no, they said she’d be on that just before she went home. Then Donna tells us that she’s been taking bottles like a champ and finished most of her feedings. Oh no, I was just getting used to being a part time parent. We go back with Nichole’s parents at 8:00 and she’s sitting there absolutely taking a bottle to the house. There was 60 ml to start (about 2 ounces), and she only leaves 10 before getting tired. Oh no, we haven’t even taken the car seat out of the box yet. I make my usual phone call at 4:00 in the morning, Bernie reports she’s taken every feeding and at least 40 ml per bottle, and what’s more Bernie took her feeding tube out. Oh no, that means she’s taking all her bottles. At around noon today a lady from home health care calls and asks what oxygen company we want to use because it seems Haley might be going home this weekend. Oh no, what have I gotten myself into.

On Wednesday morning, we asked Donna when Haley would come home. She said that she worked on Thursday but wasn’t back again until Monday, but she didn’t think Haley would be here when she came back. I asked the neonatologist about it, and she said that if the Donna is wrong, then I can get fussy with her, but that Donna has been doing this 20 years and is usually right. There’s still so much to do…

Okay, now panic.

I know nipple is not a dirty word per-say, but it’s not a word you hear often in your normal daily life. At least if you don’t have a baby. If you do hear it a lot, and I mean a lot. I’ve heard the word nipple probably 20 times a day for the past week. You see, on Tuesday morning, Haley’s nurse noticed that Haley was wide awake and crying, which she doesn’t usually do. She calmed down with a pacifier and was sucking on that to beat the band. Because she was so active they decided to let her try a bottle. To everybody’s surprise, she took the whole thing in about 10 minutes. They weren’t even thinking about trying a bottle until next week, but there she was finishing a whole bottle the first try. She didn’t even choke once.

Since she finished the first one, Haley was allowed to attempt a bottle two times a day. On Tuesday afternoon, she finished a bottle for Nichole, and on Wednesday afternoon, she finished half of one for me. The thing is, nobody ever calls it taking a bottle, or drinking from a bottle, they call it “nippling her food”. And before you let her nipple her food, there’s a discussion of exactly what kind of nipple to use. Add to that a discussion about breastfeeding sore nipples and it feels like you’re at NippleStock 2008.

Enough about nipples. Haley is doing incredibly well. She’s up to 3 lbs 10 oz and continues to gain weight almost everyday. They say we should continue to see steady weight gain, but there might be a few losses because she uses so much energy, uhm, nippling her food. It really does make her sack out after she finishes her food. She’s also anemic again based on her Monday labs, but it’s to be expected. The neonatologist wanted to try some medication instead of transfusion this time. She’s just growing so fast that her body can’t keep up. The medicine is called epopoeten or epogen or something like that, it’s used a lot in cancer patients when they get anemic. Haley might still need another transfusion, but they’re going to give the medicine time to work.

Yesterday when we came in it was the oddest thing, Haley was actually crying so loud that we could hear her in the hand washing area. Usually when we hear a baby cry in the NICU, we just assume it’s some other baby because it usually is. Since she was awake and crying for it, Nichole got to let her nipple her bottle. She finished the whole thing. Really the only remaining obstacle before she can come home is for her to be able to nipple all of her feedings. She has the coordination, just not the stamina yet.

There, a whole post with nipple in every paragraph.