Confessions of a Premature Drama Queen

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.

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.

We went to see Haley at noon time yesterday and for the second time in a row, she pulled her OG tube out while I was doing her care. She’s such a feisty little girl and it’s hard for an amateur diaper changer to keep track of her hands while I’m getting things done. It’s not a big deal though, but the nurse taking care of her decided it was time to try to turn her OG (through the mouth into the tummy) into a NG (through the nose into the tummy). Haley protested for a minute, but was fine once it was said and done.

Last night she weighed 1390 grams, or a little bit over 3 lbs! She’s 130 or so grams from doubling her birth weight and in only 6 weeks. We couldn’t be happier with her progress. They’ve upped her food to 16 ml every other hour, and are looking to try and go back to the every third hour sometime next week. Her breathing has also been spectacular with only about 50-75 ml/min of oxygen. Haley does tend to desat when her tummy gets a little full, but that’s to be expected. Last night before we put her to sleep, I bent over to give her a kiss and she made this little crinkled up face. It was adorable and when I tried to kiss her again, she didn’t seem to mind.

Today Haley had her first eye exam. The biggest thing they were looking for was something called ROP. This disease affects many premature babies and can be caused by over oxygenation. With recent advances such as pulseoximitry and careful monitoring, the disease is caught early and treated. Fortunately Haley’s results were that her retina was “immature” which pretty much means normal for her. She’ll be checked again in two weeks.

In doom related news, they took the wedge out of her isolet. Because of the way the wedge worked, they couldn’t get Haley bundled up as well as without the wedge. She doesn’t like to be unbundled at all, so out went the wedge. We can changer her diaper with ease now. Hooray! I think…

One of the nurses also pointed us to this funny (well, if you have a baby in the NICU or are a NICU nurse it’s funny):

When Haley was just born, we weren’t allowed to do anything for her. She was in such critical condition that the nurses would do everything and all we could do is watch. When she was a couple of days old, we could start to do things at her care times. Things like taking her temperature, and changing her diaper. We got pretty good at it. It was easy because on her original bed, the top lifted so you could get easy access to the baby. Eventually we got good enough to do her care through the portholes without lifting the bed top.

When Haley moved out into the big room last week, her Cadillac isolet did not follow. Instead she was issued what an only be called the Geo Metro of isolets. Like a Geo Metro, it does everything it needs to to get you from point A to point B, but that doesn’t make you want to drive it. The new isolet is much smaller, and the portholes aren’t quite where you’d expect them to be. Nonetheless we’ve managed to skillfully change her diaper and do her care for the last week.

Well, things took a turn for the worse when we walked in and saw this:

I’m not sure what the medical term for it is, but I call it the Wedge of Doom. As if it weren’t hard enough with this isolet, the wedge completely eliminates one whole porthole and partially obscures another. To hold the baby onto the wedge, there’s a small harness which snaps to the wedge and some velcro straps. These retaining devices work well until you have to actually change the diaper. Once you unhook the harness and straps, the baby begins to gently slide down the wedge. Changing a diaper is hard enough, but changing a diaper on a moving target? What do I look like, Harry Houdini?

The wedge actually does serve a medical purpose, it helps Haley’s diaphragm expand her lungs and helps prevent digestive reflux. I guess it’s a small price to pay, but I will definitely allow the nurses to change Haley’s diaper when they offer.

In other Haley news, she’s 1228 grams, and grown to 14 1/2 inches in length. She’ll be walking around the nursery any day now.

On Saturday we celebrated mother’s day with my parents, and then went to see Haley. She was doing well enough so my mom and dad got to hold Haley for a few minutes. It’s weird that grandparents don’t get to hold the baby until a month later. We came back later in the day and Haley had moved! She was no longer in the little closed off room, but out in the big room, albeit in her little corner of it. This meant that they thought she was stable enough to be able to deal with more noises and not need to go back on the high-flow oxygen.

Sunday was Nichole’s first mother’s day! Yipee! I know neither of us were expecting to celebrate Mother’s or Father’s day this year but we get to do both. Haley was doing fine in the big-girl room and we found some time to play mini-golf. Fortunately no teeth were lost and it was a pleasant day.

On Monday Haley got her first taste of bathing. It’s actually really hard to give a 2 lb baby a bath. You’d think that because you’re bigger and stronger than they are that they couldn’t get into much trouble. Well, you’d be wrong. Haley kept pulling at her oxygen every chance she got and sometimes it wasn’t that easy to get it away from her and back into her nose. For her first bath they wheeled over a radiant-heater bed, we put her on it, and mostly gave her a sponge bath. We have some video of it which I’ll get around to editing and posting about the time Haley goes to college. Check out the pictures if you can’t wait that long.

Tuesday was her one month birthday. It’s gone by so fast that it’s hard to believe she’s that old already. The staff were nice enough to get her a cake to celebrate the occasion. It was suggested that we freeze it and save it until Haley could actually have some next year, but my weakness for baked goods was too strong and I cut into it as soon as I got home. I’ll just get her a new cake next year.

On Wednesday they started the transition to what they call “bolus” feeding. Instead of being feed a constant 7 ml per hour, they changed her feeding to be 21 ml over 2 hours. This gives her system time to digest for an hour before getting more food. Eventually she’ll get down to a normal level of her entire feeding in half an hour. A couple of days ago it was suggested by one of the NNPs that we could read to her. The first night I read Dr. Seuss’s One Fish Two Fish Red Fish Blue Fish. About half way thorough I looked up at Nichole and declared that the book had no plot. It doesn’t, and so this evening I began reading Harry Potter.

On Thursday we went in at 8:00 in the morning because we heard that she was quite awake at that time. Sure enough, when we walk in she’s just looking around like nobody’s business. Nichole even had a hard time holding her because she was so wiggly. Later in the morning they tried to drop her feedings to 21 ml in 1 hour, but Haley got really fussy so they bumped it up to 21 ml in 1.5 hours. I guess she won’t be ready for a Thanksgiving dinner anytime soon. On Thursday night they weighed her and she was 2 lbs 12 ozs, up a whole pound since birth.