Confessions of a Premature Drama Queen

We’re the feature family for a chairty called Newborn Hope in the Springs. They made a PSA about prematurity and we’re the stars You can view it here.

It’s quite the change from one year to another:

The picture on the left is from when she was 11 days old. Anything before that and I don’t have a really good picture of her. Looking back on everything, it just doesn’t seem real anymore. This time last year, we were going to the hospital three or four times a day, and now you can’t tell by looking at her that she was born so early. Other than being a tiny little one year old, she’s perfectly normal. I can’t believe how lucky we are that everything turned out okay.

Haley turned 11 months old last Friday, it’s unbelievable that she’ll be a whole year old next month. She’s doing just super. On Saturday morning we discovered that she had a little tooth poking out her gums. I noticed this when she put my finger in her mouth and proceded to bite down very hard. Haley doesn’t seem to have any of the normal teething fussiness with this tooth. She’s been acting pretty normal the entire week.

She’s still crawling over the place like mad. Sometimes she even thinks she can walk. She’ll pull herself up, let go, and turn around. Since she actually can’t walk, she falls down. It reminds me of the old Looney Tunes cartoons where the Wylie E. Coyote doesn’t fall until he actually realizes he’s off the cliff. Everybody thinks she’ll be walking by her birthday, so we’ll see.

We are raising money for the March of Dimes, you can support us by going here:

We set a very reasonable goal of $200, so please chip in, even if it’s only 5 bucks.

I’ve uploaded a few more new pictures for January, and a new album for February. Haley is doing great. She’s pretty much mastered crawling, and stair climbing and is looking for new challenges. She’ll independently stand sometimes, but she doesn’t realise she’s doing it. After she pulls her self up on something, she’ll just let go and stand for a little bit, then she either falls over or holds on to something. 

She had her Synagis shot yesterday, and when they weighed her she’s up to 14 lbs 12 ozs. Which is about 8 times her birth weight. We couldn’t happier with her progress.

Sorry for the delay, I started a new job, and my wife went back to work, and then there’s the whole raising an upstanding member of society thing. I think I have time to start updating again, so we’ll shoot for once a week updates.

Things have been going well. Haley’s a giant baby now with all the features of a 6 month old (head control, grabby hands, and tilt steering). If I were to guess I’d say she’s about 13 pounds. I’ll get some pictures up as soon as I can.

Well, not really but for a couple of days this week while I’m between jobs I am. It’s a lot harder than you imagine. Haley doesn’t sleep too much during the day so you have to keep her entertained or she lets you know she’s bored. It’s pretty tough to keep her focused so we spend most of the day walking around looking at stuff.

Nichole’s mom is coming a couple of days though so I can get some things done like get my car fixed and try the FREX to see if that works out for the commute to Denver.

Haley is doing well and is probably about 9 lbs or so. It’s hard to believe she’s almost five months old.

I sent this from my iPhone on a bus going 75 MPH. I love technology.

One of the acidemias listed is not real, but Haley doesn’t have any of them. This post was actually started back on April 28th, but I didn’t want to post anything about it till we knew for sure. When a baby is born they check for certain treatable diseases. Things like sickle cell anemia and PKU. When Haley had her first one done, it showed that she may have Isovaleric Acidemia, but was later revised to possible Gluteric Acidemia. They are both genetic disorders that cause people to lack certain enzymes which in turn prohibit them from fully processing certain proteins and amino acids.  Her follow-up check was normal, but they needed to be sure. We wouldn’t know for sure until they sequenced her genes and checked. In order to sequence her genes, they wanted to take 2 ml of blood. I know it doesn’t sound like a lot, but on April 28th, it was somewhere between 5% and 10% of her total blood volume. So they waited to take the blood until a couple of days before she went home. So 2 months later we get the results back and she for sure does not have any variety of acidemia. So yay!

As far as other updates are concerned, Haley is doing just super. She’s about 8 lbs, and is bright eyed and bushy tailed for couple hours a day. She loves to look at ceiling fans and is a regular poop machine. Nichole started back to work a week ago and she really misses Haley during the day. We’re both tired, but at least the Olympics are on at 3:00 in the morning so we have something to watch when Haley is eating.

By the way, beardic acidemia is not a genetic problem, but a social intolerance of bearded people.

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.