Confessions of a Premature Drama Queen

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.

So Nichole and I walk into the NICU and we immediately notice that something is different. Me, being a dude, first notice the equipment. There was a container of water plugged into the oxygen port next to Haley’s bed. I start to trace to tube to see exactly what is going on. Nichole, being the mom, checks the baby first, and points out to me that her nasal canula is smaller. At first I don’t think it’s smaller, I just think that Haley is just bigger but upon further investigation I find the other larger canula hanging on the humidifier on the other side of her bed. We look at each other and then it clicks, she’s not on the high-flow oxygen anymore!

Not being neonatologists, Nichole and I both assumed that Haley would be gradually lowered on her percentage of oxygen, and gradually lowered on the flow. That’s not exactly how it works. We talked to the NNP on duty and she told us that sometimes, you just try the low flow oxygen and see how she does. Well, she had only been on it an hour or so but was doing fine on 0.125 ml/hour. When we went back at night, she was still on the low flow and doing fine. One of the biggest benefits for us is that she’ll no longer get flooded when the condensation builds up in her tube because there won’t be condensation. It’s a huge relief and makes us feel more comfortable about taking her out and holding her.

A lot of people have been asking us what our schedule is like with Haley being in the hospital so here it is. It’s pretty much the same weekdays and weekends, I get up around 6:30, get Nichole started on pumping and then start working. When Nichole is done pumping, I store the milk and clean the gear. She goes back to sleep until around 10:00 at which time she gets up and pumps again. She takes a shower, gets ready to go visit Haley for her 12:00 care. At about 11:15, she pumps again. Nichole goes and takes care of Haley and usually holds her for half an hour to an hour. She comes home, pumps, and then relaxes for a bit. Recently she’s had some errand to do during this block of time, which really eats up your day. At 3:15, I’m done with work and Nichole celebrates by pumping one more time before we go to the hospital.

Haley’s care at 4:00 is the same as most times, we change her diaper, move her pulse-ox probe and take her temperature. We spend a little bit of time with her and then we go home. When we get home, Nichole pumps and I start on dinner (sometimes we go out). At 6:00 it’s time for the Wheel and Jeopardy. After that we speed through an episode of one of the shows we recorded (Yes, there is only 15 minutes of actual content in an hour of American Idol) then Nichole pumps, and we go for her 8:00 care.

At 8:00 there’s a little bit more to do. She still gets a fresh diaper, pulse-ox moved and temperature taken but this is also the time she gets a new outfit, gets weighed and gets examined by the night NNP. It’s also the best time for pictures because we raise the lid on her isolet and turn on some lights for the exam. At 8:00 is when Nichole does what they call Kangaroo Care with mostly naked baby on mommy’s bare chest. Haley does very well when we do this and is usually on Nichole for two hours. We get home and Nichole pumps, and then we pass out. Not for long though because we get up to pump again at about 1:30.

Breastfeeding (pumping) is not only the best thing you can do for a NICU baby, it’s a lifestyle choice.

Sorry for the lack of updates, there’s just not much to say. Even the doctors get a sad puppy dog look when we ask about Haley because there’s just nothing new to report. This of course is a good thing because it means she’s doing what she needs to which is grow and sleep. She was up to 1060 grams last night, or about 2 lbs 5 ozs. She did have a blood transfusion on Monday, but that was just because her little body is growing so fast that her bones can’t keep up with red blood cell production. It was either a blood transfusion or a med where she gets poked every other day for two weeks before they see improvement. We went with the transfusion.

I’ve forgotten to mention this before, but we have the best friends ever! A group of them went in together and bought us a bunch of gift cards to various places to eat. It makes it easy to decide what to have for dinner some nights because we just pick a random gift card. Another group went in and bought us some meals from Dream Dinners. The ones we’ve had have been delicious! So thanks guys, it’s greatly appreciated. If you know someone else that is expecting a baby, I can definitely recommend food as the perfect gift for the parents when the baby does arrive. Heck it’d even be good for a baby shower (although it might seem like a weird gift at the time).

Haley’s little roommate was in a bit more trouble than initially suspected. When we showed up on Monday there was an ambulance out front, and the neonatologist asked if we could wait outside while they loaded her up. Nichole and I were thinking that the roommate would be moved to another local hospital, but when they came out with her, two flight nurses were with the two paramedics indicating that she was being flown somewhere. Probably Denver Children’s hospital.

On Sunday Haley turned three weeks old. They checked her measurements again and she had grown by about a centimeter in length, and half a centimeter in head circumference. Her weight was up to 993 grams, just shy of a kilogram but had gained 40 grams in the past day. She’s doing well on her feedings, and her labs were drawn this morning. Depending on the results they may increase her milk fortification to 26 calories, and they may start adding iron, phosphorus and calcium. The iron is to stimulate her bones to create more red-blood cells, due to the rapid growth her body may not be able to keep up with new blood production. If it gets too bad, she’ll have another transfusion. The calcium and phosphorus supplements are for bone growth.

Sometime today Haley will probably be moved to a smaller isolation room. Her little roommate is having a procedure which could take a long time, and make the NICU room quite loud. From what we can tell the roommate is having a PDA ligation, which is surgery to correct the PDA because drugs have either failed or were contraindicated. Haley will be in the other room from this morning to probably tomorrow morning. She gets to keep her bed, so it’s a pretty easy move.

All is good on the Haley front. They’ve kept her feeding at 5 ml/hour, except now they are fortifying Nichole’s milk so that it’s about 22 calories per ounce instead of 20. She may need to go up to 24 or 26 calories per ounce, just depends on if she’s gaining weight like they think she should. When they weighed her last night she was at 950 grams or about 2 pounds 2 oz. She’s huge! I’ll get more pictures up soon.

One thing that is really hard for us is realizing that we’re parents. We’ve had this plan in our minds for so long that there would be a baby at the end of June or early July. Since it didn’t work out that way, we’ve had a hard time changing that idea in our minds. It’s especially hard because even though we have a baby, we don’t get to have the baby around. No baby crying late at night, no dirty diapers around the clock. Our parenting is limited to about 15 minutes three times a day. We could not even be at the hospital for her care times and they’d still take care of it. Heck, we could go on vacation for a week or two and come back and know that she was taken care of. It’s just not the traditional way people expect to have a baby and it’s hard to cope with.

On the plus side Haley’s little roommate is still hanging in there. Also, another baby, Sarah, that was born 12 weeks early (On March 1st) is getting to go home tomorrow. We’ve gotten to know Sarah’s parents really well because they’ve been down the path that Nichole and I are on. Sarah has only had to be in the hospital for 8 weeks so it’s encouraging to know that we may not have to wait until July to bring Haley home.