Confessions of a Premature Drama Queen

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.

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):

After Haley was born, she did really well for the first 24 hours. The staff had reduced her oxygen to near room air, and she was breathing some breaths in addition to the ventilator. Everything was going pretty good except for her breathing and blood pressure. She had a lots of blood work done, a chest x-ray, an echocardiogram, and an ultrasound of her head.

The blood were came back pretty normal except for elevated levels of bilirubin which is common even in full term babies. The treatment for this is phototherapy also know as the baby tanning bed. She gets to wear nice little shades and bask in the warming glow of a spotlight.

The chest x-ray was done to see how well her lungs were inflated. Haley had been given a dose of surfactant almost immediately following delivery. This is essentially Rain-X that breaks down the surface tension of the fluid in her lungs and allow them to process oxygen more readily. Since she was having some difficulty breathing even when they increased her oxygen, they gave her another dose.

The echocardiogram was done to check for a birth “defect” known as patent ductus arteriosus or PDA. This little blood vessel acts as a bypass for the blood flowing to the lungs because a fetus in the womb doesn’t have much need for their lungs. In full term babies the the PDA usually closes on it’s own accord almost immediately after birth. The test showed that like many pre-term infants, hers did not close. This meant her heart had to work twice as hard to get her blood flowing properly and that her lungs were having trouble exchanging the air. In the olden days (1990s) they used to just operate on the baby and tie the little bugger shut. Neonatologists have evolved since then and now use a drug called Indomethacin to close the bypass. Indomethacin is like ibuprofen or motrin.

Since the treatment for the PDA can cause bleeding in the brain, a ultrasound of little Haley’s brain was done to ensure nothing was wrong before the administration. Fortunately everything came back good from the ultrasound.

At this point Haley had been through tons of tests, was on a ventilator and generally not feeling very good. The worry that had left me in the night had returned with a vengeance.