A Zippy Pregnancy

(So it occurs to me that with all that's been posted, I never really explained why our baby is in the NICU. I'll explain that and then what complications we experienced during the pregnancy. For the short version to just find out what's wrong with her now, you can just read the next three paragraphs. There'll be a later post about the delivery.)

Yes she's premature and that is an issue, but she also is going to need surgery to correct a restriction in her aorta once she gets bigger. (The doctors want her to be 4.5-5lbs and right now she's just under 3.5lbs.) This sounds scary, but believe it or not, it's a routine procedure with a very high success rate of 95% or higher. Also, I'm convinced we have the best pediatric heart surgeon in FTW, maybe all of DFW and North Texas. His resume is impeccable (10 yrs of thoracic and cardio surgery at Johns Hopkins, then for years he did most all the heart and lung transplants for Emery in Atlanta) and he has done thousands of these. It is not even open heart surgery, they go in under the arm on the side of the abdomen to do the procedure. Recovery is relatively quick, recurrence is minimal, and there are no lasting effects once it's fixed. And what we find so encouraging is that she is stable enough that the doctors are comfortable giving her all this time to get bigger and stronger on her own so that it will be an easier surgery and quicker recovery for her.

This restriction is called coarctation of the aorta and it keeps blood from flowing to her lower body as well as it should. The good news is that it didn't endanger her in the womb because in a fetus there is an extra vessel called a ductus that allows blood to bypass the lungs and go into the aorta to the rest of the body. And her blood was already oxygenated for her. After birth, the ductus normally closes as the lungs are inflated and oxygen is absorbed for the first time. For Sophie, her doctors are giving her a medication to keep the ductus open indefinitely while she gets bigger. Keeping it open works the opposite for her. Since her aorta is restricted, blood goes the other way (path of least resistance) through the ductus into the pulmonary artery to the lungs where it mixes and then goes on to the lower body. At least, I'm pretty sure I've got that right. It really is amazing what they can do nowadays.

These kind of heart defects often occur in groups, and she also has a VSD or ventricular septal defect, which is basically a hole between the chambers of her lower heart. This also sounds scary, but it's not that bad. In fact, when it was first diagnosed in Oct, they said she would need immediate surgery in the first few days to repair this, but throughout the pregnancy it got better and now is not even the main concern. In fact, they are going to fix the aorta and give the heart every chance to heal itself and close over the hole with tissue. After a few months, if it's still there and is a problem, they'll go in and put a patch over it. But even if that's necessary, it's still a routine procedure and she will be much bigger and stronger by then. I know this all sounds scary, but believe me, it could be a lot worse and we consider ourselves very lucky to have her be born to us in the condition that she was in.

More about the pregnancy...

Here's a little background on how we got to where we were on January 8th. During the pregnancy, Stephanie's OB ordered a quad-screen test. Hers showed that she might be at risk for a condition called spina-bifida. This is scary stuff to hear. You never want your doctor to call you directly, trust me. If a nurse or assistant calls you, that's something routine. If your doctor personally calls you... uhoh. Anyway, we were referred to a perinatal (high-risk pregnancy) doctor and also had to meet with a geneticist. The good news was that the new Dr saw no signs of spina-bifida in the sonogram.

At our next meeting, however, he said that he saw something a little different about the heart, but could be nothing, so he referred us to a pediatric cardio specialist. She did an echo-cardiogram. This indicated there the above heart defects, but she thought they would be reparable and while they sound scary, they are fairly common, like 8 in 1000. This was months before delivery, however, so things could improve by then. Okay, we accepted that our baby would likely need some sort of treatment after delivery. But she also said we could not deliver at the hospital near our house (I can literally see it out my kitchen window), but would have to deliver in Dallas so the baby would be at a facility that could provide that kind of care.

Well, Stephanie works in SW Ft Worth. She didn't like the idea that she would have to drive 60 miles across DFW for all these doctor visits. Plus, what if she was at work and went into labor during rush hour? It would be impossible to get there in less than 2 hours. So we told her OB that we would prefer to do this in Ft Worth.

This meant that we would have to get a whole new team of doctors, including OB. The delivery would be at Harris Hospital in downtown FtW and the baby would go next door to Cooks Childrens Hospital, so we would have to get new doctors that practice at that hospital. So we met with a new perinatal, cardio, OB and thoracic doctors over the next few weeks. Oh yeah, and Stephanie also developed gestational diabetes, despite her very healthy pregnancy specific diet. So we got to meet with a nutritionist and nurse practitioner about that.

Things were going well. She had no high blood pressure, swelling, hardly any nausea. But she did have an episode where she felt pain in her upper abdomen. She couldn't really identify it, so we called the ob's office. The nurse practitioner on call told her to take a hot bath and try aceteminophen. This relieved things and we figured it was upset tummy. Over the next week or two she had 2 more episodes like this. One was after eating too many rich foods, so we thought it might also be due to blood sugar issues from the diabetes.

But then they got worse. Over the next week she had two or three more. They always happened in the evening and the only relief was the hot bath. The "attacks" as I call them seemed to get worse and take longer to go away. She told both her OB's office and also the new perinatal doctor. They told us it was probably just normal aches & pains from pregnancy. It's not uncommon for nausea to return in the 3rd trimester, either. They hear a pregnant lady say she has trouble breathing and an upset tummy and don't think much of it--especially for first-time parents, I bet.

I was still worried, but what could we do? Besides the baby was always looking good in the sonogram and had plenty of movement the whole time. So we tried not to worry too much.

Thursday Jan 3 we saw the perinatal doctor again. She said the ultrasound looked good, but the baby was smaller than it should be at this point (3lbs vs 4-5). This was enough for her to tell us that we would have to come in for monitoring twice a week until delivery. We set up an appointment for the following Tuesday. In the meantime, we tried to talk to the baby and tell it to get bigger.

Well, on Monday Stephanie had another attack and it was the worst one yet. She had to have someone drive her home from work. She could hardly breathe and the pain lasted for almost an hour. It was very scary for us both. But finally she started feeling better, and the next morning was the doctor visit so we felt better because we could tell her about it then.

I also forgot to mention that for a while there she also had placenta previa, which did correct itself, and that the baby was breach for the entire term. But in actuality the whole thing was less scary than it probably sounds (except for the last attack). We knew that the baby was moving a lot, which the doctors said was great, and on the sonograms exhibited good breathing motions. They "breathe" the amnio fluid into their lungs to develop them and the chest muscles. Again, we were told this is very good and you don't always see it during the short sonogram sessions. So this was encouraging.

Tuesday's visit was not with the doctor, but a nurse or technician who did the sonogram. The baby's movement was really good. We told her about what happened the night before, but she didn't seem that concerned about it. Then they put Stephanie on a fetal monitor to observe fetal heartbeat and contractions. During this she got a massive headache and her blood pressure was high (for the first time ever). The doctor said that there was something not right about the way that the baby's heartbeat was reacting to the contractions. So she sent us down the street to Harris to the Maternal Observation ward so they could monitor her. Our new OB (who I had yet to meet) was also paged and told to expect us there...