Twins Update

Alright... I'm not even going to say it. I know it, you know it. I'm late and since I'm on bedrest I really have no excuse! :o)

Things are going fast and slow at our house. On the one hand, it seems that the days are just flying by as quickly as ever and on the other hand it feels like I haven't left my house in years. I feel amazingly out of touch with the real world in ways that I didn't quite expect. Yesterday, we had a big doctor's appointment to meet with the surgeon and some other folks (more about this later) and driving down our street I commented to Brad about how lovely it looked since all the leaves have fallen onto the lawns creating this lovely fall look. Brad said, "wow, I guess it's been awhile since you've been out!" So it's sort of in this weird way that I feel disconnected. I'm not sure what the weather is ever like, and I'm not sure it ever occurred to me before to miss knowing that. I've been three weeks inside now and I'd say it both feels like I just went on bedrest a few days ago and that I've always been on bedrest. I know I'll get through it though, and I know that in the long run it's really a very short period of time.

Once again, I'll update on the twins first and then put the gazillion photos of L in my next post this afternoon as your reward for sticking with me. You better get ready too, cause there are some cute ones in there! :o)

We've had several big appointments in the past several weeks. First we met with a new cardiologist. Well... she's not a new cardiologist, she's just another cardiologist in the same practice that we had already been to, but this doctor makes more visits to the hospital where we will deliver so we decided to start seeing her. She again confirmed the diagnosis of HLHS and told us that there is no controversy there and that it is definitely the diagnosis. She also warned us that at times there are problems that are not uncovered until birth, but that from what she could see, the HLHS is the only heart defect that we are dealing with. She also let us know that the calcification and thickening of the endocardia is consistent with HLHS and will likely get worse as the pregnancy progresses and the left side of baby B's heart continues to shrink. This is normal for HLHS and does not effect outcome. She was able to get pictures of everything they needed for the surgeon and we got a pass to come back in another month! She was very concerned and interested in the genetic connection within my family though. My sister had a closely related heart defect, coarctation (narrowing) of the aorta, and I have a second cousin with HLHS (my first cousin's child). HLHS is very rare and to have family members with the same or similar defects is pretty amazing. Finally, we were able to confirm once again that baby W is healthy.

We also had another appointment with the new perinatologist practice. This time we were able to see the head of the practice, which was wonderful! He put us at immediate ease and wanted to refocus our attentions on the major issue at hand, which is getting the twins to their largest possible size and most developed before they make their appearance in this world. He was concerned about the high rate of preeclampsia in mothers of twins, so he put me on a new regimen of taking my blood pressure, testing for protein in the urine and checking for fluid retention through weight gain. Since the only real prevention for preeclampsia is rest, he also put me on strict bedrest. This means laying down all the time with bathroom breaks and meals at the table still allowed. I'm not going to lie to you... it stinks! It's not nearly as bad as it could be though, and I am enjoying developing an online shopping habit and it does make my doctor's appointments seem that much more exciting!

Our third major appointment was with the people who will be treating us at the hospital when the twins are born. Last night we met with a geneticist, a lactation consultant and the surgeon who will be operating on baby B. We met with the geneticist first. She was also interested in the family connection between these heart defects. She told us that the current trend in thought is that there is a genetic predisposition to these conditions that includes a dominant/recessive gene (much like tay-sachs or other genetically inherited diseases) where both parents have to contribute the recessive "heart defect" gene in order for a baby to be born with one. She said that this gene is probably not a gene that causes HLHS but that causes a predisposition to that type of heart defect with HLHS being on the more severe end of what can develop. Brad and I are both carriers of the recessive gene even though the dominant "no heart defect" gene is clearly what is working in our bodies. Therefore, with any further pregnancies our chances of having a child with a heart defect is probably around 25% (the actual statistics for actual families ranging from 8% to around 35%), and depending on if/who baby B decides to have children with he could have anywhere from a 50% to a 0% chance of having a child with the disease (though all of his children will be carriers of the gene). The geneticist warned us, however, that the research is still very new (which makes sense, because the cardiologist told us that it was not a dominant/recessive gene thing, so clearly there is not agreement across the board on this) and that by the time baby B is ready to have children, things may be drastically different. I hope that wasn't too confusing. She was able to draw a picture for us which made it much easier to understand. If you have questions, let me know and I'll try to answer them. Our plan has never been to have any more biological children but it was definitely interesting to hear given that everytime I make plans God laughs. :o)

Next we met with the lactation consultant. When I learned that I was having twins, I started to research how to breastfeed them. I have to say that having L, who was largely formula fed, and seeing her today, I'm not as worried about this as I might have been if these were our first children. I would love to breastfeed them, but I know that if it doesn't work out that it will be fine. That said, I wanted to meet with the lactation consultant and talk logistics. With one baby in the hospital and another baby at home and my boobs firmly attached to my body, I wondered how could we realistically make this work. Baby B is more than likely going to be too weak to suck effectively at the breast, making this even more difficult. We discussed some solutions and I think we will be able to work it out. At least at this point, we know what we need to do after we get to the hospital to facilitate as easy a process as possible.

We then met with the surgeon. This was, of course, the main reason that we came to the hospital and the person we were most anxious to meet. I have to say that it was kind of eerie to be sitting next to the man who is going to perform the surgery that will save our child's life. It just kind of blows my mind that I had this casual conversation with this doctor who is going to change me forever. It was crazy! I've met a lot of specialists in my life, and I find that some have a better bedside manner than others. The surgeon was fantastic. He walked us through each step of the surgery with a model of a giant heart and explained everything to us. It was just amazingly helpful to have someone so nice be the person to help us out. It was also nice to see the statistics on the hospital. At our hopsital, last year, there were 10 Norwood procedures performed (all by this surgeon and his team). The survival rate was 90%. That's pretty good! He pointed out to us that in terms of heart surgeries in general, that the Norwood is quite risky, because even with a mortality rate of 10-15% it's still much higher than most other surgeries. We're not thinking about that though and we're going for 90%. He explained to us the challenges little B is going to face just getting from the first surgery to the second surgery since there is about the same mortality 10-15% in between the two surgeries. This is mostly caused because if he catches a cold or even a normal childhood infection it could be deadly for him. In order to help us with this, we'll receive monitoring equipment to help us keep track of B's vitals so we can get to a hospital before an emergency gets out of hand. All of that sounds kind of morbid, but it's his job to go over that stuff with us. The visit was very largely positive and we are going to trust this man to take care of our precious child. He also discussed our other options with us. The only other surgical option (the only other option involving survival beyond a few weeks, in other words) is heart transplant. We had already done a bit of research into this, and so we'd decided against it anyhow, but it gave the subject some finality to discuss it with the doctor. B may end up with a heart transplant at some point, but hopefully not until adulthood. We now have a concrete plan for surgery, though just like the cardiologist he warned us of the possibility of finding other problems after birth, but we're praying for the best in that regard. All in all it was a great meeting!

That's all for now with updates on the twins. Baby W is doing great. They are both growing like weeds and hopefully will continue to do so. I'll have to get Brad to take another belly shot, if you promise not to judge me for wearing pajamas. My belly at least feels crazy huge!

See you all this afternoon!