Monday, February 9, 2009

CHD Awareness Week

Today marks the first day of CHD Awareness Week - culminating on Saturday the 14th, as CHD Awareness Day. Yes it is also Valentine's Day, but it is also important to remember something else to do with hearts other than your love for someone (nice as that is). On this first day, I will share how we beame affected by this - how our journey began.

I wasn't planning on getting pregnant, but things happen, so at the end of 2003, I found myself expecting our first child together. Everything was going just fine, I wasn't sick, no particular health issues, everything just as it should be. I went for the 20 week ultrasound, and I was excited to find out what we were having. James didn't want to find out - he thought we could just be surprised and buy unisex things until the baby arrived. I thought he was nuts and obviously had never been in a baby store - why else would he say something so silly?? Anyway, that ultrasound went just fine - they thought we were having a girl! I went home and I think the next day or so I got a call from my OB. He said "So, I hear you went for your ultrsound yesterday. How'd it go?" I told him it went fine, and they thought we were having a girl. He responded "well they didn't get a good look at the heart, so we're going to send you for a targeted ultrasound. I wouldn't worry about it, the baby's so small at this stage it was probably just facing the wrong way. I just referred another lady over a couple weeks ago and everything was fine." I said okay, and the appointment got made. I made James come with me to that appointment. I was laying on the table with the goo on me and they were taking the ultrasound. No one really said anything to me while they were doing it, but the doctor and the other people in the room were talking amongst themselves about what they were looking at. I heard them say things like "well see this here is too small" and "you can see this is compensating" and I just got a horrible feeling inside. I knew something was wrong, I thought "they don't say things like that if everything is okay". I didn't completely lose it, but I remember holding James' hand so tightly and just starting to cry there on the table. They had one of the pediatric cardiologists come down after that, it was Dr. Brauner I remember (not Zoe's current doc). He came down and said that yes, there was indeed something wrong with her heart, and I would not be able to deliver the baby here in Alaska. She would need surgery, and there are no pediatric heart surgeons in our state. He said that most patients get sent to Portland, and some go to Seattle. They had me do an amniocentesis at that appointment as well to make sure there were no other genetic problems, so I had to go home and stay off my feet the rest of the day. We left that appointment with no definitive diagnosis, but I remembered them talking about the right side of her heart, so after I went home I spent a lot of time on the computer trying to find out all I could about right sided heart defects. As it happened, there was pretty much nothing. I found information on problems with the LEFT SIDE called Hypoplastic Left Heart Syndrome, so I thought, "well she must have Hypoplastic Right Heart Syndrome". As it happened I wasn't too far off, but it is more complicated than that.

I had monthly appointments with a perinatologist after that, and at about 37 weeks, I flew to Seattle to meet with doctors down there. They performed an ultrasound on me there - at which I nearly passed out so I had to lay on my side for it - it was a long one! Afterwards the perinatologist there and a cardiologist from the Seattle Children's hospital talked with me about what they saw. They said that they would do another amniocentesis to check for lung function because the fluid looked a little low around the baby, and the baby looked big enough so they felt that she didn't need more time to "cook" as it were. The cardiologist sat down with me and talked about her defects. He briefly got my hopes up, because he said that the doctors in Alaska couldn't see a tricuspid valve (the valve between the right atrium and right ventricle) but he could see one. He thought that if that was the case, then there might be a chance she would not need 3 surgeries, maybe only 1 much less invasive one. That got me a bit excited, but they wouldn't know for sure until they could do the ultrasound on the baby directly, instead of going through me. The lung function amnio came back just fine, so I got on the phone and told James to get down there since they would be inducing me the next day.

That next day was August 3rd. I spent the first 12 hours not in labor but having some cervical ripening stuff inside me since my body was not ready to be in labor at that point - I was still shut tight. They started pitocin at midnight, and thankfully kept it at a low dose and just made it go up gradually throughout the night. I slept soundly through the first 8 hours or so of labor. So nice! During the day, they kept increasing it and I kept going back and forth about "epidural or no epidural?" James told me to stick it out as long as I was reasonably comfortable between contractions - which I was. When it got really bad, they checked me, informed me that I was 8 1/2 cm dilated and the anesthesiologist was in an emergency C-section. No epidural for me. So Zoe was delivered pretty naturally ( I had IV pain meds but that didn't do much of anything). She arrived on August 4th, 2004 - 8 lbs 1 1/4oz and 19 inches. There was quite a crowd in the delivery room, and as soon as she was out and cleaned off, they whisked her off to the UW NICU to get started on her prostaglandin - that is an IV medication that they use to keep the ductus open. The ductus is a natural 'hole" in the heart that all babies have before they are born because they don't need to use their lungs. It naturally closes after birth, and in babies with her type of defect, that is when their troubles begin. Keeping it open allows them to live and be stable until surgery is done. They brought her back to us in an isolette all hooked up with lines and IV's ready to go by ambulance to the Children's Hospital. We saw her for a minute, and she looked pretty good - except for 1 purple toe! James and I freaked a little about that but we were assured it was perfectly fine. She left and I spent that night alone on the mother baby floor. That night I recieved a call from another cardiologist at the Children's Hospital telling me about our baby, and the definitive diagnosis of what she had. He said they did a cath on her (which is an x -ray from the inside - sorta) and she had Pulmonary Valve Atresia (atresia basically means it's absent) and Ebstein's Anomaly. Ebstein's Anomaly is a malformation of the Tricuspid Valve, and he said that in her case it was so severe that that valve might as well not be there (so much for only having 1 surgery!). These defects mean that she has a Hypoplastic Right Heart (Hypoplastic means it's too small). They said she was a beautiful baby and she was doing just fine. I was discharged the next morning so we could get right over to the Childrens' hospital to see Zoe.

Before we ever saw her, we knew she would be in good hands. Everyone in Seattle we talked to, who we told about our new baby at the hospital all said nothing but wonderful things abou the hospital and what good things they did there and how wonderful it was. Tomorrow I will share more about our journey - how it continued in those first few weeks. Later I will share information about Zoe's 2nd and 3rd surgery, and then I will talk more about other things related to heart defects and what you can do. I hope to do a post every day this week in honor of the occasion! Keep posted here!

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