I just got up from a looooong nap. I don't know if it's just the third trimester or everything else, but I'm so tired, all the time.
We had our second fetal echo in as many days. This was the official one at Childrens' Hospital in Boston where Sammy will have his first surgery, the Norwood.
The staged reconstruction for HLHS requires three operations. The first is the Norwood procedure, usually performed in the first week or two of life. In the Norwood procedure, the pulmonary artery is sewn to the aorta. This allows the only good ventricle, the right ventricle, to pump blood to the body rather than the lungs as it normally does. In order to get some blood to the lungs, a small tube of Gore-Tex is sewn from the innominate artery (artery to the right arm and head) to the pulmonary artery. This a major and very complex surgery, with the babies often spending several weeks in the PEDIATRIC INTENSIVE CARE UNIT after the surgery. When the child leaves the hospital, he or she will be mildly blue, or cyanotic. (from The Heart Institute at Albany)It was a good visit, sort of. We love the pediatric cardiologist at Children's too - Dr. Brown (apparently everyone loves him - all the nurses in the CICU giggled when we mentioned his name).
He told us what we heard yesterday - Sammy's heart is pretty much the same as before, just a larger version of it. He arranged a tour of the CICU for us, so we got to see the facilities as well as heart babies who had just gone through surgeries. We had seen pictures online before, so we handled it well - we saw one little boy whose chest was still open. It was a bit much to see THAT in person, but Sammy's going to go through it and I'd rather be prepared for what we're in for. The nurse couldn't tell us what was wrong with the little boy, but she said he was the most serious case they had right then. She was great - showed us what all the tubes and lines were, and told us which ones Sammy would likely have. She answered a lot of our questions, from pumping to breastfeeding to leaving toys with him when we're not there to staying overnight to well, everything we could think of.
When I asked if there were any HLHS babies there right now, she laughed and was like, "Of course. That's what we do here - we're the HLHS center." She said sometimes she needs to step back and realize how rare it really is, because they work so closely with so many HLHS kids all the time. It was really good to be somewhere where they know everything about his condition - to the point where it's routine for them. It actually felt, for the first time, like we were normal - we weren't a special case or an exception.
I think we both felt that we're in really good hands there. Not that we're looking forward to making that home for several weeks, but everyone seems so wonderful and the place is so well-equipped for little heart babies... I guess there's a reason why people travel from all over the world to take their children there.
32 weeks on Sunday, bi-weekly OB visit next Friday... and the countdown to his arrival begins.
*hug* so glad it was a good, reassuring experience.
Posted by: susannah at January 1, 2006 11:17 AM
It sounds like Sammy is going to be in excellent hands. I'm so glad you were able to take a tour and that you had things explained so specifically to you. I'm sure it eased your minds a little to know more about what to expect-and to see you're not the only ones who have had to embark on this journey. How lucky you are to live so close to a hospital that has the resources to help Sammy (and you guys)through this. The staff sounds wonderful and kind-just what the three of you will need.
Posted by: allie at December 31, 2005 12:36 PMThank you for sharing details of the procedure. I've heard of the Norwood but never knew what it entailed-and you found an explanation that I could actually comprehend without too much medical jargon (I've been curiously trying to read up on this and trying to piece it together with my vague existent understanding-my youngest sister was born with a mild heart defect, so I did know a little-VERY little). It's amazing what can be done nowadays. Sharing all of this, I am sure, is in a way therapeutic for you-but it's good for your friends and family to be able to know and understand a bit more about the procedure-because we all do care so much, you know. :)
From so many miles away, the three of us are wishing the 3 of you a Happy and HEALTHY 2006-the year that will change your lives SOOOO much-and in a wonderful way. Even though we're hours and hours away, it is still just a phone call or email away...I know you have lots of support nearby, but we're here if you ever want to gab. Rachel is patiently awaiting Sammy's arrival...she's so boy crazy already, it's terrifying. She gets all giggly when she sees pics of our friends' adorable sons, so I know I'm going to have my hands full in 12-15 years, lol.
Happy New Year! And keep the updates coming!