This morning we went to Hattie's cardiologist appointment armed with a page of questions for Dr. Shanthi. At our last appointment, I was a hormonal wreck and I sobbed the whole time. Thankfully she was understanding and very kind! But we left not feeling like we totally understood everything.
Now that we've had some time to let it sink in that Hattie has a congenital heart defect and that she will need to have surgery, we've done some research and are starting to feel more in control of the situation. We still don't like it and don't want to think of our baby having her chest cut open, but knowledge is power and the more we know, the more our comfort level increases.
The appointments always start with Hattie being weighed and measured. She's put on a few more ounces, so that was good news. This last week, she's changed up her eating/sleeping pattern from 3 ounces and 3 hours of sleep to taking 1.5 ounce and a catnap. It makes the day seem like we are constantly feeding. Hearing that she is still putting on weight makes us feel better about it though!
The next part of her appointment is an echocardiogram, or an ultrasound of her heart. She doesn't usually mind it except that she has to lay on the table in just a diaper and she doesn't like to be cold. We wrap her legs in a blankie and Daddy helps hold her arms so she doesn't help John, the man doing the procedure, "try to drive."
Next, we go into a room where she gets her blood pressure taken and they measure her oxygenation levels. Today both looked great - they like her oxygen level to be in the high 90's at least at today hers was at 100%. Yeayyyy Hattie!
She didn't have to have an EKG today, so Dr. Shanthi, her cardiologist, came in to talk to us. She is a very kind woman and she was very patient with our list of questions.
Paul and I have done a lot of research on ASDs, holes in the atrium walls. That part we understand, but we were having a hard time grasping what the other part of her diagnosis is (partial anomalous pulmonary venous connection). When you look online, there isn't a lot of info that is written in easy, layman's terms. So, we got more clarification today. If you can picture the top two atriums of the heart, with a wall separating them. The pulmonary vein runs along that wall and pushes blood down into the left atrium. Hattie has a hole in the wall, which makes an opening to the right atrium. That atrium is empty, so the blood wants to go through the hole (ASD) and into the right atrium instead of flowing down into the left atrium like it should. People keep asking us how they can be so sure that the hole won't close up and how know already that she'll need surgery. They said that the location of the hole is what determines the need for surgery. Because hers is right by the pulmonary vein, it will not close up on its own and she will definitely need open heart surgery.
What will surgery entail?
Surgery will more than likely be done on a Monday and it will take approximately 7 hours. The surgery itself will last about 70 minutes, but the rest of that time will be getting her anesthesia perfected, getting her prepped for surgery, etc. The surgery will consist of placing a Dacron patch on the hole and possibly disconnecting and reconnecting the pulmonary vein. When she is about 9 months old, they do a CT scan of her heart and they'll be able to tell if that part is necessary.
Her surgery team will consist of 4 surgeons, one being the head of cardiac surgery. He's been doing these surgeries for over 20 years. Hattie will be in the hospital for approximately one week if all goes as planned. She'll be on some pain meds, but will be able to eat normally and they don't anticipate that she'll need any long-term medications. She'll have about a 6 week recovery period afterwards where she won't be able to go to daycare and won't be able to be picked up. That part worries me! I understand why, but not being able to pick her up for that long seems like an eternity!
Why wait until she's 1 or 1 and a half to do the surgery?
The veins are very tiny right now and if they do the surgery now, they'll more than likely have to go in and do it again later, which creates more scar tissue. The right atrium tends to get enlarged with this condition, but it won't happen for a while yet, so we aren't endangering her by waiting. The head of the AHA has studied over 10,000 cases nationwide and had come to the conclusion that between 1 and 1 and a half is the best time for surgery.
The best news of the day is that she is doing really well and the every 5 week appointments aren't necessary. We get to wait 3 months before the next appointment!
