I will be seeing little Andrew sooner than I planned or thought on. They are inducing me at 38 (Around July 21st) weeks or sooner if the following appointments bring up any concerns with Andrew. As soon as he gets here they will stabilize him (have a hospital room full of doctors) and then let us see him real quick before he heads up to NICU. I’m not sure if this means if I can hold him or not, but I will take it either way. He will be stabilized and waiting for up to a week before his first surgery but will have a tube through his belly button (it’s already open from the umbilical cord) and will push medicines through there to keep the two holes present in the womb open (this is what keeps his blood flow actually flowing through the body, and also be a drain point if needed I believe they said. They will run tests, ultrasounds and whatever he needs as he’s being assessed once he gets here (ventilators if he needs help breathing etc.) feeding tube for sure. He will also come home with a feeding tube through his nose for a while after released from the hospital. There are some cases where these babies are born there (Grady) and then rushed by ambulance after stabilized to Emory to b worked on ASAP. So it’s really a wait and see game on how severe his case is after he gets here.
The cardiologist did tell us that once he has the surgery that after he’s going to get and be pretty ill. He said it is a very serious surgery and lots of "things" the cases and each HLHS baby are different, but to be done. His little body is going to be pretty rough looking after surgery, but should heal over time pretty good. He said he didn't like giving percentage rates because they vary with the severity of each case. BUT the average success/survival rate is about 90% since they are such a good hospital/team. The goal after surgery is to keep infections away, make sure there are no complications from the surgery, and that he is able to get weight put on after surgery. Weight gain is the thing with HLHS babies and the length of time and size between procedures. He said Andrew’s stay should be expected to be a month. Longer if need be, but that’s what his situation is looking like now. After he’s released to go home and looking better he will see a cardiologist every week until the series of surgeries are done.
On the other hand we got one of the best doctors to work on him at Emory and Emory is rated #4 in the whole country when it comes to pediatric cardiology surgery. So that was good news to me and peace of mind. I had already looked at and hoped for this doctor from the beginning. If I go into labor early I will be assessed and if it will be enough time to fly me out by helicopter then that’s what they’re doing to get me to Grady/Emory ASAP. If I have him they will stabilize him and then get us flown out there.
We go back in a month and meet everyone else, tour both hospitals, and get all info on the logistics of everything. We meet the surgeon and the surgical team and any other doctors that we didn’t get to meet today. They are going to do an Echocardiogram on my heart and make sure my heart can take the delivery stress since my hr is staying high and my blood pressure was high last time. If not, then they will take him by c-section more than likely…so lots to take in, but we are finally getting a plan together. Life will never be the same after this point for our family.