The cardiologist appointment we had yesterday was quick and to the point. Dr. Pruetz did the echo, got some good images of what he wanted, and informed us that nothing has changed. Though the septum is not fully intact, the restriction is still very moderate, the stats show that Luca’s valves are muscularized and that lung damage is to be expected.
I asked him about the c-section plan my other doctors discussed with me and found out that delivery was scheduled on a date that Dr. Starnes, the surgeon, is not in the hospital……… There may be a change in date now, but we won’t know until next week. I feel very adamant that anytime my baby’s heart will be open that Dr. Starnes will be the one working on it. It is one of the main reasons we chose CHLA.
This entire pregnancy has been filled with unknowns and it’s been hard for the doctors to give any clear and concise answer on what exactly will happen. Now that we have a plan pretty much in place and we’re getting down to the wire, I got real with Dr. Pruetz. I asked him if this was his baby and I was his wife and he was sitting in this room with a heart doctor to get a clear picture of reality, what’s the answer he would expect. He said, wow you’re tough, but I understand what you mean. And he got on with it. This is where we are…
We can expect a very, very sick baby. The baby will be immediately taken to the OR for surgery on day 1 of life. A septectomy will be performed to clear the blockage, not to be confused with a septostomy which is done via catheterization. This is a full on open heart surgery. We can expect the baby to be intubated and on a ventilator (breathing machine) immediately upon delivery and throughout the septectomy. During this time, he will also be on the heart-lung bypass machine. Once that surgery is complete, his chest will be left open and his body will probably experience severe swelling. A primary concern will be renal (kidney) failure and should Luca experience any of that, he will not be a candidate for the first “re-plumbing” surgery, the Norwood. Brain damage is a concern while on the bypass machine. The doctors hope to get his swelling down in enough time to perform the Norwood surgery without having to close his chest. Best case scenario for the Norwood would be within a few days of the septectomy, but given the swelling they are expecting, it could take longer. He will continue be on the ventilator throughout the Norwood and back on the bypass machine. More chance for brain damage. The moment of truth will probably come after this surgery. Luca will be recovering from two open-heart surgeries after the Norwood and we are to expect swelling, kidney problems, etc. post-op. All of this doesn’t even matter if Luca’s lungs aren’t working properly to begin with. But, if he makes it through the Norwood, there’s a 50% chance he will come home. If that’s the case, there’s a good chance he will come home with oxygen given the lung issues they anticipate, but they hope to have him feeding on his on by that time. We can expect at least a two month stay between the CTICU and step-down ICUs IF both of these surgeries go well without any additional complications. That’s best case scenario, though, unfortunately, not the expectation). Assuming we make it home, there’s a 50% chance Luca will survive to make it through to his second surgery, which would be around 6 months. If we make it to the second surgery and beyond, that’s already considered a miracle.
So 2.5 weeks til delivery and that’s where we are. This is probably just really awkward and I know people don’t know what to say or how to even approach this. Neither do we. Just please continue to pray for us and Luca.