Conor's Heart - Part 4

The plan for Conor's heart surgery was to do a left subclavian flap repair. They would take an artery running to his left arm and bring it down to widen his aorta. One doctor described it by telling us to think of the aorta and the artery as tubes and that they would basically be flaying them both open and attaching them together to make one tube out of the two of them. Below is one of the pictures we were shown. 

Supposedly this should have no noticeable effect on his left arm, besides not being able to have his pulse or blood pressure accurately measured from that arm. Possibly his left arm will be marginally shorter, though it shouldn't cause him any problems. He told us that as far as heart defects go this was one of the most easily fixable, and that he'd done this surgery so many times that he stopped counting. As horrifying as it was to be told that our baby needed heart surgery it was very reassuring to know how competent and experienced the doctor performing it was. While the surgery would take about three hours in total he said his part of it would only take between eight and thirty minutes. We were told that once he was out of surgery we would be waiting to call it a success until he woke up and was able to cry and move his legs and feet. There is a vocal nerve that runs right where the surgery was being done and it is not uncommon for it to be damaged as it is only about the size of a hair. And paralysis was another risk associated with the surgery, due to the fact that his extremities would be getting basically no blood flow during the surgery.

Conor was taken back for surgery around three thirty and it was shortly before seven that the doctor came out to tell us that "it couldn't have gone more perfectly". It was such a relief to hear those words!

It was another half hour or so before he was settled in the Pediatric ICU and we were taken back to this sight:

So many wires coming out of our boy! They placed two arterial lines along with all his IV lines, one in his neck and one in his right wrist, and he was still intubated and asleep from the anesthesia. I was glad to see how completely relaxed his little face looked. Even when he was sleeping in the ER or NICU before his surgery his little face still looked quite distressed, furrowed brow, etc. It was nice to see that he was completely pain and discomfort free for a little while. His nurse told us that she always advised parents to go home for the first night, since it would be hours before he woke up and we weren't going to be able to hold him anyway. With babies as young as Conor we were told it wasn't unusual for them to even take a few days to wake up from the anesthesia, which was kind of a scary thought. She promised to call us when he woke up so we went home for the night to try to get some rest.

He ended up waking up at about one in the morning, and she did not call us after all, which was probably for the best because we were finally getting some sleep for the first time in what felt like days. The next morning we hurried back up to Baltimore and were so excited to see this awake boy. He was able to both cry and move his legs shortly after he woke up and was back to breathing on his own! He's pretty swollen in this picture from all the fluids they'd been pumping in to him. 

We tried spending the following night in his room but quickly learned why his first nurse had suggested we not. They kept his bright room lights on all night and the nurse came in every twenty minutes or so to monitor him and do whatever other nurse-ly stuff she had to do. I was pleased he was being monitored so closely and taken care of so well but it made any attempts at sleeping there pretty much impossible. 

Finally, finally on Friday we got to hold him again. We hadn't gotten to do that since Tuesday when we took him to the ER. He still had so much stuff attached to him, it seemed like it was actually a bit uncomfortable for him, so we both snuggled him as best we could for a few minutes and then put him back in his bed. He also finally started getting some breastmilk in to his tummy through a feeding tube. I had felt so badly for him not getting to eat for so long. The nurses kept reassuring us that he was getting his nutritional needs met through the fluids going in his IV, but I knew that those fluids weren't doing anything for his poor, hungry little tummy. 

Saturday we were excited to hear that he was ready to move out of the PICU and into a regular room for the rest of his stay! We had originally thought it would be closer to Monday before he got out of the PICU so it was fantastic news that he was ready to move so soon. 

Conor's Heart - part 3

Even with our stop at home we had to wait a good 15 minutes or so before we got to go back to the NICU to see our baby boy. This is what he looked like when we got there:

It was already about seven pm by the time he was all settled in his room. The nurse told us the game plan was basically to try to keep him stable throughout the night and watch and see what his heart and body were doing all night. Then in the morning they would start doing further tests to figure out what was going on with him. Marc and I were both pretty nervous at this point. I mostly felt anxious about the fact that it seemed like such a mystery. The fact that he'd had all these tests both when he was on the inside and out and there were still no answers made me really uncomfortable. His room in the NICU wasn't really set up for a parent to stay the whole night but they had a few rooms available attached to the waiting area that had a bed and a pull out couch so we were able to stay close to him overnight.

                                                

                                                

 I went back to his room around midnight to use the breast pump the hospital had provided. While I was in there the nurses came in to start yet another IV port in his poor little foot to try to draw some blood for more labs. They were not able to get the line placed and finally quit trying after digging around for what felt like an insanely long time. They switched to his other poor foot to try to just do a blood draw. They were having a really hard time getting enough blood out because of his restricted blood flow. It was coming out super slowly and looked thicker than usual. They ended up also having to do some heel sticks to get as much as they needed for all the labs. My poor boy, I felt so sad for him that he kept having to get stuck with needles. I went back to our room and told Marc he had to be the one to hold him down the next time they needed to do any more sticking.  

Neither of us were getting very much sleep in the parents room so around 5 that morning we gave up and just went back to wait with Conor in his room until the doctors came in. We spoke briefly with the cardiologist on call at about 7 am and were told that they were basically just waiting to get an echo-cardiogram done by one of their techs, on one of their machines, before they could make any decisions. A short time later a tech showed up with the echo machine and started working on getting pictures of Conor's heart. Conor was sleeping soundly at this point, which made it a whole lot easier for the tech to do her job and get some nice clear pictures of his little heart. We were sitting quietly in the corner, trying not to bother the tech while she worked, when all of a sudden his room was just swarming with people. He had three nurses and two doctors surrounding his bed, checking IV lines and the medications going in and what not. Luckily for Conor the tech had just happened to notice that his ductus was almost completely closed despite the medication he was getting to try to keep it open. They cranked up the dosage of that medication and warned us again that it could lead to him needing an emergency intubation in order to breathe, especially now that they were giving him such a high dosage. He was pretty annoyed after that and started squirming and crying again making it difficult for the tech to finish her echo. She was able to eventually get all the pictures the doctors wanted and even saw before she was done that the medication was doing its job and re-opening the ductus. Overall the echo took about an hour and a half.

Not long after that the cardiologist came in and informed us that they were able to clearly see that Conor had two problems with his heart. He has a bicuspid valve, which means that his aortic valve has two flaps instead of three where the blood leaves the heart to enter the aorta. Here's a good link about that issue. The doctor said the bicuspid valve wasn't a big deal right now, that it was the sort of thing that might need repairing when Conor is in his 40s or 50s, or it might never be an issue for him. He said there are plenty of 80-year-olds walking around with a bicuspid valve that have no idea because it has never caused them any trouble.He told us that valve replacement surgery is super advanced and amazing right now so by the time Conor might need something like that done 50 years from now it should be even more advanced and no big deal to get it fixed. 

The other problem with his heart was a coarctation of the aorta. Basically that meant that a section of his aorta was too narrow to get adequate blood flow to the rest of his body. This link has a good description of his defect. This one was a lot more serious and needed to be fixed right away. As in they wanted to do surgery that afternoon. 

It was such a relief to finally know what was wrong! The cardiologist did not think it was strange that the fetal echo hadn't shown the coarctation, he said it was pretty easy to miss in utero. After that initial diagnosis he left to consult with his colleagues about Conor's surgery and then they all came back to discuss with us what exactly was going to happen. We were relieved to hear that Conor would be able to have what is called closed-heart surgery, which meant they would go in from his side and he would not have to be put on a heart-lung machine to artificially pump his heart. It was a much less difficult and invasive surgery than open-heart surgery. Below is the graphic they showed us of where the incision would be.

They told us there was one other baby in line to have surgery before Conor and when she was done they would be ready to take him back. At about noon they told us to expect them to be ready for him in a couple of hours.