Conor's Heart - part 2

The ER we took Conor to was in the same hospital in which he was born. They, blessedly, have a separate ER for pediatrics and we were able to walk straight back there after checking in at the front desk. Our doctor had called ahead to let them know we were coming and there was a doctor and two nurses standing outside one of the rooms waiting for us to get there. Looking back that should probably have been a pretty good sign of how serious this was about to get.

The doctor started an initial exam on Conor while the nurses prepared an IV for him. I think this was the worst part, for me, of this whole thing. We had to help them hold him down while they dug and dug in his tiny little veins trying to get the IV placed. It took four tries in four different places to get my IV in when I was in labor with him and the fresh memories from that, combined with his sad screaming, just broke my heart for him. He had seemed to be nursing well at home, but apparently wasn't doing as well as I thought because he was quite dehydrated as well, which of course made it even harder for them to get the IV line in. Once they got the IV in they strapped his little arm to a little padded board to keep his wrist straight. The tape looked so tight and uncomfortable, poor babe.

They started him on some fluids and then it was time for a chest x-ray to check for an enlarged heart. They were able to bring the machine to his room and the x-ray was almost as bad as getting the IV in. I had to hold him down with his limbs stretched out while he screamed and fought me the whole time. The good news was that his x-ray showed that his heart was a normal size. The bad news was that it also showed that he had broken his left clavicle during delivery, poor guy.

Next up he had an echo-cardiogram. This test did not show anything wrong with the structure of his heart. The ER doctor was quite perplexed as to what could be wrong with him. He had several symptoms to indicate that his aorta was too small but the ER doctor seemed to think that they should have been able to see that when he had his fetal echo in utero. He did tell us that his echo tech had pretty much zero experience looking at tiny little newborn hearts, so he wasn't going to put too much stock on the fact that she couldn't see anything. He told us he wanted to start Conor on some medication to keep his ductus arteriosus open. This is a blood vessel that connects the aorta and the pulmonary artery when a baby is in utero. The ductus diverts the blood away from the lungs and sends it straight to the rest of the body. Once a baby is born and starts using their lungs this duct is no longer needed and starts to close. Since Conor's heart was obviously not able to get enough blood to the rest of his body on its own the doctor wanted to try to keep this duct open so it could keep doing what his heart was not able to. It usually starts closing within 2 or 3 days after birth but the echo-cardiogram Conor had there in the ER showed that his was still partially open. He warned us that the medication could have some pretty scary side effects, mainly that it could cause Conor to not be able to breathe on his own and told us to prepare for the fact that he might have to be intubated. 

The doctor told us that at this point there was nothing else they could do for Conor. They just didn't have the equipment or specialists necessary for babies as young as him. The decision was made to send him up to Johns Hopkins in Baltimore, since they would have much more sophisticated echo machines and people who were used to working with tiny baby hearts. The ambulance crew arrived quickly and started prepping him for transfer. One of the things they had to do was place another IV line in his other little arm. The second line placement was just as horrible as the first, I couldn't believe how long it took to get it put in. This time one of the nurses thought to put some sugar water on a pacifier and that finally helped him calm down a bit. I felt so badly for him, at this point it had been about five hours since he had eaten and I knew his little tummy had to be feeling so hungry. 

The above picture is him all strapped up and wrapped in this little blanket contraption. At this point he was pretty calm, they had finally stopped poking and prodding him for a bit and he was able to relax for a few minutes. He is waiting to be moved into that plastic box behind his bed. We had originally been told that one of us could ride with him in the ambulance but when the crew arrived they said that we could not. They also told us that it would be at least an hour after he got there before we would be able to go back and see him. It made me sad to think of sending him off all by himself, but it was good that we would have time to stop by the house on the way to Johns Hopkins. Poor Finn had flipped out when we were leaving to take Conor to his doctor appointment earlier in the day. I had reassured him that we would be right back, even before his nap was over! I felt awful that that ended up being a lie. We stopped by home to pack up some supplies, say hi to the kids and put Finn to bed. Then we left for Johns Hopkins and the next leg of this crazy day.