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. 

Finnerhosen and Halloween

Marc's mom came up to visit after Conor was born and brought this cute lederhosen outfit with her. They bought it over forty years ago when Marc's brother was little and every boy in their family has had their picture taken in it since then. Finn's turn was up this year! All the way to the portrait studio he claimed he was very excited to have his picture taken and that he was going to do lots of smiling for the camera. He got a bit grumpy when it was actually time to take pictures but the photographer was still able to coax a few smiles out of him and get some good shots. We just think he is the cutest!

And of course I have to post about Halloween. Our three older kids had such a blast this year. Halloween is definitely a much anticipated holiday in these parts. Teresa has always been in to monsters and zombies and all things spooky and has helped her younger siblings cultivate a love for that stuff as well. Costco put their Halloween costumes out at the beginning of September so that is when Halloween talk started at our house. Even Finn was super into it, even if he didn't quite understand what there was to be so excited about. We've been reading our Halloween books and our zombie books and watching the Yo Gabba Gabba Halloween episode for the past two months. Not to mention the costume anticipation. I usually like to make the kids costumes if possible, but I told them this year they had to go store bought, my sewing machine isn't working right now, and with Conor arriving at the beginning of October, I knew trying to make costumes would just be too stressful for me. Nora knew straight away that she wanted to be Chase from Paw Patrol. Finn had a hard time choosing among Marshall from Paw Patrol, Scooby Doo (or Soupy Soupy as he calls him) and Sofia The First. Once he saw Nora's Chase costume though he got super excited to be Marshall. Teresa decided to be a witch of darkness, though I don't think she quite managed the darkness part! Poor Conor had no costume this year. I kept meaning to get him something cute to wear but it just didn't happen.

Before trick-or-treating:

Conor slept through the whole thing!

We had so much fun trick-or-treating in our neighborhood this year! Our neighbors are all so nice, it was fun getting to talk to more of them during  the evening. Though we did shock one neighbor with how many kids we have. He did a double take when he saw them all and said "wait, HOW many kids do you have?" as if four children was just too many for him to count. 

They got a pretty good haul of candy:

 This was before the church Halloween party. They didn't let me do their makeup on Halloween, but I thought they looked so cute with it done!

Conor's Heart - part 1

Conor has a congenital heart defect. Here's the first part of the story - it is too long and crazy for one blog post.

About halfway through my pregnancy with Conor I had a regular OB checkup where they found that his heart beat would randomly skip a beat every now and then. My doctor sent me off to have a fetal echocardiogram to see if they could figure out what was going on with him. Conor had pretty much zero interest in cooperating for the echo. He kept his back firmly turned to the sonographer and they weren't able to get a good enough picture to do the echo. They still looked at him as well as they could, though they couldn't get any great pictures of his heart. Towards the end he was dropping every fourth heart beat, but they said that as far as they could tell everything looked good structurally. The doctors put it down to him being extra sensitive to caffeine in my diet and said I just needed to avoid caffeinated drinks (fine) and chocolate (less fine). Fast forward a few months and everything was fine, I was having weekly checkups to monitor his heart rate, but as long as I was not eating any chocolate everything seemed normal. Then one day I went in and his heart rate was being super erratic. I got strapped up for a non-stress test and his heart rate was flying all over the place, from 102 to the 170's. Of course the doctors didn't like that so I headed back down to Columbia to try for another fetal echo. This time Conor was in a great position and they were able to get a good look at his heart and decided that everything looked how it was supposed to. By the time they were done with the echo his heart rate had normalized and they told us to just keep on keeping on with our weekly check ups. When I got home I remembered that Marc had been drinking a cream soda the night before and I had taken one sip of it. I fished the bottle out of recycling and saw that it had caffeine in it, so we put his crazy heart rate down to that accidental caffeine intake.

Like I said in his birth post, he ended up having more weird heart stuff going on when I thought I was in labor with him, so we decided we should get him out just to be safe. I had an anterior placenta with him, just like I had with Finn, so I already couldn't feel him moving very frequently and by the end of my pregnancy I was feeling quite a lot of anxiety that something bad was going to happen to him if he didn't come out soon.

While in the hospital we delivered in the nursery performed a simple test for CHD. He failed it, but they just kept trying again until they got him to pass it. Marc and I were both a bit uncomfortable with that, especially since he'd had all those other heart "episodes" in utero. Because he had a bit of jaundice the hospital wanted us to take him in for a check up within two days of getting home. We decided that we would ask our doctor about doing further investigations into his heart weirdness.

We took him in to see his regular pediatrician on the 7th, when he was four days old. I love our doctor and nurse, we've been seeing them since we moved here when T was about 16 months old. As soon as our nurse, Miss Karen, brought him back to start getting his weight and length she noticed that his color was off. He was quite upset with getting undressed and weighed and when he started screaming his mouth area was getting dusky and bluish. It is definitely not something I would have noticed, in fact I couldn't really see much of a difference when it was pointed out to me, but luckily for us Karen has over 30 years of nursing experience under her belt and knew what she was looking at. We got back in an exam room and she started a monitor for his pulse oxidation right away. This was the same test he had originally failed in the hospital. His numbers were all over the place. Sometimes they looked fine and other times they were terrible. She brought the doctor in and they both watched the monitor for a bit and then left. A few minutes later they came back and told us we needed to take him straight to the ER.