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. 

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.

Conor Davin Milligan

Conor Davin Milligan arrived on October 3, 2015 at 11:16 pm.

He is such a cute boy! We love him so much!

I started having contractions on his actual due date, and given that Finn's entire labor lasted four and a half hours I didn't want to waste any time getting to the hospital this time around. So, of course, by the time we got there my contractions had stopped and we were thinking that we would be sent home. However, the nurse decided to strap on a heart rate monitor before sending us off. She found that he had a really low base heart rate and some erratic beating and the doctor decided that it was in his best interests to just get him out already. I'm not usually a fan of  forcing babies out before they are ready, but given that he'd had an erratic heart rate and skipped heart beats through most of my pregnancy as well we agreed that it was time for him to be seen on the outside.

So we got all checked in and set up for induction. It was not enjoyable. I'd heard that pitocin induced contractions were way more painful than regular ones, but that was not my experience. I still think Finn's labor was way more painful than this one. It's just that this one took so. darn. long. Baby boy was not ready to vacate. It was almost a full 24 hours after we got there that he decided to join us. It was really discouraging being in labor with him, every time the doctor would come check I was just stuck at three cm for hours. I got my epidural relatively early on in the process so that the doctor could break my water to try to encourage him to move things along. It didn't work. What it did do was give my epidural plenty of time to stop working the way it should and start numbing my ribs and thighs instead of the actual painful parts. Shortly after we got there the doctors changed shifts and I was excited to have my favorite one on duty. She was the one who delivered Finn, too. At about hour 22 we asked her at what point we would have to re-evaluate our plan. I had been sitting at 3 cm for the past 18 hours and was getting pretty discouraged. She said that since I'd had three other successful deliveries she was going to let me hang out on the pitocin for at least another 24 hours before she even thought about a c-section. I appreciated that she wasn't going to push us in to an unnecessary c-section but the thought of another 24 hours on the pitocin was pretty horrifying as well. Induction was definitely the right choice for Conor, given his heart stuff, but I would never want to do it again unless absolutely necessary. 

Luckily only about an hour later Conor decided he was ready to make his entrance. Once he decided to come he didn't waste any time and two sets of three pushes later he was here.

It's been interesting having our past three babies at the same hospital and seeing how much they have changed since we had Nora. They put him on my chest immediately and let us just hold him there for as long as we wanted. They did all his suctioning and what not while we held him instead of pulling him over to the side and away from us. 

He is our tiniest baby yet, he only weighed in at 7 pounds 10 ounces and was 19 and 3/4 inches long. He is also our first baby that didn't come out sunny side up! I was pretty surprised because I had lots of awful back labor with him just like with the others so I assumed it was because he was facing the wrong direction. 

The girls had been anxiously awaiting his arrival for quite awhile, they were thrilled to finally get to meet him. Finn was so sweet, that is the longest he has ever been away from me, so when they got to the hospital he immediately climbed on my bed and gave me a ton of snuggles. Then he turned to Conor's little bed and said "I hold dis". They all loved him so much and Nora and Finn especially put up quite the fuss about letting anyone else have a turn at holding him. 

Poor Granny, her plane got in at 8 pm and we were headed to the hospital only a few hours later. 

We love him so much and feel so blessed to have him in our family.

Finn Turns Two

Our little Finn turned two this week! We love him so much! Let's take our usual stroll down memory lane, shall we?

Brand new boy. 

First birthday yumminess.

One year old Finners.

Literally the only picture I could find of 18-month-old Finn.

He is just the best. He is talking up a storm. He is such a cute, polite little guy right now, he says "Thank you!" for any little thing someone does for him. He is still working on getting all his teeth in, that has been a slow process for him! He loves, loves, loves trucks. He still excitedly points out any truck we see when we are out and about. He loves to zoom all his trucks around the floor, and you better watch out for your feet or he will run you right over. He loves to color. He will scribble all over a paper and then tell me "see, cats!" or "see, Daddy!" or whatever else he thinks he has drawn. He loves his sisters so much and has a cute and different relationship with each of them. He is very concerned when either of them is hurt or sad and will hurry over to hug and kiss them. We love him so much and are so lucky to have him in our family!

We tried to do a little two-year-old photo shoot but he was quite uncooperative. Marc still managed to get a few good ones. 

I thought maybe getting Pineapple the kitten in on the action would make him smile more, but little stinker just kept hiding his face in the chair. 

We had Stake Conference on his actual birthday, which wasn't awesome for a two-year-old. Luckily he knew he had a Paw Patrol cake waiting for him when we got home. All three of them have been so excited about this cake for weeks! It was pretty yummy, but the icing picture part was not delightful. It was a little too hard for actual eating but once we peeled it off they were good to go. 

The kids picked these party masks instead of hats. They turned out kind of creepy... 

Trains! He's always so excited to play with the trains at the library, and he was thrilled to get his own.

Loving his new Anna doll. He was happy to share his train set with his sisters but wouldn't let them near his Anna doll! And that Toot book! We got it from the library a few months ago and Finn just thought it was the funniest thing he has ever read. We renewed it as many times as we could and he was so bummed when we finally had to return it. He would ask me often "Toot? Liberry?", so of course we had to get him his very own copy for his birthday. 

Teresa had school off today for Rosh Hashanah, so Marc took the day off work so we could keep celebrating. We took the kids down to Baltimore for a pirate cruise. Nora was a bit nervous while we were waiting to leave, she needed us to clarify several times that they were not real, actual, mean pirates that we would be meeting. 

Tired boy. We were scheduled to go on the 9:30 cruise, but they didn't have enough patrons so asked if we could switch to 11:30. Of course that made it fall right in the middle of nap time. Finn still had a blast, but he had to take a few breaks in there. 

Cute little pirate boy

Overall I think he had a pretty great birthday!