Day Eleven

I got up early to go switch with Art and, like I had thought, the boys weren't awake when I left. Later I talked to my mom, though and things were going pretty well.
Esa had another breathing trial, but only a few minutes in, he was hyperventilating again. They did start feeding him more again, though and he started tolerating it better. He was at 16ml/hr, with a goal of 19/hr. They took off the sensor on his head that measures the oxygen in his brain. He looked so different when I first saw him, with the swelling and the sensor gone. At first I thought his hair line was receding! Haha. His look kept changing so much that it was hard to really know what he looked like. He had been swollen from everything at birth, then went down a bit, then got more swollen from surgery, and now was back down again.

They began lowering the doses of pain medication and sedatives and Esa started having withdrawals. His body would spasm randomly and he was super fussy, so they put him on methadone, so that it wouldn't be as hard on him. He had a really rough afternoon and I didn't leave his side for anything for about 3 hours. He would cry really hard for a few minutes, then calm down a bit for a few minutes and then start again. It was so sad not to be able to help very much. I wanted to be able to snuggle him and pat his back or rock him, but I just rubbed his forehead and talked to him to try to soothe him. Because he was so upset they kept getting a bunch of junk and blood out of his breathing tube. You could hear it in his breathing and it would make him mad, which would only make things worse.
When he finally calmed down they were able to do another spontaneous breathing trial and he did really well. I was so surprised that they were even trying with the afternoon he had had, but he did it! It was hard to watch because there were a few times where he was breathing super fast, where he wasn't breathing at all, or when he would get uncomfortable from something else. The plan was to do another breathing trial in the morning and if he did well, after monitoring him for a bit they would extubate him. I was pretty excited and so surprised. Especially with all of the times he hadn't done well with the trials.
Art came back after work to stay with Esa so the boys could have a few solid days with me and the night was pretty uneventful.

Day Ten

In the morning I found that our sweet nurse Judy had kept a hot pack on Esa's belly all night, put paste on his butt to help him feel better (his butt was just starting to get red), had brushed his gums well every few hours, and put chap stick on. Not only that, but she had made him a mobile. She said that he was awake and looking around and he just needed something to look at. She found a yarn ball, with black and white stripes, made some black and white patterns on index cards and hung them all up with ribbon. She was THE best. It made everything so much better to know that our child was being cared for, not just taken care of.

They had done a breathing trial to see if they could take out the ventilator, but Esa lasted less than 10 minutes. They don't take the ventilator out (it would be terrible to put it back in again), but they took down the support quite a bit. If he had passed he would have another breathing trial and if he still did well they would put him on a bi-pap or c-pap machine. Unfortunately, he was hyperventilating and not getting enough oxygen. The sedative that he was on could have been causing him to have some trouble breathing on his own, so they changed him to a different sedative to see if that would help.

He finally started to lose the fluid and was down to -36ml, which was so great! They had stopped giving him milk early that morning because his belly was so full of gas and he was so sad. By later that day, they started going up on his feeds again to see how he would do.

They took out his Umbilical Arterial Catheter (one of the smaller tubes going into his belly button) and they gave him a another diaretic (on top of the previous ones) to help keep up Esa's potassium so they wouldn't have to replace it as much. They stopped giving him Mellranome, which helps his heart to squeeze better. It was so exciting to see him doing so much better, but a little nerve wracking to see him taken off and put on so much stuff all at once. I swear that during the days that Art stayed with Esa he made so much progress. This was one of those days.
They did another breathing trial, but this time he only lasted 4-5 minutes. They weren't sure why, except that he had never had to breathe on his own. They planned to do another test the following day.
He had an IV in his hand, but it was leaking, so they took it out and his poor little hand was so black and blue, all the way up his fingers and down his wrist. I was pretty glad for that and hoped that was at least one things that would help him to be a little more comfortable.
By the end of the day his swelling had gone down to negative 80! They took out his pacer wires, too.
Art had the day off, so my sister came and got my mom, so they could visit and I took the boys to the zoo for a couple of hours. Jude kept saying, I will listen to you mommy and they both kept telling me that they loved me. It was so good to be with them and be able to go out and do something fun and active. Both of the boys listened so well and were so happy to be together. By the time we finished seeing everything we were all exhausted and somehow we ended up the furthest from the entrance that we could go. I got lost trying to get us out of the zoo because they were doing so much construction there. By the time we got out we were super hungry and tired.
We went back to the hospital and ate dinner, my sister brought my mom back and we went home. The boys fell asleep as soon as we got in the car and were hysterical when we got home and I was trying to get them ready for bed. Poor bubs were so tired from everything. I had to leave early in the morning to bring Art the car and switch with him, so that he could go to work. They slept right away and I snuggled with them for a little while because they probably wouldn't be up before I had to leave. Art was able to get a sleep room that night.

Day Nine

In the morning the doctors always have a plans and goals for Esa that the day (obviously with room for changes as he needs them). Today was mostly just a day to get him back on track. No one could explain his fluid retention and new staff kept coming in to evaluate and give their opinions, always arriving at the same conclusion; they had no idea. "He should be peeing out more, he should be going down in swelling." They did everything they could to help Esa have more fluid going out than coming in. He was still at positive 100ml. They were trying different diaretics, pain meds, and sedatives to try to help him to be comfortable, but he was still so swollen. His skin was all shiny and hard because of all the fluid underneath.

I would lay my hand on his head to comfort him and my hand would leave an imprint in the swelling. It was crazy. They wanted to give him a chance to get rid of some fluid before they started working on removing the ventilator (a process called extubating) or anything else. They were still increasing the amount of milk they gave him through his feeding tube every hour, though at some points he would get super gassy and sad, so they would hold the amount for a few hours before increasing it again.

Something that I've been neglecting to mention is the nurses. They are ALL amazing, which is pretty incredible because we've have had so many. They all try to be conversational with us, but more importantly they are all totally focused on helping Esa get better. When he got fussy or uncomfortable they were all over it. They were so aware of what was happening with him. Nicole was our nurse that day and she was so good with him, trying to help him to be comfortable despite his swelling, gas, and incisions, etc.

That night I was told I had Judy J. for our night nurse. Nicole said she was the Mary Poppins of nurses. It was totally true. She was probably in her late 60s and she had a bun in her bright red hair, held in place by three or four pens. She had little reading glasses and she brought a huge basket of candy that she put outside our door. She kept calling Esa her little puppy and fawning over him. She kept asking me if I needed anything and made suggestions, like ear plugs and extra pillows, etc. I hadn't been able to get a sleep room for that night and so I slept on the little couch beside Esa's bed. She gave me the ear plugs, talked super quietly to the other nurses and soothed Esa when he needed it, along with all of her other things nurses had to do. She was amazing.

Day Eight

I really wanted to get everyone ready and up in the morning to go visit Esa before Art needed to leave for work, but it just didn't work out and I had to leave and go up to switch with him by myself. There were so many things that I kept forgetting. I didn't take the trash out to be collected, I left laundry in the washing machine and I didn't remind my mom to turn on her phone, so I couldn't call her either.

Art and I seemed to just pass by each other and I missed him so much. With his work schedule and with the hospital being an hour away it was kind of a big deal to be able to get to see each other for longer than a few minutes here and there.

I felt like Esa looked the same, still super swollen, even though he had gone down a bit. They measured how much fluid he was retaining by measuring what he was being given (medicines and iv fluids and milk), measuring what he gave back (poop and pee) and calculating the difference. They wanted him to at least be coming out even, if not peeing and pooping out more than what he took in.  After I got there they measured him again and he had gone up. He was at positive 100, from negative 130. They gave him blood and meds to replace electrolytes that he was losing from all of the diaretics and they took out his last chest tube.

He was so much more peaceful, but then he was on a lot of oxycodone and fentanyl.  He wasn't peeing enough to get him in the negative, so they gave him a few different diaretics which made little change. All the doctors were puzzled. He wasn't making progress as quickly as they expected and would have liked, but he was still making progress. I felt a little better because he seemed to be more comfortable and not getting so frantic when he was upset.

He had a ton of gas in his belly, so they upped his feedings, thinking that would help, bringing him up to around 9ml/hour. He opened his eyes without being agitated for a long time. It was so nice to just be able to talk to him and be with him while he was awake.

I went to the cafeteria for lunch and the lunch lady made my day. Food is a big thing for me. By that I mean two things-I eat a lot and that I really like it. At the hospital cafeteria the food portions aren't terrible, but I would still leave hungry. But today's lunch lady gave me a burrito that she stuffed so full that she couldn't even close it. I could have kissed her. Except that might have been weird and I might have been asked to leave without getting to eat my burrito before they kicked me out.

Pumping was going really well and the lactation specialists are super sweet and supportive. Art went home after work to be able to be with the boys in the morning. I really wanted to call and see how they are doing, but my mom's phone was still off. I knew they were probably having a great time. I had a hard time leaving Esa, even when Art was here and even to do things like go to the bathroom, pump, or eat. I felt guilty when something was taking a long time and I wasn't with Esa. I noticed, however, that most of the babies were without parents for much of the time. I just don't know how I could leave my alone overnight. What if something happened? I would have to drive an hour just to get back to the hospital. I'm so grateful they had places for us to stay in the hospital. I was able to get a sleep room that night.

Day Seven

In the morning they took out Esa's neck line, which went straight to his heart so that all of the medicines he was getting would be the most effective. They were worried about it because they don't last for very long and those ones in particular are prone to blood clots. Since he was so swollen, they were especially worried about it. They checked for a blood clot after they took it out and found a small one, but blood could pass by it, so they said it would resolve on it's own. Talk about making me worry. When you hear blood clot, it typically is pretty scary, but they didn't seem to be very concerned. To replace that line they put a picc line in his right arm, which served the same purpose and still went right to his heart.

On the xray that morning they saw fluid in his lungs(another scary thing to hear), but they couldn't tell how much or if it was actually in his lungs or just in the area around the lungs. They did an ultrasound and found that there was fluid in his lungs, but the amount wasn't enough at that point to justify putting tubes back in. They said that because he was so swollen and wasn't getting rid of it as quickly as they wanted the fluid could start pooling in different areas of the body which is what happened with his lung. He was still really swollen and still having tremors, but the swelling was gradually going down.

We were planning on staying at the Ronald McDonald House ($15/night for families 30+ miles away) and had been on their list for 5 days and we were finally first in line. You have to call every morning around 9 to ask if they have a room available in order to get one. We really wanted to stay this night because my mom was flying in and so we could go get her and go back there instead of having to make the drive home at 10 in the evening. Because things had been so crazy that morning we didn't call until a bit later and we lost our place at Ronald McDonald. I was getting pretty worried about all of the gas money/food money we were needing to spend, so I was particularly sad. The social worker had told us in the beginning that there were hotels in the area who gave discounts on their rooms for the families of patients, so I went to go talk to them about what options there were. As soon as she showed me the list I started to cry because they started at around $60, which didn't seem like much of a discount to me. The poor woman wasn't sure what to do with me. She told me about the new Ronald McDonald Family room at the hospital that has sleep rooms(but they were full) and food for the families of the patients. I had also been told to ask about zoo tickets, so I did and she said they were able to give 2 per family. Art was going to come up to visit with the boys, so I thought maybe he could go with them when they came up. I called Art and he told the boys, who were super stoked.

Esa was really fussy all day, crying without making a sound due to the ventilator going to his lungs. He had tons of gas in his belly and the fluid build up was really bothering him. They gave him lots of pain meds and sedatives to try to keep him as comfortable as possible.
Art came up and we went back to the play room for a bit and then went down to eat dinner. We decided that they would go to the zoo after dinner so that they would be fed and so that they would be tuckered out for the ride home. We ate and then looked up directions to the zoo, but found out that they closed at 5. We were all so bummed. The boys were troopers, though. They were happy to go play in the play room again while I pumped and while we figured out what to do. We decided that Art would stay and that I would go get my mom. I was a little worried about going with both of the boys. We had talked about them staying at the hospital while I went to go get her, but it would make the trip longer and it would be hard for the boys to be there that late.

Somehow I was ignorant to the fact that the SLC airport now had two terminals, so when we got there we were waiting for her until someone asked which flight we were waiting for and informed us that we were in the wrong terminal. My mom had sprained her ankle on one leg and had broken her toe on the other. I had the two boys (Jude was in a stroller) and we were parked super far away. Hyrum is the best. We found her, got a wheelchair and Hyrum pushed Jude while I pushed my mom. We drove Home, I cleaned up a bit, pumped, and talked to Art. He said that the swelling had already gone down, so we were both pretty relieved. We were also relieved and grateful to have my mom there. It was pretty stressful to find someone new for the boys to be with every day and the boys needed some stability and a sense of normalcy.  I didn't ask for a sleep room because we weren't sure where we were going to be staying, so I felt so terrible that Art didn't get one. He slept beside Esa on a fold out couch of sorts, which he said wasn't so bad.

Day Six

I spent the day at home and got caught up on house stuff, laundry and dishes and just general things. One of my friends came over and cleaned up a bit after Esa was born, which was a life saver because we left in a hurry. I know that there was uncovered ravioli in the fridge that I tossed in on our way out, the table hadn't been washed or the floor swept, there were toys where the boys had been playing, everything was a huge mess. It was nice to come home to a relatively clean house after everything. I had a pretty normal day with boys, which was really nice. The boys came and snuggled with me in the morning, then we had breakfast and washed the dishes together. We went to library to return some things and get the boys some new books and shows. We left from the library to go up to the hospital to visit and so that I could switch with Art.

When I got there I was shocked at how badly Esa was swollen. His chest and belly had been swollen the day before, but today his poor face was soooo swollen. His ears were like little caves because his head had swollen right up around them. It was crazy. It also made it obvious that he was losing weight in the rest of his body. His legs and arms were so tiny. He was also still having the spasms in his chest, but he seemed to be resting more peacefully. He was on a lot of sedatives and pain medication. A couple of things that seemed to comfort him really well. Firstly we'd put a burp diaper on the top of his head, like a little tent. I think the weight of it and that it shaded him from light were comforting to him. Also I would put my hand on his head and rub his forehead and it would calm him down really well.

The biggest thing they were worried about that day was his swelling. They gave him a few different diaretics to help him pee and try to get him to lose all of the extra fluid.
While I was sitting with Esa there were two code blues (which means that a baby has turned blue), which was really nerve racking. I hadn't heard anything like that before, but they had two in that one day.

I can't remember now when they took out two of the tubes draining his chest, but they were gone by now.

That night I was able to get a sleep room but, there was a family in the waiting room outside crying because their baby had lost all brain activity and they were told to say goodbye. It was terrible. If you have ever experienced that loss or have been with someone else when they've had that kind of news, then you'll know what it sounded like. I felt terrible and was trying to think of something to do to help them, but I couldn't think of anything. I just laid in bed until sometime in the early a.m. when it quieted down and I was able to get a few hours of sleep.

Day Five

They closed his chest in the morning before I came in and he was pretty swollen. He was also having more spasms in his chest area, which they still weren't too concerned about. On top of that he got hiccups which he got pretty sad about. I can't imagine having hiccups after heart surgery. He was on quite a bit of pain medication and sedatives, so it could have been worse. Their goal for him for the whole day was just to rest and be comfortable, so there wasn't a lot happening today, except for his chest being closed. He was still awake a lot, but he seemed to be relatively comfortable and not so upset when he was awake.

The boys came with Art. Jude cried almost as soon as they came in, it was so sad. I wasn't sure if it was because of all of the mess of chords, bandages, tubes, etc,  if it was because I told him he was so silly (not meant negatively), if it was a combination, or just because he was so overwhelmed. I went out to the bathroom with him and sat in the shower(that is so gross now that I think about it) with him while we both cried and hugged each other. Both of the boys are such troopers through all of this. As soon as we felt better we went back, but he started crying again, so we got Hyrum and went to go get slushies and eat bananas in the nutrition room, a room in the PICU/CICU where there are snacks and drinks for patients and their families. It was so good to see the boys and really just be with them, we missed each other a lot.

We all decided to go up to this amazing play room on the third floor with every imaginable toy. Dolls and dinosaurs, books and cars, play kitchen and laundry room, etc, etc. I think the boys could play in there all day without getting bored. We had so much fun just being together and playing, without any immediate distractions. Another reason I am so grateful for the amazing hospital.

Kind of gross to have masks at a hospital but there were plenty of wipes and hand sanitizer around.

After we played we went back downstairs and got dinner in the cafeteria. The food isn't bad and there isn't a meal more than $5. Inexpensive, but it definitely ads up if you are eating there 3 times a day. It was a novel thing for the boys, they loved helping with the trays, napkins, and plastic ware dispensers.

Art had the next day off, so he suggested that I go home with the boys and he stay. I was kind of shocked, but knew immediately that that was what should happen. I also immediately got so sad. How could I leave Esa? The boys needed me, though and Art wouldn't have many chances to stay and visit with Esa, so we decided I would go. I was a crying mess, but the boys couldn't tell because I was facing forward in the car. It was absolutely the right thing to do, the boys were so happy and we were able to talk about our time away from each other on the way home. They both fell asleep long before we hit Provo, so I just put them in bed, pumped, and went to bed.

Day Four

This is the day we got to see his eyes open for the first time. We were so happy. One of the hardest things is the inability to comfort him and I have wondered about whether or not he knew we were there with him, which I want for him so much. At least when he opened his eyes he could see us. It was a relief and a really happy moment just to be able to see him and have him see us.

They wanted to just be able to let Esa rest and start to heal and recover from surgery. When we first came in in the morning we thought he had the hiccups, but he ended up having them all day long. Every time I would come back from pumping or eating I would hope they would be gone, but he continued to have spasms in his chest and belly every 10-30 seconds. They had several doctors and nurses come in to look, but no one could figure out what was going on or why he was having them, just that they weren't hiccups. One doctor thought that it might be because his chest was still open and that it might be bothering him. Another thought that he might be trying to breathe against the ventilator. Everyone said it wasn't something to worry about because he seemed to tolerate them well and everything else looked good. By the end of the day, however, they were definitely bothering him so they were talking about putting him on a sedative. He was basically awake the whole day and by the end of it he was really agitated, moving a lot and crying (so sad to see a baby cry without making any noise) every time he would have a spasm.
Art went home that night to be with the boys, who had been staying with our good friends for the day. The boys were exhausted from being moved around and not having any real schedule, so we felt like Art should be with them and hopefully help have a little normalcy back in their lives.
Just after he left they gave Esa the sedative. I felt bummed that they had to, but after they did he was so much more comfortable.

I stayed up way too late just sitting with him, but I was able to stay in a sleep room again and get some sleep.

Day Three

Surgery Day. I came over around 6:45, so that I could see Esa before his surgery, which they anticipated to be around 8. They let us hold him again, which was really, really wonderful.
There were a few doctors, including Esa's cardiologist, Dr. Su, whom we've grown to trust a lot, who wanted to let him have a little more time to get stronger before he had the surgery, so it was postponed for about two hours while they discussed what they wanted to do. That gave us more time to be with Esa beforehand and we were pretty grateful that they were all talking things over to really find the best plan for Esa.

In the end they all decided it would be the best for Esa to do the surgery then, with everything that he had going on and because it was during the day on a weekday when all of the surgeons, doctors, and nurses were there and at the top of their performance. If they waited they were afraid he could need an emergency surgery during the middle of the night or on the weekend, or worse, both, when only a skeleton crew is at the hospital.

Once again I was grateful to know beforehand about the TGA. When the surgeons and anesthesiologist came to talk to us, it was pretty emotional. Dr. Eckhauser was the surgeon and he sat down with us and explained every detail of the surgery to us including the risks, drawing us diagrams and answering all of our questions. He was so informative, but not in a heartless way. The anesthesiologist was really great, too. They gave us about 20 minutes to be alone with Esa and we just cried and held each other and his hand and foot and touched his head. Art gave him another blessing of comfort and we headed over to OR.

The rest of the day we just waited. I was supposed to be discharged that afternoon, but they let me stay until he was out of surgery, which was really nice, especially because that still meant I had meals and a place to rest. I was able to take a shower(for the first time since Tuesday-yikes) and our good friend Meg stopped by with food for Art. It was really good to see a familiar face. Also, Hyrum and Jude came to visit with my sister. Jude just sat and snuggled me for the short time we were there and Hyrum was snuggling Art. It broke my heart. It's really hard to be away from them, no matter where they are or how much fun they are having, but especially when the whole stay in the hospital happened so abruptly.

When we were waiting in the ICU waiting room to hear how things went with Esa there was a mom there with a brand new baby crying and my heart ached to be able to hear Esa cry and to be able to hold him and comfort him. I also remember thinking that we are so lucky. There are so many children with cancer and other physical, mental and heart problems that will last their whole lives long. Hopefully this is something we won't have to think about, except at his yearly check ups. We really are so very blessed to be in such a great hospital with a heart problem we knew about before he was born and that hopefully won't affect Esa very much after this first hard part is over.

During our wait we would get updates every hour and a half from one of the nurses in the OR telling us how things were going. During one of the updates we got a call saying they had finished everything but noticed something that they needed to fix so they were going back in to fix it. After the surgery Dr. Eckhauser was, once again, awesome at explaining everything and answering all of our questions. He took special care to explain why they had to go back in and fix something in Esa. Esa went on a bi-pass machine to allow blood to be pumped through his body while they worked on his heart. Everything went as planned. After they finish, they took him off the bi-pass machine and did everything except close his chest. Then they did an echocardiogram to check to make sure the hearts plumbing wasn't leaking anywhere, that Esa wasn't bleeding too much, and that the surgery looked good. When they did the scan they saw that his left pulmonary artery looked like it might have been kinked and his oxygen levels were lower than they should have been. During the initial operation, Dr. Eckhauser had noticed that his left pulmonary artery was abnormally short and he debated over whether he should do anything about it. Dr. Eckhauser and his colleague discussed it and decided it needed to be augmented. To augment his artery they detached part of it and patched it with some of his own tissue, making it a little longer and wider. After they did this his oxygen levels immediately went up. To do the second procedure, Esa had to be put back on the bi-pass machine.  The body doesn't like the plastic in the bi-pass machine, so the blood tries to clot around it. As a result they have to give blood thinners and because he had to go on it twice, they had to give him twice as much. Because of all the blood thinners, Esa was bleeding a lot, making it necessary to keep his chest open for a few days until the bleeding would go down.

It was pretty shocking to see little Esa with even more tubes and wires coming out of him. There were three big tubes draining his chest and lungs and one draining his bladder. He had 12 to 15 (they would periodically add more or take him off other ones) other smaller tubes with different medicines, two IVs, his ventilator, Oxygen monitors on the front of his head and on his hand and foot, lots of wires, a direct line to his heart in his neck and umbilical chord, and more that I'm probably forgetting. He also had a big bandage over his chest. But, honestly, he looked better than he had since he was born. His color was good, the swelling had actually gone down in his face(but increased in his neck and chest), and he was pretty calm because of all of the medication he was on. We stayed with him for most of the evening, but he was pretty sedated, so we just held his feet, hands, and head. We were so grateful that the surgery was successful and that the biggest part of everything they would be doing was over. He still would have weeks of recovery and getting him to breathe and eat and making sure everything looked good, but the hardest part, the biggest part, was over.

It was super late when we decided that we should probably go to bed. They have "sleep rooms" for the Pediatric ICU and Cardiac ICU, which are basically a small room with a twin bed and sometimes a night stand.  You have to get your name on a list, but we were able to get one for that night, which was great because there are only 6 rooms. They consider the condition that the child is in, the distance from your home, and then it's first come first served. Art stayed with Esa, sleeping on a love seat that converts into a bed, while I went to go get some sleep. I had to get up during the night to pump, so I came and visited Esa a couple of times and then Art came and slept for a couple of hours while they did the change of shifts which takes place two time daily between 7-8 am and pm for the new nurses to get caught up on the situations in the ICU.

Day Two

The second morning Esa had been breathing really fast for a long time, even with the ventilator, so they decided to try to take him off of it, to see if it would help. They tried, but as soon as they took him off he stopped breathing completely, so they put him back on. One thing that was kind of hard was that I wasn't able to be over there very much. Between pumping, eating, getting checked and trying to get some sleep I wasn't over there anywhere near as often as I wanted to be, but fortunately Art was. The whole day Esa kept up the super high breathing rate, with the nurses and doctors trying everything they could think of to help him come out of it. Our poor day nurse, Heather, was anxious with all the rapid breathing that she had to leave at one point with her eyes full of tears. Normal infants breathe at a rate of around 40, but he was around 70-90 for the entire day. Sometime in the early evening he went all the way up to a rate of 147, so they decided to give him a paralytic to make it so all the muscles in his body, with the exception of his heart, were completely relaxed. This allowed the ventilator to do all the breathing for him. He was also having a few other issues. Because of the TGA he still wasn't getting an adequate supply of oxygenated blood to his body, so his body compensated by making his blood gases low, which they think contributed to the rapid breathing. It was his bodies way of trying to get rid of CO2.  They gave him bicarbonate to try to help that, but his breathing still wasn't slowing. At one point they thought to try removing the respirator because the panting may have been the result of him trying to work against the machine. However, removing the respirator only made him stop breathing all together. On top of it all he also was having some arrhythmia with his heart that they were concerned about.

That night Art went and got the boys so that they could come visit for a little bit and to see Esa. Here is another reason I couldn't be more grateful for PC's. They have rooms where the kids can just play with toys, they have snacks, in the Cardiac ICU they have a slushy machine, they have outside areas with picnic tables, etc. In every way possible, there is an effort to make the environment as warm as possible. They have "the child first always" plastered everywhere and they live by that. For fun, we took the boys in my wheelchair to see statues, of Superman and Spiderman, on the third floor. They were super excited and it helped them deal a little bit with everything that was going on.

We are so grateful we knew beforehand about everything because we were able to prep the boys a little bit for what they would see. Despite me showing them pictures online of another baby with TGA, they were still a little apprehensive, but I think a lot better than they might have been. Plus he's brand new to them anyway. They kept saying how cute he was and that they loved Esa Onni. We only stayed in there for about 20 minutes before they headed back to my sisters house, but I am so grateful that they came to visit because that was the night that they decided at 1 in the morning that he needed to have the surgery to repair the TGA the next morning.

Originally, Esa's open heart surgery was originally planned for Monday or Tuesday but it was moved up to Friday. Nothing was improving, and so they just wanted to get the surgery done to take care of a lot of Esa's issues all at once. I had just gone back to my room at 12:30, when Art called me and told me the news saying I should come back in order to hold him before they took him off to surgery in the morning.

We both got to hold him, which basically means they pad you with a ton of pillows and lay him in his little bed (they call it a nest) on top of those, I was surprised they let us hold him  because of all of the wires and tubes he had, but we were so grateful just to have him a little closer. I wanted so badly to just hold him close and sing or rock or somehow comfort him. Instead we held his hand and touched his head and held each other. I stayed until I started feeling sick and had to go pump and lay down. Art was still holding him when I left.

Day one part two

I knew I was forgetting something that happened that first night. My brain is ready to explode and the days have kinda run together.

That first night Art ran home to get some things for us and for the boys because we didn't grab anything when we went out the door for my appointment. He brought everything to my sisters and visited with the boys for a little bit. When he came back to the hospital I was in my room, getting ready to pump and get some sleep. My brother in law had come with him, so that they could give him a healing blessing (I am a member of the Church of Jesus Christ of Latter-day Saints). The hospital staff was actually really kind accommodating asking us if we needed them to find an Elder at the hospital, too. They were pretty wonderful.

Day One

This blog has a billion purposes, but the main ones are to keep friends and family up to date and to help other families with special heart kiddos try to get a better view of how things happen(although every heart journey is different!). We found out at around 21weeks that Esa had Transposition of the great arteries. Basically his arteries are parallel, but should be crossed. While he was in utero he didn't need to use his lungs, so he was ok, but at birth his blood wouldn't be going to the right places, so his lungs would be getting lots of oxygenated blood and the rest of his body would not be getting sufficient oxygen. We knew he would need surgery at around 1 week to correct this and maybe a small surgery when he was born to put a hole between the chambers of his heart allowing his blood to mix a little before the major surgery. He also had Supraventricular  tachycardia (SVT), a super high heart rate, which I took heart medicine for to keep under control. No one was sure how that would effect him after he was born as they hadn't had any babies with both problems.

I'll start with the day I went into labor with Esa. I was heading out the door for an appointment in Salt Lake City (an hour from my house), but had been having contractions for a couple of hours and they were getting so I wasn't sure I should drive. I was only 37 weeks and 1 day, but I wasn't too worried because since week 34 I had been having contractions on and off, including one visit to the hospital where they gave me some meds to help stop the contractions at home. I couldn't find my keys, so I went to talk to Art, who had the day off and was watching the boys while I went to my appointment. He suggested we just all go, so he could drive me. So we headed off and I took some medicine to get rid of the contractions. They didn't stop and we ended up going to get checked to see if I was in labor instead of going to my appointment. Jude, who is almost 3 years old, was skipping his nap so we could go, so he was super tired and confused as to what was going on and so was Hyrum, 5. We called my sister, whose lives a half hour away, to come and get the kids while we figured everything out.

This could take a really long time to explain, but basically I had contractions for over 25 hours. They me under observation without admitting me saying that I was making super slow progress and since I was 37 weeks they wouldn't stop the contractions but at the same time wouldn't help me progress with the contractions either. We basically had a long date(dinner, dollar movie), coming back to check in every couple of hours until I was 5 cm dilated, at which time they finally admitted me. It was about 2 in the morning, 13 hours since the contractions has started. I had made really slow progress and had been planning on no epidural or pain meds, but was soo exhausted at that point that we decided to go ahead and get one. That way I could sleep and be awake and aware when Esa was born in order to at least see him, in case they needed to take him right away, which ended up being the case.

Labor took me forever, they finally broke my water, gave me pitocin and a few hours later, they rushed me into the OR so that they could pass him right to the NICU, through a little window (like a drivethru window) and get him ready to go to Primary Children's, right next door. We weren't able to really see him or anything after he was born, they just handed him off to the NICU team, but Art was able to take a picture as they were passing him. Esa was pretty blue when he was born which was to be expected.

They told us it would be about 30-45 minutes and they would update us on how he was doing, but it ended up being about 2 hours, so we were pretty nervous. They came in to let us know that they had to put him on a ventilator because he wasn't breathing on his own and that they were trying to get him stable enough to get him over to PCs. We were so scared and nervous, but we just kept telling each other that he was in the best hands possible. About an hour later they rushed us out of my room so that we could see him pass by on this big cart with lots of emergency equipment and his little warmer box in the middle. It was so hard, but again, we knew he was in the best hands.

We didn't hear anything for a long time, finally hearing that he had emergency surgery(which we knew was a possibility) to open up a hole in his heart that would help the blood to mix a little bit. He was pinking up and doing a lot better, still on a ventilator. They did an EKG and a bunch of other tests on him and he seemed to be doing pretty well other than that.

We got to see him for the first time around 6:30 in the evening for a few minutes before they changed nurses. Things were pretty hectic and they were still rushing around getting things in place and getting all of his tubes and wires organized, and getting him settled in. Art took me back to my room, we ate and then Art came back to sleep beside Esa while I stayed in my room to pump, sleep, and so that they could keep checking on me.

As a note for those moms who are in this same situation: The staff is amazing, both at the U of U and at PC's. If you need something or want something, just ask! Everyone is more than willing to help. There are lactation specialists who are so helpful and kind and they have pumps and all of the equipment you need right there. They also were super nice about getting Art food. He wouldn't have eaten if they didn't ask, or if I hadn't asked them.