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.