Sunday, April 3, 2016
Day Seventeen
lots of stuff going on. hurry, take picc out. art comes, waiting room play kitchen, coloring books, eat, go home, get moved to floor. big room, not a lot of supervision, sleep, shower in room. I remember being so terrified that I had more responsibilities when he was still so fragile and hooked up to so many things.
Day Sixteen
This morning they put Esa on a regular nasal canula, or in other words, oxygen. We were really excited that he was finally getting to that point because that meant that he would be able to go up to the floor soon, within 24 hours. However Esa's heart started with SVT again, where his heart rate would go from the 130s to 180s+ and back really quickly. He was obviously uncomfortable as well. They put him on some heart medicine through his pick line, which they had been meaning to take out that morning. The pick line was one of the things that he needed to be able to get rid of before he would be able to go to the floor, so this made it so Esa would need to stay at least 24 hours more, maybe even a few days. We were pretty bummed because we thought he was in the clear from the arrhythmia problems, but apparently the heart medicine they gave to him after his surgery can stay in his body for up to a month depending on the amount he was given, so this was just showing up now because the other medicine was wearing off. They said he still might grow out of it in as little as a few months or a couple of years. We are hoping, but obviously we can't know until we get there. It's a bummer that he'll have different doctors then, because we are moving, but at least we'll be near John Hopkins and a few hours drive from Boston's Primary Children's.
Once they put him on the medicine his heart rate calmed right down. We spent the day snuggling, taking breaks for me to eat and pump. They offered to let me give him his bath and he yelled at me the whole time. He sure does look handsome when he is clean, though. It has actually been really wonderful to hear all of the little and big noises he makes. Sometimes it gets a little scary if he gets too upset, but I think it was way worse when I couldn't hear him and he was super upset. I think his grunts are the best.
They usually start working with the babies to get them to learn how to eat, but since Esa was throwing up and then had his heart arrhythmia come back, they are delaying it a bit longer. He has been taking his pacifier sometimes, though, so that gives me some hope. Dr. Su talked to me about it and said to really try to get him to take the pacifier and that that would help him to get used to it. He also said that sometimes with heart babies, where they've never had to eat before(some of them do a bit before they have surgery), it can be a bit frustrating and a bit of a process for them to learn to eat. They have a speech therapist work with them, though, so I am really hoping that that will help him out and we can get him on track.
Every Thursday in the CICU and PICU they have "parent hour" which is usually just a lunch for parents to get together and talk, but that day they gave a little presentation about things that we could do for siblings to help them to adjust. They made us coloring books for each of the boys with pictures of Esa and me holding Esa along with pictures of things in the hospital. They also told us about classes that they can do with the siblings with these little stuffed dolls to show all of the different monitors, etc that Esa has to help them to understand, so they would come and do that with the boys a few days later.
The plan for the night was just to watch his heart rhythm and his breathing levels, so it was a pretty quiet night.
I was able to get a sleep room and the lactation specialist came by that afternoon to tell me that I should start going 6-8 hours without pumping at night because my volume is high enough, so I was pretty excited about the extra sleep I would be getting.
Once they put him on the medicine his heart rate calmed right down. We spent the day snuggling, taking breaks for me to eat and pump. They offered to let me give him his bath and he yelled at me the whole time. He sure does look handsome when he is clean, though. It has actually been really wonderful to hear all of the little and big noises he makes. Sometimes it gets a little scary if he gets too upset, but I think it was way worse when I couldn't hear him and he was super upset. I think his grunts are the best.
They usually start working with the babies to get them to learn how to eat, but since Esa was throwing up and then had his heart arrhythmia come back, they are delaying it a bit longer. He has been taking his pacifier sometimes, though, so that gives me some hope. Dr. Su talked to me about it and said to really try to get him to take the pacifier and that that would help him to get used to it. He also said that sometimes with heart babies, where they've never had to eat before(some of them do a bit before they have surgery), it can be a bit frustrating and a bit of a process for them to learn to eat. They have a speech therapist work with them, though, so I am really hoping that that will help him out and we can get him on track.
Every Thursday in the CICU and PICU they have "parent hour" which is usually just a lunch for parents to get together and talk, but that day they gave a little presentation about things that we could do for siblings to help them to adjust. They made us coloring books for each of the boys with pictures of Esa and me holding Esa along with pictures of things in the hospital. They also told us about classes that they can do with the siblings with these little stuffed dolls to show all of the different monitors, etc that Esa has to help them to understand, so they would come and do that with the boys a few days later.
The plan for the night was just to watch his heart rhythm and his breathing levels, so it was a pretty quiet night.
I was able to get a sleep room and the lactation specialist came by that afternoon to tell me that I should start going 6-8 hours without pumping at night because my volume is high enough, so I was pretty excited about the extra sleep I would be getting.
Day Fifteen
I'm just now posting the few notes I tried to make every day during Esa's stay at the hospital, so they are a little disjointed, but I'm just going to leave them as they are. It's a reminder of how crazy busy it was.
Day Ffiteen:
Esa throwing up a lot, air going into his belly, got to give him meds. doing really well. Taking longer to get off c-pap because of high breathing rates. give him vit d. Sleep room nap, laundry. pump rooms full. Hold Esa all day. Hyrum sick at home.
Day Ffiteen:
Day Fourteen
Esa continues to progress towards coming off of the c-pap machine. He went down in peeps, but then was throwing up because of all of the air going into his stomach, so they put him on high flow c-pap and he is doing much better. He is peaceful and sleepy. He wakes up for short periods of time, finally like a normal baby, and is calm and peaceful when he is awake. It's so nice that he doesn't have a lot of wires and tubes. It is calming to see him in a closer to natural and normal state. I got to hold him for the second time and cried. Met a woman in the family room who's son had surgery on his back, so lucky to live here. Esa is doing so well. They are taking him down on the c-pap machine and hope to be able to get him off of it and on to oxygen alone in the next couple of days. After that, if he is stable we can go to "the floor". We could be up there by the end of the week! Nurses so nice, they keep coming by to see him and how he is doing. He got a bath and his hair is so awesome and it was so amazing to really be able to snuggle him without the hat, etc, etc. He got hiccups, but they didn't seem to bother him as much. Lots of stuff going on in the CICU, grateful to have a relatively healthy kid. They call heart patients clean patients, which is why they have their own CICU. Got a room to stay for the night
.
Day Thirteen
Esa continues to recover in the CICU. He's been here longer than expected but with his poor breathing before and after surgery it's not a surprise to anyone. Apparently the night before, Esa threw up, probably while being suctioned and was pretty irritable before of withdrawals from the sedatives he had been taking for so long. Today, however he was very calm and comfortable all day, even when the nurses were bugging him. Today he went from a peep of 10 to a peep of 6 in a fairly quick amount of time but they raised him back up to a peep of 7 just because he seemed to be working a little harder than they would have liked. A peep is a measurement of pressure they put into the lungs to help the baby inflate his chest. They didn't want Esa working too hard because if he got exhausted he could risk having a lung collapse. Otherwise Esa continues to finish up with most of his meds and is looking amazing better than he has. No more swelling which is especially nice.
Day Twelve
Esa passed another breathing test in the morning!! Again, it wasn't ideal, but it was a pass so the doctors decided to extubate (take out his breathing tube).
Art was able to go to a sacrament meeting from 10:30 to 11 that they held at the hospital. They made the meeting shorter in order to meet the needs of the parents and patients, which was really nice. He saw that the general primary president for the LDS church Rosemary M. Wixom was at the sacrament meeting, which was an obvious place for her to be, I thought. The parents and the kids can use every bit of support and love that they can get. I know the hospital also holds services for other faiths as well, which is so awesome, I thought.
When he got back they had extubated and Esa was fitted with a CPAP (a tube gives a constant flow of pressure through the nose to help add pressure to the lungs). Esa could finally make noise when he cried, something that a lot of babies can't do for a couple days after being extubated. Esa was going through a tough transition because he was working harder to breath and was getting less sedative (in order to be more in control of his breathing), so he was struggling still with withdrawals. He would begin to desat(basically not getting enough oxygen, breathing too fast, hight heart rate, etc) a couple times when he got really upset. I think the cpap machine was actually less comfortable than the ventilator. His nose was all scrunched up and they held the machine on his face with velcro attached to this hat that they put as tight as they could on his head. It was progress, though, so we couldn't complain! Esa was pretty uncomfortable, though.
Art got to hold him a lot that morning. Actually hold him, with no mountain of pillows, just his little blanket. Best Father's day gift ever. I came and got to hold him, too, in the afternoon for a few minutes, it was so wonderful. We couldn't move once he was in our arms, though, because the machine kept coming apart every time he moved his head or wiggled, but it was one step closer to getting to really snuggle.
I had decided to take the boys to church that day to give them something normal and fun that they loved in their routine. I was hesitant to do that because I didn't want them to get sick from all of the kids that they would be coming into contact with. I figured that if I was going to take them at all during Esa's stay in the hospital now would be a good time because if they did get something they would most likely be over it before Esa came home. We didn't stay for very long at the hospital. We came up in time for dinner and with time to play a bit in the play room. The boys were so tired that they got a little crazy, but they were still listening pretty well. Art stayed(and got a sleep room) and I went home again with the boys and my mom because he had Monday off.
Art was able to go to a sacrament meeting from 10:30 to 11 that they held at the hospital. They made the meeting shorter in order to meet the needs of the parents and patients, which was really nice. He saw that the general primary president for the LDS church Rosemary M. Wixom was at the sacrament meeting, which was an obvious place for her to be, I thought. The parents and the kids can use every bit of support and love that they can get. I know the hospital also holds services for other faiths as well, which is so awesome, I thought.
When he got back they had extubated and Esa was fitted with a CPAP (a tube gives a constant flow of pressure through the nose to help add pressure to the lungs). Esa could finally make noise when he cried, something that a lot of babies can't do for a couple days after being extubated. Esa was going through a tough transition because he was working harder to breath and was getting less sedative (in order to be more in control of his breathing), so he was struggling still with withdrawals. He would begin to desat(basically not getting enough oxygen, breathing too fast, hight heart rate, etc) a couple times when he got really upset. I think the cpap machine was actually less comfortable than the ventilator. His nose was all scrunched up and they held the machine on his face with velcro attached to this hat that they put as tight as they could on his head. It was progress, though, so we couldn't complain! Esa was pretty uncomfortable, though.
Art got to hold him a lot that morning. Actually hold him, with no mountain of pillows, just his little blanket. Best Father's day gift ever. I came and got to hold him, too, in the afternoon for a few minutes, it was so wonderful. We couldn't move once he was in our arms, though, because the machine kept coming apart every time he moved his head or wiggled, but it was one step closer to getting to really snuggle.
I had decided to take the boys to church that day to give them something normal and fun that they loved in their routine. I was hesitant to do that because I didn't want them to get sick from all of the kids that they would be coming into contact with. I figured that if I was going to take them at all during Esa's stay in the hospital now would be a good time because if they did get something they would most likely be over it before Esa came home. We didn't stay for very long at the hospital. We came up in time for dinner and with time to play a bit in the play room. The boys were so tired that they got a little crazy, but they were still listening pretty well. Art stayed(and got a sleep room) and I went home again with the boys and my mom because he had Monday off.
Saturday, June 22, 2013
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.
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.
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