Everything with Ridge was going great. He was eating pretty well with the bottle but would get tired and sometimes not eat everything they wanted him to eat. Overall, this wasn't a big deal and they were happy with the progress he was making. On Thursday (the 30th), they did a swallow study where they had him drink fluids with different consistencies to see what was happening as he was swallowing. This is a common test they do because so many of the babies have eating issues. They aren't totally sure why heart babies have these issues but part of it could because they are intubated for so long after surgery that they can develop an aversion to having things go down their throat. Part of it could also be because they don't eat for so long, they forget how to swallow and have to relearn that skill. They often lose their coordination and have to figure it out again and strengthen their muscles as they get more practice eating. Another problem is that it takes up so much energy for babies to suck, swallow and breathe all at the same time that they just get too tired to do it.
They were anticipating that he would do well with the swallow study because he was doing pretty well when they would bottle feed him. Well, he threw us for a loop and they found that he was having silent aspirations. This meant that some liquid was getting into his airway and potentially had the risk of getting into his lungs. He wasn't showing any symptoms of this which is why they call it silent aspirations. Because of this, they said he couldn't drink straight breastmilk because the consistency was too thin. Instead, they would add rice cereal to the milk to make it thicker. The thickness would help prevent him from aspirating. The added thickness also made it more difficult to drink though so once they did this he wasn't drinking as much from the bottle because it would wear him out. The most they would let him drink was 20cc and then the rest would be given through the NG tube in his nose.
Friday, Tagg and I had to take a CPR class in the morning and then we spent some time with Ridge. While we were with Ridge, one of the cardiologists that works in the CHSU, Dr. Stromberg, came in and spoke to us about the possibility of putting in a feeding tube. He said that it is very common and most of the babies here end up going home with a G-tube because so many of them have feeding issues. I was so confused as to why he was suggesting this when the day before the nurses were telling me he was doing so well. He said that they hadn't done the swallow study to realize he was aspirating. He also thought by the time Ridge gained the coordination to eat without aspirating and to be able to eat a full feeding, it wasn't going to be an issue of days, but more like weeks or months. I started crying while he was talking to us and I think he could tell we were pretty shocked. He asked if him talking to us was the first time we had heard about the possibility of needing a feeding tube. We explained that the only time it was ever mentioned to us was when we took our tour of the hospital, NICU and CHSU before Ridge was born. The neonatologist mentioned that heart babies sometimes go home with feeding tubes and I was super nervous about it when she mentioned it. However, it was never mentioned by the cardiologist I saw through my pregnancy or the surgeon in any of our meetings. If it is such a common thing for babies with heart issues to need a feeding tube I really just wish it would've been mentioned by the doctors. I would've preferred knowing from the beginning that he would probably need one so I could've been prepared for it. In the off chance that he didn't need one then that would've been awesome but at least we would've been prepared. For some reason the feeding tube was harder for me to deal with than the heart defect. The tube seems more like a disability to me that affects everyday life, every time he eats where with the heart defect, he would still lead a very normal life. Just like anytime things don't go as planned, I needed some time to "mourn." It was just one more thing that wasn't normal and wasn't the way I wanted it to be. Over the weekend, we kept thinking about what we wanted to do as far as the tube went. I didn't really want to talk about it again with the doctors until the weekend was over. Part of me felt like Ridge hadn't really been given a chance yet to figure everything out and maybe if he had more time, things would work themselves out. He had started eating much better through the weekend and I was hopeful that after more practice, he would be able to better handle the thicker feeds.
On Monday, I wanted to be able to talk to the doctors and figure out the real reason they were suggesting a feeding tube. I didn't understand if it was medically necessary because he was in danger from aspirating or if it was just a matter of convenience because it was still going to take him some time to work up to a full feeding. Obviously if it was medically necessary, we would do it, no question. But if he just needed more time to figure it out, I didn't want to force the tube. After a weekend of fasting and prayer, I felt much more calm about the G-tube even though I was still very hopeful he wouldn't need it.
Monday afternoon they did an upper GI test. They always do this if they are considering putting in a feeding tube so they can make sure there are no surprises when they go in to do the surgery. Well, to everyone's surprise, they found out Ridge's intestines were malrotated. This would require surgery to fix. Usually there are symptoms of malrotated intestines like not tolerating feeds well and reflux, but Ridge had none of that. The doctors also recommended since he would already be going in for surgery, to get the G-tube put in at the same time. They also recommended having a Nissen procedure done where they wrap part of his stomach around the sphincter to help prevent reflux. I was still hesitant to do the G-tube but at the same time, it made a lot of sense to just do it. It would've been horrible to have him go through surgery just to fix the intestines and then try to feed him again and find that he was still aspirating and have to undergo another surgery to put in the feeding tube. The doctors said that from everything they had seen him do, they were fairly certain he would need the tube to go home. If that was true and we didn't get the tube put in during the surgery, this would really delay him getting home because he would have to undergo another surgery just for the G-tube and recover from that after already having the extra recovery time from the intestine surgery. If we did it all at the same time, he would be able to go home much sooner. In the end, Tagg and I decided it made the most sense to go ahead and have them do it all at once. We decided it would be better to have the feeding tube and end up not really needing it then not get it and find out he really did need it and would need another operation.
This was definitely a step back for how well he was doing, but I am glad they discovered the malrotation of the intestines now before it caused more damage. His surgery was scheduled for Wednesday morning but they stopped his feeds on Monday after they did the GI test. Ridge was not happy about that because he was used to getting a full feeding and having his tummy full. That was the hardest thing for me. He was pretty cranky and would cry a lot because he was just so hungry. They gave him the nutrients he needed through his PICC line but his tummy still felt empty which he wasn't okay with. Overall the upcoming surgery was nothing as risky as what he had already been through but those nervous and anxious feelings were creeping back in as we anticipated another surgery on Wednesday.
And here are just a few pictures we took through the week of Ridge when we'd go visit.
And this is my favorite picture we have of Ridge so far! Such a sweet smile.
They were anticipating that he would do well with the swallow study because he was doing pretty well when they would bottle feed him. Well, he threw us for a loop and they found that he was having silent aspirations. This meant that some liquid was getting into his airway and potentially had the risk of getting into his lungs. He wasn't showing any symptoms of this which is why they call it silent aspirations. Because of this, they said he couldn't drink straight breastmilk because the consistency was too thin. Instead, they would add rice cereal to the milk to make it thicker. The thickness would help prevent him from aspirating. The added thickness also made it more difficult to drink though so once they did this he wasn't drinking as much from the bottle because it would wear him out. The most they would let him drink was 20cc and then the rest would be given through the NG tube in his nose.
Friday, Tagg and I had to take a CPR class in the morning and then we spent some time with Ridge. While we were with Ridge, one of the cardiologists that works in the CHSU, Dr. Stromberg, came in and spoke to us about the possibility of putting in a feeding tube. He said that it is very common and most of the babies here end up going home with a G-tube because so many of them have feeding issues. I was so confused as to why he was suggesting this when the day before the nurses were telling me he was doing so well. He said that they hadn't done the swallow study to realize he was aspirating. He also thought by the time Ridge gained the coordination to eat without aspirating and to be able to eat a full feeding, it wasn't going to be an issue of days, but more like weeks or months. I started crying while he was talking to us and I think he could tell we were pretty shocked. He asked if him talking to us was the first time we had heard about the possibility of needing a feeding tube. We explained that the only time it was ever mentioned to us was when we took our tour of the hospital, NICU and CHSU before Ridge was born. The neonatologist mentioned that heart babies sometimes go home with feeding tubes and I was super nervous about it when she mentioned it. However, it was never mentioned by the cardiologist I saw through my pregnancy or the surgeon in any of our meetings. If it is such a common thing for babies with heart issues to need a feeding tube I really just wish it would've been mentioned by the doctors. I would've preferred knowing from the beginning that he would probably need one so I could've been prepared for it. In the off chance that he didn't need one then that would've been awesome but at least we would've been prepared. For some reason the feeding tube was harder for me to deal with than the heart defect. The tube seems more like a disability to me that affects everyday life, every time he eats where with the heart defect, he would still lead a very normal life. Just like anytime things don't go as planned, I needed some time to "mourn." It was just one more thing that wasn't normal and wasn't the way I wanted it to be. Over the weekend, we kept thinking about what we wanted to do as far as the tube went. I didn't really want to talk about it again with the doctors until the weekend was over. Part of me felt like Ridge hadn't really been given a chance yet to figure everything out and maybe if he had more time, things would work themselves out. He had started eating much better through the weekend and I was hopeful that after more practice, he would be able to better handle the thicker feeds.
On Monday, I wanted to be able to talk to the doctors and figure out the real reason they were suggesting a feeding tube. I didn't understand if it was medically necessary because he was in danger from aspirating or if it was just a matter of convenience because it was still going to take him some time to work up to a full feeding. Obviously if it was medically necessary, we would do it, no question. But if he just needed more time to figure it out, I didn't want to force the tube. After a weekend of fasting and prayer, I felt much more calm about the G-tube even though I was still very hopeful he wouldn't need it.
Monday afternoon they did an upper GI test. They always do this if they are considering putting in a feeding tube so they can make sure there are no surprises when they go in to do the surgery. Well, to everyone's surprise, they found out Ridge's intestines were malrotated. This would require surgery to fix. Usually there are symptoms of malrotated intestines like not tolerating feeds well and reflux, but Ridge had none of that. The doctors also recommended since he would already be going in for surgery, to get the G-tube put in at the same time. They also recommended having a Nissen procedure done where they wrap part of his stomach around the sphincter to help prevent reflux. I was still hesitant to do the G-tube but at the same time, it made a lot of sense to just do it. It would've been horrible to have him go through surgery just to fix the intestines and then try to feed him again and find that he was still aspirating and have to undergo another surgery to put in the feeding tube. The doctors said that from everything they had seen him do, they were fairly certain he would need the tube to go home. If that was true and we didn't get the tube put in during the surgery, this would really delay him getting home because he would have to undergo another surgery just for the G-tube and recover from that after already having the extra recovery time from the intestine surgery. If we did it all at the same time, he would be able to go home much sooner. In the end, Tagg and I decided it made the most sense to go ahead and have them do it all at once. We decided it would be better to have the feeding tube and end up not really needing it then not get it and find out he really did need it and would need another operation.
This was definitely a step back for how well he was doing, but I am glad they discovered the malrotation of the intestines now before it caused more damage. His surgery was scheduled for Wednesday morning but they stopped his feeds on Monday after they did the GI test. Ridge was not happy about that because he was used to getting a full feeding and having his tummy full. That was the hardest thing for me. He was pretty cranky and would cry a lot because he was just so hungry. They gave him the nutrients he needed through his PICC line but his tummy still felt empty which he wasn't okay with. Overall the upcoming surgery was nothing as risky as what he had already been through but those nervous and anxious feelings were creeping back in as we anticipated another surgery on Wednesday.
And here are just a few pictures we took through the week of Ridge when we'd go visit.
2 comments:
I'm so sorry about all these setbacks. I'm glad surgery went well though and hopefully he'll have a smooth recovery. I am just amazed when I think all this little man has been through. Sending extra hugs and prayers to that amazing little man!
Katie he is SUCH a beautiful newborn! He really is so handsome and I love his fluffy hair.
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