Well, after much discussion, we did it. We put the baby through an upper GI barium study to try to figure out why his reflux isn't getting better. While the lactulose did do a good job of unconstipating the baby, which also did help his spitting up, he is still having several spitting up episodes a day and sometimes it's so bad he can't breathe for a minute. The Zantac doesn't seem to be helping much.
This is how and upper GI barium study goes:
Don't feed the baby for 4 hours prior to the test. Then he gets dressed in a little hospital gown and is strapped to a backboard with his legs down and his arms up over his head like superman. He's strapped down good and tight because this board is designed to roll... Barium is injected through his g-tube (because we all know he doesn't take much orally) and they proceed to take digital xrays while rolling him onto his side, back on his back, and once almost completely onto his tummy. I think this kid is going to have a deep-seated fear of roller coasters after this.
We heard back from the doctor yesterday. His GI tract and stomach appear normal, so while it's good to hear he's normal, it still doesn't explain barfy baby boy. We have also upgraded his reflux drug to Prilosec. He'll start today, and it takes 3-5 days for full effect. I just want to be able to feed him in a reasonable time frame and be able to do things like put him in his car seat 10 minutes later without a traumatic barf. Putting him on the pump helps, so we are continuing to do that as well.
This is what Gabriel has to say about it all:
Wednesday, March 20, 2013
Sunday, March 10, 2013
High Risk Infant Clinic
Since Gabriel was born so early, he is eligible for Swedish Hospital's high risk infant clinic run by two of the neonatologists. They check in with you at the adjusted ages of 6-months, 1-year, 2-years, and 3-years to make sure that you're child is progressing well and that you are getting whatever extra help you may need. Gabriel saw one of the neonatologists that had been working with us since his ventilator days. She wasn't there when he was first born (apparently they move around to different hospitals), but she was around for most of his stay. She was very happy to see him! In general, Gabriel seems to be doing very well. He's a little behind in some motor development, so we will be sticking with the physical therapy, and of course he is way behind in the feeding department, but we knew that too.
The only other issue that came up is that he may have some lingering lung issues. We've been noticing him intermittently quietly wheezing for awhile, and when she listened to his lungs, she could hear it too. She recommended that we see our pediatrician about it and perhaps put him on an inhalent drug for a little while. We'll try to get an appointment, not with our regular pediatrician, but with one we saw in Tacoma who turned out to have a speciality in pulmonology. We have yet to find a regular pediatrician we are completely happy with. Gabriel is such an individual case that the questions we have don't always fall into the routine parent questions or even the routine preemie parent questions.
Anyway, back to the neonatologist who does understand our child. One thing she said which was very interesting is that since the preemie brain develops outside its natural environment [the uterus], it forms connections in different ways. What this means for us is that we need to pay special attention to the way Gabriel processes things and learns. He may not form associations and learn the way a child that developed to term would do. This doesn't mean that he's impaired, but it means that he may need to have information and processes presented to him in different ways than we would think. Apparently, this shows up about the time kids enter school since school is such a structured system that tries to treat every kid the same way. It will be interesting to see how he grows and develops.
The only other issue that came up is that he may have some lingering lung issues. We've been noticing him intermittently quietly wheezing for awhile, and when she listened to his lungs, she could hear it too. She recommended that we see our pediatrician about it and perhaps put him on an inhalent drug for a little while. We'll try to get an appointment, not with our regular pediatrician, but with one we saw in Tacoma who turned out to have a speciality in pulmonology. We have yet to find a regular pediatrician we are completely happy with. Gabriel is such an individual case that the questions we have don't always fall into the routine parent questions or even the routine preemie parent questions.
Anyway, back to the neonatologist who does understand our child. One thing she said which was very interesting is that since the preemie brain develops outside its natural environment [the uterus], it forms connections in different ways. What this means for us is that we need to pay special attention to the way Gabriel processes things and learns. He may not form associations and learn the way a child that developed to term would do. This doesn't mean that he's impaired, but it means that he may need to have information and processes presented to him in different ways than we would think. Apparently, this shows up about the time kids enter school since school is such a structured system that tries to treat every kid the same way. It will be interesting to see how he grows and develops.
Thursday, March 7, 2013
Teeth!
Just a quick note to say that Gabriel has had a visit from the tooth fairy! In my opinion, if she's the one who takes the teeth away when they fall out, she must be the one that magics them into being in the first place, thereby creating eternal job security. Anyway, the bottom two teeth are very noticeable this week and he seems to be in no discomfort at the moment.
Barfy Baby Boy
We had our GI appointment this past Monday. One of our major concerns is that Gabriel's spitting up has recurred with a vengeance. We are routinely cleaning up half of each feed as much as 20 minutes after feeding him. It's so weird, this artificial feeding regimen he's on. The dieticians can calculate how many calories he *should* have based on his age and weight, but that's not necessarily what he needs. Even feeding much less than recommended and him barfing so much this past week or two, he still made fantastic gains in the weight and length department. Gabriel is actually ON the weight/length charts now with his actual age! He's in the 2nd percentile for a 10-month old, but considering he's not supposed to be a 10-month old, that's phenomenal. The actual numbers are 16.5 lbs, and 26.5".
But we still have to get this reflux thing under control. The doctor took a quick abdominal x-ray and saw a very constipated baby. Given that the alimentary canal is essentially a tube through the body, if you fill up the bottom end of the "plumbing", things going in the top end won't make it through and will come back out the way they went in. At least, that's the Reader's Digest non-scientific way of saying it. So, off to the drugstore we went for baby laxative and Gabriel now has a standing prescription for lactulose to keep things regular. He is also on Zantac, the mildest reflux drug. The goal is to have him tolerate his high calorie milk during the day like he does at night. She also wants to do a more in-depth x-ray study of his upper GI tract involving injecting barium into his g-tube and taking timed snapshots of his small intestines as the barium moves through to ensure that there is no twisting or blockage of the intestines. We have this scheduled, but we are not sure about subjecting the baby to the radiation just yet.
However, since Monday, reflux has increased. Cleaning out the baby and reflux drug non-withstanding. At the doctor's request, I put him back on high calorie milk during the day, even though we haven't had great luck with it in the past. Her reasoning is that if he can tolerate it at night, there is no reason why he can't tolerate it during the day. But, I hope I found a light at the end of the tunnel. Today, when I fed him, I was distracted and fed him very slowly for the first two-thirds of the meal. Then, I got my act together and fed the last 50mL at the rate we've been working at for awhile (7 mL/min). Sure enough, 50mL came right back up the pipe. So, I wondered....are we just feeding him too fast? The last dietician we saw told us that bolus feeding should take no more that 15-20 minutes, so we adjusted our feeding rate accordingly. But the dietician he saw Monday made the suggestion to actually feed him slower or even put him on the pump during the day. So, I tried that. His pump is portable and comes with a little backpack, so I put it all together and set the rate to give him his full meal over the course of 45 minutes. And it worked. No coughing, retching, gasping or any other signs of possible reflux. Of course, he was napping through most of it, but that hasn't been stopping him from vomiting before. The beauty of the pump is that it's hands free for us, and we can sit him in his high chair and work with his spoon feeding while his tummy slowly fills up with food via the pump. I've been so resistant to using the pump during the day, because I kind of hate the whole g-tube/food pump aspect of his life, that it never really occurred to me to do things this way.
The other part of being able to fill up his tummy while on high chair spoon time is that he might start making the connection between food in his mouth and getting full, even though he's not eating enough to make that happen naturally. The dietician at this past visit made a very good point that we hadn't considered: we can make him hungry, but hunger doesn't create feeding skills. So, putting him on a hunger trial would just make him cranky since he doesn't have the necessary skills to successfully swallow enough food to be not hungry. He doesn't "get" hunger, which we knew, but we needed someone to put a different spin on it for us. So, we have some good suggestions to work with, and I hope that the pump will be a good daytime option for us. Because, if we can get him to hold down food and hold down more volume than we're currently feeding, we might be able to get rid of the night-time pump altogether. The only thing holding us back is that he can't hold down sufficient volume in a daily bolus feed.
But we still have to get this reflux thing under control. The doctor took a quick abdominal x-ray and saw a very constipated baby. Given that the alimentary canal is essentially a tube through the body, if you fill up the bottom end of the "plumbing", things going in the top end won't make it through and will come back out the way they went in. At least, that's the Reader's Digest non-scientific way of saying it. So, off to the drugstore we went for baby laxative and Gabriel now has a standing prescription for lactulose to keep things regular. He is also on Zantac, the mildest reflux drug. The goal is to have him tolerate his high calorie milk during the day like he does at night. She also wants to do a more in-depth x-ray study of his upper GI tract involving injecting barium into his g-tube and taking timed snapshots of his small intestines as the barium moves through to ensure that there is no twisting or blockage of the intestines. We have this scheduled, but we are not sure about subjecting the baby to the radiation just yet.
However, since Monday, reflux has increased. Cleaning out the baby and reflux drug non-withstanding. At the doctor's request, I put him back on high calorie milk during the day, even though we haven't had great luck with it in the past. Her reasoning is that if he can tolerate it at night, there is no reason why he can't tolerate it during the day. But, I hope I found a light at the end of the tunnel. Today, when I fed him, I was distracted and fed him very slowly for the first two-thirds of the meal. Then, I got my act together and fed the last 50mL at the rate we've been working at for awhile (7 mL/min). Sure enough, 50mL came right back up the pipe. So, I wondered....are we just feeding him too fast? The last dietician we saw told us that bolus feeding should take no more that 15-20 minutes, so we adjusted our feeding rate accordingly. But the dietician he saw Monday made the suggestion to actually feed him slower or even put him on the pump during the day. So, I tried that. His pump is portable and comes with a little backpack, so I put it all together and set the rate to give him his full meal over the course of 45 minutes. And it worked. No coughing, retching, gasping or any other signs of possible reflux. Of course, he was napping through most of it, but that hasn't been stopping him from vomiting before. The beauty of the pump is that it's hands free for us, and we can sit him in his high chair and work with his spoon feeding while his tummy slowly fills up with food via the pump. I've been so resistant to using the pump during the day, because I kind of hate the whole g-tube/food pump aspect of his life, that it never really occurred to me to do things this way.
The other part of being able to fill up his tummy while on high chair spoon time is that he might start making the connection between food in his mouth and getting full, even though he's not eating enough to make that happen naturally. The dietician at this past visit made a very good point that we hadn't considered: we can make him hungry, but hunger doesn't create feeding skills. So, putting him on a hunger trial would just make him cranky since he doesn't have the necessary skills to successfully swallow enough food to be not hungry. He doesn't "get" hunger, which we knew, but we needed someone to put a different spin on it for us. So, we have some good suggestions to work with, and I hope that the pump will be a good daytime option for us. Because, if we can get him to hold down food and hold down more volume than we're currently feeding, we might be able to get rid of the night-time pump altogether. The only thing holding us back is that he can't hold down sufficient volume in a daily bolus feed.
Monday, March 4, 2013
10 months old (6 months adjusted) update
Okay, I'm a week late in writing this, but better late than never. Gabriel has made quite a bit of progress in the past month. He's a rolling over machine, and loves to kick his feet, pull his socks off, and blow raspberries. He is actively reaching for toys and has figured out how to bounce himself to the moon in his bouncy chair. He's almost outgrown the bouncy chair. I don't know what we're going to do!
I have been trying to make high chair time "fun time" so that he learns to like the chair, even though he's still not too into this whole spoon feeding thing. He bangs his plastic toys around, throws spoons at the dog and loves to kick the bottom of the tray. In terms of food, once we get the food in his mouth, he is pretty unsure of what to do with it, but he's not actively rejecting things like he was with the bottle. He does eventually swallow and doesn't drool or spit out a great deal. You have to sneak the spoon in while he's chewing on something else or smiling, if he sees you coming, he'll close his mouth. We're still on what is called non-nutritive feeding, meaning that we're not concerned with how much he's taking, we're just trying to get him used to the idea. His SLP suggested a couple things. One is what she called a "baby net" which is basically a fine mesh net attached to a pacifier handle that you can put pieces of solid food into and as the baby chews on the food in the net, some of it squishes out. I didn't like the net idea because of the impossibility of getting it really clean, so I got the silicone holder version that's basically a giant pacifier nipple with holes. So far, he has put every part of it in his mouth EXCEPT the feeding end. We also got him a sippy cup just to play with for now, and he enjoys banging that around too. We have completely discontinued the bottle; I washed them and put them away.
We were doing pretty well with keeping milk down, but over the past week, he's been refluxing a lot more. We have our monthly GI appointment today, so hopefully we'll get some direction on how to help him. Even though he's spitting up quite a bit, he has still gained 1.5 lbs. in the past month and is now at 16.5 lbs. I haven't measured his length, but given the fact that he's outgrown his 6-month sized pants, I'm going to say he's over 26 inches now.
So far, all of us have dodged the winter cold viruses. Gabriel has two more shots in his RSV series (one coming up this week and the other the beginning of April) and then we will be officially considered out of RSV season. We are looking forward to being able to take him to church again. We do take him out and about on limited excursions -- out to dinner at an uncrowded restaurant or on walks to the library, but it will be nice to not have to worry quite as much. I am cutting way back on pumping breastmilk, but want to make sure he gets at least a little bit through March because the antibodies in the milk will still boost his immune system. I plan to be off the pump by sometime in April, so at that point it will be formula and solid food only. He seems to be doing okay with the slow transition to more and more formula.
I'll leave you with a happy, smiley photo:
Additional photos for this past month can be found at http://miri116.minus.com/mtpwSHZQIToeQ
I have been trying to make high chair time "fun time" so that he learns to like the chair, even though he's still not too into this whole spoon feeding thing. He bangs his plastic toys around, throws spoons at the dog and loves to kick the bottom of the tray. In terms of food, once we get the food in his mouth, he is pretty unsure of what to do with it, but he's not actively rejecting things like he was with the bottle. He does eventually swallow and doesn't drool or spit out a great deal. You have to sneak the spoon in while he's chewing on something else or smiling, if he sees you coming, he'll close his mouth. We're still on what is called non-nutritive feeding, meaning that we're not concerned with how much he's taking, we're just trying to get him used to the idea. His SLP suggested a couple things. One is what she called a "baby net" which is basically a fine mesh net attached to a pacifier handle that you can put pieces of solid food into and as the baby chews on the food in the net, some of it squishes out. I didn't like the net idea because of the impossibility of getting it really clean, so I got the silicone holder version that's basically a giant pacifier nipple with holes. So far, he has put every part of it in his mouth EXCEPT the feeding end. We also got him a sippy cup just to play with for now, and he enjoys banging that around too. We have completely discontinued the bottle; I washed them and put them away.
We were doing pretty well with keeping milk down, but over the past week, he's been refluxing a lot more. We have our monthly GI appointment today, so hopefully we'll get some direction on how to help him. Even though he's spitting up quite a bit, he has still gained 1.5 lbs. in the past month and is now at 16.5 lbs. I haven't measured his length, but given the fact that he's outgrown his 6-month sized pants, I'm going to say he's over 26 inches now.
So far, all of us have dodged the winter cold viruses. Gabriel has two more shots in his RSV series (one coming up this week and the other the beginning of April) and then we will be officially considered out of RSV season. We are looking forward to being able to take him to church again. We do take him out and about on limited excursions -- out to dinner at an uncrowded restaurant or on walks to the library, but it will be nice to not have to worry quite as much. I am cutting way back on pumping breastmilk, but want to make sure he gets at least a little bit through March because the antibodies in the milk will still boost his immune system. I plan to be off the pump by sometime in April, so at that point it will be formula and solid food only. He seems to be doing okay with the slow transition to more and more formula.
I'll leave you with a happy, smiley photo:
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