Rhys had his follow-up with the high risk clinic yesterday. After waiting an hour and a half to see the doctor (yes, I am not kidding) she said he looked good. We had planned on using the high risk clinic as his primary pedi for the short term to eliminate having to shuffle back and forth between two while he is on oxygen and getting all his shots, etc. But, if that wait is typical we will absolutely not be using them. I can only imagine trying to wait that long with a sick child. It's hard enough keeping him from screaming when he is perfectly well.
Anyway, she asked what he was "doing" at home and seemed happy that he is rolling over from tummy to back in both directions, talking a little and swatting his animals on the play yard. She said he should be smiling at us at this point, but she isn't worried since everything else seems normal and he has been in pain because of his stomach so maybe he doesn't have anything to smile at! He has a bit too little tone in his back and and arms and a little too much in his legs (which we knew), but she too thinks therapy should be able to correct everything she sees at this point. She thinks it is great he can lift his head so well while lying on his tummy and seemed impressed he can occasionally bring his head with him when you try to lift him by his arms when he's on his back (that is usually around 4 months). She felt like Rhys' behavior seemed like reflux so she gave us Zantac to try. I was willing after being reassured it wouldn't cause problems if it happened that Rhys doesn't have reflux. If this doesn't work she said we could try something else and/or do a swallow study to see what the deal is. This might address some of his arching, etc, but I still haven't figured out how reflux is related to the gurgling tummy. We'll see what happens. For Rhys' sake I hope this is a quick fix, but I have my doubts.
We still haven't gotten a call from ECI, so we have no idea how the therapy component of all this is going to go. We should hear from them within the week. I think we are also going to see a "normal" therapist who specializes in preemies in conjunction to make sure everything is going as it should.
Meanwhile, Rhys seems to be settling in a bit more. He is okay with us not holding him for longer amounts of time every day. He is also sleeping pretty well at night; however between a snoring husband and a baby that make crazy noises all night it is hard for me to fall asleep. :o) We're still doing well with feeds, although he seems to have learned how to play with the bottle. He will act like he is super hungry, but then will only half-heartedly suck and it's like he's smiling at you knowing what he's doing. What a monkey! He weighed 9lb 4oz with his clothes on at the visit yesterday, so I would say he is very nearly 9 pounds. Not too bad considering we were having problems with him eating!! He has gained almost a pound since he left the NICU (less than 2 weeks!). He is on the shrimpy end of the growth chart, but the doctor said he should catch up. Considering they didn't actually try to "grow" him for several weeks after his birth, and the weight loss we experienced while playing with non-fortified formula prior to discharge, I am happy he's on the charts at all.
Anyway, she asked what he was "doing" at home and seemed happy that he is rolling over from tummy to back in both directions, talking a little and swatting his animals on the play yard. She said he should be smiling at us at this point, but she isn't worried since everything else seems normal and he has been in pain because of his stomach so maybe he doesn't have anything to smile at! He has a bit too little tone in his back and and arms and a little too much in his legs (which we knew), but she too thinks therapy should be able to correct everything she sees at this point. She thinks it is great he can lift his head so well while lying on his tummy and seemed impressed he can occasionally bring his head with him when you try to lift him by his arms when he's on his back (that is usually around 4 months). She felt like Rhys' behavior seemed like reflux so she gave us Zantac to try. I was willing after being reassured it wouldn't cause problems if it happened that Rhys doesn't have reflux. If this doesn't work she said we could try something else and/or do a swallow study to see what the deal is. This might address some of his arching, etc, but I still haven't figured out how reflux is related to the gurgling tummy. We'll see what happens. For Rhys' sake I hope this is a quick fix, but I have my doubts.
We still haven't gotten a call from ECI, so we have no idea how the therapy component of all this is going to go. We should hear from them within the week. I think we are also going to see a "normal" therapist who specializes in preemies in conjunction to make sure everything is going as it should.
Meanwhile, Rhys seems to be settling in a bit more. He is okay with us not holding him for longer amounts of time every day. He is also sleeping pretty well at night; however between a snoring husband and a baby that make crazy noises all night it is hard for me to fall asleep. :o) We're still doing well with feeds, although he seems to have learned how to play with the bottle. He will act like he is super hungry, but then will only half-heartedly suck and it's like he's smiling at you knowing what he's doing. What a monkey! He weighed 9lb 4oz with his clothes on at the visit yesterday, so I would say he is very nearly 9 pounds. Not too bad considering we were having problems with him eating!! He has gained almost a pound since he left the NICU (less than 2 weeks!). He is on the shrimpy end of the growth chart, but the doctor said he should catch up. Considering they didn't actually try to "grow" him for several weeks after his birth, and the weight loss we experienced while playing with non-fortified formula prior to discharge, I am happy he's on the charts at all.
4 comments:
Gurgling tummy, excessive gas and frequent hiccups are all a part of reflux. Those poor babies have so much to go through. If he doesn't like the zantac as is (is it the green mint crap?) then take it back to reflavor it grape. I'm not sure who all does this in Houston, as we never reflavored when we lived in the area. Maybe Walgreens. I think CVS does, but not for sure. It only costs a few bucks more and worth it if the kiddo is spitting the stuff out! The big thing to watch out with Zantac and the babies is it is highly weight sensitive, and they seem to get used to it rather quickly. My youngest was on it at first, and then we got referred out to a pedi GI doc. He opted not to do the swallow study right away and tried instead to switch her to prevacid, which worked wonders. We had a much happier baby. Her reflux was the silent version. My first kid had projectile vomitting, but had it as well. I think that if the baby is on mostly mother's milk (you're pumping?) that they have it a lot easier than on formula. My first had mostly formula, and my second got very little, like probably less than 5 ounces and that was just in the beginning because my milk took so long to come in.
Anyway, glad you guys are finally getting something to help out that sweet little baby boy! They usually outgrow it, but some do end up with problems of pyloric stenosis. Mine outgrew it. Hopefully by the time Rhys is a year it will be a problem long forgotten...
http://cfhusband.blogspot.com/ has some info about a baby born a year ago January 8 at 24 weeks...so now she's having a birthday! She is still a tiny thing, but doing well!
I wish I could offer some advice, but we're still dealing with what we believe is reflux. I remember Olivia's tummy sounding awful when she came home. She would cry out during her bottles. She would have projectile vomiting every day for months, was very gassy and gurgly. She doesn't throw up much anymore, but something still bothers her. I think reflux does effect micro-preemies worse than usual. We've never tried Zantac, but we were on Prevacid for awhile and have now switched to Prilosec. She still takes gas drops before some bottles and we have to thicken her feeds. It's so frustrating when you don't know what's wrong. Hang in there. I'm so happy that Rhys is home!! It's hard after you've been through the long NICU road and then have the stress of a "newborn" baby. I'm constantly praying and thinking of you guys.
That's super news about his development thus far. Go Rhys! keep the pictures coming since I can't see him in person this season.
It is awesome that he is progressing. But I am so sorry to hear about even the smallest of struggles. Like Jodi said, keep your head up and continue to be thankful. I know you are an amazing mom and I am sure Cody is no different as a father. You will get your little man through all of this with flying colors. If I hear of anything that might help from this facility I will pass it along to you. Take care and God Bless!
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