It's no secret that vomit has been a part of everyday life since The Chubs was born. I mean, the title of my blog is "Spit Happens" which kind of explains things right out.
When the Chubs was an infant, she would spit up an average of 20 times with each feeding (and we wondered why she wasn't gaining much weight...). Then there were the occasional projectile pukes which were not only inconvenient but downright scary for a first time mom. Especially when the puke went through the nostrils.
Once the mouthfuls of spit up decreased and then stopped, the full fledged vomits began. Up until 10 months old when Lexi was still just drinking milk/formula, they weren't a huge deal. Trust me, I still was not thrilled to be cleaning up puddles of milk puke but at least the smell wasn't as potent and it certainly didn't stain too badly.
Although solid food intake was a huge milestone for us considering our battle with terrible reflux and oral aversion, it also introduced us to much more disgusting vomits. Many kids stop puking or spitting up once solids are introduced. Unfortunately, due to a history of reflux, terrible gag reflex and continued oral sensitivities, the puke did not stop. It is becoming increasingly less common, but it is still very much a part of our lives. I could never begin to count how many times I have cleaned up puke. It is definitely in the hundreds.
Before having Lexi I was a pukephobe. I hated anything having to due with anyone's puke. I couldn't even listen to a family member puke without freaking out. It was one of my major fears. After a pregnancy filled with morning sickness from start to finish (including an hour AFTER delivering The Chubs), I started to not fear it quite as much. Afterall, I had probably puked well over 500 times during pregnancy and it was no biggie. Now I think it was preparing me for having a reflux kiddo.
Today at lunch for no real rhyme or reason, Lexi gagged on something. It could've been something as minor as a tiny lump in her food, or that the spoon went back too far in her mouth. But as soon as this child gags, she starts puking and doesn't stop until her stomach is completely empty. Considering she had a sizeable lunch it was EVERYWHERE. Usually cleaning up after her for lunch is already a daunting task. She likes to play in her food as most toddlers do and fling bowls across the kitchen floor. It usually takes me about 20 minutes to fully clean up after her meal on a puke-free day. But when puke is added to the picture it adds a solid 15 minutes onto my clean up time because it gets in every crack and crevice of her highchair, all over her clothes and all over the floor. That means a new load of laundry, a mop job on the floor and a completely thorough cleaning of her high chair pad and chair.
Can I just say I feel like I deserve to be past this stage by now? Everyone expects an infant to spit up once in awhile. Occasionally the stomach flu hits and you have a day or two of puke that you have to deal with. But seriously, she is 1.5 years old now and I feel I should have a break from this weekly puke business. Many people say kids get over their reflux once they start walking. I have yet to see this change. Part of the problem is that most kids don't outgrow their reflux until they hit 9 to 10 kilos which for many kids is around 1 year of age. Since Lexi is a tiny one, she's not there yet. I'm hoping once she gets there we will be done with this. Although the puke doesn't disgust me nearly as much as it used to, it's still not pleasant to clean.
Puke, I'm so done with you.
Showing posts with label refluxing woes. Show all posts
Showing posts with label refluxing woes. Show all posts
Monday, May 16, 2011
Wednesday, June 30, 2010
I owe you this much
I know my posts have been few and far between, but I guess I just haven't been in the mood to post. Life has been busy, stressful, perplexing etc. Sometimes I just feel overwhelmed by all the possibilities when it comes to The Chubs and her poor eating habits. We've at least narrowed it down (for the time being) to reflux, but we haven't ruled out additional causes.
Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.
Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.
To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.
There are other tests they are going to run but to be honest, I can't remember all of them.
The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.
Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.
I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.
Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.
We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.
Monday we had an appointment with the Genetics department at Children's. Although the doctor was helpful, you don't become a geneticist for your people skills. After inspecting The Chubs thoroughly, including her lady bits, the doctor began referring to her as "him" and "he" for about 5 minutes. I tactfully interjected that "she" had reflux, and I think from then on she got the hint.
Not much came out of that appointment because they are in the process of getting us pre-authorized by insurance to have testing done and until that "little" hurdle is jumped, we can't move forward.
To sum things up, they are testing for any reasons that she may be slow to grow or just small in general. One test would be to see if she has Turner Syndrome or Turner Mosaicism, meaning she would be missing the second X chromosome in all or part of her cells. If that was the case there would be a strong possibility that she would never be able to have kids. It is also possible that she may have some heart or kidney issues (although not necessarily likely since nothing of that sort has been detected up to this point), and would most likely be a short adult (under 5 feet tall). I hope for her sake, she never has to deal with infertility. We hope that if she does have TS, that it is the type where only part of her cells are missing the X chromosome because there would be a chance she would still have normal periods and be able to have children, and may only have the short stature, and none of the other complications.
There are other tests they are going to run but to be honest, I can't remember all of them.
The best thing that came out of the appointment is that she is now 12 lbs. That means she gained over a half ounce every day since her last weigh-in. It makes all my fighting for her to eat every day worth it.
Her body is 1st percentile and her head is 10th percentile. I laughed at that but the nurse said it was important for her head to be that big. They wouldn't want it to be the first percentile. Probably for developmental reasons.
I'm pretty sure she is intolerant to milk protein. We tried adding milk based formula to my breast milk a few weeks ago and she did horribly the next few days. Lots of crying during feedings and refusal after just a half - one ounce of milk. Once we moved back to the soy based formula she went right back to normal again. I'm still not eating dairy for this reason and trying to slowly transition her to the soy based formula exclusively. It will probably be a very slow process because I want to make sure she tolerates it well before I stop pumping. But oh, how ready I am to stop pumping.
Solids are a battle still. I'm still reluctant to even push them because I know she doesn't need them for extra calories yet because she's still small and isn't even drinking that much milk each day to begin with. I look at it as a learning tool though, so that she knows how to eat from a spoon. The frustrating thing is that she knows what to do, she is just very stubborn and will only open her mouth on her terms. I'm sure this is related to reflux and her oral aversions. Never in my life did I think I would have to struggle so much to get my child to eat. I thought if anything, that would be the easy part and that the rest of it would be more challenging. I guess it goes to show that you never know what to expect, no matter how prepared you are to have children.
We have our consult with the surgeon on Friday, then another follow-up with her pedi next wednesday. After that we have our Early Intervention assessment on the 19th, followed by a hearing test (which they require. I have no concerns regarding her hearing), and her GI appointment on August 6th. Our summer will be filled with dr. appointments and tests. My hope was for a summer of camping and swimming lessons, but if all of this leads to a baby with a good appetite that is growing and developing appropriately, then it's all worth it.
Thursday, June 17, 2010
The "S" word, and other words I don't like.
When we took The Chubs to have her upper GI X-Ray done about a month ago, we sat in a waiting room that also held children that were about to have surgery. I prayed at that moment we would never have to be back at that same spot for that reason. I watched as tiny babies, inquisitive toddlers, and other small children sat in their PJ's next to a bag of items they would need during their stay and recovery. My heart went out to all these kids and their parents. To see your child have to go through something like that would have to be extremely difficult. I didn't know why each of them were there, but I could tell by the facial expressions of the worried parent accompanying them, that no matter what type of surgery it was, no matter how noninvasive, it was still hard to watch as their precious child was about to go under the knife.
A few days ago The Chubs was eating at her all time worst. I panicked and called the pediatrician. It's obvious she's very bothered by her reflux lately. The coughing, gagging, and occasional vomiting along with extra fussiness, all the tell the tale of a miserable punkin. The added Maalox 4x a day is not doing anything so far. I know that it could take a few weeks to notice a difference there. I have also cut out dairy for 2 1/2 weeks now. Nothing has really changed or improved. My guess is that the extra calories we're adding to her diet by concentrating my milk with formula is hard on her tummy as well.
I received a phone call back from my pediatrician yesterday. I wasn't near my phone so I received a message from him instead. The gist of it was that what she's eating isn't enough to help her grow if she continues eating this poorly, and since the medications aren't helping a lot the next step would possibly be surgery if things do not improve. The "S" word I'm referring to? That's it. Surgery. It's called the Nessen's procedure, where they tighten the sphincter muscle to prevent her from refluxing as much. The good news is it is done laparoscopically and only has a recovery time of a few days. But still, just the thought makes my heart drop in my chest.
Trying to collect myself after finding out this information, I called the recommended surgeon my doctor gave me a number for at Children's Hospital. At this point, he hadn't provided the name of the type of surgery so when I called and they asked, I tried to explain it, but didn't have the right terminology. The lady ended up asking someone else what it might be and she said, it was probably a G Tube. I immediately started freaking out. In case you don't now what that is, it's when they have to make an incision and insert a feeding tube directly into the stomach. You would then feed the baby exclusively through this tube. The lady on the phone said "I'll just note it's for a G-Tube", scheduled my appointment and hung up. Feeling completely overwhelmed, I called my pediatrician again to confirm what the procedure was. That's when he confirmed it was the Nessen's Procedure, NOT a G-Tube. So I called Children's back again and corrected the appointment to say the right thing.
On top of all this drama, my insurance has decided they no longer want to cover prevacid for The Chubs. In a letter sent this past month, they stated that they have found over the counter medication to be "just as effective". What they fail to realize is that prevacid in solutab form is NOT provided over the counter and you can't shove a tablet down an infant's throat. It just doesn't work that way. The nurse at my pediatrician's office (who I love... smoooches!) spent over an hour on hold with my insurance company trying to speak to someone who could resolve this issue. She was disconnected several times, and given an invalid number to call. Needless to say she was a little ticked off, and rightfully so. I was frustrated for her and for us as well. I'm visiting relatives in California next week and HAVE to have this resolved before I leave. I can't go without her prescription, considering that anytime she misses a dose she vomits quite a bit and eats like a bird.
Our final solution is to have a local compounding pharmacy turn some over the counter Prevacid into liquid form so I can administer it to the little muffin for now, until this situation can be resolved. They charge about $55 for this service plus the cost of the over the counter medication, but this is much less than the $300 it costs out of pocket for the solutabs. It's getting ridiculous. It sounds like insurance would rather cover the cost of surgery and any other aftermath that may come if my daughter is not on prevacid. No, they didn't tell me this, but if they won't just buck up and cover the solutabs for my daughter to manage her reflux, there will be many more consequences down the line that THEY will end up having to cover.
A few days ago The Chubs was eating at her all time worst. I panicked and called the pediatrician. It's obvious she's very bothered by her reflux lately. The coughing, gagging, and occasional vomiting along with extra fussiness, all the tell the tale of a miserable punkin. The added Maalox 4x a day is not doing anything so far. I know that it could take a few weeks to notice a difference there. I have also cut out dairy for 2 1/2 weeks now. Nothing has really changed or improved. My guess is that the extra calories we're adding to her diet by concentrating my milk with formula is hard on her tummy as well.
I received a phone call back from my pediatrician yesterday. I wasn't near my phone so I received a message from him instead. The gist of it was that what she's eating isn't enough to help her grow if she continues eating this poorly, and since the medications aren't helping a lot the next step would possibly be surgery if things do not improve. The "S" word I'm referring to? That's it. Surgery. It's called the Nessen's procedure, where they tighten the sphincter muscle to prevent her from refluxing as much. The good news is it is done laparoscopically and only has a recovery time of a few days. But still, just the thought makes my heart drop in my chest.
Trying to collect myself after finding out this information, I called the recommended surgeon my doctor gave me a number for at Children's Hospital. At this point, he hadn't provided the name of the type of surgery so when I called and they asked, I tried to explain it, but didn't have the right terminology. The lady ended up asking someone else what it might be and she said, it was probably a G Tube. I immediately started freaking out. In case you don't now what that is, it's when they have to make an incision and insert a feeding tube directly into the stomach. You would then feed the baby exclusively through this tube. The lady on the phone said "I'll just note it's for a G-Tube", scheduled my appointment and hung up. Feeling completely overwhelmed, I called my pediatrician again to confirm what the procedure was. That's when he confirmed it was the Nessen's Procedure, NOT a G-Tube. So I called Children's back again and corrected the appointment to say the right thing.
On top of all this drama, my insurance has decided they no longer want to cover prevacid for The Chubs. In a letter sent this past month, they stated that they have found over the counter medication to be "just as effective". What they fail to realize is that prevacid in solutab form is NOT provided over the counter and you can't shove a tablet down an infant's throat. It just doesn't work that way. The nurse at my pediatrician's office (who I love... smoooches!) spent over an hour on hold with my insurance company trying to speak to someone who could resolve this issue. She was disconnected several times, and given an invalid number to call. Needless to say she was a little ticked off, and rightfully so. I was frustrated for her and for us as well. I'm visiting relatives in California next week and HAVE to have this resolved before I leave. I can't go without her prescription, considering that anytime she misses a dose she vomits quite a bit and eats like a bird.
Our final solution is to have a local compounding pharmacy turn some over the counter Prevacid into liquid form so I can administer it to the little muffin for now, until this situation can be resolved. They charge about $55 for this service plus the cost of the over the counter medication, but this is much less than the $300 it costs out of pocket for the solutabs. It's getting ridiculous. It sounds like insurance would rather cover the cost of surgery and any other aftermath that may come if my daughter is not on prevacid. No, they didn't tell me this, but if they won't just buck up and cover the solutabs for my daughter to manage her reflux, there will be many more consequences down the line that THEY will end up having to cover.
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