Well, normally I reserve my posting for family and friends, but this one I am writing to share with some other moms whose children have reflux as well as friends and family who are interested. Hopefully our experience will be of some encouragement to those just starting the struggle. This is a long read, which if you have a baby with reflux, I am sure you will read and relate.
I knew that all babies spit up. I knew that all babies pooped alot. I knew that all babies cried. But I totally did not expect what I experienced with my twins their first night home.We brought Daisy and Jacob home after 6 days in NICU, they were 35 weekers. I totally wanted to take them right back to the hospital. Not because I thought they were terribly sick or anything...I just could not get them to stop crying, puking, and pooping. The first night home we went through every outfit they had, and we had a lot of them. It got a little better after that, but we started to notice a lot of things, like spit up flying halfway across their beds, crying as if they were totally uncomfortable, gagging and choking and refusal to eat. And trust me, a mother knows when this is something more than the normal! The dr suggested it was reflux and began them on zantac. It helped Jacob for a while, but Daisy kept refusing to eat. It got worse and worse for her and since she was so small they just wanted to run more and more tests on her all the time. She had the Barrium swallow test done, which showed reflux and Delayed Gastric Emptying. Well, we already suspected the reflux, so we still didn't know what to do. Some days I would call the dr in tears cause I just couldn't get her to eat after hours of trying, and this was daily. Some people even suggested that "she would eat when she was hungry"...well, I just had to ignore their ignorance and keep trying to help my baby girl because the last thing I wanted was for her to be on a feeding tube in the hospital, which was a very realistic possibility. There were times that she wasn't even on the growth chart. And anytime she got a little cold, drs gave her antibiotics while letting Jacob tough it out because they didn't feel she was strong enough to fight anything worse. We tried all kinds of things to try to get her to eat including changing formulas. One good intentioned friend suggested soy...that was the most MISERABLE weekend ever. Non stop crying times 2, so much stinky poop the whole house smelled. It was aweful. Eventually we found that a generic gentlease helped Jacob along with Axid. But Daisy still refused to eat and was still gagging and choking. One of the things that worried me the most was if they choked in their bed while they slept. So, when they were 6 months old, I began doing tons of research. I found that Daisy had tons of classic dairy and soy allergy signs, eczema, the allergy "circle", constipation, rashes, refusal to eat, reflux, DGE, and other things. So I decided to try Allimentum, similar to gentlease but more broken down. She began taking full bottles in 10 minutes and never looked back. She was a totally different baby! Normal amounts of spit up, normal BMs, normal eating....
I told the dr about this, and she said, "hmmm, I need to try that Alimentum more often!" You think? that was such an easy solution, I wish we (she) had thought about it earlier. At one year, when it was time for Whole Milk, they were still reacting to milk products, so we had Daisy tested since she was the worst, and sure enough, the scratch test showed allergies to Milk and soy. So, we went 6 more months without it, and at 18 mos, they grew out of it. They are now healthy 3 1/2 year old kids who eat a ton!
Note: When I find helpful and reliable sites, I try to post them to the side. So look for links there related to reflux and MSPI! I like to include recipe and food sites too since it is so hard to be dairy/soy free it is great to find a wealth of good tasting recipes.
I knew that all babies spit up. I knew that all babies pooped alot. I knew that all babies cried. But I totally did not expect what I experienced with my twins their first night home.We brought Daisy and Jacob home after 6 days in NICU, they were 35 weekers. I totally wanted to take them right back to the hospital. Not because I thought they were terribly sick or anything...I just could not get them to stop crying, puking, and pooping. The first night home we went through every outfit they had, and we had a lot of them. It got a little better after that, but we started to notice a lot of things, like spit up flying halfway across their beds, crying as if they were totally uncomfortable, gagging and choking and refusal to eat. And trust me, a mother knows when this is something more than the normal! The dr suggested it was reflux and began them on zantac. It helped Jacob for a while, but Daisy kept refusing to eat. It got worse and worse for her and since she was so small they just wanted to run more and more tests on her all the time. She had the Barrium swallow test done, which showed reflux and Delayed Gastric Emptying. Well, we already suspected the reflux, so we still didn't know what to do. Some days I would call the dr in tears cause I just couldn't get her to eat after hours of trying, and this was daily. Some people even suggested that "she would eat when she was hungry"...well, I just had to ignore their ignorance and keep trying to help my baby girl because the last thing I wanted was for her to be on a feeding tube in the hospital, which was a very realistic possibility. There were times that she wasn't even on the growth chart. And anytime she got a little cold, drs gave her antibiotics while letting Jacob tough it out because they didn't feel she was strong enough to fight anything worse. We tried all kinds of things to try to get her to eat including changing formulas. One good intentioned friend suggested soy...that was the most MISERABLE weekend ever. Non stop crying times 2, so much stinky poop the whole house smelled. It was aweful. Eventually we found that a generic gentlease helped Jacob along with Axid. But Daisy still refused to eat and was still gagging and choking. One of the things that worried me the most was if they choked in their bed while they slept. So, when they were 6 months old, I began doing tons of research. I found that Daisy had tons of classic dairy and soy allergy signs, eczema, the allergy "circle", constipation, rashes, refusal to eat, reflux, DGE, and other things. So I decided to try Allimentum, similar to gentlease but more broken down. She began taking full bottles in 10 minutes and never looked back. She was a totally different baby! Normal amounts of spit up, normal BMs, normal eating....
I told the dr about this, and she said, "hmmm, I need to try that Alimentum more often!" You think? that was such an easy solution, I wish we (she) had thought about it earlier. At one year, when it was time for Whole Milk, they were still reacting to milk products, so we had Daisy tested since she was the worst, and sure enough, the scratch test showed allergies to Milk and soy. So, we went 6 more months without it, and at 18 mos, they grew out of it. They are now healthy 3 1/2 year old kids who eat a ton!
Eli, my third reflux baby
3 Years later, Eli arrived. A healthy 8 lb 9 oz boy. I was hopeful that he would not suffer from reflux like Daisy and Jacob did since he was a healthy full term baby. And it seemed for a few weeks that we had got what we hoped for. But like many babies, reflux does not start rearing its ugly head fully until about 3 or 4 weeks old. Eli began having lots of trouble with feedings, screaming and arching, spitting up large quantities, pulling off of the breast, choking and gagging, acid burns on his chin, and for lack of a better word acting like a little animal mushing his face in my chest. He acted hungry but just could not eat much. He slept well as long as he was comfortable, but for at least a couple of hours every night in the middle of the night or early morning he was in pain and the only way he could be comfortable and sleep was with his knees on the bed and lying over my belly in a somewhat upright belly position. And he squirmed and squirmed for a while till he could fall asleep. The dr again suggested reflux, and I said, "nooooo, maybe it is just oversupply! Lets wait and see." I was blindly hopeful! And worse it got, and I just knew. Once we got to having problems with more and more feedings, screaming, arching, on again, off again feeding between blood curdling screams. This time I am breast feeding, and it is very different. He likes to comfort feed sometimes. And sometimes my milk supply is affected because of his inability to eat. I began watching him after I ate certain things to see if maybe he might be reacting to dairy/soy like Daisy and Jacob did, and sure enough, whenever I ate certain things, the next day he was just miserable ALL DAY! So, I began to cut out the dairy and he is also on Axid. We began to see some improvements, but not enough. It seemed he would be better for a few days, and then have a terrible day again. So, I began to cut the soy as well. I really needed some snacks and decided nuts would be a good one...bad idea! It is another one of the Top 8 allergens for babies, and for good reason. He reacted to cashews and Almond milk! Bye bye nuts! Most recently we bought the nap nanny for elevation while sleeping and we have changed his medicine to Prevacid. We are still waiting to see the outcome of these steps. So far it is looking promising, but I have spoken too fast in the past so we just have to wait and see. I have to say though, when he is comfortable, he is the most contagiously happy boy ever and such a joy and very sweet. He LOVES to interact with people and smile and he could really fool the best of you! I truely enjoy him! He loves to chatter and wiggle around and is going to be good competition for his older sister who was very similar at this age. And while it is a struggle to have to eat such a limited diet, it is totally worth it for that smile! I encourage anyone who can continue to keep BFing, to try. It will be worth it if you can.Note: When I find helpful and reliable sites, I try to post them to the side. So look for links there related to reflux and MSPI! I like to include recipe and food sites too since it is so hard to be dairy/soy free it is great to find a wealth of good tasting recipes.
