r e f l u x
November 12th, 2009 | 
Author: In the video – K is getting her third dose of zantac for the day. She now WANTS the zantac as you can see.. she loves it! However, that was not the case at the hospital, and it most certainly wasn’t when we first started her on it at home. She threw a fit- now when she is throwing a fit, her zantac calms her down.. hmmm
Reflux. Fun right? Watching your baby gag while drinking, and arch their back as they start to feel the pain… burst out in tears spitting out the bottle asking “Mom please stop- I hurt” through terrifying cries… Reflux. AHHHHHHHHHHHHHHH
So if you haven’t guessed yet, K gets reflux… pretty bad. She used to be a lot worse actually- so yes, she has gotten better. She came home with ZERO meds. WOW right?! Most CDH babies wouldn’t dream of leaving the hospital without any meds, but K did. I think it was a month or maybe two months later, not sure- she started having real issues with reflux. She would throw up- not often, but once was enough for me. She would arch her back almost every time I fed her. At one point she would cry as soon as she saw the bottle. So I finally got an appt! My ped called my doc in Syracuse (K’s surgeon) and they called right away and asked for my pharmacy- calling in Zantac and Reglan.
Today, K is just on Zantac – a good amount, 1.5mL’s. But if it helps, it so worth it. Which oddly- back to the poop post- is part of her issue with constipation. So it’s either reflux to the point feeding is impossible, or feeding her prune juice and prunes everyday so she can kick that constipation side effect.
So- how do you know if it’s reflux? What do you do? How can we help our little darlings?
“The most common symptoms of gastroesophageal reflux in infants and children are:
-Frequent or recurrent vomiting.
-Frequent or persistent cough.
-Refusing to eat or difficulty eating (choking or gagging with feeding).
-Heartburn, gas, abdominal pain, or colicky behavior (frequent crying and fussiness).
-Regurgitation and re-swallowing.”
Meds did help K. Zantac does the trick- however that isn’t to say K doesn’t suffer sometimes. She goes in and out. When she isn’t doing well with it now, she most often does the gagging thing, regurgitation deal. It’s not often the food will come back up- but if it does, she most often swallows it again. I feel awful- so I let her play while she eats. She needs to keep her hands busy otherwise she’ll pull my hair- ouch!
I know a lot of babies are on prevacid. I’m not familiar so I can’t talk about it- but I would love someone to! 
I know some babies go home with a lot of meds, I remember reading Ruby’s blog, and they took a pic of all the meds she got throughout the day- there were quite a few.
After eating-
I hold K up for at least 15 min. Often times she is tired, and wants to lay down- but she can’t so, all I can stand for is 15 min of her being absolutely miserable and my back breaking bc all I can do is stand otherwise she’d cry! But I have heard it’s 30 min! So hold that baby up- when they get older, they can sit up- which K does do sometimes.
Advice on Reflux-
-hold baby up as much as you can while feeding- I used pillows to lift my arm.
- hold baby up after feeding too… helps keep it down.
- while sleeping- create a wedge.
- buy the nap nanny (a friend says so)
- use the meds… they work!
-
From: http://children.webmd.com/infants-children?page=2
What Are the Treatments for Acid Reflux in Infants and Children?
There are a variety of lifestyle measures you can try for acid reflux in babies and older children:
For babies:
Elevating the head of the baby’s crib or bassinet.
Holding the baby upright for 30 minutes after a feeding.
Thicken bottle feedings with cereal (do not do this without a doctor’s supervision).
Changing feeding schedules.
Trying solid food (with your doctor’s approval).
For older children:
Elevating the head of the child’s bed.
Keeping the child upright for at least two hours after eating. (yikes)
Serving several small meals throughout the day, rather than three large meals.
Limiting foods and beverages that seem to worsen your child’s reflux.
Encouraging your child to get regular exercise.
What do you? How do you deal? How does your baby deal? What med’s are you on? This is a great post for parents even if you don’t have a CDH baby as a lot of you have reflux babies.
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Dakota used to have reflux pretty bad! Yeah, I said used to. She has pretty much grown out of it *knock on wood*. However, it peaked when she was 2-3 months.
While we were in the hospital, it was bad enough that she almost, almost had to have the nissen fundoplication. The nissen fundoplication is where they wrap the baby’s stomach around their esophagus. What happens with a lot of LCDH babies is that because the stomach was in the chest, after the surgery, the stomach is in the right place, but the flap or connection between the stomach and esophagus is too loose (I am probably not explaining this technically correct), so the nissen procedure is used to create a tighter seal between the stomach and the esophagus to the acids cannot rise. Shands does this pretty often because Dr. Kays is very afraid of a baby with sever reflux aspirating (refluxing then breathing in the milk/stomach acids), which could cause an infection in the lungs. After this procedure they are supposed to be unable to throw up, and even unable to burp, so a g-tube is inserted at the same time (a tube going to the babies stomach with a port on the outside of their tummy). The g-tube can be used to vent air and contents.
Dakota had a GI study done where she drank barium and then they watched what happened. She did have reflux shown on the study, but it was just mild enough that we got out of the hospital without the nissen/g-tube surgery by the skin of our teeths. I remember at rounds the day after the study, the pediatrician said it was up to Dr. Kays but he thought she was going to have to have the surgery. But when Dr. Kays came to talk to us he said he thought she would be okay without it …. what a relief!!!! He said he was taking into account that Dakota was RCDH so her stomach was never out of place, so he was already leaning against the procedure for us. The procedure is very common and lots of CDHers have it, but I was glad we escaped without it. Also, I am a little confused because many babies still throw up after the nissen procedure …. if someone could shed light on why, I am very curious.
Anyways, instead we got to go home on reglan and zantac as well. Dakota also really learned to like her medicine. We never increased the dose, we just let her grow out of it. At her peak she was throwing up or having attacks 5 or 6 times a day, poor baby. Now, it is like once every two weeks. I first phased out her reglan, then I phased out her zantac. I still have a little zantac in the cabinet just incase, but she seems to be doing fine.
We don’t have CDH, but I can talk about Prevacid. Alaina used to take it, and Alyssa takes it now. It comes in pill form and is broken down in water or formula. You need a slightly larger nipple to get thru, and if you are using Alimentum- you have to dilute the pill in water- NOT the formula. It mixes weird. with Alaina, I had no problem getting the medicine in her. I put it in one ounce of formula and boom..done and done. With Alyssa, she uses Alimentum- so I can’t put it in the formula. I use a small medicine bottle– but a lot is left after she drinks it. Apparently, this is ok– the doctor says it seems like more than it really is. Either way– about 4 days after starting the Prevacid- both girls did so much better! I swear by it!!