Tuesday, October 11, 2011

The Reflux Monsters

The Reflux Monsters. Two live at our house. They live inside of sweet, smiling, happy babies and make them unhappy, screaming, hurting babies. They make babies cry; they make mommies cry.

Here's the whole feeding and reflux story, from the very beginning.
First, just the general chaos of feeding twins:

You can't imagine the challenges of twins, especially in those early days, unless you've had twins yourself. The hardest part in the beginning was getting both of them FED. Before I actually had Asher and Eli, it seemed simple enough to me: When one was hungry, feed him, and then wake the other to feed him, too. Simple, right? NOT. For starters, feeding just ONE tiny baby early on would take at least 30 minutes, sometimes as much as 45 minutes, since they were little and still learning to suck. So I'd get the "hungry one" up, start feeding him, and like clockwork, "the other one" would wake and start crying. Now what? I can't get to him since I'm feeding his brother! My solution was this crazy little dance, where I'd have a 7lb baby in one arm, holding a bottle in his mouth with my face, while holding a paci in the mouth of baby #2 with my "free hand", trying to hold him over (for up to 45 minutes!!) until I could finish feeding #1 (and start the 45 minute feeding process over with #2, even at 3am). Seems comical looking back on it, but I haven't forgotten how consumily stressful it was to do this every 3 hours of every day for the first month of their lives.

The moral of the story is, I can now very much appreciate how much those tiny babies have grown in these last 4 months! They are now experts at feeding themselves with the help of bottle proppers, and will soon enough be holding their own bottles. I can also appreciate the 10 hours at night where there are no feedings. Crazy to think that a few shorts months ago, they had 4 feedings in the time they now have just one! When we first brought our babies home, I recorded how much they ate to make sure they were getting enough nutrition and so we could report it to the pediatrician if we saw any problems. They ate about 1/2 an ounce at each feeding in the first week (and it took them 40 minutes)! They now drink 6oz in one feeding, only about 15 mins! Big boys!!

But, the reflux monsters are trying to ruin this progress for us.

The one thing that really hasn't gotten easier for all 4 of us is the acid reflux :( My poor angels. It's been a long road already, and they aren't showing signs of growing out of it anytime soon. This might get long, but I want to write down their story to keep as a record and to be able to share with anyone else struggling with a reflux baby (or two!), because I know hearing other peoples' stories is something that's really helping me get through it.

The first 2 months or so of feeding our babies was hard since they had trouble sucking, and we hadn't yet figured out how to feed two babies at once, as I described earlier; but all-in-all it wasn't so bad. However, starting around 2 months old, we really noticed some changes for the worse when feeding Asher and Eli. It started out as simple crying while being fed. We didn't think much of it, just maybe that since they were awake more that we were starting to see their fussy side. We didn't really notice it was only at feeding time since they were usually only awake long enough to eat and go right back to sleep anyway.

However, it progressively got worse, and I started to make the connection that it must be something wrong with their food. Gas maybe? So we got those mylicon gasdrops. This seemed to work for maybe a day or two, then right back to crying while eating. Although the "crying" while eating had now grown to screaming, pushing away their bottle, refusing to eat, etc. We then tried "gripe water" and "colic calm," both promising to soothe fussy babies, especially due to gas and tummy troubles. Neither of these helped, and I was just convinced that they had the worst gas ever. So we started switching up their formula. The babies came home on Similac Sensitive and some breastmilk (when I found time to pump- ha!). They seemed to do fine on both, but the more I switched over to formula, the more constipated they got. So we switched to formula #2: Enfamil newborn, which is supposed to be sensitive for the little newborn tummy as well. We didn't see a difference, so we tried #3: Enfamil Gentlease, promising to reduce fussiness and gas in just 24 hours! Woot! But, as with the other medicines and formula switches, we'd get a "honeymoon" period where we saw a change for the better for maybe 1-3 days, then it was right back to horrible crying and trouble eating. We tried burping them more (a LOT more, like after every ounce!) to elimiate the "gas," but little did I know, gas wasn't the culprit, so it was doing no good!

The pediatrician recommended trying soy formula because it might be easier to digest, but he swore up and down that it was the mysterious "colic" and could do nothing but promise it would disappear by 4 months. While I believed him, I also wasn't going to wait around for the next 2 months to "see" if it would go away. The fact was, my babies were hurting and I'd try anything out there to help them until the four months was up. Formulas #4 and 5 were Enfamil ProSoBee (soy) and GoodStart Soy. No luck.

I was doing some MAJOR Google searches at this point, desperate to find out what was "wrong" with my babies. Lots of crazy things went through my head during these hard times, being that I was in a desperate place. Why were my babies "broken," why am *I* the one with colicky babies when twins are already so hard as it is, what if I'm stuck in this "colic H-E-double hockey sticks" forever (obviously this wouldn't be true, but like I said, I was desperate, and it was hard!) I got the idea that maybe they had some sort of milk or soy allergy, so we switched to Nutramigen because we've heard from several people that this seemed to "cure" their babies. That was formula #6, didn't work a bit. It was just expensive and smelled bad. I scheduled multiple pediatrician appointments only to get told over and over that it was colic. I cried to our doctor, who just reassured me that my hormones were crazy at this time, and I was still adjusting to life with twins. While I knew something more was going on, he had been a pediatrician for 30 years and probably had seen this 100 times, so I just took his advice and took one day at a time.

A break came during one of my Google searches when I found a mom's story that was eerily similar to mine (although she was only going through this with one baby ;). Turns out, her baby had silent reflux! Same pain and feeding troubles, without all the spit up! AH-HA! This had to be it! Along with her story also came her explanation of how long it took her baby to get diagnosed because there were no real outward symptoms, just her word to her baby's pediatrician that he cried during feedings. The doctor kept proclaiming it was colic. That's when I knew I was in her boat; all this time I thought I was dealing with gas or "colic" and it was REFLUX! I did some more Google searches, and found that Dr. Sears believes most "colic" cases are actually mis-diagnosed silent reflux cases.

For our next step, I got a prescription for Zantac from Eli and Asher's pediatrician when they were around 3 months old. (Well actually, I broke down, cried, and Dan basically begged for Zantac even though our doc was still in the mindset that this was all just colic and stressed out new parents. And why would he not think this, since Eli was eating his bottle like a little angel in the office that day, of course! Luckily, our pedi just left the decision for meds up to us so it worked out). The FIRST DAY on Zantac we were noticing a difference, even though the medicine can take up to a week to work! PRAISE. THE. LORD! Seriously! I finally had normal, happy babies! We also switched to Enfamil AR, which is thicker for reflux babies, but mixed it with Gentlease to keep gas at bay as well (formula #7). Those first 3 weeks on Zantac and AR were awesome. Asher and Eli really started smiling and playing during that time, I could go places with them, and we felt like this is what things were *supposed* to be like with 2 cute, sweet babies.

However, as the days passed, the symptoms slowly crept back up. They crept up so slowly that I didn't notice it had gotten bad again until all 3 of us were having a meltdown during a feeding time, and I realized we were back to how it was a few months prior. And by now, the reflux was no longer "silent." These babies were now full blown "milk fountains" as Dan called them. The spit up just never stopped. So I called the doctor and got the prescription doubled. This didn't work either. I then called the get the meds changed to something else since Zantac was no longer having an effect. After being told that "there's nothing we can do for spit up," I replied that this isn't about the blasted spit up. I don't care how many times we go through outfits and burp cloths, we need some healing for these babies. After 4 months, who knows how raw their poor little throats must be. The babies are now on Nexium. It does seem to work fairly well most of the time, but they are still having trouble with grunting and always seem to try to "clear their throats" by screeching. I have an appointment with a Pediatric Gastroenterologist for Asher (his reflux is worse) in 3 weeks. While the Nexium is somewhat working, I'm not sure what this doctor will do. Maybe Nexium is all he can do for now until they grow out of it; maybe he can work some miracle and get them feeling even better. It's just been a super tough 4 months for babies and parents, so pray that we'll get some real answers at this appointment so we can continue to enjoy our happy, otherwise healthy babies!

So in case you've been wondering why I haven't blogged in the last 3 months, there's your answer! We've been quite busy and overwhelmed, but fortunately have managed to have some great times with the boys in the meantime. I'll be sure to make sure the next post full of happies and smiles and rainbows and....PICTURES, rather than this sad reflux business. But like I said, it's important to me to document this time so we can see how far we've come as a family and to possibly help others with undiagnosed reflux babies!

Love you all!

“O Lord my God, I cried out to You, and You have healed me.” Psalm 30:2

(^ I chose that verse because, boy, have I done some crying out to the Lord over this reflux! And He continues to help heal my babies!)

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