Surviving baby reflux

When McKinley was born it was the most incredible, surreal moment of our lives. After 9 months of pregnancy and 17 hours of labor she was finally here: 7 pounds, 2 ounces and 20 inches of teeny tiny beautiful perfection.

We had done everything by the book to prepare for McKinley. I had made a very conscious effort to eat healthy while I was pregnant and put on an appropriate amount of weight as well as exercise according to what my body allowed. Mike and I read the baby books to help emotionally prepare ourselves and even watched a very interested DVD on childbirth (interesting...). We had her room all set. The crib with the cute pink sheets, the pack 'n play for when we went to visit Grandma and Grandpa, the co-sleeper for the first few months to sleep by my side.  What we didn't have were instructions for how to help a sick baby.

When we were in the hospital McKinley was handed to me crying like a normal, healthy baby. We did skin to skin and attempted breast feeding which she took to pretty well at first. The nurses then took McKinley for the first round of tests and checks to make sure all was clear.

Mike and I relaxed and reveled in our new role as parents. We were so blessed to have a baby with 10 fingers and toes, fully developed organs, and a beautiful little face that could melt your heart. We were happy.

When she was brought back to us an hour later she was peacefully sleeping. We just watched her in awe. When she woke up I tried breast feeding again and as a first time Mom I had my challenges with it but she managed to latch on enough. The nurses came back another hour later to do her hearing check. We handed her over, sad to see her go but glad for a few moments of rest.

It wasn't until that evening that we were first introduced to the challenges we would face for the next year. This wasn't our beautiful little baby peacefully sleeping by our side. This was a someone else. This was screaming nonstop for hours on end. This was refusing to eat and never being satisfied. The nurses at one point refused to keep McKinley in the nursery because they couldn't calm her.

We spent the next several months in our version of Hell. McKinley screamed endlessly and as a mother I've discovered few things are worse than being powerless against your child's misery. Mike used the majority of his vacation for the year to stay home to help me since our families were both in different states. We were in this together. We were in this alone. We were in Hell.

At one point after about 2 weeks of being home McKinely absolutely refused to breast feed. Defeated and depressed, I resorted to formula, discovering later on that McKinley had a powerful milk protein allergy.  This lead us to trying out various formals and we landed on Nutramigen, one of the most expensive formulas on the market. Mike and I sighed in exhausted relief believing we had found the source of the problem. The endless days and nights of screaming would surely be over.

We were wrong.

Although McKinley had improved in some areas, she was still unhappy and not gaining much weight. We started noticing she was lying in a pool of her own drool any time she was on her back. We took this news to her doctor when she was about 2 months old who diagnosed her colic. But Mike and I didn't rest. We had read about colic and this didn't seem right. She wasn't crying for a few hours each day, or even half of the day. McKinley was screaming all day and all night until she exhausted herself into sleep for a few hours. So we sought additional help.

I took McKinley to another nearby hospital for a second opinion. This doctor agreed that something else was wrong. She had a number of tests ordered and what happened next will remain one of the hardest experiences of my life. I held my 8 week old daughter down on a hospital bed while two lab techs took her blood, for over an hour.  Since McKinley was only 8 pounds at the time it took every ounce of blood they could squeeze out of her in order to fulfill all the test tubes. We both went home in tears that day. I rocked McKinley back at the house as she slept and continued to cry.

After waiting a week (which felt like decades) for the test results, we were relieved once again to find there were no abnormalities in her blood. This doctor as well diagnosed McKinley as colic.

But that was not enough.

Frustrated and beyond tired, Mike and I took McKinley back to the our first doctor to argue our case once again. This time, she had an answer. McKinley had reflux.

Silent reflux. This reflux doesn't smack you in the face like a normal reflux might. She wasn't projectile vomiting or spitting up regularly. Her reflux was hidden. It would sneak up into her throat, sit there and burn. Hard to detect, and horrible for McKinley.

The next morning we were in St. Louis, a four hour drive from our hometown, to see a gastroenterologist specializing in children. This doctor would be our saving grace. After examining McKinley and doing several tests and trying out everything from zantac to prevacid, we landed on Nexium, a $100 per month prescription which entailed mixing a 5ml packet of granules with water and distributing it into McKinley's mouth with a syringe every morning and evening, disallowing food for 30 minutes before and 30 minutes after  to let the medicine set in.

After about a month on the Nexium, McKinley started to do better. She was eating more, sleeping better, and gaining weight. She was still a fussy baby and the colic wouldn't wear off until close to five months of age, but the endless screaming in writhing pain was over. Mike and I could breathe again.

Nothing prepares you for a baby with health issues. We thank God every day McKinley's issues will go away in time. She doesn't have any lifelong devastating physical or mental debilitation. I pray for the mothers and fathers dealing with worse, because this was our version of Hell. A sick baby who can't explain their pain and what is wrong...  as a mother, I can't explain how difficult it is to feel so helpless. To those moms out there now dealing with reflux, I empathize and sympathize with every ounce of what you are going through right now. A child who screams day in and day out without rest. We survived our Hell and McKinley is thriving now at 11 months of age. She was colic on top of her reflux, which made it all the more difficult, but that has since passed. She is on nexium for what we hope to be the last month of her life. She smiles every day now and is excited to greet the day. And so are we.

Below are a few helpful tips that we came across to keep McKinley happy:
1. Sit her up when she eats to keep the food down - gravity is your friend
2. Baths were the best place for McKinley. They still are! It helped calm her tummy and relax her.
3. Happy Bellies Brown Rice with DHA and Probiotics - this was the only rice that settled well. We used it to thicken her formula so it wouldn't come back up so easily.
4. Talk to other Moms. This was probably the best thing for me. Other Moms who have been in similar situations can help! If nothing else they can give you something to relate to and remind you that you ARE NOT A BAD MOTHER. Being a parent is the most challenging job out there. Anyone who wants to argue with me, just try :)
5. Take breaks. If you have help available, rely on them. Since we didn't, we gave one another breaks. I took a nap when Mike came home, and we would take turns depending on who was more desperate.
6. A vibrating bouncy chair. This was the only apparatus she liked to be in while awake.
7. A Rock 'N Play Sleeper. She never slept in her cosleeper. The incline of the Rock 'N Play helped combat her reflux.

8. Stay strong, it does pass. At 11 months old we can finally tell she is getting past it. We are sticking with the nexium through the end of the month when we see her G.I. and by then she will give us a less potent prescription to help ease McKinley off of it.