A tale of reflux, expensive formula, and woe

I realized the other day that I've never fully explained Faith's medical history or the reason she's on a special formula. When I was going through the process of endless doctor visits I felt that other moms' stories helped me a lot, so I wanted to write up our whole journey in case it might help others.

When Faith was born, she was very healthy. A day or two after birth she started turning yellow. Jaundice is fairly common in newborns, so no one was too concerned. The doctor decided to discharge us and have us come in the next morning to check her jaundice. The next day she was even more yellow and we ended up back in the hospital so she could get the light treatment to make the jaundice go away. That was a very un-fun 3 days for all of us. Faith had to wear little foam goggles and I couldn't hold her, plus the room was too small for Jeff to stay with us, so he had to drive back and forth.

My little yellow baby

Once in the hospital, Faith's jaundice kept getting worse and the doctors figured out the breast milk was part of the problem and formula would help her get better faster. There is a complicated medical explanation as to why formula helped, but for brevity's sake, I'll skip that. :) So Faith had her first formula (and a bottle) under doctor's orders when she was just a few days old. Once we got discharged, I had to keep her on the formula for another few days. After I got the go ahead to go back to breastmilk (I had been pumping), I was nervous about her not eating enough and the jaundice getting bad again (she was a little yellow for a while), so I stuck with the bottle. That also meant I stuck with pumping.

When you pump, I cry

If you haven't had kids, you may not realize how hard  breastfeeding/pumping can be. It's exhausting and a ton of work (washing the pumping gear plus all the bottles, and pumping takes time!). I pumped for 3 months before I decided that we needed to switch her to formula. In the time she was on breast milk, she was a fussy baby. I thought all babies were fussy, but the doctor thought it was probably a case of reflux. He gave us a prescription for Zantac and we tried that for a while. It didn't seem to make a difference, so we stopped using it.

I started increasing the amount of formula a little bit every day and after she was on mostly formula, my husband noticed some blood in her diaper. Of course this happened on a holiday weekend (Labor Day), so we couldn't just go to the doctor's office and had to go to the ER instead. They confirmed that she had blood in her stool and told us to discontinue the formula and use an elemental formula instead. Luckily I had a large stash of breast milk too, and we picked up some Alimentum at the store and started giving that to Faith instead. The diagnosis was a cow's milk protein allergy.

You found WHAT in my diaper??

After we saw our normal doctor again, he said that the Alimentum should help all of her issues, but she was still really unhappy and refusing to eat. I spent many many hours walking up and down the hall with her, bouncing on the ball, basically doing anything I could to get her to eat. We tried introducing rice cereal early (because the doctor still thought her unhappiness was reflux related), but that didn't help either. Every day was filled with stress over getting Faith to eat. Faith wasn't sleeping well at night and we hardly ever saw her smile or heard her laugh. She wasn't gaining weight and I was sick with worry about our little baby.

I don't want to eat that stinky formula!

Eventually our doctor said that we needed to see a specialist and sent us to Children's National Hospital to see a GI doctor. Our experience with Children's was wonderful. It's such a well run hospital and our doctor is fantastic. Our doctor there gave us an action plan that included relux medications (Zantac and Prevacid) and if that didn't help, a switch to a more expensive formula available only online. If that didn't help, then we had to the invasive testing. We really appreciated that the doctor didn't make us do that first!

All the cool babies go to Children's

We had to order the special formula (Neocate) and the first day I gave that to her, she slept through the night (and every night since then too). Within a week or two, she seemed happy and she was gaining weight again (we were still going to the doctor once a week for a weight check). It was like we had a different baby: she didn't scream for hours, she didn't fight the bottle, and she was so happy! Even though Neocate is like 450 dollars a month, it is worth it to see the smile on her face.

A priceless smile

A couple of months ago, we went back to Children's and were told to start weaning her off the reflux medication and we did that with no problems. Our instructions are to trial in cow's milk next month and if she tolerates that, we can try to switch her back to a normal formula. After that switch, we can begin the transition to getting her on cow's milk. I still have breast milk in our deep freezer, so I'd like to give her that too next month if the dairy trial goes well (I drank cow's milk while nursing, so that's why I had to save it).

So that's Faith's story, I hope no one out there has to go through this, but if even if you do, remember that it does get better and eventually your baby will be happy and comfortable!