You Are A New Mom, It's All In Your Head: Part III

By mid march I was defeated. I put the pump up and broke out the Neosure and rice cereal. Thickening my BM wasn't working.  I was getting less than an oz per pump. Her first bottle with rice she screamed and broke out in a rash. We had seen a speech therapist to evaluate Kwashi's swallow when she had her swallow test. They gave us a can for Thick'it. I gave that a try. She seemed to take to it better. In a few short days I had a screaming infant pooping 12x a day green/black, smelly, mucus poops. Being a new mom never around babies I didn't know any better. But she was eating and she ate for a solid week. As quickly as she started eating she stopped. Kwashi continued to decline.

April brought on dehydration and complete feeding refusal.We were advised to come into Children's Hospital for evaluation. Upon taking her in and the staff placing an NG tube we noticed how utterly uncomfortable she was while being tube fed. Her doctor told us she just had difficulty swallowing. So if she has trouble swallowing and we are now bypassing that function why is she so uncomfortable?  I questioned the staff about her poop, reflux, and her behavior for three days. Nothing was done test wise to figure out her issue. None of the doctors would look at her poop. Interesting enough the nurses, PT/OT, SLP, all said there is something very, very wrong.

We were d/c'ed home, with a NG, with no answers. My mom radar was going crazy. I called another children's hospital and got into a gi doctor that came highly recommended. Our insurance didn't pay for it, I didn't care. So I marched up to the new doctor's office he asked me if anyone had tested her stool. Looking dumfounded I said no. The test to 3 seconds. She tested positive for blood in the stool. He said she likely has MSPI but could not rule out a swallowing issue just yet. The dietician came in we started a plan. Alimentum powder mixed to 26cal/oz. We had the ng to work with. So we were hoping we could find her comfort more quickly. She briefly mentioned plan B and C if the alimentum didn't work. The dietician reassured me she has to rarely go to plan B and just about never went to plan C. 

Evelyn's body had a different take on things. Evey's NG stopped working. She ripped it out and I was done with putting it back in. She drank the new formula for a few days. Her stools improved but her mood did not. I was told to give it to her unthickend for two weeks. That it took time. So I stuck with it. But why did she seem to get worse? After day eight I said enough is enough. Let's go to plan B: Alimentum Ready To Feed, a corn free formula that some kids tolerate better. Well, not Evelyn. We finally went to plan C.... Elemental formula., 50 plus dollar a can formula!!! WTF??? She took to it ok. Her poos improved, her mood picked up, feeding her was only kind of a nightmare. She was gaining weight again. We were happy with the improvement and so was her GI doctor. 

Fast forward 3 weeks later and the feeding refusal started again. She started pooping more frequently, she started screaming more. I started crying more. The doctor told me "It takes time, sometimes 6 weeks." Ok, but why was she doing ok and now not? He also wanted me to start solids sooner rather than later. I didn't agree but there came a point of desperation in me... Maybe she would take better to solids. She was almost 6 months adjusted. What could it hurt?

Haha, I started giving her bananas. We had a ton in the house. She didn't take to them well. She tried a little here and there. Then one day ate a bunch. The following days brought on visible blood in the stool. Super cranky. No sleep. I consulted the doctor and we all agreed it was time for a scope...

We had the scope and it  was.......... NORMAL. I was told to keep trying Elecare. No kids reacts to it. And really start trying the solids. I didn't start the solids. We started thickening her feeds again because after the scope she flat out refused to eat. And oh she ate with the thickened feeds!!! But within a week EXPLOSIVE MUCUS filled poops started again. And we were now starting to slowly put together the puzzle pieces. Her stools tested positive for blood again. We switched to another thickener which causes constipation and more blood. So what was the common link between the two thickeners??? CORN! They were corn based. I asked the doctor about Kwashi possible reacting to the corn in Elecare. I was shot down. My husband and I found a new thicken called GelMix. It pretty much saved us from another NG tube. Kwashi started chowing down on thickened Elecare with GelMix. Her mood improved so much and the blood stopped.

Since we had a "happy" baby, happy for Kwash, I decided to go back to the solids. Next was apple, seemed to go well. Sweet potatoes seemed a win, squash OH YEAH. We seemed on a roll. Kwashi seemed to like the foods. We hit a little snag with carrots. She vomited a bunch on day three. I didn't push those any further. Then "The Great Mango Incidence" occurred. Mangos = Blood in the stool after one bite! Then Kwashi stopped eating her "safe" foods. Started gagging and vomiting when I tried to feed her. She didn't want that food in her belly. No way No how. So here I was with a 8 month old who refused to eat solids and started refusing her bottle AGAIN!!! He doctor just looked confused. I brought up FPIES and his Fellow said... She doesn't vomit... 

By September her bottle refusal drove me so mad I opted for the NG again... But at the same time we also changed her formula for a third time. The doctor wasn't too keen on it. I didn't care what he had to say anymore.