After such a stressful pregnancy, we were so thrilled that Eli was so healthy. When we had originally thought he would spend his first few months of life in the NICU and we were going home from the hospital, healthy, and just 2 days after being born.... what more could we ask for?! There were a few things we had to check in to. Eli had a hip-click. The pediatrician wasn't too concerned at first, but after finding out that I had previously had 4 hip surgeries, she referred us to see a pediatric orthopaedic doctor. We saw him several times and he felt sure that Eli had loose joints but they were nothing to worry about and released us from his care.
Our next trip to a specialist was a referral to a pediatric cardiologist. Eli had a heart murmur and his pediatrician wanted us to have it checked out. If you don't know my family history, here's a little background.... My dad had his first heart attack at 38 and passed away at 45 from his second. And virtually every uncle on my dad's side has also had heart attacks or serious heart problems. So, this referral obviously had us very nervous! We were informed by the cardiologist that Eli has a "musical" murmur; it is completely harmless. He did, however, find a collateral fistula. He explained this as an extra vein at the back of Eli's heart that dumps blood into his lungs. So, we are monitoring this to make sure that it does not change. Sometimes they get smaller, sometimes they stay the same, or sometimes they get larger. If is does get larger, the cardiologist will need to close it off. So, we just go for regular check ups every 6-12 months to monitor this.
Other than these few things, the first few years of Eli's life were fairly normal. The occasional cold or upper respiratory infection, but nothing too major. But eventually, the respiratory infections became more frequent. There were several times that he ended up with pneumonia. It seemed like Eli was constantly on antibiotics. Every time we went to the doctor, we were sent for more chest X-rays or a sinus series or lab work. The pediatrician finally made the decision to test Eli for cystic fibrosis. Talk about being terrified. It took three separate tests to finally come back with a definite negative. Even though we were obviously releived with this, there was still the question of "Why is he always so sick?". This is a question we still don't really have any answers to.
Then one day, I think sometime in August 2010, Eli had another respiratory infection. The only thing different about this time was the major effect that it had on Eli; it was like it happened over-night. Eli suddenly stopped eating, talking and sleeping. Having a child that was using many words and communicating fairly effectively suddenly revert to grunts and points as his only form of communication.... we were in shock. It was about 4 months before he ever said "momma" again.... 6 months before he said "dadda". The sleeping was wearing us down. Going from sleeping through the night since he was 4 months old to waking 5, 6, 7, 8 plus times a night, having scream-filled night terrors and sleep walking on an almost nightly basis. Adam and I became like zombies. Then the sleep walking began to happen during afternoon naps. But all this was a drop in the bucket compared to the eating. Eli had such a healthy appetite. Even though he was still on baby food and Gerber snacks, he always ate so much! Two veggies, a fruit, a yogurt, cookies, puffs.... all in one sitting! Then one day.... nothing. The next day, still nothing. And the next and the next..... nothing. Seven days later, he finally ate a little bit, but not nearly enough to make up for a week of not eating. This trend continued for several months.
Finally in November 2010, Eli was referred to a GI doctor. He ordered a GI scope and colonoscopy. He also pulled fluid from Eli's pancreas and biopsied his intestine. The onyl thing the doctor found was an amalayse enzyme deficiency, the first he had ever seen in his 20+ years of work. The solution, a pill form of medication to be taken with food. FYI, when your child is not eating..... this is a little difficult. We soon gave up on this medication and began focusing on Eli's eating. We had the help of feeding, occupational and speech therapists through ECI. Even then, progress was basically non-existent. By March 2011, Eli was 2 years old and barely at 19 pounds; and that was on a good day. He was still having periods of time, sometimes 7-8 days in a row, that he wasn't eating. We had numerous trips to the emergency room for dehydration and severe constipation. It was at the point that the GI doctor said it was time to do a feeding tube.
As scary as this was, it was also a saving grace. The couple of months before Eli got the feeding tube, Adam and I were a mess. There were times that we were terrified to let him sleep alone, afraid that we would go into his bedroom in the morning and he would be gone. After the feeding tube, things were still scary for a while. He was on 10 hour continuous feeds at night, so he would start crying in the middle of the night and we would go into his room to find the cord wrapped around his neck. We slept with him most night just to ensure that he didn't get choked. But, soon after getting the feeding tube, Eli began to talk again. He began sleeping better at night. But the eating never got better.
It's been just over a year now since Eli got his feeding tube. While his weight is more consistent, he has stopped spoon feeding. The one thing he eats: Go-gurt.... specifically Go-gurt. The little steps.... Eli ocassionally puts a cookie to his lips. We were ecstatic when he ate a sucker! We've learned to celebrate the small victories and keep pushing for more improvement. Maybe one day he'll get there. We have faith.
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