1st hospitalization

We were admitted to our local children's hospital September 11, 2009. Noah just turned 3 months & weighed in at 7 lbs. They told us we would probably be there 5 days while they ran tons of tests trying to figure out why he was refusing to eat. He had an Echocardiogram that showed he had a murmur and a PDA & PFO. This won us a ticket to a cardiologist, but wasn't a reason why he wouldn't eat. As we got settled in our room, people were flowing in naming things like cancer, reflux, diseases I never heard of. It was overwhelming & scary.

Next we met with a dietician. That was fun. She read over Noah's chart and said, " he needs to eat more." he was serious. That was her only answer to help us. No shit lady, ya think?! My husband looked at her and said "get out." ha which is funny bc he is so calm & then he's telling this lady whom we never met before to get out she wasn't going to be on our sons team. He told Noah's primary dr we didn't want her back & we never saw that dietician again.

We meet with the Genetics team next. He thought Noah might have Cystic Fibrosis because he was so small and not gaining weight. I told him he was small bc he won't eat enough. So they tested with a sweat test and lo and behold it was negative. So he drew vial after vial after vial of blood, so much so, they had to do it on different days. It was heartbreaking to see my tiny baby being held down, screaming until he was coughing while they did heel prick after heel prick. The next day they needed lots more blood and called in their neonatologist to draw from a vein, this was much easier and faster. After all the bloodwork, he was "normal" in all his testing. still not 1 answer.

Gi was next. He had a pyloric stenosis u/s, normal. He had a swallow study, normal, he had an upper gi, showed reflux, but that was all. He had a gastric emptying scan, showed a slight delay and significant reflux. He wouldn't be scoped until July 2010, which was normal. Again, no answers.

We met with Pt, Ot. His suck was normal when he did eat, Pt determined he had low tone. We were sent home with an order for at home PT. Still no answers to feeding.

We were still waiting for endocrinology to come in, after their testing & waiting weeks upon weeks for testing, all things were in normal ranges.

After 6 days in the hospital, we didn't get ONE answer why. Not a one. He had reflux, but other kids get reflux and eat. Why won't mine? We were frustrated and the only option the hospital offered was placing a NG tube, letting him eat orally what he would, then tube the rest. Their theory was, use the tube a few weeks, he will gain weight, get stronger and would grow an appetite. I said no, thats not enough. There is something wrong, find it. I felt, at this point a huge failure. What kind of mom can't feed their babies?! What am I doing so wrong. We bought millions of different bottles, nipples, changed formulas, feeding positions, a strict schedule, no schedule at all letting him clue us in like normal. Nothing and I mean nothing helped. I admit, I cried, cussed, screamed, even threw bottles. It was horrible. Horrible. It sucked. I can't put into words how much it sucked. there wasn't a day that went by I didn't cry, beg the eating gods to help. Ask why a hundred 1000 times. Noah was shrinking before us. Bones were sticking out, he looked like a damn skeleton. I begged his pediatrician for more referrals, someone had to help. We were exhausted, spent, stressed beyond words. Our relationship sucked. We fought a lot, we were both on edge and we can't take it out on Noah of course, so we took it out on each other. We would spend hours a day trying to get Noah to eat. He needed calories bad, he wouldn't eat. Albert would get 1.5 oz down him, it would be a party then he throw it up and I'd yell at Albert. You fed him to fast, it's your fault. It wasn't, I was scared and we all knew something was wrong Not the best for a marriage I will tell ya that. Our world was breaking apart, this is not what is suppose to happen, this isn't how it should be.

I tried getting Noah into our state early intervention, he didn't qualify. He wasn't delayed enough in other areas to qualify. I was livid.

I made yet another appointment with the pediatrician and said Noah needed a feeding tube. I had had it. Noah needed nutrition. If that meant me getting over my high horse of being a horrible mom who couldn't feed her baby and get them to grow, so be it.

Noah's consult with his surgeon was October 1, 2009. She looked at his records, testing, results and said, " he
needs a tube, I agree." to be honest we were scared she might say no, then what? Watch our baby starve to death, no, no way. Noah was scheduled for a Mic-key feeding tube and a fundoplication, surgery for reflux which that was a whole other story. He would get his tube placed in his 2nd hospitalization October 12, 2009 at 11 am.