I had many ideas about how I wanted to do things when I had a baby, but the universe never got the memo. I had spent my entire pregnancy reading up about pregnancy and babies. I knew I wanted to breastfeed and feed him nutritious organic baby foods. I was going to fill him full of super foods! I had such plans.
In reality, Thomas could not latch on to breastfeed. That didn't stop me; I figured I'd just pump exclusively. Let me tell you, that is double the work. You wash all the pumping apparatus and then you wash all the bottle stuff too. And my tiny 1950's kitchen does not have a dishwasher!!! Plus you have the time invested in pumping the milk, usually while trying to hold/entertain the baby. Yikes. It was a lot. I don't regret it for a second though. Thomas got his first ear infection when he was 16 months old and I firmly believe it's because he was breastfeed for so long. I was able to keep it up for his first 11 months.
Tom had his first surgery when he was two weeks old and it really didn't slow him down that much. But the older he was, the harder the surgeries were on him. He had his second surgery a month later.
Here is a plump three-month-old Thomas. At this time he already had two surgeries under his belt.
In January 2010, he had his third surgery and around this time he started to have trouble gaining weight. He had been in about the 20th percentile for weight for his first five months.
But after the surgery in January 2010, he had another in February and then another in March. By March 2010, he had completely fallen off the growth charts and was diagnosed with Failure to Thrive.
No one likes to be called a failure. I felt like I had failed him and it really had me scared. We started supplementing my milk by mixing prenatal formula into it to add more calories to his diet. Then Thomas began refusing bottles. It was such work to get him to eat. The next several months were spent trying everything to get food into Tom. It was so frustrating. I would make him healthy smoothies and put them in bottle but he wasn't interested. We tried so many different tastes hoping we would find something he liked enough to entice him to eat. I used to take baby yogurt (full fat) and thin it out and add it to his bottles for additional protein. That was one thing that he would accept.
Using a mesh feeder to get him to taste some fruit.
We were also trying to introduce some solid foods into his diet at this time. It was a complete disaster. He would take several small tastes and then refuse. I tried everything and could never get him to eat a full meal.
We spent the summer of 2010, in a constant state of worry that Thomas was dehydrated and we did end up in the hospital a couple times because of his refusal to eat. We rarely went anywhere that summer because we were worried about him dehydrating in the heat. At this point, his eyes were stable and we were being monitored by a retina surgeon and pediatric ophthalmologist here in Pittsburgh. So we were completely focused on the food crisis at the time.
We would have a week or two of normal eating and then days of refusal where he would take less than 10 ounces of food a day (at 10 months old that is nothing). I kept detailed food diaries on Excel spreadsheets of everything Tom ate and how much to fax to his doctors.
Our pediatrician mentioned that a feeding tube or G-tube might be our best option. We were quietly horrified by the idea. Another surgery? And a feeding tube just sounded so extreme and we sure it was unnecessary. We had extensive testing done including an Upper GI, swallow test, feeding evaluation, and a flat abdominal X-ray. They all showed him to be completely normal. Since there was no physical reason for his refusal to eat we can only guess that it is due to undiagnosed reflux that resulted in a food aversion. If it hurts to eat you are going to avoid it, right?
In late August 2010, we were back in the hospital for dehydration again. We knew we were scheduled for an eye examination under anesthesia in early September so we asked if they could give him the G-tube at the same time. Everyone agreed.
They sent us home from the hospital with an NG (nasogastric) tube to feed Thomas with. I thank god that we only had to use the NG tube for one week until he got the G-tube because that thing stressed me out. The tube is placed by a medical professional but you must use a stethoscope to make sure the tube is still in the stomach and hasn't made it's way into the lungs before putting food into the tube. You certainly don't want to be pushing food into the lungs!! Aside from the stress, for the first time in months we knew he was getting enough food and that felt great.
It was a hard decision but it was the best decision we ever made. In September 2010, just weeks before his first birthday, Thomas got his G-tube. He was up and crawling around in his hospital crib just hours after the surgery. He's a tough little guy for sure. It is six months later and he is back on the growth chart. We don't spend all our time trying to force a bottle on him, so he is happier and so are we. We are currently working on getting him to eat solid foods and drink by mouth. With the help of our nutritionist and occupational therapist from Early Intervention we are making progress. It has been a long road but now we know he is getting the nutrition he needs. And that is a huge relief.