Saturday, February 1, 2014

Little N's first year, Part 3: 4-6 months

Pumping and feeding became very routine after the first three months. Little N graduated to a Mead Johnson nurser bottle with specialized nipples that were long enough to seal the cleft palate.

So essentially, he wasn't completely sucking the bottle, but biting down on the nipple to drink milk. The bottle was also squeezable, so I learned how to squeeze right before he would bite down, and it became a rhythm that was so internal, for both of us, so much that I could almost do it in my sleep. While I fed him with one hand, the other was holding the pump on one side, and then I would switch to the other side. So he would eat and I would pump, at the same time. I finally had a system that was working, and I didn't feel so tied down. And I was MORE than happy to be done with the syringe/tube/pacificier feedings! I began to see the freedom that bottle feeding can bring, as I fed him in his carseat at grocery stores and other places, and he was also getting my breastmilk. The best of both worlds!

But bottle feeding can have a downside. During this time, he somehow developed thrush all over the inside of his mouth. My guess was I wasn't sanitizing the pump devices and bottles/nipples well enough. I felt so bad for Little N! I boiled all the feeding/pumping equipment each night, but the thrush persisted. He was prescribed an oral medication that did nothing. Finally, his pediatrician at the craniofacial team told me to get gentian violet over the counter. This stuff is pretty much bright purple and stains anything it touches. I put just a few drops in his mouth and his entire mouth turned bright purple! But after a day, it wore off, and his thrush seemed to disappear after a few applications.

His doctor visits continued to accumlulate. He had to be weighed every two weeks, seen by the craniofacial team every two weeks, and then still have his regular checkups. I felt like I lived at the doctor, but I just loved all the support I had for Little N, every step of the way. However, there was one doctor appointment I was dreading: the plastic surgeon. The end of March 2013, my husband and I were scheduled to bring Little N to meet the surgeon who would eventually operate on him. I was so nervous to hear what he would say.

The day finally came, and Little N was almost 4 months old. Dr. Martin took a look at Little N's palate and noted that it was wider than ones he usually operated on, but still thought one surgery would fix the problem. He then proceeded to ramble on all the statistics, as doctors do, and of course we were listening as intently as we could. I had my list of questions ready, and remember asking him how he would be able to eat after the surgery. He said amazingly, most babies bounce back very quickly and just a few hours post-op are able to drink from their bottle again. He said about 1% of them end up having to stay longer than one night, that 1% of them end up with a fistula, or small hole, after the stitches heal. Only 1%. There was no way our little guy would be in that 1%, we were sure. And Dr. Martin said he's performed over 200 of these surgeries, so we felt confident in his abilities and he said he would see Little N again right before the surgery.

The next step was to schedule it, which we were not prepared for, but we sat down with the surgery coordinator, Debbie, and chose June 19th, a Wednesday. My husband is a teacher and school would be out for him, the kids would be out of school by then, so it sounded like the perfect day. Little did we know how well we would get to know this Debbie, and the entire plastic surgery office that summer...

So things were starting to fall into place for us. We began thinking about that date, June 19th, often. My mom scheduled a flight to come help during the surgery. Little N's weight gain slowed more and more, as he could not really eat any solids with the cleft. I continued pumping for him and planned to do it until the surgery. Things seemed great, until just before the surgery...

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