Little N's First Year, Part 8: Recovery at Home

When we got home from the hospital, things did not seem to improve as quickly as I hoped. The first day home Little N still never drank more than an ounce of milk, and despite the pain medication, still seemed in a lot of pain. His feedings started out okay, but within a few minutes turned into him screaming in pain, and me crying tears of frustration. His diapers became very dry, and I worried he was becoming dehydrated. The second day home, I called the hospital, and told them my concerns, and they said I was welcome to bring him back in any time, but also told me to keep trying, and to give him soft pureed foods for more calories as well. What I knew for certain: I did not want to go back to the hospital!

So we tried yogurt and applesauce, and even though I couldn't feed him with a spoon yet because his mouth was still healing, he was able to get some down. Things SLOWLY got better, day by day. About one week after, he would finally drink one ounce without pushing the bottle away, and his surgeon saw him for the post-op appointment and told me things looked great. Each day that passed, I began to feel a huge burden lifted. This surgery, which we had dreaded for so long, which kept him in the hospital for three days, which caused him so much pain, was behind us now. Little N's mouth was perfected by a great surgeon. We felt blessed. We could move on and close this chapter in our lives.

I was excited to give him more solids in the coming weeks. His favorite soon became small pieces of soft white bread. The stitches weren't quite healed yet, and sometimes the bread would get stuck on the roof of his mouth, but dissolve after he drank a bottle. I was too worried about scraping the bread away and damaging the stitches somehow. He was loving eating. Things were improving and becoming normal again, until one day, a Saturday, when things were turned upside down once again.

I was feeding him yogurt, his other new favorite. I noticed the yogurt somehow came out of his nose. Now this was a normal occurence before the surgery...because of the open palate, milk or spit up would often come out of his nose. But I assumed that after the surgery, it would be impossible for this to happen anymore. I quietly took him upstairs to his room to change his diaper and lay him on the changing table to look inside his mouth. I was actually a little scared to look inside, because I pretty much knew what I would see. There was a small piece of bread stuck up there, and I gently swiped it away, and after doing so, I saw a HOLE in the top of his palate. A hole. About the size of an eraser tip. I began screaming for Joel to come upstairs. I was terrified, mortified, and I felt guilty, like somehow this was my fault because the bread got stuck up there. I began pacing the room, trying to grasp the reality of the situation. We had barely gotten to 4 weeks post-op, and I'm seeing a hole in his mouth. That 1% of babies who end up with a hole, a fistula is what Dr. Martin called it, now applied to my own baby. How could we be in that 1%? The odds were so small.

I cried, for hours. My body was physically shaking, I was so scared and worried. I prayed to know what to do. Suddenly those wonderful feelings of having the surgery behind us were no longer. It was the most devastating feeling in the world. After regaining my composure, I decided to call the hospital and explain what we discovered. Dr. Martin wasn't there, but luckily a surgeon who happened to be in the room when Dr. Martin was operating, was the surgeon on call for that day. He said he would arrange an appointment to see Dr. Martin the following Monday. That was the best we could do.

So we had to get through an entire day without any concrete answers, feeling hopeless once again. I had to teach a class that Sunday in church to the women, or Relief Society, and I honestly didn't think I would have the strength to do it. But with a lot of prayer and faith, I was. The entire Sunday seemed to drag on forever. I did lots of research online, and found parents who went through the same thing. Some said the hole closed on its own, some said it required a second surgery.

I could not wait to get to Dr. Martin's office the next day. I wanted answers. I wanted to be reassured, to know that everything would be okay, that he wouldn't need another surgery. But mostly I wanted to know how this could happen, how could we be in that 1% of babies. And to find out if it was my fault...