Sleep has been a hot commodity around our home since my son’s birth. The first night home from the hospital I swear he barely slept a wink. I was all set to soothe him to sleep. We had two rocking chairs, I’d been working on my lullabies, and I had made a wrap that I could wear him in as I walked around to lull him to sleep. Nothing worked. Looking back, I guess we should have known that. NICU babies have a hard time sleeping at night because in the hospital things are going on round the clock.
In time the sleeping got better. Then at about three months it started deteriorating. It wasn’t bad at first. Max would go to sleep around 8pm and then wake around 1am and proceed to fuss and cry for 2-3 hours. I could bounce and sway him to keep him from fussing, but he wouldn’t go to sleep. The minute I laid him down he would fuss and arch again. But after a couple hours, he was out like a light. Before long, Max’s sleeping had deteriorated to: sleep three hours, awake until 6 or 7am, take long naps all day.
Every two or three weeks he had a good night. We tried all kinds of things to remedy what we thought might be causing the problem. Each time Max had a good night we got our hopes up thinking that we had finally figured out the problem! Within a day or two we realized we were wrong. We took him off of the continuous feeding pump that fed him over 8 hours and did gravity-flow feedings every three hours. We tried feeding over an hour with the pump to give him a consistent flow of food. The worst was the weekend my husband was out of town for work, my mom was babysitting my nephews, and my in-laws were at a conference in Florida. I was all on my own and Max wouldn’t sleep a wink. Friday night he was awake for 10 hours straight, and Saturday night for 12. On Sunday, after not sleeping all night, I couldn’t get him to sleep for more than an hour and a half at a time. I was at the end of my rope. I took him to the doctor first thing Monday morning. He still couldn’t diagnose the problem.
A couple more weeks of poor sleep went by, all the while he was vomiting (via his feeding tube, because his surgery – fundoplication – prevents him from vomiting naturally) during or immediately after nearly every feeding. Everyone (doctors, nurses, other mothers, etc) kept telling me: “some babies spit up, some babies spit up a lot.” One day his “spit up” was a yellow liquid. Now I to this day don’t know what that was, maybe it was just some nasal drainage he had swallowed, but to me it was the straw that broke the camel’s back. I called the doctor immediately where I was treated like an over-reacting mother. “He just has a cold,” she said. My husband was out of town and I cried to him on the phone. Papa bear kicked in. The next day we had switched to a new pediatrician and had an appointment for a gastric emptying survey. Turns out his stomach muscle wasn’t moving. We were literally pumping him full of food every three hours. No wonder he couldn’t sleep.
I was told that this is common of kids who have fundoplication surgery because it manipulates the stomach muscle. Why wasn’t I told about this before the surgery? Why wasn’t I given any options in the situation. I wished my son could eat on his own and determine for him self when he was full. I know it was all to protect him from pneumonia, but it is just such an unnatural system! Max began taking another medication to stimulate his stomach muscle. As a bonus, it also knocked him out at night…or so they said. We fiddled around with the dose to get it just right, and we were in business. Max was gaining again. But still not sleeping.
Again we tried everything we could think of. Probiotics, breast milk fortified with formula, formula made with partially digested proteins, quitting probiotics, dairy-free breast milk. He had good nights here and there but over all still not sleeping nearly as much as a baby his age should. Even as he was taking three medications with excessive sleepiness as the primary side effect. Co-sleeping allows me to rest at least while Max is in REM sleep. I wouldn’t survive without it.
Even today we get our hopes up. Two days in a row of great sleep! We thought we were in the clear. The third night? Crash and burn…awake for 8 hours. If all else fails I guess I can sleep when I’m dead.