Part 9 - A Year in Holland - The Era of No Sleep

The first night we took Mason home, we didn't sleep. At all. The sleep monitor kept going off because the leads stuck to his chest kept coming off - we couldn't get them to stay on. *I* couldn't sleep because we couldn't get the monitor to work correctly and I was too afraid to close my eyes and leave him unsupervised.

That was the beginning of the period of my life that I shall forever call The No Sleep Era.

Now, every parent of a newborn goes through a period of time when they are barely sleeping. With my first born, he woke up every 2 to 3 hours to nurse in the beginning and I felt like I would die. He gradually got better, though, and within 4 four months, everyone was sleeping. Bliss!

With my second born, we weren't quite as lucky. She woke up every night her entire first year of life! The good thing about Lia was that as long as we brought her into bed with us, she'd go back to sleep. So we had to get up, but after around 8 months or so she stopped eating during the night so all we had to do was get up, get her, and bring her into bed. It wasn't great, but it was manageable. Hell, I would have slept standing on my head in the middle of my front lawn if it meant getting a decent night's sleep.

Being sleep deprived with one kid is difficult. Being sleep deprived with TWO kids is something entirely different. I mean, let's be honest, there's a reason sleep deprivation is used as torture, right?

So, if being sleep deprived with one kid is difficult, and being sleep deprived with two kids is something entirely different, then being sleep deprived with THREE kids, one of whom has special needs, is one step away from the men in the white coats coming to take you away. Something really terribly bad happens to the human brain when it is severely sleep deprived.

For the first 9 weeks of Mason's life, I lived in fear every day that he would choke to death in my arms. He choked any time I put him down, even on his belly. His eyes would roll into the back of his head, he would start to turn bright purple, and he would flail his arms around helplessly as if he were drowning. He essentially was drowning every time he refluxed. You see, because of the cleft in his palate, he had a big hole inside his head. There was nothing blocking his nasal passage so every time he refluxed, his throat and nasal cavity would fill up and he would stop breathing. He was still much too little to help himself and the only way we could help him was to flip him over onto his belly and bang on his back, and if that didn't work we'd have to suction his mouth, throat, and nose. This happened about once an hour nearly all day, every day, for the first nine weeks of his life.

I have never been so scared in my life as I was those nine weeks. I remember saying to Jamie:

"What if he dies, right here, in our arms, in front of Andrew and Lia?"

And Jamie responded:

"We are doing everything we can. You have to have faith and trust that we are doing absolutely everything we can."

I began wearing Mason in a sling every minute of the day. It was the only way I could keep an eye on him and still be a mother to my other children. I cooked with him in my arms, napped with him in my arms, and yes, even used the bathroom with him in my arms. I had to, there was no other option. Putting him down meant choking.

Jamie and I took shifts sleeping. I'd sleep from about 9:00 p.m. to midnight and Jamie would stay up and watch over Mason. He'd come get me so he could get some sleep (he worked all day, I was on maternity leave) and then I'd stay up and watch over Mason.

We ended up buying something called a Tucker Crib Sling and that really helped us. If you don't know what it is, and don't feel like clicking on the link, it's this big, foam, mattress-like slope with a baby onsie sewed in. You strap the baby into it and the baby essentially sleeps almost standing up. It is made for babies with acid reflux disease. I found it when I was doing some research online one night and was desperate enough to try just about anything.

The Tucker Crib Sling did help. Mason could tolerate it for an hour or two at a time, which was amazing. He still had to be hooked up to his sleep monitor and he still had to have someone right next to him at all times because he still choked while strapped into the Tucker Sling, but he was able to tolerate it better than anything else we had tried so we considered it a victory. A small victory, but a victory nonetheless. Of out a 24 hour time period, Mason spent probably 5 to 6 hours in the Tucker Crib sling (heavily supervised) and the other 18 hours of the day in someone's arms. We were, quite literally, in total survival mode.

It's funny, so many people said to me during that time: "I don't know how you are still functioning" "you must be so tired" "how can you even walk upright?!" And to be honest, looking back, I don't really know how I did it. At the time, Mason's survival trumped all else. I knew I was sleep deprived past the point that is healthy for a human being but my brain must have tapped into some kind of sleep reserves because I could NOT not function. It wasn't an option, those cards weren't on the table. I had to be on high alert every minute of every hour of every day. Mason had to be protected and I am his mother. Nature and biology dictate that I, above all else, had to protect him. And so with lots of help from Jamie, my niece Kelsey, and my sister Sharon and her family, that is exactly what I did.

Now, while all of this was going on, I was making weekly calls to doctors and nurses asking, begging, pleading, for someone to help. One afternoon I made a phone call to Boston Children's Hospital and somehow got connected to a neonatal nurse who heard the absolute desperation in my voice and finally, FINALLY, we were put on a path that would end this horrific period in our lives.

We were referred to a G.I. doctor at one of Children's Hospital floating centers in Waltham, MA. They did a barium scope and looked at Mason's anatomy to see if there was any abnormality there, besides the cleft, that could be causing these episodes. After determining that everything looked normal, we talked about our options.

I explained that he was held in someone's arms 18 hours a day, that he couldn't be left unsupervised for even 45 seconds, car rides were awful and he couldn't ride in a car without someone sitting in the back seat with him. When he wasn't in someone's arms, he was sleeping on an incline so steep he was practically standing. He was on reflux medicine. There was nothing left to try. The doctor mentioned a drug that she wanted to reserve as an absolute last resort. It was known to have neurological side effects but she said with Mason, the risks of those side effects may outweigh the risk of doing nothing. But before that, she wanted us to try thickening his formula - putting rice in his bottle.

Now, in my 7 years of being a parent, I had done entirely too much research on absolutely everything related to parenting. And what I didn't research, my other Mommy friends did and shared with me. For 7 years I had it drilled into my head that putting rice cereal into a 2 month old baby's bottle is just about one of the worst things you can do. I realize that most of us 30-somethings grew up with our parents giving us rice cereal in our bottles to make us sleep longer but this was 2009, we were smarter than that now! We knew better! Why was this doctor - this Boston Children's Hospital doctor no less - instructing me to do this? Is she crazy?

I battled with myself for about a day and finally, with the help and support of a very smart and insidious friend, I decided to give it a try. I added 1 TBSP of rice cereal per every 2 ounces of formula to his bottle and hoped for the best.

Mason's life changed that day. For the first day of his life, he didn't choke once. HE DIDN'T CHOKE. It was a miracle! He had the most comfortable and peaceful day of his life up to that point and Jamie and I exhaled for the first time in 9 weeks. We were, hopefully, closing the worst chapter of our lives.