I wrote the following entry nearly a year ago, in March of 2010. It's just been sitting here. I now feel the need to post it for a couple of reasons. For one thing, it is a reminder to me of where we have come from, how far we have journeyed in the past year. We've come a long way, baby! And I need to record what we've been through with Ryleigh and her sleep disorder. Speaking of coming a long way, Ryleigh is no longer on iron drops AND she is sleeping soundly through the night almost every night. We have occasional very minor episodes when she is overtired, but other than that, this seems to be something we can now call part of our history. Things really have changed since I wrote this. Thank you, God!
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It's been a hard week. I feel like maybe there have been too many hard weeks over the past two years, but this week has been one of the worst. This is one of those posts that as I sit to write, I know may never see the light of cyberspace. I may just need to get this off my chest. Or maybe I need to release it and ask you to pray over it. *sigh*
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It's been a hard week. I feel like maybe there have been too many hard weeks over the past two years, but this week has been one of the worst. This is one of those posts that as I sit to write, I know may never see the light of cyberspace. I may just need to get this off my chest. Or maybe I need to release it and ask you to pray over it. *sigh*
I also feel like maybe I need to catch a few people up on what is going on in our world, so you can understand the context. I am 16 weeks pregnant with our third child. I have found this pregnancy to be the most exhausting thus far, probably because I am chasing two little ones around. I have also had a hard time sleeping, which obviously doesn't help. That has definitely been worse this time around.
I also feel like there is no relief, no respite from the day-to-day grind of juggling the girls and this pregnancy. Before we moved back to PA, I had friends who I didn't have to worry about owing something to. If I was ready to lose it, either one of them would bail me out and just take my kids for a few hours, or I could at least take the girls over for a change of scenery. And I would return the favor when it was needed. But no one was keeping score, no one worried about who owed who a few hours of babysitting or whatever. No one worried about whether the house had been cleaned within an hour of the other one coming over. You don't know how much I miss that.
Here in PA, I have really struggled to adapt to this new life of ours. A new life in which I am no longer employed outside the home, even part-time. A life where my day-to-day life is a very solitary one. A life that looks nothing like the one I imagined for myself. A life which seems to take far more from me than it gives back, a life that is draining my tank. I am very aware of where I get energy, and I have struggled to find those places here. Forget struggled, pretty much failed.
We have moved to PA, away from friends and support system, away from church home (although we have finally found a new place to call home), away from stable income, away from a home of our own. Our income is virtually non-existant (just ask Uncle Sam), our friends are few and often busy being connected other places, our church is still new, we have started our own business and are facing all of the uncertainty and emotional struggles that entails, and we are renting a house, which while nice, is far from our own. I think we must rate pretty poorly on the stress level scale.
But here's what made this week especially difficult for me. Our four-year-old daughter has struggled with sleep issues since she was about 18-24 months. We were told repeatedly by doctors that she would outgrow them. They were classified as Confusional Arousal. What this looked like in our world is that several times a week, Ryleigh would scream and cry for hours in the middle of the night, never waking up, but certainly keeping us awake. Sometimes she would thrash about, sometimes get up and walk into our room, but mostly just sit in bed and scream. And most of the time, there was nothing we could do to wake her up. Sometimes, taking her outside or running her feet under cold water helped. I wonder what our neighbors thought of all that screaming! Sometimes we could talk softly to her and rub her arms or legs to help her relax. Sometimes it helped. Sometimes nothing helped. And most of the time, Ryan would sit with her through these episodes. But don't think I was sleeping soundly in the next room.
Last summer, Ryan noticed that Ryleigh would stop breathing in the midst of these episodes. She would scream and cry and then lay down and not breath for 10-15 seconds. Then she would gasp for air, sit up, and start crying again. This time, we told the doctor we were no longer willing to believe she'd just outgrow it. We got an appointment with a specialist for November 2009. He listened and asked great questions, and we felt like we were finally going to get somewhere. He ordered an iron test and found Ryleigh had a ferritin deficiency. This is linked to Restless Leg Syndrome, and the doctor suspected that was triggering the Confusional Arousal. Sure enough, once she was on the iron drops, Ryleigh episodes almost completely disappeared. After three years of sleepless nights, you cannot imagine how good it felt to sleep and have peaceful nights. Perhaps you can imagine that we saw a dramatic improvement in Ryleigh's attitude and behavior, a change in her personality even, once she was no longer sleep-deprived.
We returned to the specialist in February and reported how happy we all were and how much better we were doing. He told us to stop the iron and see if Ryleigh could maintain healthy iron levels. I hesitated to follow orders, but also knew that too much iron is a bad thing. We cut Ryleigh's dosage in half to see how she would respond. She had a few minor episodes, maybe 10 minutes or so, no big deal. But we left it at that.
Back in November, the specialist had ordered a sleep study, but they couldn't schedule us until March. Ugh! A couple of weeks ago, with the sleep study finally approaching, we stopped the iron drops completely, so that we could feel like they'd get the most accurate assessment of what was going on. Boy, did they! This brings us to our week this week...
Ryleigh had horrible nights Sunday, Monday, and Tuesday nights leading up to the sleep study. I was sure this was not good, because usually, when she has a few bad nights in a row, she will then sleep good for a night or two because she is so worn out. But never fear, the sleep study was worse than I imagined it would be. Ryleigh was wired with more wires glued onto her scalp that I anticipated, sensors all over her face, chin, and legs, bands around her chest and stomach, and tubes in her nose to monitor oxygen and carbon dioxide. They recorded everything with a video camera and a microphone above the bed. And I got to sleep in the bed next to her. If you can call it sleep.
The bed was harder than hard, so pregnant Momma just could not get comfortable. I tossed and turned, even after Ryleigh somehow managed to doze off. Then the screaming started. I wasn't allowed to touch her or talk to her or console her, just lay in bed next to my baby and watch her scream. And with all the glue and wires, and her hair sticking up all over the place, she looked possessed or something. And of course, her fits were worse as she tried to fight all the wires. This just meant that the technicians had to come in repeatedly to untangle her and reconnect whichever sensors she had managed to undo. Sometimes, she just rolled over in her sleep one too many times and wrapped the wires around her neck. Really, I don't think I slept until at least 3 am. I know that after about four separate episodes, maybe more, I don't know, we both finally slept. And they had the nerve to wake us up at 6 am. First off, Ryleigh sleeps until 7:30, sometimes longer. Lately, so do I. When they came in, I just about burst into tears! We had just finally gotten some sleep, and they were kicking us out!
The one bright spot in my week was the next few hours. After we cleaned Ryleigh up as best we could, I took her to IHOP for a treat. I let her order whatever she wanted, which meant hot chocolate with a mountain of whipped cream on top, and the world's largest chocolate chip pancake with more whipped cream and chocolate chips on top of that. She was so happy! We had a sweet breakfast, no pun intended, together. Then we went home and showered. She stood under that water forever! She likes to stay in the shower for ridiculously long periods of time, but I told her she could this time. Every time I checked on her, she was still just standing there, glue suds still running down the drain. I finally told her she had to wash her hair, etc. or there wouldn't be any hot water left for me. After we were feeling a little bit fresher, we went to the mall to do some shopping. Mostly a good time together, but she always tires of shopping faster than I do. Though not by much this time!
