Saturday, May 14, 2011

Sadie's visit at Ryan House

I was so excited about going to Ryan House with Sadie when we got home from Seattle. When we toured it looked like the perfect place with a quiet room, games, sensory toys, a pool, and a bathtub with jets!! But what was even more appealing was that someone else would be taking care of my baby and I would be able to take a break. Especially with Brian gone for 4 more days, this was a big deal.

When we got there, it was a little harder to release control than I thought it'd be. It was important that Sadie got a certain amount of food and liquid each day, and this had to be administered a certain way and at a certain time, or the chance would be gone. It was also important that Sadie got a certain amount of sleep each day, and if it didn't happen, everyone was bound to pay the price. People don't understand that...even people who are USED to working with special needs children. Sadie is a ticking time bomb, ready to explode at any moment if: something smells funny, she wakes up too early, she stays asleep too long, she doesn't eat right when she wakes up, she doesn't get her nap RIGHT when she's tired, you make her work too hard, you overstimulate her, it's too loud while she sleeps, or if her mouth hurts. So, I felt like I needed to be constantly looking over their shoulders reminding them that "it's time for..." or "you should take the opportunity to...right now."

We got there in the afternoon, and on into the evening everything went well. They ask that a parent stays the night that first 24 hours just to oversee and make sure everything goes well. So, Sadie took a nap right when we got there. She woke up and we fed her dinner. There was "drinking" and a bath and jammies and putting her to bed was relatively easy. The night nurses encouraged me to go down the hall to my "parent suite" and relax, they had everything take care of. I graded some papers and went to sleep early. But at 3:00, someone came and knocked on my door. Sadie had been awake for 3 hours and they couldn't get her back to sleep, can I come help? She just needed Mama (and the Tylenol they had given her just before they came to get me), and within 10 minutes I had her asleep and I was headed back down to my room. I wasn't frustrated or angry that they came to get me, it was actually a little relieving! I'm so used to doing that every night that it felt weird not to!

The next day went pretty well. I was able to mostly be independent, but check on her frequently. She had one tiredness meltdown where I couldn't even get her to sleep, so I walked away and asked the nurses to take care of it. I mean, I wasn't going to get all stressed out when this was supposed to be a break for me, and I had all that help just standing around (Sadie was the only kid staying at Ryan House that day). They finally got her to go doing what I told them they should do. Unfortunately, the night staff wasn't there for that.

Sadie had a great day after her 3 hour nap though! (yes, she was THAT tired) She played in the sensory room looking at the bubble lights and the mirror, she bounced on the ball and listened to some music, and she even went swimming! I went to run an errand, and when I got back they were just getting ready to be done swimming and take a bath. And again, bedtime was easy! She had had a stimulating afternoon and she was pretty tired. As soon as she was asleep, I packed up and went home for the night.

It was a little weird to be home all by myself. No Brian. No Sadie. It felt indulgent, and I liked it. I went to bed early after eating breakfast for dinner (something I never get when Brian's home!) and I was sound asleep when my phone rang at 1:00 in the morning. The night nurses (the same ones who had been there the night before) were calling to tell me that Sadie had been awake since about 8:30 and they were really sorry to bother me, but they just didn't know what else to do. They wanted to know if I had any suggestions. I told them her teeth probably hurt and they needed to wrap her like a burrito and rock her. But when I hung up the phone, I couldn't go back to sleep. I didn't know if I should go down there and put Sadie back to sleep, I didn't know if I should bring her home, I felt guilty for leaving her there in the first place when she obviously wasn't ready to be away from me all night. Brian was in Seattle, but I texted him because I needed some support. I finally decided to call Ryan House back at 2:00am and see if she was still awake. If she was, I was going to get in the car, if she was asleep, I was just going to leave her. But I had decided that instead of her staying another night there, I should just bring her home. Even though Brian would be gone another night, it would be less stressful to just have Sadie at home, than worry about her somewhere else.

The next morning I called and spoke with the head nurse. I told her of my decision to bring Sadie home that afternoon (I was too behind on work to get her in the morning) and she was very supportive. She agreed that maybe Sadie is just too young to stay away from me. Plus she understood that she has specific needs that I know best, and how to take care of best. She reminded me that this was a good experience for us and that they are available if there ever comes a time when we HAVE to leave Sadie. She told me their goal is respite care for the family and if neither I nor Sadie was getting a relaxing, restful break, then it wasn't worth it for us to stay.

They are so nice there, and they have such a nice place that I wish we could have stayed longer and I wish it had worked out better. But it's okay, we tried something new. It was a pretty safe way to learn that Sadie really does need either Brian or me to sleep at night, and she's really not ready to be away from us for a long period of time. I have no regrets about our experience there. We have a HIGH MAINTENANCE baby and she is a lot of work! But she does best at home with me and somehow we figure it out everyday how to get things done and still have time to enjoy ourselves.

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