Jesus Loves Me...

For Ayden Jane, like most infants with PWS, feeding was completely uninteresting. Well, for the first few days she was just not capable. She was sort of off in her own little world, completely disconnected from this world. She was oblivious to the sights, sounds and feel of all that was around her. It is often said that the hypotonia of PWS is best described as the child feeling like a rag doll. I would extend that 'unreal' feeling to trying to get her to eat from a bottle. At first she was just like a doll. Put the bottle in there, swish it around, tap it... anything to get her to notice it was there.

After about a 5 days, she was 'real' for long enough periods that she was able to attempt to eat. I say she was able because she physically could latch on to the bottle and drink a bit. It took lots of coercing and some really cool tricks the nurses taught us, but she could get down a few cc's before we put the rest through the ng tube. As the days went by Ayden Jane became more and more alert and feeding became the only reason we could not take her home. Each feeding was the highlight of my days or sometimes the low point.

I went to feed Ayden Jane late one evening before heading to the Ronald McDonald house for the night. It was quiet and the night nurses were going about their jobs taking care of the babies. I held AJ and began to quietly sing to her. (Now, if you know me at all, you know I don't sing. Certainly not in public anyway). Jesus loves me this I know, for the bible tells me so. Little ones to him belong, they are weak but he is strong... As I hit this line, Ayden Jane began to eat. She kept eating as I softly sang and when I was done she stopped. I started again... she ate each time I hit that line. What an amazing message to me at that time.

Fast forward to this past week. Ayden Jane and I were all curled up in bed to read stories before bedtime. After we read, Ayden Jane asked me to sing a song. This would be Gary's fault as he sings with her frequently (which I love). I was just trying to squirm out of it when I said, "why don't you sing me a song?" AJ decided that was an okay plan. Whew. Then she started, "Jesus love me this I know, for the bible tell me so. Little ones to Him belong they are weak but He is strong. Yes, Jesus love me, yes Jesus love me, yes, Jesus love me. The bible tell me so."

I was transported back in time. I could feel just how she felt in my arms: so helpless, so frail, so weak... but He is strong. I had never heard Ayden Jane sing more than a line of a song without help. How perfect is it that her first complete song would be the one she relied on from the very beginning.

Here are a couple pictures of our little angel from around the house today.

First, playing in the leaves outside. She loved jumping in them and hiding in them.

Here she is after playing with her baby. I promise, I took my eye off her for just one second! Pretty sure the baby in the background gives you a clear picture as to what she got into.