Tuesday, August 10, 2010
Information, Perspiration, and Inspiration
My twins, now 21 months old (yikes!), were born 4 months early at 25 weeks gestation and each weighed about 1lb. 5 oz. at birth. They are some of the smallest born babies to have ever survived such a rocky beginning. As such, they were invited by the hospital where they were born to participate in a National Health study on very-low-birth-weight babies. The tricky part is, they were born in Utah and we live in Washington. The hospital said the study involved an evaluation a few months before or after the twins were 18 months old, adjusted age. I told them if we were somehow magically in Utah during that window, we would participate.
Well it just so happens we were. So last week we took a break from our family vacation and went to Salt Lake City to have the twins tested as part of the study. We owe the Universe for how miraculously our babies have recovered from their early health challenges and we know they have benefited from all the research and work that has been done in the past. We hope our participation may help other babies in the future.
A bonus for us was hearing what the Drs had to say about how the twins are doing now and what the future looks like for them. The twins were a month old when we found out about them and were chosen to adopt them by their birth-mother. So, we missed the really scary first days and weeks. They spent the first month on ventilators and struggled to gain a few grams of weight. When we met them, they were still each under 2 lbs, on oxygen, and very fragile. Here’s a separate blog with pics and all the details of their NICU stay: www.jarrettfamilyadventure.blogspot.com.
Liam had a few additional problems: a little hole in his heart (PDA) that hadn’t closed yet, urinary reflux, and he had suffered severe brain bleeds on both sides of his head. We were told he was at serious risk for developing cerebral palsy due to the brain bleeds. Both kids would have delayed development and be at risk for cerebral palsy and learning disabilities.
We studied about all the ways to address these issues, prayed a lot, were blessed with very talented specialists and hoped the twins would escape early death and maybe even severe developmental deficiencies. We had no idea just how miraculous their recovery would be.
Liam’s PDA is almost gone now, so small it’s not really of concern, his urinary reflux is gone, and his brain appears to have recovered almost completely from the bleeds. The study evaluated their cognitive, fine motor, and large motor ability. Chloe is 100% caught up to her real age of 21 months in every area! Liam has caught up to his real age in cognitive and fine motor. He is behind his adjusted age 3 months in large motor. The Dr. said this large gap between Liam’s understanding of what he should do with his body and what he can make it do, like when playing with a toy, causes immense frustration. We have certainly observed this. Liam will get frustrated and fight with a toy for an hour sometimes. The Dr. who evaluated the twins said he was amazed at how well both are doing, but especially Liam. He said he fully expects Liam’s large motor development to catch up and doesn’t expect him to have any problems in the future.
He also commented that if we had not provided the right kind of stimulation and environment for the twins, their brains could easily have turned to mush – scary. This comment really had me reviewing the past and thinking about the stimulation and environment we’ve given them. There’s one thing I keep coming back to. This spring I listened to a TJED Forum lecture by Keri Tibbetts called A Journey through Core Phase. I blogged about my response to this lecture here.
Based on what I learned from her, I decided to get rid of the majority of the twins toys, especially battery toys. I had mixed feelings at the time. I wrote: “I guess I'm struggling right now with the fact that my little boy LOVES toys with music, sounds, and lights. I do see though that by playing with these he uses no creativity and does no work, just gets entertained. I don't want to stifle his natural ability and desire to think and play creatively.”
I have a new perspective on this now. I think Liam loves toys with buttons, lights, and sounds so much because they are easy. It is so hard for him to play with “plain and lifeless toys.” It’s a lot easier to push a button and let the toy do all the work. I’m sure I’d feel the same if I were in his shoes. But, having those “easy” toys around eliminates Liam’s motivation to wrestle with the toys that make him do the work. Working at it and giving his body a chance to learn and develop is what he needs most. I am SOOOOO grateful I was inspired by that lecture to get rid of the battery toys. I think they would have damaged or at least slowed Liam’s brain and development if I’d continued to let him play with them.
From my own faith-based perspective, I see God’s hand in this as well. We are so blessed. To all you mothers out there who are trying to do what’s best for your kids: I know you are seeking good information and sweating like crazy as you raise and care for them. Don’t forget to listen to the inspiration you receive. Do what you think is right even if you don’t totally understand it. There is someone out there who knows more than you and cares deeply about your children.