Thursday, July 31, 2008

A New Direction in Life

John Austin Hill was born Tuesday morning at 7:12 a.m. with Down's Syndrome which we knew and had time to prepare emotionally that our baby was going to need special love and attention. As a Pediatrician and a Physical Therapist Assistant, Joy and I began preparing ourselves for what obstacles might lie ahead for us. As Christians, we began praying for protection over John's life and that God would help us emotionally to deal with whatever came. We also prayed that God would have grace on this little guy and that he would be able to learn and laugh and be able to enjoy relationships with others and with the God of this world. And that he would be as healthy as he could be for we knew the health issues that sometimes accompanied this syndrome.

After months of feeling his movement inside the womb, we were hopeful and encouraged by John's activity level. We also were encouraged by several ultrasounds that were done that revealed no problems with the heart or any other internal structures. We were encouraged and felt that we had been blessed with a healthy Down's baby. After meeting him in person, we still feel that way. His exams have revealed the same information - that his heart and internal structures are functioning properly. All of his movements have been good and continue to improve.

We are beginning the 3rd day of the life of John Austin, who was born with Down's syndromre. He continues to do well with his first lessons in this life. His breastfeeding skills have greatly improved over the last couple of days. The coordination of sucking, breathing and swallowing are intact and function very well. The problem has been getting his tongue to operate correctly in order to make this happen. As a side note: kids with DS usually have a relatively small oral cavity which makes the tongue seem large and therefore it is difficult for them to know what to do with the tongue. So with time and training (some exercises that help him stretch his tongue), John is now learning to manuever his tongue so that he can drink what he likes. His birth weight was 7lbs. 1oz and he weighed 6lbs.11oz last evening, so he got off to a bumpy start on the feeding but loosing a little weight after birth for any baby is normal.

His hearing screen which was done yesterday was passed on his left ear. We plan on giving him another screen in about a month on his right ear which we feel that he will pass. Babies are usually so full of fluid in their little ears from the birthing process that it makes it difficult to get an accurate reading. Also, kids with Down's syndrome usually have smaller ear canals that are shaped differently and that is the reason for frequent ear infections in most children with Ds. But John has passed the first hurdle of this issue with a good hearing screen.

Joy and the baby will be coming home today and everyone is ready for them to be here. Thanks to my sister Rene', and my parents that came up and helped us get baby room ready, we now have a nice, quiet (as quiet as possible in this house as I have four other children) room for him to lay his head. And thanks to family and friends at church and school, we have been blessed with clothing and supplies for this baby.

3 comments:

charitysq said...

your blog has already blessed my family! thanks for sharing

Anja Huebel said...

Hi guys, sounds like you're doing a great job. Just one comment from a mum of a great guy with DS: the tongue is not larger than normal. The difference is that the muscle tone is a lot lower so it hangs out more and so appears larger.

My son Christopher had a really rough start with Hirschsprung's Disease but I was still able to nurse him, which we both enjoyed for 2 1/2 years!

JaybirdNWA said...

Thanks Anja for your post. I have heard a few different reasons for the larger look of the tongue. One being that the oral cavity is smaller and the other that the tongue is actually larger. But the lower muscle tone of the tongue makes sense. Thanks.