Life's Journey with Down Syndrome

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 Justin's Journey

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Number of posts : 1849
Age : 51
Registration date : 2010-02-12

PostSubject: Justin's Journey   Sun Mar 28, 2010 1:17 am

Our son Justin was born on Easter Sunday, April 12, 2009. He is the youngest of 6 children and my pregnancy with him was NOTHING like the others. Maybe the difference was because of my "advanced maternal age", I was 41 at the time. Another article I read on AMA called my pregnancy an "elderly pregnancy". I had to laugh at that one!

The first 6 weeks of the pregnancy were like a dream, no morning sickness or anything, just bliss. Then at week 7 hyperemesis reared it's ugly head and I got so, so sick very fast. Hyperemesis is a condition that is like morning sickness on steriods but worse. I could hold NOTHING down, nothing. NO food, NO water. I was hospitalized several times with starvation and dehydration. The doctors feared for my life, I feared for Justin's. I LOST 25 lbs. It was a dire situation. The early ultrasounds showed that Justin was doing okay despite my being so ill.

Then came the 16 week ultrasound. What a day. We just wanted to know if the baby was a boy or girl. It's a BOY! We also learned a whole lot more that we had anticipated that day. The ultrasound tech was oddly quiet as she scanned his tiny heart. I KNEW something was not right. She was spending WAAAYYYY to much time going over, and over, and over his heart. I asked her if everything was okay and she simply said there was something wrong with the baby's heart and that he had swelling around his neck. She left to get the doctor. The doctor came in and rescanned the baby with the same results. He told us what was missing, what was there of his heart and that he felt strongly our baby had Trisomy 21 or some other genetic disorder due to 'soft markers' along with the heart defect and that we would need an amnio to confirm. And with that there was a flurry of activity to set up the procedure. The doctor said the diagnosis was necessary so we could choose the proper "therepy" which I got excited about thinking there was something we could do to help our baby prenatally. The doctor's idea of "therepy" was an abortion. NO WAY! We changed doctors that day!! I think I blew their minds when I calmy said "No! It would not matter if our baby had Trisomy 21 or anything else, his life was in God's hands and we'll not threaten his life or the pregnancy with an amnio and certainly not an abortion!."

We should have just walked out but were a bit shell-shocked and went off to the consultation room where the doctor brought in books with pictures of babies with different genetic differences trying to convince us that we HAD to do the amnio to know for sure if he had Trisomy 21, 18, 13 or what. "No" I said. And with that we came out of our stooper and walked out. We stayed calm until we got back to the car and then we lost it. For the next 2 hours we cried and held each other in our car. We came to the conclusion that our baby was PERFECT just the way God made him and we would stand by him now and for his whole life if need be.

At 24 weeks I developed gestational diabetes and excess amniotic fluid. I started dialating and having contractions. I was in and out of the hospital at this point and on full bedrest except for the daily doctor visits to check amniotic fluid levels and do fetal ultrasounds, challenging to say the least but soooooooooo worth it for our baby boy!

We held off until week 37 and on Easter Sunday, baby Justin arrived after 12 hours of labor. He was perfect. He weighed 8 lbs 1 oz and was 20 inches long. I noticed he was hard to hold and was very wobbly when my OB first handed him to me. He was sticking out his little tongue over and over again. It was so cute! We still did not know for sure if he had a genetic issue. The neonatologist came in to look Justin over and she calmy, quietly said "I see features" and with those three words we began our life's journey with Down syndrome. My husband grabbed my hand and said everything was going to be okay and that we were still going in the same direction as before, just taking the scenic route to get there. A blood test was ordered and it was confirmed the following week that Justin did indeed have an extra chromy from God. Just makes him that much more perfect.

His heart was repaired at 3 months of age and he is now 11 months old, has cut his two front bottom teeth, says momma, is sitting up and trying to crawl. He is a miracle and I am honored to get to be his mommy!
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PostSubject: Re: Justin's Journey   Sun Mar 28, 2010 6:46 am

Beautiful Debbie! Love it! Thanks for sharing Smile
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PostSubject: Re: Justin's Journey   Sun Mar 28, 2010 9:55 am

I'm sure God gave Justin to the right family.
Mary Beth
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PostSubject: Re: Justin's Journey   Sun Mar 28, 2010 11:24 am

That was absolutely beautiful! Thank you so much for sharing your story! You and Justin are both incredibly blessed!! Love, Di
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PostSubject: Re: Justin's Journey   Sun Mar 28, 2010 1:09 pm

He is perfect! Thanks for sharing your story!


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PostSubject: Re: Justin's Journey   Sun Mar 28, 2010 1:14 pm

Lovely story. I wish doctors would read our stories and actually HEAR them. Justin is very lucky to have you, and you are lucky to have him. Thanks for telling your story!
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