I started this blog to share our experience with Down syndrome , heart defect, and cystic hygroma. When I first started the blog I didnt think or care if anyone read it. It was just a way to express how I was feeling. But very quickly I realized what was going on with Mason was touching so many lives. So I wanted to use all this for the good of not just Mason but other babies in the same situation.
I was emailed by Dan & Joyce. There story really touched me...because they seem to be going through the exact same things we are with Mason. Both boys were born only days apart , both with DS & heart defects. Here is Jonahs story:
In all started pediatric cardiologist) we were given the news that he had two holes in his heart and a single valve that needs to be split into two valves. We also learned that this heart condition was a hard marker for down syndrome. That was the furthest from our concern, as we were worried about the heart. It made me so mad when the first thing the high-risk OB (can't remember what they are medically called) stated our first option was to "terminate the ". I found it appalling knowing that 9 out of 10 babies with the possibility of down syndrome are aborted, and I can see why when docs try to scare parents with this type of news of how bleak "their" future will be "if" they continue with the pregnancy., we got a 3D/4D ultrasound to find out the gender of the baby. The technician noticed a slight issue with his heart, so we ended up getting it checked out more detail in January. Well 3 ultrasounds later (an OBGYN, high-risk OB and
So with our strong Christian and pro-life believes that was never an option. So we continued on, and Jonah was delivered on April 26th. He came out a bit bluish and we could tell immediately that he had down syndrome. We would have been shocked had he 'not' had DS. God actually showed my wife in a dream that this baby had down syndrome even before we knew of the heart condition. The most shocking part of his delivery for us was that he was born with an extra digit on his right hand under his thumb. I don't think it is usable so at some point it will probably be removed. It's not a big deal to us, it was just something we weren't aware of.....
Immediately he was wisked away for tests, so we maybe saw him for 15 minutes after delivery then we got him for another 30 or so before he was admitted into the NICU. It was very hard for us to leave the hospital after Joyce was discharged on the 28th. He was very weak and needed to be under a heater and was given oxygen through his nose and was very lethargic when taking his bottles, usually falling asleep after only taking a very small amount.
He began to get stronger and within a few days he was off the oxygen and within a week or two out of being under the lights. His last struggle was finishing the bottles for 3 straight days.....he came close after 2 weeks and got his nose feeding tube removed but he began to struggle again. So to close as we get ready to take him home tomorrow his stay will end up being 27 days. He has three brothers at home waiting for him, the youngest being 19 months who has no clue what is about to happen. The others are 15 and 10.
So I ask for you to pray for Jonah, as you have for Mason. It seems both boys will be having surgery about the same time. So we ask God to watch over our boys and to heal their tiny hearts and help us , as parents, to just enjoy every minute we have with them.
Here is Mason (both boy are wearing the same outfit)