"Never look a gift horse in the mouth." I do not remember who said this to me or when I first heard this saying but it was most likely said to me by my Mom after some tantrum over a Christmas present I did not like. I've always had that saying in the back of my mind and will occasionally say it to someone who's never heard it before. Simply put it means "do not be ungrateful for what you receive.
I thank God everyday for the gift He has given Xindy and I. Royal is that great and perfect gift, he was made just for us.
When we found out that we were going to be blessed with his presence we had the typical first time parents-to be reaction, "Oh God! Are we ready?" Then it turned into a flurry of joy and excitement for the day when our baby would be in our arms.
Then, one day Xindy goes in for a regular check up and an ultra sound and the nurse was not very nice and said she had found something and the Doctor would need to speak with us.
This of course shocked us out beyond belief and we weren't able to get a hold of anyone for almost a week. We finally got in touch with a Doctor who tells us we'll have to see Geneticists, which of course left us freaking out and wondering what could be wrong.
The Geneticists told us that our baby had some markers which lead them to believe our baby had Down syndrome. She said the Nuchal translucency, which is in the back of the baby's neck had fluid in it and was larger than normal. She said that our baby had a 1 in 5 chance of being born with Down syndrome and a possible heart defect.
She suggested that we have an amniocentesis, which was the only way we could be sure. She said the amnio would tell us whether our baby had Down syndrome or not.
It always seemed that anyone we spoke with at the hospital would give options and then always follow up with letting us know we could end our pregnancy and try again. I could not understand why they would keep bringing up, ending our pregnancy, and I will explain later. After much thought and more tears we decided to go forward with the amniocentesis. Everyone always asks us why we did it what I tell them is, we wanted to know for sure if our baby would have Down syndrome and if it did we wanted to be prepared. Knowing all this now, with our next pregnancy and if there are markers we have decided that we will not do the amniocentesis, mainly because Xindy does not want to be poked with that big needle again and because we know God will take care of us.
Let me explain what also happened during the amniocentesis procedure. The facility we went to was great and everyone was super nice and helpful and made us comfortable. Xindy and I both sat in the room in silence only answering questions with single word answers. It finally came down to game time and they were ready to do the test and poke with the needle. What they have to do is get in the placenta and draw out some amniotic fluid. When they first did it, our baby came too close to the needle and the doctor had to take the needle out and try again. So Xindy had to be poked two times. That does not happen all the time, but it does happen and of course it happens to us.
From the ultrasound performed we found out we were having a boy and a few days later we received confirmation that he would have Down syndrome. I remember is being called by Xindy at work, she told me the result and I remember leaving work early, getting home and then crying for two days. Everyone handles that type of news different and everyone is allowed to handle it however they want. The next few days were a blur and we spent it calling family members, giving them the news which meant more tears and more confusion.
With the results from the amniocentesis we were also told us that our baby boy had a chance of having a heart defect. Every baby with Down syndrome, has a 50/50 chance of having a heart defect. The doctors we spoke with asked us how we want to proceed and if we wanted to end the pregnancy and if we want to proceed then we would need to have an echo gram done to confirm if his heart had a defect. A few weeks later we had the echo gram and found that Royal had two holes in his heart called a complete AV Canal and not till much later we also found out that one of the valves had an extra opening. The heart has four chambers and these four chambers work to bring in (blue) blood from the body and take oxygenated (red) blood to the lungs. Due to the holes in Royal's heart, all the blood was flowing around in his heart, like blue jeans and red clothes in a washing machine. All the blood was mixing in with each other, which caused his heart to pump harder. We were told this type of heart defect could be corrected after he was born and depending on how he handled the outside world after he was born would determine when he would need to have the surgery.
The fact that he would need open heart surgery didn't sink in for me until the day of the surgery.
Xindy and I spent days researching Down syndrome and the AV Canal and if you ever Google that, trust me to a new parent it is scary information. Looking through all of it we searched and did not find information or sites that were really positive about Down syndrome.
One of the doctors mentioned that we could go and talk to a support group and we were given the name of a group, but by the way they explained the group to us, we imagined it to be like AA, is portrayed in the movies and t.v. There is nothing wrong with AA and I applaud those that go, but I could just imagine Xindy and I, sitting in a gloomy group saying "Hi, my name is Logan and my unborn child has Down syndrome" and that was not what we needed at that time. (Later we found out we were completely wrong about the support group.)
With researching we found out that more often than not, a prenatal diagnosis of Down syndrome, ends with a termination. But more often babies are born with Down syndrome to parents who had no idea their child would have an extra chromosome. We all need to remember that God gives us what we can handle and makes our children to be exactly what we need.
You may say that you do not think you could handle it, but if you get educated and become part of the families out there who are living, happily, with Down syndrome, you will be so surprised about how little about Down syndrome we are all made aware of. The first time we went to a support group, was after Royal had been born. He had been in the NICU for 3 weeks. We came scared, tired, and ready for the experience. We met the South Bay Down Syndrome Association (SBDSA) at a Panera Bread and that was the best thing Xindy and I could have done. We met a group of families and now great friends that shared so much information that we forgot most of it. I blame the lack of sleep and stress of having our baby in the NICU, but the great thing is that the group will always be there with that information to help out.
If you have just found out that your baby will be born with Down syndrome or if you just had a baby born with Down syndrome, find your local support group or regional center, they will provide so much information and make sure that your child will receive the care and therapy needed. They will also become your friends forever and will help you out a ton.
Royal is a typical baby, he cries, he eats, he poops, and he melts my heart with every smile. With all of that, he just comes with an extra chromosome which make him extra awesome. Everyone is different in their own way. That is what makes this world great. I say it over and over and will continue to say it, I can not wait to see the man that Royal grows up to be and I thank God everyday for blessing us with him. He has allowed us to have a great gift and I am so thankful for Royal and the life experience we have already had and will continue to have. He is the one thing in my life I know is perfect and no matter what, I will love him forever. The whole point of this post is just in hopes for others to learn from our beginning as a family and to give a little insight into our experience. I truly hope that this helps at least one person out there and if anyone wants to talk, email or chat with us about this feel free. We love talking about our baby boy, just like any parent.
Go ahead and check out the images we have from the past 6 months of our little guy growing the past 6 months. You can view them HERE or by going to http://www.royalmaxholliday.com/galleries/royal-max-holliday-past-6-months/.