Newsletter 7/6 - 7/12

I hope everyone enjoyed the 4th and the holiday weekend!  We have enjoyed the city pool a couple times this week.  We are looking forward to visiting often during the summer!  Nathan loves the water!

We are trying once again to get to Adventureland by Des Moines during the week of the 20th. Our last planned trip was canceled due to floods! 

Summer is in full swing and I am enjoying every minute of it!  Hope all of you are having a great summer,too.

Carol 


Welcome to Our New Members
Danie21
coss4
sboromom
BlessedwFive
horse
motherofangel
summerbaby669
kschaublin





Birthdays
July 8 - Bella
July 9 - Lincoln

(If you have not submitted your birthday or child's birthday and would like to have group recognition, please send a message to the RCDS Team)




M(om) O(f) T(he) W(eek)

 Group Admin   Joined: Jul. 21, 2007

I received a surprising PM in my inbox this week from Luvlily1 (Natalie), stating that I was the "chosen" one for this week. I thought surprising only because I don't write about myself, I write about Aiden. So here, goes.

I found out I was pregnant with Aiden in Feb 06. I'm one of those bodies who knows immediately when something is up. I hesitated taking the test. I fail those tests. In fact, I bought 3 tests. If one came up positive, I had to more to rely on to be negative.

It wasn't that I didn't want to be pregnant. I was financially stable with a great career and excellent benefits. The problem was that my body isn't made to sustain a pregnancy.  At 17, I was diagnosed with a hereditary form of cervical cancer. I had always been told not to get pregnant. If I did get pregnant, I would soon thereafter loose the pregnancy. In fact, I did - three times. So, I made the call to my ob/gyn.

Being put on the "high-risk" list immediately, isn't fun. Everytime you go in for an appointment, someone is coming at you with needles and monitors. I had more ultrasounds than I can count. You don't get to refuse tests either.

I went in one day for a routine check up. And of course, more needles. This time was the quad screen. At the end of the week, my ob's office called. The results showed an elevated risk for a neural tube defect or spina bifida. This is when I went from "high risk" to "stay off the internet, don't ask anyone any questions unless they are in the medical field, oh, and we're adding a whole new team of specialists." My crash course in medical school was about to begin.

I was sent for a level 2 ultrasound. The only good news I got at the level 2 was that there were no physical defects. No neural tube defect, no club foot.

What I did find out was that there was a very significant heart defect, there was a calcified placenta, and that I had caused all these problems. An appointment was made to visit the pediatric cardiologist.  I didn't like that specialist and I told my ob/gyn that I would not be returning to him and to find me another.

When my ob received the results from the level 2, she called me. She wanted me to come in later that day for an amniocentesis. This was the only time I had to wait forever to get in to see her. She wanted to make sure that she got all of her other patients seen before seeing me. We were going to have the results FiSHed in order to have them back before the appointment with the cardiologist. I don't have that kind of luck.

At the appointment with the cardiologist, they did a fetal echocardiogram. I didn't know that they could do such. Of course, Aiden is never cooperative. The cardiologist had seen the following: a complete atrial/ventricular septal defect, Transposition of the Greater Arteries, and Hypo-plastic Left Heart syndrome. Aiden, it seems, was going to require immediate open heart surgery within minutes of being born.

A week later, the results of the amnio came back. I was on my way to the tag office to buy tags for my truck. I had stopped at a convience store to buy banana milk, when my phone rang. "Hello, Stephanie? It's Teressa, Dr. McHenry. I got the results back from the amniocentesis. Aiden has Trisomy 21, do you know what that is?" Now I'm visualizing my pregnancy book. I know the term, but I can't think of what it is. "It's Down syndrome, and Aiden has it." My only response, "Okay"

She proceeds to tell me that her daughter Cyanna also has Down syndrome and what it means. She also is a little freaked out that my response was "okay".

I went in the following Monday and received the "Bible". The Bible is the new parent pack from the local Ds support group, the calander, all the information for the NDSS and NDSC, the Down syndrome DVD, and a book. We talked about the surgery Aiden would need and the decision was made that Aiden would be born 113 miles from where I lived. That is where the best pediatric cardiac surgical team is. Teressa had only sent a few children there, Aiden is the fourth.

On August 30, 2006 I woke up early. I had to be in Oklahoma City for a visit with the perinatalogist. When I got there, the tech came in and did an ultrasound. Then she said that the doctor woud be in a few minutes later. Another ultrasound was done with him. Then he asked what I had to eat and drink that day. Apparently, Aiden was going to be born - 6 weeks early. By emergency c-section.

I had to make my way to another hospital, the Children's Hospital of Oklahoma located on the University of Oklahoma's Medical School campus.

Aiden's birth was pretty uneventful if you don't count the 30 doctors and nurses that were in the first delivery room. He was held up for me to see for a whole second and a half before he was taken to the adjacent room, where the surgical team was waiting.

30 mintues after having Aiden, a doctor came into my recovery room and introduced herself as the cardiologist. I could have kissed this woman. She said that Aiden would not need immediate surgery as planned, it would wait. He did have the AVSD, but not the other issues.

5 months later, Aiden did have his heart surgery. But that is a whole other serious long story. And if you have made it this far, bless you.

I think my most answered question has to be about advocacy. Why I do it and how do I do it? Well, that's easy. I do it because no one else is going to. I have one rule when it comes to Aiden, if you can't accept Aiden having Down syndrome, then you don't accept Aiden. And I look at it that way with all of our kids. Our kids didn't ask to have this condition, and most of us didn't jump up and down yelling "Pick Me!" to God. We were given what God thought we needed.

And I do often say "our kids". While I may not have given birth to all these kids, I do consider your kids mine also. I will fight for your child's rights, just as I would for Aiden's. I will protect them just as I would Aiden. We are a society and a family, that most people would not even think about being part of.

Aiden's biological father could not accept the Down syndrome diagnosis. And he has never met Aiden. However, Aiden has the best "Daddy" that he could ever get. Chris doesn't "see" the Down syndrome. Chris is the one who wanted me to be a stay at home mom. "Aiden needs you to be here for him."

Yes, I do miss working, sometimes. But then I probably wouldn't be as involved as I am. Sometimes I feel like a Down syndrome encyclopedia. But it is so rewarding to help other moms find out what they need and who to contact regarding their child's needs.   

Inspirations
This is being written on the eve of our country's choosen day to celebrate our fore father's wise decision to break free from England and it's royal rulers. We all know the history lesson it is something we were taught all our lives. It is our day of independance. 

As I sat here and thought about history and how it shaped my life I began thinking of my children and that's no huge leap I think of them all day. I put the two together and I began listing all the ways my boy is independant . And I'm sure if you set down and thought about your beautiful little guys and gals you would have some pretty impressive lists as well. 

So as you light your firecrackers and gather with your families remeber Independance is such a wonderful thing and we should all celebrate it.

Julie