Tuesday, August 3, 2010

Our Journey

So I have read a lot of peoples blogs with kids with down syndrome and I want to be apart of the blogging community with these sweet spirits and I want them to know my story too. I am 25 weeks pregnant and I found out a week ago that our little girl has down syndrome. It all started out at my 20 week ultrasound when they had a hard time seeing the 4 chambers of the heart and said my baby is measuring a month smaller then my due date and has decreased in her growth so they sent me over to a nicer hospital with nicer machines to get a closer look. There they did another ultrasound and found out there was something wrong with the heart. The 4 chambers were not connecting in her heart and her growth still was decreasing. A specialist then came in and told us it could be one of three things which were trisomy 13, 18, and 21. She said with the 13 and 18 the baby had no chance to survive and if it was the 21 then she would have down syndrome.
They said they were hoping it was just a heart defect that they could fix cause they said she doesn't look like she is downs that it is just her heart or she may die. They then asked if I wanted to take a test of my amniotic fluid to find out what it was so I said yes and the results came back 4 days later saying she has downs. My doctor kept apologizing but all I kept saying is "So there is a chance she will live??" and she said yes and at that moment that was all I cared about. I just wanted this baby to live. The specialist then called me that night and said she still has a small chance to live cause she is so tiny. But I have had so many prayers in behalf of my baby that I feel like there is great hope she will make it. If there is anyone out there with a kids with downs can you please help me through this journey since I don't know anything about it and am scared.


TUC said...

We are all here for you, hundreds of us:-) I had a heart baby too... complete AV Canal defect... you should see her now!

Do you have an appointment yet with a fetal cardiologist?

I will pray for you... for peace, and for Sienna that she grows strong and is a fighter!

ch said...

So excited to hear of Sierra's impending arrival!
Both my son and daughter were born with Down syndrome and a complete AV canal defect. Both of their surgeons said that babies with Down syndrome have an easier recovery from the heart correction surgery than babies without Down syndrome who have the same defect.
We're anxious to meet your little one and will be cheering you wildly on in the days and weeks ahead!

TUC said...

p.s. you are not allowed to read my heart posts. Our case was unusual because of her undiagnosed coarc... Read the heart blogs listed on DSNM instead, especially ch's... her kids rocked, and her blog is too funny!

CJ said...

TUC is right, there are hundreds, if not thousands of us here to support you! To offer an ear when you need to vent, a shoulder when you need to cry and information when you don't know what to do. I have hundreds of blogs linked on my project blog and I encourage you to take a look and see all different kids all over the world who share Sienna's extra chromosome.


Stephanie said...

Another one of the hundreds here. My name is Stephanie and my little one, Aiden, was born 4 years ago.

He was prenatally diagnosed with Down syndrome and heart issues. He underwent surgery at 5 months to repair a complete AV Canal and Tetralogy of Fallot defects. At almost 3 years Aiden underwent a second surgery to finish repairing his heart.

Aiden was born small, a little over 2 lbs and he was born premature.

Next week, Aiden begins Pre-K in a public school.

You can read all about him on our blog http://aisforaiden.com

Lisa said...

Hello! My daughter was a heart baby as well, she is doing wonderful Maggie is almost 15, but thinks shes 21, she will start high school in a few weeks
:( don't know if I am ready for that!! I don't have a blog but you can follow us on facebook. We love our "Designer Genes"!!

Lisa said...

Teresa, If you don't mind me asking where are you from? I know of a Teresa Farmer that doesn't live far from me too! I love Sienna's name too! If you have facebook please add me, we have a wonderful DS support family there!!

Bethany said...

Hi Teresa ... Just wanted to introduce myself and let you know you are not alone. :) I had my daughter 4.5 years ago and I experienced all the same things you are going through now. Since then, we have adopted another little girl with DS from Russia ... they are amazing!!

It will take time for you to go through the motions, and in a few years you will become me ... supporting other new parents. :)

Please let me know if you ever need to chat or vent!!!

Becca said...

Hi, Teresa! I, too, am one of the hundreds with a blog and a child with Ds. My daughter, Samantha, had open heart surgery to repair a complete AV canal defect when she was 4 months old. She's now 4 years old, and has no residual issues. You've got lots and lots of support out here - feel free to reach out to any of us! Congratulations on your pregnancy! I'll be back to read more!

Elissa said...

Welcome to the "club". :-) My Abbie is almost 3 months old, and we did not have a pre-natal diagnosis. All of the moms out there who are willing to share their experiences have been an amazing support and resource. I am going to keep up with your blog to keep up with how Sienna is doing. Take care of yourself and that precious baby girl.

anthony said...

11 months ago today our daughter Eleana was born. When she was born it came to us as a total surprise that she had down syndrome when she came out of my stomach she was blue. The Dr's had to stablize her and rush her to children's hospital. I couldn't even hold my baby girl until she was about 5 weeks old. After she was rushed to Children's everything was wrong with her her liver was enlarged, her kidney's were messed up, she was born with a luekemoid reaction. At only 10 days old she had to had Kemo. And at 14 dys she had her 1st temp heart surgery. The Dr's did not think she would survive. I remember those days all I did was have Faith in our Heavenly Father that she would overcome all her illnesses. By the strength of theLord our little MIRACLE made it to her major heart surgery (AV CANAL) at 7 months another blessing from Heavenly Father she maid it through that. She is now 11 months old and is doing very well. I will be praying for you and just remember the Dr's are not GOD.

Ashley said...

Sienna is truly a blessing. I will be praying for her continously until she is well. My little sister was born almost 10 months ago. She was born with a complete A/V canal defect and Down Syndrome. She had to be in the NICU for 7 days, and when she was almost 3 months old, she had open heart surgery. She is almost 10 months old now and doing great! There is hope and healing in God. With Him ALL things are possible! If you have any question or concerns, I would be completely happy to answer them. My email address is ashleyamber92@rocketmail.com

I have a blog for my little sis here: http://somethingbeautiful1025.blogspot.com/

Praying for you always.

Love, Ashley

Jill said...

we may not know you, but we LOVE you and we LOVE your beautiful daughter.

Qadoshyah said...

Congratulations on your little girl! After reading through your blog some, it sounds like you've had a tough time, but may God do a miracle and bring your baby girl to full term. There is so much hope and potential for kiddos with DS now with all the medical advances and therapy options. So, I can only hope & trust your little girl will be able to be born live and bless your family even more.

My 5 year old brother has DS. He's #10 of 11 kids (his twin sister (non-DS) being 5 minutes younger), but he is such a blessing to our family. We didn't know he would have DS until after he was born, but of course that wouldn't have mattered anyways. He brings so much joy to our family and has changed our lives for the better these past 5 years. I keep a blog and you can see it by clicking on my name here :).