CHD Awareness Week My Daughter’s Story

Posted by Erin-Admin in Everyday Chatter on February 7th, 2010 | 9 responses

It was one of those pregnancies that you just have a feeling something is just not right. I was pregnant with my third child. Since it was going to be my last child. We decided to go have a 3-D sono done for memories. It was amazing. You could see all the features on her face and watch her yawn, suck her thumb and just watch her facial expressions. From having two kids before her I know that heart rates are not supposed to stay high like they are in the beginning of the pregnancy. When the sono was done she targeted on the heart rate and I noticed that the heart rate was only 129. I’m sure that was normal but it was something that always puzzled me.

A few weeks later I noticed that she was not moving as much and she was not as active. I ended up going into labor 3 ½ weeks early on December 20^th 2005. When I arrived at the hospital I was 3 centimeters dilated. I had two c-sections before her so I had to have another one. While I was waiting to see what was going to happen, the nurse noticed that every time I had a contraction her heart rate would slow down. They sent the doctor in with the sonogram machine to do the movement test on her. They did it for a few minutes and she failed. She was not as active as she should have been. They set me up for emergency surgery right away.

Carseat Test had to be done before she left the hospital.

Olivia today at 4 Yrs Old

I went in for my surgery early in the morning. When they delivered her. she was not breathing and she was not moving. I was so scared at that time. The nurses hurried up and started doing stuff to her. She didn’t even cry at all. After they got her breathing they rushed her down to NICU. I did get to kiss her on her head but that was it. The day after I was able to finally go down and see Olivia. I did hold her for a while. I was taken back up to my room and everyone left to go home. Before I went to sleep I called down to NICU to see how she was doing and they said that they are running some tests . I didn’t think anything of it. The next morning I went down to see her. The nurse took me down. As I was there the doctor was on the phone with a radiologist. When he got off the phone he came over and told me “the Plan”. Ok I didn’t know there was a plan in the first place. He told me that Olivia went for a ECHO because they heard a murmur and wanted to check it out. He told me that they found she had a narrow Aorta and that they were transferring her to a specialty hospital. I had some questions and they did help me answer them. After that news I decided to go back to my room to make phone calls. As I was coming up the hallway to my room, my OB doctor was walking toward me. I just started crying that he couldn’t understand what I was saying. He told me that he was going down there right now to find out what is going on. So two days after she was born she is now being transferred to another hospital for testing and to be in the NICU Surgical just incase. My OB doctor trusted me to leave the hospital to be with my daughter just two days after the C-Section. He told me he was going to release me so I can be with her.

The ambulance team that was taking her to the specialty hospital brought her up for me to see her. She looked so tiny in the clear carrier that they had her in. After a few hours of her leaving I was released to go down to be with her. We got into the room and there was at least 4 doctors in there with her and the genetic doctors. They did their own Echo and found that she had Hypo-plastic Aortic Arch. The genetic doctors was also doing their own tests and found out that she had Jacobsen Syndrome. It is not very common. Olivia did very well in the hospital. She was not discharged until January 12^th 2006 almost 4 weeks in the hospital. Today Olivia is 4 years old and she is doing very well. She has not had any surgeries. She is monitored every year be an EKG and an ECHO. She goes to school for special needs and has no restrictions. She does have Hypoplastic Aortic Arch, Parachute Mirtal Valve and Mitral Valve Stenosis. Olivia is a very active girl. I have a website dedicated to her syndrome.

Everyday is just another day that she brightens up my life.

http://www.jacobsenssyndromeawareness.com

9 Responses to “CHD Awareness Week My Daughter’s Story”

1

MamaOtwins+1 says:

February 7, 2010 at 8:49 am

Such an AMAZING story! Thank you for continuing to share it.
MamaOtwins+1´s last blog ..Our first heart belongs to Chloe
2

nichol says:

February 7, 2010 at 9:06 am

Wonderful story. I love reading and finding parents with a child that does have a heart defect. I also posted my story today with my son. She is a beautiful little girl.
nichol´s last blog ..Congenital Heart Defect Awareness Week! I’m A Parent Of A Heart Baby!
3

Cheryl says:

February 7, 2010 at 12:14 pm

what a beautiful story! She’s so beautiful. Thank you for sharing your story!
Cheryl´s last blog ..the saga of…
4

Kristine Brite says:

February 8, 2010 at 12:41 pm

Such a good ending to a scary start.
5

jason tudor says:

February 8, 2010 at 12:43 pm

wow, i knew that she had some issues from what you had told me in the past but i didnt know they were so serious and i depth, i give you and her a lot of credit for fighting through this and staying strong. i cant even imagine
6

Kat says:

February 8, 2010 at 12:55 pm

What an amazing story. OMG. You’re an INCREDIBLE Mommy!! God bless her!!
7

Amy Doyle says:

February 8, 2010 at 2:01 pm

Thanks for sharing your story! You are an amazing mom with great children!!
8

Deana Bardroff says:

February 8, 2010 at 2:20 pm

Erin, you are such a great mommy! Thank you for sharing your story. She is such a beautiful child. I am so proud of you both.
9

Shasta says:

February 12, 2010 at 9:27 am

WOW! Thanks for sharing, but that was hard to read!
Shasta´s last blog ..$10 Coupon Booklet – Get It Now Betty Crocker

Appliance Parts