Showing posts with label Cleveland Clinic VSD Heart Surgery. Show all posts
Showing posts with label Cleveland Clinic VSD Heart Surgery. Show all posts

Tuesday, February 1, 2011

Happy Heart Day Recap

I finally found sometime to upload pictures from my camera. I stumbled across a few I took on Marissa's 2nd Happy Heart Day which was on January 26th.
We spent the morning eating Captain Crunch and drinking juice.

Usually it's just Cheerios and milk so she was pretty excited.

Then we hung around the house and played with the boys.

Daddy came home for lunch and we opened a present from Marissa's friends that had lots and lots of heart shaped chocolates.

They even made her a card to go with all of the deliciousness.

It was an absolutely wonderful day. :-)

Wednesday, January 26, 2011

Happy Heart Day My Sweet Girl!

Two years ago today, January 26th, Little Miss had open heart surgery to repair her heart. The son of a family friend said, "she needed to have her heart fixed so all her love doesn't fall out." He was talking about his own sister at the time, but I think it's a pretty perfect statement for the occasion.


When she was born and we found out that she had designer genes, the doctors were very quick to listen to her heart because heart defects occur in about 50% of individuals with Down Syndrome. They discovered that she had a congenital heart defect, or CHD. Her heart defect was called a Ventricular Septal Defect or VSD. A VSD is the most common CHD which means the surgery to repair her little heart is one that occurs most often. In fact, VSDs, if they are small enough, will routinely close on their own, unfortunately hers was too large and needed to be repaired surgically with a patch at just 4 months old.

But just look at how far she's come...
The day of surgery.

1 year later, signing telephone.

2 years later:
Navigating crazy obstacles at Monkey Joe's

and getting ready for football season with her Daddy.



A letter from mama...
Dear Peanut,
Words can't express the joy I have in my heart today that we get to celebrate your 2nd Happy Heart Day. I had such a hard time letting you go into that operating room, but I had to have faith and simply trust that our prayers would be answered. And look at you now, my sweet girl, you are a fighter inside and out. God gave you the strength to fight and to survive and you are doing it baby girl. Each day you are with us is a gentle reminder that we have so much to be thankful for, your heart is honest and pure and will surely take you far in this world. I'm so very blessed to have you as my daughter and to have this day to celebrate you. I look forward to celebrating many more happy heart days with you my little peanut. Happy, happy heart day to you!
Love,
Mama


DID YOU KNOW?
Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined. Source: It's My Heart

Friday, October 1, 2010

October is Down Syndrome Awareness Month

Oct 1...kicking off raising awareness about Down Syndrome, and in hopes, increasing acceptance of people with Down Syndrome. For the month, I am going to attempt to blog daily about the life of a parent of a child who has Down Syndrome. I've been altogether crummy about posting on my blog just because life seems to be busier than before, but with a toddler on hand who has recently mastered climbing the stairs independently, I suppose that's to be expected.

First things first...if you're new to reading my blog and haven't read our story, I'll give you a quick overview of my Peanut. My pregnancy was typical, no complications or concerns. I had previously had a miscarriage, but since that had been my first and only pregnancy, there wasn't a whole lot of "research" put into why the miscarriage occurred. As with the pregnancy that ended in m/c I took my prenatal vitamins, went to my scheduled doctor's appointments, and kept up with a healthy lifestyle (excluding my addiction to candy bars). I chose to do the Quad Marker Screen which came back negative for any birth defects. I never gave it a 2nd thought.

Peanut decided the last week of the pregnancy that she wanted to turn around and come out breech, so we scheduled a C-section for 9-21. My water broke that morning and contractions followed. Mu husband drove me to the hospital where they stopped the progression of my labor long enough to get me in for the scheduled C-section. Apparently Peanut wanted to make her entrance into the world on the 21st, scheduled or not.

The doctors and nurses introduced us to our beautiful daughter before "stealing" her away to finish the surgery and to clean her. We met her once again in our room, we both loved her instantly. Later that day, the pediatrician on call at the hospital entered our room and told us he suspected our daughter had Down Syndrome and that they were going to run a battery of tests. One test included a check up on her heart, which confirmed she had a heart defect that would need to be monitored closely as it would likely need to be repaired.

During the pregnancy, and even before, we would talk about what our child would look like, how she would act, what she'd grow up to be. A child with Down Syndrome was not what we were expecting. So, we cried. We cried for fear of her heart condition, not knowing what it all really meant. We cried because we were afraid of the unknown, the unexpected. And quite honestly, I cried because I wanted my daughter to be loved by everyone and I was afraid that if she were different, people might not accept her as openly as they would the child that I had been expecting, that I had been dreaming of.

Now, just over 2 years later, I think back to how foolish we were to be so afraid, to cry so many tears. When the doctor told us of his suspicions, all of that dreaming was abruptly halted and we were forced to dream different dreams, to expect a different kind of hope. At first, it was hard, but now the "different" hopes and dreams are more brilliant than anything I could have imagined on my own. Little Miss exudes hope, brilliance, and determination unlike no other; qualities I'm sure I can credit to the extra special 21st chromosome.

So that's our story and that's my mission for this month, to open your eyes about all the good that can come from loving someone with Down Syndrome. People with Down Syndrome are just as worthy of love, just as worthy of dreaming, just as worthy to be here as you and me.

Friday, October 16, 2009

My Amazing Little Girl

video

Marissa has been learning a lot lately. I put together a little video to showcase some of her accomplishments. Please take a couple minutes to celebrate her amazing accomplishments with us.

Wednesday, May 20, 2009

Glory to God

video

Little improvements are HUGE accomplishments for this little angel. She underwent heart surgery at 4 months old and a little less than 4 months later she is sitting independently (for brief periods of time). For all the times that I get miffed at God for making it so hard for Marissa, today is the day I celebrated with her for her great accomplishment of sitting independently. Even if only for a short time, she did it...all on her own, SHE DID IT! God is good!

Oh, and my parents sold their home! Keep on praying though, they still hve to wait on bank paperwork and inspections and all that stuff. God is SO good.

Wednesday, January 28, 2009

M40-07




I finally got to hold my sweet baby.

AND....

We were transferred to the step down unit today!!! :-) This means a few things, the main point being that we are one step closer to taking Marissa home. Marissa has no more lines, except for oxygen and they continue to monitor the oxygen being circulated in her blood and her heart rate. She is doing absolutely fantastic. I nursed her 3 times today and she fed very well. That is a critical point of her recovery and ability to go home.

Dr. Mumtaz, her surgeon, said that as long as she continues to feed well and if we are comfortable she is likely to go home on Thursday or Friday. Can you imagine..open heart surgery and she is home within days?

We are so thankful that the Lord is answering our prayers and taking such good care of Marissa. God is working on my heart through all of this and I don't think I've ever been more thankful for his blessings than I am in this moment.

Tuesday, January 27, 2009

Extabated



One critical step down...they have removed Marissa's breathing tube so now we get to see her cute little face. We were told that babies with downs sometimes have issues following extabation, so far Marissa is holding her own quite well. Her stats look great and they lowered her pain medication levels. We were told to limit her stimulation so I'm sitting at the head of the bed just looking down on her. She's absolutely gorgeous. I'd give anything to trade places with her right now.

We wait.

We pray.