Wednesday, October 7, 2009

A Sweet "Heart" Spotlight!

Bryan and I belong to a support group, Intermountain Healing Hearts, for families with children and adults with congenital heart defects and heart disease. I joined this group shortly after Kate passed away and I must say that it has been really hard for me to open up and express my feelings. However, having others who are going through or have gone through similar experiences has been therapeutic.

Every month IHH comes out with a newsletter spotlighting a "heart" friend. Last month, Kate was the spotlight and I wanted to share her "shining" story:

Sweet Kate, Kater Bugs, Bugaboo and Sissy was born on a beautiful HOT Summer morning, July 15, 2006. With no prior knowledge of any birth defects or a heart condition, Kate was transported to the NICU at Primary’s shortly after birth. During the 7-week initial stay, Kate was diagnosed with Tetrology of Fallot and later was given a diagnosis of Double Outlet Right Ventricle. Although Kate was full-term, she only weighed 4 lbs. 2 oz and heart surgery was too risky for how small she was. The doctors felt the success rate of the surgery would be greater if she could weigh at least 10 lbs. We were so excited to bring Kate home and help her grow. Dealing with oxygen, a feeding tube and A LOT of medications, we were determined to provide Kate with as normal life as possible. Kate experienced swimming, going to the zoo, museums and even a hay ride on Grandpa Roper’s farm. Kate had a keen sense of fashion and a head full of dark curly hair (thanks to sponge curlers). Kate loved it when mom would put the curlers in, but it was a “no-no” to play with her hair……and she would let you know that! At six months, Kate went in for her heart repair. After 12 LONG hours, the surgery was complete and seemed to be a success. Recovering in just 17 days, Kate came home and we were hopeful for some developmental progression and increased strength. Also having a rare genetic condition and not knowing what to expect for her future development, we were hopeful that the heart repair would allow her to start reaching some milestones. One great memory we have is Kate’s 1st birthday. During that first year, especially during those dreaded RSV months, we tried to limit as much exposure to sickness as we could, limiting exposure to family & friends. So when her birthday came around and she was fairly stable, we thought it would be appropriate to have a big celebration. This ended up being much more than we had planned on. With close to 100 of Kate’s friends and family, it was a lot of fun. Having feelings of going a bit overboard, looking back we were so glad we did it because it ended up being Kate’s first and only birthday. We wanted to provide Kate with the best quality of life as possible. However, as she grew, her muscles and heart were not able to keep up with her growing body. She started experiencing seizures, which would cause her to stop breathing. Primary’s became her second home, spending over 5-months in and out of the hospital. She was so loved by all who cared for her. I must say that Kate was quite pampered during her stays……having her nails painted, ribbons and bows in her hair at all times and even an occasional massage (with that darn Oscillator). We knew that the only way for Kate to get out of the hospital and hopefully stay out was for her to have a Tracheotomy. This was an extremely tough decision, but we wanted to do all we could, medically, to keep her here with us. Boy, what a challenge. But, we had wonderful help from family and also home nursing.
Kate endured many surgeries and experienced much physical pain over the course of her short little life. As a parent, you want to do anything and everything for your children. Through our religious beliefs, we believe all things have purpose and we know that we will see her again. As much as we did all we could to help our sweet little Kate, we believe she helped us more than we could’ve ever helped her. We always said, “Kate had the biggest heart of anyone we know,” and in reality she did.
Four weeks after Kate’s passing, we welcomed a healthy baby girl, Mia, to fill our empty arms. We want to keep Kate’s memory alive, not only for us, but for Mia and our future children. This past fall, we organized a charity 5k run, in memory of Kate. The proceeds of the event went to Primary Children’s. We hope to keep this new tradition alive. Having Kate in our lives has made us better people. We miss her so much but feel so blessed to have our very own guardian angel watching over us.



22 comments:

The G Fam said...

She is so cute! What a little stylista!!! She is such a little sweetheart and love the words you wrote!

Mimi said...

Sooo sweet! This was a great spot light for Miss Kate. Her story is so amazing- thanks for sharing!

I have a little heart baby too... Mia. Isn't it a great name?

Oh, I also know Katie Nelson- kind of fun!

Threet family said...

Wow, thanks for sharing this. Although many people have not gone through what you have, Kate's story provides them with a touch of your testimony and strength. Please know that I love ya even though we never see you.

Lacey said...

Oh sweet Kate. Beautiful spotlight.

Kelly said...

Thanks for sharing.

Micah and Melinda said...

I love her sweet story! Yes, I still blog stalk you a little! Thank you for sharing Kate's story w/ me!

The House that James Built said...

that was so beautifully written mar! it puts my problems into perspective. i still can't believe all kate had to endure. i love her and i love you! when will there be another 5k run? would love to be there!

holli said...

What a great memory and spot light of Kate! Thanks you for sharing it!

The Dumas Family said...

I love that!

Treo Sanders said...

That is awesome Mo. What a sweet memory and story about little Kater Bugs. You are so strong it amazes me. I love your cute family picture too. You all look fabulous. Love you

Chrispy Critter said...

What a sweet tribute. Love your family picture!

Tricia said...

Such an adorable post....

Charisse said...

Thank you so much for sharing that. What a blessing she is. You guys are amazing. Thank you for being such great examples.

Brynnly and Alan said...

What a sweet spot light! Thanks for sharing it. :)

Sarah and Jeremy said...

That brought tears to my eyes thinking how difficult that would have been to deal with. You and Brian are amazing and have dealt extremely well with everything you've been given. I wish we were closer and could be more of a support for you guys. We miss you and hope all is well.

Terri said...

Marky it was so fun to get caught up in your blog. Soooo many fun things, and man Mia is just darling. I cant believe all the marathons you are doing. You look great. Love you honey.

ryanfam said...

Thank you Marcae. That was a beautiful post.

Ruth H. said...

I just stumbled upon your blog clicking on your old blog which was posted on Paul Cardall's blog.

I'm crying while I write this because I just realized our little girls share a birthday. My Lily was born on July 14, 2007 with HLHS and other complex issues. She lived for 403 days. It has been just over a year since she died.

Anyway, thanks for sharing your story.

Ruth H. said...

Not good to cry and type at the same time! Did I write July 14? Um, it really was July 15. I'm feeling sooooo foolish. Oh well. At least now I'm laughing, not crying! Lily had a rare chromosome abnormality, too. (And that isn't a typo.) I should just read your blogs in their entirety before I make anymore comments.

Meladie said...

What a beautiful post. I'm amazed at your strength and it strengthens me! Thank you.

carolyn q said...

Thanks so much for allowing us to spotlight your sweet Kate. She will never be forgotten!
It was great to meet you all last night. I hope you had a great time. I look forward to getting to know you better.
(Hugs)

Valerie said...

That was such a sweet spotlight! Brought tears to my eyes- thanks for sharing.