Wednesday, November 12, 2008

Owen's Heart Story

Owen was born on January 28, 2008 with a severe heart defect, Hypoplastic Left Heart Syndrome. The left side of his heart was underdeveloped and without corrective surgery shortly after his birth... he would die. The corrective surgery is performed in three stages... the Norwood (birth) , the Glenn (3-9mo) and the Fontan (2-4yrs).

On Owen's one week birthday, he underwent his first open heart surgery, the Norwood. There are no words to describe the heartache of sending our newborn son to the operating room, not knowing if we'd ever hold him again. We paced the waiting room for 7 LONG hours waiting to hear that he was okay.
Owen recovered quickly from his first surgery. He was considered "FRAGILE", but after spending his first 30 days in ICU, he came home with seven medications and an NG tube for feeding.
We took him in for a heart catherization the last week of March 2008 to find that he was in heart failure. His heart function was decreasing, his tricuspid valve was moderatly leaking and his heart was working overtime. Owen was admitted to ICU and placed on Milrinone to strengthen his heart and prepare him for his second open heart surgery, the Glenn. One week later, we felt he was ready and he went back for surgery two. We were scared breathless when the doctors didn't know if he'd make it out of this surgery. He was weak, his oxygen saturations were low and he had a hard time coming out of the OR. His sternum and skin were left open this time in case they had to get in an emergency. Thankfully, he had a major turnaround during those first 24 hours and was on his way to recovery.
Owen spent another 30 days in ICU until he was ready to come home again.
Owen remained in a "fragile" state after his Glenn. His tricuspid valve regurgitation is still moderatly leaky and he has some narrowing in his arteries due to built up scar tissue. On June 4th, he was back in ICU for another cardiac catherization to balloon open his narrowings and coil off excess collaterals.
This helped for a while, but he was back in ICU on October 15th for more coiling of collaterals and balloning of his arteries. During this 6 hour procedure, they determined his heart continues to fail. His function is decreasing, his tricuspid valve is leaking more and his pressures are high. His surgeon sat us down and explained there is nothing more they can do for Owen's heart.
Owen will need a heart transplant! Nothing could have prepared us for our next journey ahead. Arizona doesn't have a pediatric heart transplant facility, so we would need to research and relocate. We visited UCLA in December and Owen had his first transplant evaluation. We sat back and waited for all the test results to come back. It was a LONG four weeks of waiting.
The news wasn't good. Owen has extremely sensitized antibodies built up against many common antigens. This will make it very difficult to find him a heart, and he is considered high risk for rejection. In January 2009, we started pre-treating Owen's antibodies with IVIG (immunoglobulin) and Rituximab (chemotherapy). He was hospitalized on four seperate occasions to receive his treatments. After four weeks of treatment... we drew his labs.
Once again, we waited four long weeks to get the details of his antibody results. All of the treatments failed. Owen's antibodies didn't budge. Since Owen is now considered high risk and did not respond to his first treatment, we've decided to look at other transplant centers that have experience and knowledge in working with antibodies in transplant patients.
I called every pediatric transplant center in the nation and spoke with their transplant teams. Of all the wonderful hospitals to choose from, we chose Lucile Packard Children's at Stanford as Owen's transplant hospital. Owen is currently being treated for heart failure. He is fed 100% by tube, he is on 7 medications, 1/2 liter of oxygen and he tires easily. Owen has PT, OT, Speech and Feeding Therapy weekly and is catching up in all areas of development. We visit our local cardiologist every four weeks and travel to Stanford every six months. Owen is monitored very closely and when the transplant team at Stanford feels it is time, we will get him listed for his new, perfect heart!
It's a miracle, but we just got word from Stanford that Owen qualifies for a Tricuspid Valve repair/replacement. If this operation is successful, he would possibly be a candidate for a fourth open heart surgery, the Fontan. This news is huge and such a blessing. The longer we can keep his heart in his body, the longer we can postpone a heart transplant.
We PRAY everyday that Owen will be taken care of. That his smile will continue to brighten our lives. We want to watch him grow up, go to school, find his talents and passions in life. His spirit can light up a room, his laughter is contagious and his smile brings HOPE to everyone he passes. He is OUR miracle and a JOY in our lives.

37 comments:

Hilary said...

we will be praying for sweet little owen. He is such a handsome little man. If you have any questions just email me at hilarymcook@gmail.com or if you just need to vent. I would love to talk to you.
Much love, Hilary Cook-
Daxtons mommy-transplant 9-10-08

summer said...

We are praying for sweet Owen and your family.
love, Summer (Mason's mommy)

cici said...

Beautifully done! He melts my heart and just keeps getting cuter and cuter, but not sure how that is possible. :)

Wendy Wells said...

That was awesome! He is such a cute little boy!!

Crystal said...

I am baby Jake's grandmother and I saw your response to the Scadlocks blog on baby Jake's story, I wanted to read your story. As hard as it is to know another family will have to go through what we did, I pray that Owen get his new heart soon. It is an awful thing for a family to go through, and deciding to donate your babies heart is so hard. But watching Beck grow, and live, is so rewarding for us. To know that something so good came from such a terrible incident makes it a little easier. Keep the updates coming, I am pulling for Owen. Be strong and have faith.
Crystal Roder

ZippityDoDaw said...

Owen's smile absolutely warms my heart. Such a strong boy and parents conquering so many challenges. I will pray for little Owen. I know he is well loved and protected.

April said...

I was brought here through your prayer requests and I am so moved by Owen's story. I almost named my son Owen 6 months ago :) He's such an adorable, brave and courageous little man to have endored what he has. I would like to follow your story from here and I offer you my prayers in return. Thank you

Greg and Heidi said...

I love this summary! He is soooo precious. We are praying for Owen and we do look forward to meeting you someday.
Love-
Ethan and Heidi

A Family Completed... said...

I will be praying for Owen! My son is nearly the same age and is also a Owen. I love his bright eye and smil!

Paige said...

Hi, I'm praying for Owen and your family. He is such a cutie!

Courtney Kay said...

Praying for sweet Owen! he is so cute!

Elaine said...

I am a friend of the Dean's and all I can say is: COME TO MICHIGAN!!! Seriously...we'll help take care of you! Even though I am a retired Peds NICU nurse, I know I don't understand all of this but these other babies had antibody issues and they all have hearts!

I have been following you and Owen since Suzie first introduced me to him and I feel like I know you...I want Owen to get his perfect heart so badly! I know we are a long way from home here, but you could live at RMH and we would all provide support. Geez...now that Lindsay is doing so well, maybe I need another "project"!!! Have you talked to Suzie directly or to U of M? Let me know if I can help in any way...I will be happy to send you my phone no. and email.

I will double my prayer efforts for Owen,

Heart Hugs, Elaine

Cynthia said...

Your story has really touched my heart! I am praying hard that Owen will get better!!!!

mina said...

What a precious child Owen is! I will be praying that he gets his perfect heart soon.

klawellin said...

I will be praying for your little man. He is too ADORABLE!
God Bless!!!

S Club Mama said...

I'm sorry I can't remember how I found you but it was through another blogger.

He is so adorable. I can't imagine what he's been through or you as a family.

I will be praying for Owen and you're family.

J said...

I will definately be praying for Owen! Best Wishes to all of you.

Lisa Curcio said...

I will be praying for your little Owen. He is such a cutie, I hope that he gets his perfect Heart.

~Lisa
Mommy to Owain, Double Inlet, Single Ventricle, Bilateral Glenn Procedure 10/08

BridgetPrahm said...

I found your site through the bordykin family. My name is Bridget and my little girl Lorin has complex heart things as well. she doesn't have the same as your little boy, but regardless I saw that he needs a heart transplant and I didn't know for sure if you have decided on the hospital. I wanted to let you know that we go to Omaha Children's Hospital, Omaha Nebraska and our surgeon is the best. His name is Dr. James Hammel. Pretty sure he does transplants. I didn't know how to reach you so I am posting here and hope you get it. We are from Minnesota and our little girl has had 2 heart surgeries as well and is about 10 months old. Feel free to contact me via our caringbridge site www.caringbridge.org/visit/lorinprahm

or my email is bridgetprahm@yahoo.com

Thanks!

Jenifer said...

Preying for little owen

Danny McMillan said...

beautiful andrea~~He truly is a shining miracle!

walkin on cloud nine said...

Andrea,
I just read Owen's story and I am so touched at his strength and I absolutely LOVE his sweet smile. Robbie and Siri told me about you and your little guy and I thought I would check it out. My prayers are with you and your family as you wait for a transplant. I know that can be pretty nerve racking at times but hang in there. You have a lot of support and prayers from a HUGE network of friends and family. Lean on them for support in your tough times. You have a beautiful family! Take care

Monica said...

Wonderful time with all of you today! We are so glad you have such an amazing support group. We will be praying for our Owen and all of the sweet children and their families. Love Grandma Monica

Jennifer said...

I am new to your blog.
I will be praying for Owen and your family.

{cody.amber.chandler} said...

Hi Andrea! I found your blog from Jayce Fieldsted's blog, and just wanted to let you know that Owen and your family are in my prayers! I have a 15 month old son and your story really touched my heart. Owen is such a beautiful little boy and he is lucky to have such a strong and loving family- you've obviously been through so much with your sweet little guy! My best friend growing up was born with HLHS, and 24 years later she is healthy, happy, living a normal life and has exceeded all of her doctor's expectations! Miracles happen every day and I know that God is watching out for your sweet little Owen! Thanks for sharing your story and for being such an inspiration.

Reynie said...

Hi, I just found your blog through your prayer request button. Your story touches my heart and brought me to tears. My father went through a heart transplant 2.5 years ago (June, 2007). I know what we went through as a family and I can only imagine how that is magnified when the patient is a child. I wish there was some advice I could tell you that would make the wait easier, but I know there is nothing I can say. Every time the phone rings, you just pray that it is the call you've been waiting on... it will come! Please stay positive and just love that little boy. God bless you and your family!

La La said...

Have you looked in to Ceder Sani hospital in LA at all? My husband just had a kidney transplant after two rounds of IVIG from them - they are the best with IVIG in the country after the hosptial where it was invented (which is, I want to say, in Maryland?). Anyhow, they were great and have done excellet with my husband's high-risk transplant. Just FYI.
PS I also have a daughter w/ a heart condition - she is seen at UCLA.

Bryanne said...

I will pray for Owen... and for the gift of a new heart.

Our son, Ethan, passed away on June 4, 2010 from a congenital heart defect...

I will pray for LIFE and LIFE ABUNDANTLY for your son.

With love,

Bryanne

g-ma-vicki said...

This last section was so beautifully written. Your ability to express your deepest love in words surpasses anything your mom ever did or came close to doing in writing and she's an old English teacher. Charlotte always said you had a gift in its infancy...you have now come full bloom...of course your muses are the most exceptional children ever...my grandkids Kami and Owen. Mom

Analisa said...

Praying for "the world,famous Owen" Simmons family, and by the way, tell your daughter Kamryn I said "hi!!!!" don't be alarmed, l know Kamryn, she is a friend of mine.

Becca said...

Oh we are praying for your sweet boy . . .

Brittany said...

Stumbled across your page while researching heart surgery for infants...
Your son is absolutely beautiful. He is so blessed to have you as a mother. My best friends 2 day old son goes into surgery tomorrow for CoArctation of the aorta. They also gave her an option to terminate as well. It's unfair that a child so perfect could have something so wrong, but everything happens for a reason. Stay strong for your little man, and your beautiful family is in our prayers. -Brittany

Lisinopril said...

I Will Pray To God For Owen & His Family, Owen's I'm Emotionally Attach With You.

By:Lisinopril

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Cassie Quitter said...

Thank you so much for the information! I am doing a school project about hypoplastic left heart syndrome and this helped a lot! I had a sister who had this and didn't make it, but his story is amazing! I'm so happy for your family and your son! Thanks again!
- Cassie

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