Thursday, February 14, 2013

February 12th-14th Heart Warrior's and Heart Angels

❤Congenital Heart Defect Awareness Week❤ Meet our February 12th Heart Warrior Kaitlyn. Daughter to Heather and Matt. 

Kaitlyn’s story as told by her Mommy: 

Kaitlyn was born May 24th,2008 weighing 5lbs 5oz. She appeared to be a healthy baby, apart from a little jaundice that she developed due to her being 4 weeks premature. Doctors assured us that everything will be fine and that the jaundice will go away. Sure enough a couple weeks later, it did and we had our minds set on starting our life as a family.

When Kaitlyn was 6 weeks old we had her go over to Grandma's house so me and her dad can have a night out by going to a dinner and a movie. After we returned about 10pm, she told us that Kaitlyn sounded a bit raspy in the chest and that she thinks that she might have a chest infection (his mom's a nurse). So we brought her to the ER immediately just in case, but wasn't too concerned since a cold is something that can be cured with antibiotics. Upon arriving, we noticed that Kaitlyn was starting to turn a little blue. They hooked her up to the O2 machine and her stats were in the high 80's. That set off alarms. At first they thought that she just had pneumonia so they admitted her to the PICU to start her on antibiotics and to give her oxygen. The next morning, the doctors were still a little concerned about the way she was breathing and her O2 since she was on oxygen. They ordered her a EKG and that's when our lives turned completely upside down and we knew at that time that no antibiotic was going to cure whatever she had.

The pediatric cardiologist at the hospital sat us down and told us that our daughter was born with a severe heart defect called Double inlet left ventricle also known as Single ventricle and that she needed to be airlifted to Minneapolis, Minnesota to the University of Minnesota Fairview to undergo open heart surgery. I felt at that time that my heart got ripped out of my chest and my brain was going a million miles an hour of thinking what is going to happen to our little girl. I called my family and my best friend and they all met us at the hospital. I think I finally lost it when they had a Chaplin come in and say a prayer for our daughter. I think at that time, that's when reality started to hit that we might lose our baby.

The hospitals airplane flew us to Minneapolis within a couple of hours. Everything was happening so quickly, but we knew that we needed to stay strong for Kaitlyn. We got in touch with the hospital's social worker and she set us up in a hotel room for a couple days until a room at the Ronald McDonald House was available.

Three days after arriving in Minneapolis, I was holding Kaitlyn and all of a sudden she started having seizures. I put her back on her bed and they got a resident doctor who then contacted a neurologist. They ran some tests and confirmed that Kaitlyn suffered 3 massive strokes due to all of the blood going around her body and some of it traveled to her brain, caused embolisms, and they burst resulting in her having strokes. We were devastated at not knowing what the outcome of our baby was going to be. They delayed surgery for a couple more days to be sure that she was strong enough to go through it.

On July 23rd, 2008 and almost 2 months old, Kaitlyn underwent her first open heart surgery. It was the longest day in my life. While we were in the waiting room, the song from Alabama "Angels among us" came on the radio. I immediately got goosebumps. It was almost like it was a sign from God that angels were there looking over her. After 8 hours of surgery, Kaitlyn was done. We were told to go up to the PICU to wait for her arrival. We went up there, and about 45 minutes went by and I sensed that something was wrong. Soon after thinking that, I get a call to go back down to the waiting room because the nurse wanted to talk to us. I feared the worst. After getting down there, her primary nurse was almost in tears. She told us that when they went to move Kaitlyn from the table to the bed, her heart developed an air pocket and her heart stopped. Her surgeon pumped her heart with his two fingers for six minutes and brought her back. She was alive but just barely. 


We went back up to the PICU and when she arrived, I could barely recognize her because she was hooked up to so many machines, including ECMO, and she was so puffy that she looked like a year old baby instead of a 2 month old baby. She was so critical at that time that we weren't even aloud to talk to her nor touch her because stats would drop. I can't even tell you how badly I just wanted to scoop her up and make her feel better, but knowing that I couldn't, broke my heart.

The next 48 hours after Kaitlyn having surgery was the most critical. She about died twice after that and we were trying to prepare for the worse. All of a sudden, Kaitlyn started to get better. She got off the ECMO and then a couple weeks later she got off the ventilator. Things started to go in the right direction for once and before we didn't think we were ever going to go forward, nor did we think we were going to walk out of that hospital with our baby.

After 77 days in the hospital, Kaitlyn was discharged on September 26th, 2008. That was the best day of my life.

Kaitlyn had her second open heart surgery June 26th, 2009 and she did great. We were in the hospital for a total of 10 days. We, along with doctors and nurses, was amazed that she did so great, despite the first time she was in the hospital. We got discharged the day before the 4th of July, and that next day we went down to the bridge in Minneapolis as a family and watched the fireworks. That was the best Independence Day of my life.

Today, Kaitlyn is 4 years old. She is in early childhood and next year she will be starting Kindergarten. She's growing up really fast and is staying as healthy as she can be. Since she did have the strokes when she was a infant, she did develop Cerebral Palsy and Epilepsy. She can't walk, talk, and she has some vision loss. Despite having all these setbacks, they do not slow her down. She is always happy and her laughter fills our house everyday. We couldn't be more proud of our heart princess/warrior.




❤ Congenital Heart Defect Awareness Week❤ Meet our February 13th Heart Angel Ethan. Son to Tiffany Vizina.

Ethan's story as told by his Mommy:

Ethan was born on 10-26-11 and passed away on 1-17-12.

He had Hypoplastic Left Heart Syndrome (HLHS) and stayed in the hospital the first 2 months of his life. He had the hybrid procedure instead of the traditional Norwood procedure at 2 weeks old. He was only 5 lbs so this was the less risky surgery.

After 2 months in the hospital, he was finally released on December 29, 2011. He was home for 2 and a half weeks when he passed away suddenly.

Ethan was a very happy baby and was starting to coo and smile a lot. He also loved when I played patty cake with him. There isn't a day that goes by that he isn't loved and missed so very much.

We donate toys to the children's hospital (Cicu and Nicu) where he was hospitalized in his honor. We do that every year and we named it Ethan's Heart Hugs Project.

Here is his facebook page:

http://www.facebook.com/RememberingEthan


❤ Congenital Heart Defect Awareness Week ❤ Meet our February 14th Heart Angel Gracia Lorraine Hunt (also goes by Gracie). Daughter to Becky and Shawn Hunt. (February 14th is the last day of Congenital Heart Defect Awareness week and Valentine’s Day so this is a special day.. Gracie gets a very special day!)

Gracie’s story as told by her Mommy: 
Gracia Lorraine Hunt, daughter to Becky and ShawnHunt. August 2, 2012 - October 23, 2012.

At 82 days old Gracia left us to be with the Lord on October 23, 2012 ending her gallant battle with Hypoplastic Left Heart Syndrome (HLHS).

She was so loved in her short life by her mom and dad, Becky and Shawn Hunt of Lake Elmo, MN to whom she was born on August 2nd, 2012.

In her short life, our beautiful Gracie brought joy and love to her parents and all the nurses and doctors that cared for her at Children’s Hospital in Minneapolis. Although she never left those walls in this life, she knew love; deep love. She gave that love back in her constant gaze into her mother’s eyes.

Gracie inspired and gave us all hope and confidence in her fight against the many obstacles during her short stay on earth. Through many complications it seemed she couldn't get a break.

The best days were the last, where she seemed strong, happy and with no setbacks. The days spent at the hospital were mostly happy days, a time for family bonding and seeing the progress she would make. Gracie loved to be sung to sleep by her Mommy and read books to by her Daddy. Bright pink was her best color and she loved to cuddle. She taught all of us about love and patience. She gave us plenty of laughs with memories and stories we’ll tell for always.

With the thousands of prayers sent up by so many, Gracie had a deep impact on many people. These prayers were not in vain; they strengthened and sustained her family through this difficult time and strengthened the bond among those that prayed; God’s children. Could any of us ask for more of a legacy than that? Her short, but significant life will have a lasting effect.

Please visit her Caring Bridge website:www.caringbridge.org/visit/graciahunt
blog: http://www.queenofunbleachedflour.blogspot.com/
Facebook page:  Cakes from Grace 

**Sweet Gracie had Hypoplastic Left Heart Syndrome (HLHS) just like my Lily but also like the famous football player Greg Olsen's son and so many other children that do go home and live long lives!! Sadly.. our babies did not make it yet so many thankfully do.. I just know that Gracie and my Lily Grace are great friends in heaven.. with all of her other little angel friends too!! ♥


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