Haylee Stephenson Haylee's Heart Journey

First post: Mar 7, 2016 Latest post: Apr 12, 2016
Haylee was born February 9th, 2011. When she came out, she had a tint of blue in her skin, black hair, and blue eyes. Her eyes and face was swollen due to being in the birth canal for 24 hours. Haylee was born @12:01 pm, 7 lbs 14 ounces. She was perfect to me. But, she was born with a very severe, life threatening heart defect called Hypo Plastic Left Heart syndrome; she was born with half a heart.

This heart defect requires 3 palliative surgeries through her life, just to survive.

Hypo plastic Left Heart Syndrome is a congenital defect where the left side of the heart does not form, or is extremely underdeveloped. She was missing her entire left ventricle. Since she was born with a single ventricle, this left her a very sick little girl. Most kids spontaneously abort during pregnancy, but she held on. That's when we knew she was a fighter.

At 6 days old, February 15th, she went in for first open heart surgery; The Norwood Procedure. This surgery was the highest risk of all 3. The Doc told her Dad and I we had 80% chance of taking her home. After 10 hours, our little girl made it through her first surgery, but her recovery was far from over. She recovered well but experienced some complications with plural effusion (fluid around her heart and lungs). This caused a prolonged stay in the hospital, but we got to take her home at 31 days old.

When we got home, we had a lot to do. She had 11 different medicines, a stomach pump, oxygen sensor, baby scales and heart monitors. It was complete chaos. But, we got her well enough for her 2nd stage surgery; The Glenn. Our journey continued.

On June 6th, 2011, we arrived at Doernbecher at 6:00am. She was alert, happy and really hungry. She had no clue what was about to endure; again. After another 10 hour surgery, she was out. We waited for the doctors to come, and they did. They had good news and said she did great, nothing unexpected. We were thrilled, and so relieved. Soon after, Haylee's dad headed back to see her as the doctors said we could. When I turned the corner to follow him, he came running back, in a panic. His tears were flowing, his face was red and his eyes looked as if he saw a ghost. My heart sunk. He said she was blue and the doctors were rushing her back to surgery. I needed answers! After another 3 hours, we heard from the doctors. Her pulmonary artery was sewn crooked and was twisted during surgery. She had no oxygen to her lungs. A few hourseconds later I finally got to see my baby, and she looked peaceful. I was relieved. Shortly after we were on a road of turbulence. Collapsed lungs, heart failure, low oxygen levels, and the bad news would not stop. We took a step forward, then 2 steps back. But after patience, support and love, she made it again. We were home 32 days later. (Sigh)

We brought Haylee home and she was finally in the home stretch. We could focus on her recovery, and maybe enjoying a semi normal life without tubes, meds and equipment. We sang to her, I danced with her till I was out of breath, we read, talked, laughed and enjoyed every single second we could.

She is 5 now, and I tell you, she is wise beyond her years. She is beautiful, loving, stubborn and strong willed. She is my miracle baby. We have lived a great life, and without her, I would not be who I am. She has literally changed the lives of those around her, and has healed people with her presence without fail. She loves hard, will give you her opinion and usually has an answer for everything.

As Haylee has gotten older, she has gotten more tired and her body no longer agrees with 86% oxygen. She struggles to run for long distances and is short of breath when playing. Although she is in great health, it is time to give her body what it needs and endure a 3rd open heart surgery.

April 12th, Haylee will go in for her 3rd, and final surgery; The Fontan. This surgery has the best success and survival rate, but has complications during recovery. But, there is nothing we can't get through. We are excited to get this done to increase her function and her quality of life. Without this surgery, she would not make it to her teen years. We are grateful that she is a perfect candidate (some aren't as lucky). So, we will keep our heads up, and root her on! There isn't a day that goes by that I don't talk to her Angels. I thank them, whoever they are, for keeping her here. For guiding her, holding her hand and keeping her safe.

So please join us, and pray!! We feel so much love and see so much support, that's what gets us through these times!! I am truly blessed to know the people I do, and touched at people reaching out that I don't even know. It is incredible!! We love you, and thank you from the bottom of our hearts. Thank you for the support, in whatever form it us. Thank you ♡♡

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