Kori’s Story: Jacklyn’s Journey

December 5, 2022

Jacklyn’s Journey began in March of 2021 when we found out that we were pregnant with our 3rd baby girl. I went in for a regular anatomy ultrasound around 20 weeks, and it was discovered that our baby girl had some markers pointing to a possible genetic condition. She had a large hole in her heart, a few pockets of fluid on her brain, and her fists were clenched.

We opted to do the amniocentesis to confirm what was suspected, and on July 12th we got the call confirming Jacklyn had Trisomy 18, also known as Edwards Syndrome. Trisomy 18 is where the 18th chromosome has 3 copies instead of 2 and every cell in the body can be affected. We were told a whole bunch of awful things that could be “wrong” with our daughter, but ultimately we chose life for her and that we were going to do anything we could to give her the best life possible.

We spent the next 4 1/2 months monitoring her growth, checking on her heart, and researching all the different possibilities of what to expect when we finally get to meet Jacklyn. The original anomalies seen in her ultrasound had resolved except for her heart defect.On November 1st at 37 weeks and 6 days we went in the hospital to be induced. Jacklyn was born November 1, 2021 at 8:19 pm via emergency C-section, weighing 4 lbs 6 oz and 17 inches long. Jacklyn gave us 3 little cries when she was born. Shortly after that she had trouble breathing on her own, so she was intubated. After she was stabilized and I got to see her, she was taken over to CHOC [Children’s Health of Orange County]. 

Since the day we learned about Jacklyn’s diagnosis of Trisomy 18, we have always said that this is her journey. She’s the one in charge, and we are here to follow her lead and support her in every possible way.

At CHOC, Jacklyn has been supported by the greatest team of doctors who have been open and willing to provide any treatment we wanted for her. She also has had the best team of nurses, Katrina and Victoria, who look after her each day and night and have treated her like the princess that she is. 

On Monday November 8th, Jackie got to meet her two Big Sisters. Her nurse Katrina planned out the perfect spa day for our 3 girls. Kaiden and Kenzie got to help give Jackie a bath, pick out her outfit, sing her songs, read her a book, color pictures to decorate her room, and even did a little photo shoot all together.

As each day passed, Jackie began to lead us down a path where each day was a little more challenging for her than the day before.  On Wednesday November 10th, Jackie spent the entire day meeting all of her grandparents and all of her aunts and uncles. Her room was filled with so much love, you could just feel it when you walked in, it felt like a giant hug.

Wednesday evening Mom and Dad got to spend a few hours holding Jacklyn with no more monitors, no more ventilators, no more IVs. Just Mommy, Daddy and Jackie surrounded by nothing but love. At 9:55 pm, in her Daddy’s arms, Jacklyn closed her eyes for the last time and gained her angel wings. In 9 short days, you have forever changed our lives my sweet baby girl.

We love you and miss you Jacklyn Anne Porter 11/1/21 – 11/10/21

– Kori P.

Jackyln’s Journey continued for their family as they celebrated her life on her first heavenly birthday. Below are a few pictures of the special, beautiful event:

Heart Divider

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