As expectant parents of a baby with a fatal diagnosis before birth, Jaelyn and Tim heard those three words that are a parent's nightmare--"incompatible with life." Even after many years, I can still recall the surreality of hearing our doctor speak those same words about our baby, Emily's heart defect.
I admire Jaelyn and Tim's willingness to share their family's story. It has only been five months since Paetyn arrived and then made her way back home. But, as Jaelyn explains below, they certainly did make the best of each moment they had with her during the pregnancy, and for the few short precious hours of her life. We will join with them in celebrating Paetyn's journey at the Running with Angels 5K on May 19th.
As first-time parents, we were thrilled to find out that we were expecting. We had a handful of names that we liked, but our dreams of what we would name our first child became real when we found out that we were expecting. We never thought that we would be the ones to name our baby before it was born, but looking back now we realize what a blessing in disguise this decision was. Daddy(Tim) is a big Bronco’s fan and has always admired Peyton Manning as a quarterback, and also as a person. Mommy (Jaelyn) also liked the name, and not knowing the gender of our baby yet, we decided that Peyton would be a good name that could go either way and we would figure out the spelling after that.. We had lists of a dozen ways to spell it, but after finding out that we were expecting a little girl, we settled on “Paetyn” because it was spelled like Mommy’s name, “Jaelyn”.
We excitedly looked forward to our “Big Dr’s Appointment” where we would get to see a longer, more in depth ultrasound of our baby girl and how she was growing and developing. A few short minutes into the ultrasound, the radiology tech put down the transducer, told us there was a problem, and that she was going to go get our Dr. Our minds swirled and our hearts broke in that moment, and later as we met with the specialists, told our family, and tried to cope with the news that our baby had a condition that was considered “incompatible with life”.
Paetyn was diagnosed with a condition called Acrania, related to the more commonly known diagnosis of Anencephaly. This meant that the top part of her skull did not form around her brain. We were told that as she moved and grew while in the womb that her brain would likely deteriorate and it was unknown if she would survive her birth. If she did, there was no way of knowing if she would live a few minutes, a few hours, or possibly even a few days.
As hard as this news was to accept, we recognized quickly that the time we had to spend with her would be short, so we decided to make the best of every moment that we had with her, starting right then. We had many family get-togethers, dressed Paetyn up as a Pumpkin for Halloween, a Turkey for Thanksgiving, and even took her to see Santa. We made every day count in the things that we did together as a family of 3, and we cherished every little kick and squirm.
Paetyn J Allen decided to make her entrance into the world at 32 weeks on Sunday, December 17, 2018. She was 2lbs 10 oz, 14 inches long. We were blessed to spend a wonderful 11 hours with her. During that time, she made sure to let us know what a dainty little princess she was. That morning after getting in her beautiful blessing dress that Mom made from her wedding dress, a bracelet from her Grandma that she was wearing around her wrist began to fall off, but she caught it with two of her long fingers, saving her princess bracelet from falling to the ground. Later, we tried to move the sweet little lamb Paetyn was snuggling with so we could take other pictures. As we did, Paetyn tightened her grip on it and pulled it in to her. Of course, we couldn’t resist her request and let our little princess hold onto it a little longer. That evening after Daddy painted her fingernails, she picked up her hand off of Mommy’s and turned it to admire her nails. When being held by family members and told that they loved her, she would respond by raising her strong little neck and nodding her head, or giving one of her perfect little Paetyn squeals to show she agreed and loved us too. She even picked up her hand and waved to her cousins while Skyping them which was the most she moved at one time all day.
Paetyn truly is our little angel. We feel so blessed to be her parents and to have her as a part of our forever family. It hasn’t been an easy journey, but we sure love our Paetyn. We’re so grateful for the love she brought and shared with us for those 11 hours, and all she continues to bless us with. We love knowing our Paetyn “runs” with us daily.
As a way for us to share our story and updates with family, we started a website with our story, things we did to celebrate her life, information about Paetyn’s condition, the miracles we saw, weekly blogs, and lots and lots of pictures. We would love to share more of the details of Paetyn’s journey with you. That website is www.paetynsjourney.com