Tuesday, June 25, 2013

Peyton's Story, by her mama

Post by Marcia

Our story begins in July 2010 when my husband Kyle and I found out that we were expecting our third child. It came as a shock for us. Our two older daughters were 7 and 5 years old, and we had just finished cleaning out our basement of baby items and clothes two months prior, figuring the baby days were behind us. Kyle had just turned 39 and I 38, and we had not anticipated in having any more children, but then a little surprise came into our lives. Our two daughters, Lauren & Kaitlyn were very excited to be big sisters, and we learned that our little bundle of joy was due to arrive March 28, 2011.

I was somewhat nervous and concerned from the beginning about the baby’s health given my age. However, I pushed my fears aside, especially as we ended the first trimester and everything was fine. I did have some bleeding when I was between nine and ten weeks along, but the bleeding subsided, my cervix was closed, and baby’s heart was beating away. The second trimester came along though, and everything started to change after an 18 week ultrasound in October 2010. A “lemon” sign was present on our baby’s head (a marker for spina bifida), and she was one and a half weeks behind in growth.

We were referred for another ultrasound the following week at Maternal Fetal Medicine at a hospital thirty minutes away. When the second ultrasound was completed, no lemon sign was present, but our baby was one and a half to two weeks behind in growth, so we had to come back every three weeks for her growth to be monitored.

In November, at 22 weeks along, we reported for an ultrasound. This time, it was noted that our baby girl, who we named Peyton Elizabeth, was two weeks behind in growth, and that she was now displaying an echogenic bowel and an enlarged kidney. While we were concerned with the news we were getting, we still opted to not pursue an amniocentesis yet. We felt that the doctors were being overly cautious. I did consent for blood tests to determine if I was a carrier of Cystic Fibrosis or if I had any viruses in my body. The results did come back that I was a carrier of Cystic Fibrosis, but we kept a positive mindset. We still believed that Peyton was going to be fine plus nothing was confirmed yet.

Our next ultrasound was on December 13, 2010 at the start of my 25th week. That day we learned something serious was going on with Peyton. During the ultrasound, the doctor found a heart defect (VSD) in her, and Peyton was now five weeks behind in growth. She had hardly grown since her last appointment. We became highly concerned at this point and opted to have the amnio that day. Cystic Fibrosis was no longer the suspicion, but Down’s Syndrome or another chromosomal disorder.

We were scheduled to come back in three weeks for another appointment. We were very worried when we left MFM that day for our daughter’s health. The news came on the afternoon of December 15th when the genetic counselor called us. She told us that Peyton had Trisomy 18. I had never heard of this disorder before. The genetic counselor went on to say over the phone that babies do not survive, and that our baby would die either before she was born or shortly after. I cried, but then went into complete shock and disbelief. I couldn’t believe this was happening that I had just heard those words. It felt like an out of body experience, like it was happening to someone else, not us.

It was at this time I started sharing the news with our friends, family, and my coworkers through word of mouth and even Facebook. I felt the need to get Peyton’s story out, and we needed all the prayers we could get for our little Peyton. I began to research about Trisomy 18, and had read that a small percentage of babies do survive to birth, and live sometimes a few hours, weeks, and years. I prayed
that our baby Peyton had the strength to beat the odds. I just wanted her to stay as long as possible, but I didn’t want her to suffer and hurt either.

Because Christmas was upon us, I decided that we need to make the most of the holiday season, and celebrate it with joy and happiness for our precious Peyton. I did my best to push sorrow and distress aside, even though I felt her kicks and movements starting to become weaker. I knew it would likely be Peyton’s only Christmas holiday with us here on earth, and I wanted her to be surrounded by peace, tranquility, and joy in her remaining days here.

Tuesday January 4, 2011 was another day for an ultrasound at MFM. I was now 28 weeks along. I was anxious to see how she was doing, to hear her heartbeat. However, we got the horrible news that day. We were told that Peyton no longer had a heartbeat. Our little girl was gone. It was devastating. I thought she was still moving inside of me. In fact, I would feel these phantom kicks & movement for the next several months. I couldn’t believe her death happened so quickly after we received the news of her diagnosis. I didn’t want her to be gone yet. The doctor at Maternal Fetal Medicine sent us to the lab while in tears to have my blood drawn and then sent us home to wait for an appointment in the afternoon with my regular OB so that we could make arrangements for delivery at our local hospital. I have to say that the treatment we received from MFM that day and even from the phone call of her diagnosis & prognosis felt cold and insensitive.

I wasn’t able to report to the hospital until two days later, Thursday January 6, 2011 at 5:00 a.m., as we were told that the rooms in the maternity wing were full. My labor lasted close to 36 hours. Peyton was born still on Friday January 7, 2011 shortly after 5 p.m. Peyton’s body was in pretty poor and fragile condition due to the effects of decomposition on her little body. She likely passed between 27 and 28 weeks and then it was nearly another four days from the time we learned of her death until her delivery. The effects of death on such a little baby were not pretty. I had wanted our family and girls come hold Peyton, but in the end, Kyle and I thought it was best for them not to see her in such a state. It was upsetting to see her that way, but it was important for us as her parents to hold her and say our goodbyes.

We did take some photos of us holding her, and the hospital took footprints as well.

Her little feet were in perfect condition. It would be weeks later that I would regret not taking photos of her precious little feet. There was no NILMDTS in our area or anyone to guide us in taking photos. In fact, our local hospital only had a polaroid camera available. Luckily, we did have our digital camera. Our priest came and blessed Peyton. The hospital then dismissed us at around 9 p.m. that very evening, and we left with a memory box instead of our little girl. Our hearts were broken. I remember kissing her on my way out the door and walking to the elevator with the nurse and being escorted to the door, but I remember nothing of the way home. Two days later we met with the funeral home and the priest to make funeral arrangements and decide upon a burial place in the cemetery. We held Peyton’s visitation three days after her birth, on January 10, 2011, so that we could thank our family and friends for their prayers and support as well as have a chance to talk about Peyton. Her funeral followed the next day on January 11, 2011 where we had a graveside service. I remember tears in my eyes and holding my surviving children close to me. I remember crying out in the end that I wanted her back with me. I remember touching her casket before we left the cemetery to go home.

In the first month or two after Peyton’s death, we were in so much shock and we felt completely numb. We kept hoping that we would wake up one day and find that it was all a nightmare. But that day never came, and slowly we left the shock and numbness stage, and began to feel the intense sadness and pain. We began and continue to find ways to express and cope with our grief. Grief over the loss of ou beloved baby girl is not an easy journey, but through all of it, from Peyton’s diagnosis, her short life, and her death, we felt Peyton had an important message and legacy. We saw how she affected people from our friends & family to strangers we had never met, once they heard her story. Through her life and death, she reminded us all of the importance of love, faith, hope, and compassion. We hope to continue to spread this legacy of hers. She truly is a special and most precious baby. She is loved and missed greatly.

To read more of our story and my journey, visit our Beloved Peyton’s website.

From Peyton’s funeral service cards…“How very softly you tiptoed into my world. Almost silently, only a moment you stayed. But what an imprint your footsteps have left upon my heart” ~Dorothy Ferguson


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