Saturday, March 30, 2013

Trisomy Awareness, a small and very Blessed world!

For Day 29 of Awareness, we would like to share a story that really shows what Trisomy Families is about: Uniting and Supporting.. This a story of 2 moms brought together by Fate, Chance or Divine Intervention, or whatever you may to call it, there is no denying that these Moms we destined to be friends and sisters at heart.

Janet and Whitney (as told by Janet):
I started following Aralyns story when she was just a baby, long before I ever had a trisomy pregnancy of my own. Last year when Whitney was trying to get to the TF Celebration in Florida I had an auction on facebook and sold some hairbows I was making at the time, with all proceeds going towards Aralyns trip to Florida. After that, Whitney and I began talking more frequently. In September I found out the baby girl that I was carrying was also a Trisomy baby. Allison had Trisomy 13. From what I had learned from Whitney and Aralyn, it made the choice easy to decide to carry through with my pregnancy and to know that the doctors were not always right. Had I never met Whitney I would have been very lost during that time, but from the strength I learned from her, I fought through making the best choices I could for my daughter. I was placed in the Trisomy community long before I knew I would become a part of it by following Aralyns story.

Allison’s Story:
In May 2012, my husband and I were overjoyed to find out that we were expecting our second child. We found out that we were expecting our second daughter later that summer and we were over the moon. We couldn't wait for our oldest daughter Olivia to have a sister. We were dreaming of them staying up late at night whispering and being the best of friends. On September 20, 2012 our worlds were turned upside down. We went to get our 20 week ultrasound just to measure growth and get another look at our little girl. We got much more than we bargained for. Our daughter had many complications. She had 2 heart defects, a problem in her cerebellum and a cleft lip and palate that they could see. From following my friend Whitney's daughter Aralyn, as soon as they told me they were markers for Trisomy, I knew we were in for the battle of our lives to get some time with our daughter. All I wanted to do was get out of there and speak to my OBGYN. I went to her office after my ultrasound and she just held me as I sobbed. We decided we were going to go to a specialist and find out what we were dealing with. We got Maternit21 testing done because I would not risk a miscarriage, and also from learning the little bit that I knew about the Trisomy community, I also knew we wanted an IDEA but not an DEFINITIVE diagnosis. Once these babies are diagnosed, their diagnosis begins to "define them". I refused to let anyone define my child as anything other than Allison Ann. Her life was precious to me and I was going to carry her and love her for as long as I could. The specialist offered termination. Obviously I said absolutely not. We waited a few weeks for the results of our blood work, and my OBGYN called me with the results - Trisomy 13. We knew this was bad. Really bad. We went back in to the specialist after our results to firm up a birth plan, to find that our appointments with the fetal cardiologist and neonatologist were cancelled. We were told we could have her wherever we wanted we didn't need to have her there. A NICU wouldn't save her. If I had her alive, it would be only a few moments until she passed, but not to even count on that. I went home resigned to this idea, that my baby would just die, likely in my womb, and I couldn't do anything about it. I got ahold of Whitney and we talked more about it. I realized that the reason she had Aralyn was because she didn't give up. They told her all of these same things. I couldn't give up on my daughter. She was kicking wildly inside of me, and everyone was treating her as if she were dead already. I called my OBGYN and my Pediatrician and we talked. We decided to go to another specialist. A completely different hospital. We told them what her diagnosis was and they agreed to helping me get EVERYTHING I wanted out of my pregnancy and my time with her. I just had to decide what it was that I wanted. First and foremost I didn't want her to suffer any pain. I wanted her to feel love and be nurtured first before anything was done to her. Secondly, I wanted to meet her ALIVE. I wanted to tell her I loved her and feel her warm skin on mine. I wanted the breath of life for her. My OBGYN then committed to making sure that happened for me. We began going to the specialist once a week and getting BPPs on her. Things were going very well in my pregnancy. She was moving and growing and practicing her breathing in my womb. At this time we decided we need her plan for after birth. We wanted to hold her, love her, and then after some time with her, have her evaluated. We knew her problems were extensive and if she only lived a short time, I wanted it all to be with me. If she were thriving on her own, we would have her sent to the NICU the next day and start a "plan" for getting her home. All I had to do was get her here alive. In my 35th week of pregnancy, Allison stopped moving in my womb. I had a BPP scheduled and I was terrified she had passed. 2 days had gone and I was afraid to go find out what had happened. Miraculously, her heart was still beating! It wasn't as strong as it used to be. They watched her for a very long time, coaching her, talking to her, having me move in different spots, giving me juice to drink, and nothing. She was failing. They hooked me up to an NST and she failed that as well. Her heart wasn't accelerating. Then they called my OBGYN and put me on the phone with her. I had a choice to make. If I wanted to meet Allison alive, now was probably the best time to do it. If I kept going, she may be stillborn, which still is a thought I cannot fathom. They were ready to admit me and begin my induction immediately but I couldn't do it. I had to think. I asked if I could go home and come back the next day. I thought maybe Allison would get better. My doctor said there was no harm in it, but if I changed my mind at any point in the night to call her and she would begin the induction. I went home and packed all of our bags. I spent some time with both of my little girls and prayed. I asked God to let me know if it was truly time. If she would just move once I would continue the pregnancy. She never did. I went to the hospital at 9am on 12/21/12. They checked her heartbeat, and it was still there, so the induction began. I gave birth to Allison Ann Scheller on 12/22/12 at 4:10 a.m. She was 4lb 13oz and 18 inches long. She came out CRYING! They told me she may never cry - but she did! Just moments after she was out, she was baptized by my pastor who spent the night in the hospital with me. Friends and family filed in 2 at a time to see her for a moment. We didn't know how much time we would have. Just shortly after her birth, she began gurgling and her heart rate dropped to 30. They brought the Peds in who told me these were signs of the end of life. I grasped her and started screaming at God that he could NOT have her. She was MINE. I begged and cried and screamed as my pastor prayed over Allison and me. Somehow, Allison recovered from this and held on. She lived for 24 hours and 15 minutes before falling asleep in my arms and waking in the arms of Jesus. If I could say one thing about carrying and loving a Trisomy baby is that it is WORTH it. The unconditional love they teach is incredible. If you get them for a moment or for many years, they can teach you so much. I feel blessed to be chosen to have one of Gods miracles, even if it was only for a short time. My daughter not only knew love - she taught love. She taught me to love in a way I never knew. She continues to touch people even after her time here was done. She was a joy, and I wouldn't change her for anything. Trisomy never defined her. She was Allison Ann Scheller. And her life was a miracle.

Janet and family met Bunny and her mom in person, at the Trisomy conference and Celebration this month! 

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