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Raising Special Needs Kids Raising Special Needs Kids

My son wasn't suppose to live but he is here and thriving! ♥

Posted by on Dec. 5, 2012 at 8:27 PM
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1 mom liked this

Hi my name is Cynthia. I wrote my story for our Facebook Page and because of its legnth I will copy and post it here for all of you. (:

I want to take you through our journey. I want you all to see the experiences and feel the emotions we felt. I want to take you to where it all began. I want to share with you our story. I want you all to feel inspired to pray for my baby and my family, for nothing else in this world matters to me but my son Jaxson. On October 3, 2011 Alex and I had our 20 week ultrasound. We were so excited to find out what we were having! We wanted a boy more then anything and when the ultrasound technician confirmed it was indeed our Mr. Jaxson we have never felt so much joy in our lives. As we left our local clinic we rejoiced with our family and friends over the fantastic news that had warmed our hearts! We had so few boys in our family that to hear we were having Jaxson was the best feeling in the entire world. Unfortunatly it was short lived. :( I had just finished uploading all of our pictures of the ultrasound and was sharing our news on facebook when I recieved the worst phone call in my entire 21 years of exsistence. The doctor on the other line was very hard to understand and I remember not being able to comprehend what she was saying. "Your baby has multiple anomalies that I cant confirm, we have you scheduled to see a specialist in DSM, Ia for a higher level ultrasound to confirm our findings." ...Anomalies??? What could this mean?? "We see something wrong with your babies brian, face, heart and feet." :( My heart in my stomach I asked her what this meant and she had nothing else to say but that the doctors in DSM would have to confirm what they were seeing. Never have I been so sad and devistated in my entire life. The hope of a happy healthy baby never to be seen, only heartache and sadness. I spent the entire week dreading our appointment, crying and quiet. I so desperately wanted my baby to be ok. I was so scared of what was to come and I think that was the beginning of my depression. On the day that I'll never forget, Alex and his parents accompanied me to our ultrasound. I knew something was very very wrong. The technician was gloomy, she never smiled, laughed, joked. She was soooo serious and it made everything so much worse. As she pointed out Jaxsons body parts she wouldnt answer any of our questions. I cried the entire time. As she deliberated with the doctor outside the room I knew we were about to recieve heart breaking news. The doctor confirmed the following: Our baby had a fluid filled cyst in his brain, a bilateral cleft lip and palate, an artiroventicular heart septal defect, club feet, and 6 toes on each foot. As he showed us on ultrasound he never seemed to stop saying things that were wrong with my baby. I remember the silence of Alex sitting in the chair next to me, I remember the silent tears his mom cried as she held my hand. I remember the seriousness of the doctors and nurses. It will be a day I will never forget and I try so hard to not think about. They suggested an amniocentesis to check for chromosome disorders. They told me that my babies chances were slim. They said babies with multiple anomalies typically dont survive utero. They said a termination might be in best interest. They told me they'd start me on a labor inducing drug, I'd deliver and hold my baby till he died. They.. broke my heart. I complied with the amnio.. They stuck a large needle through my abdomen, through my uterus and took amniotic fluid from around my baby then they sent us on our way. The trip home I layed my head in Alex's lap and cried till I had no tears left. :'( I stopped working, I layed in bed and sulked... holding my belly and feeling Jaxson kick, stretch, hiccup, and spin around to reassure me he was still alive. The rapid part of the amnio came back normal!! Jaxson had no major disorders but unfortunatley the rest of the results still took another week. I spent the next week looking up multiple birth defects on google. The images were horrific. I don't think I will ever be able to explain in words the hopelessness and sadness I felt during my pregnancy. Never have I been so scared. With the second results in we were so relieved to find out Jaxsons chromosomes were fine based on our amnio. This was the first bit of faith that I found in my son. From that point on I told myself that I would fight till the last beat in his heart, I would give him the chance he deserves.. I would never give up on him and I was going to be the best mommy I could be for my baby. I took it upon myself to never go back to the DSM clinic and I made myself an appointment in Iowa city at their high risk unit. For the remainder of my pregnancy I had an ultrasound every 2 weeks to look for signs of heart failure. The first 5 appointments were scary, at this point I never knew what they were going to say but as I realized Jaxsons condition was stable, unchanging and ok, I felt more faith in my son. As the time got near to deliver (37 weeks) they said that the chances of him dying in utero were slim but they couldnt tell me how he would do in the world. They didnt know if he would know how to breath. They didnt know if he would live. I've been told my baby would never have a normal life, that there are lots of things they can do to him but not for him. They gave him a 50 50 chance. I was asked if I wanted to let mother nature take its course or if I wanted to have the doctors intervene and fully resuscitate him if needed. I chose to have them save him with all their power. when the day came to deliver the fear I felt 20 weeks ago returned. I didn't know what to expect, I've never had a child before, I had two previous miscarriages and so the only thing I knew was sadness. I was induced on Feb 16th, 2012 at 40 weeks 3 days and gave birth to my son naturally at 6:11pm Feb 17th, 2012. He wasn't breathing. The doctors rushed him to side of the room and bagged him to life, they intubabted him and took him straight to the NICU right after rolling him to my bedside when he was stable. He was beautiful. Only an hour after giving birth I went to see him, I didnt care my epidural hadn't worn off. I had to get to him. I had to see my baby. He was having sever siezures, and was blindfolded because he had juandice. They gave him an anti siezure medication phenobarbital which put him unconcious. They hooked him up to an EKG machine and seen he was having silent siezures as well so they added another anti convulsant. On day 4 his siezures seemed to stop and he was slowly weened off his siezure medications and has not had a siezure since and no meds to treat them!! They also took him off his vent and he could breath on his own with no help!! (: My baby had the essentials to live on this earth! He knew he was hungry, he knew when his diaper was dirty! My baby could live! On day 7 I finally got to hold my baby and I finally got to experience the same joy that I felt when I was first told I was having a son!! After 34 days at the NICU we were discharged to go home!! We've had a few scares since being home that have required hospital visits or overnight stays but he really is stable and doing great. Sometimes I find it very hard to share my story and I have never told anyone in detail the things I felt or been through until now. I want to share his story with the world!! Jaxson will be having major open heart surgery in August, Orthopedic surgery in OCtober-november and facial reconstructive surgery in December. All in 6 months. I am so scared. I want everyone to pray for him! I want you to lift him in prayers and pray for healing. I want my baby to make it so bad! He deserves to be here on Earth with me. His smiles bright up the room, he loves to cuddle with anyone who will pick him up. He IS why I was put on this Earth! He was given to me by God to roam this Earth and to touch peoples lives! Please share my story, my pictures, my updates! Let the world know Jaxson and show him how much he is loved by everyone! It was hard for me to look back on what has happened, it was even harder to share it with all of you! But I am not ashamed of my son! He is so beautiful and strong. He is my inspiration to be a good person in this world. Let him be yours!!! (:

 

Currently there are some details of the story that have changed. Jaxson doesn't have to have open heart surgery till he is 2. And he has already had 2 bronchoscopys, a larynoscopy, hearing tubes, a cleft lip repair, toe removal surgery and a heart catherization. He is currently 9 and a half months old. (:

by on Dec. 5, 2012 at 8:27 PM
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Replies (1-10):
Nicholy10
by on Dec. 5, 2012 at 8:36 PM
1 mom liked this

That is a lot for a new mommy to handle. You are one strong woman, and he's one tough little boy! I'll pray for him!

cyn_jaxs
by on Dec. 5, 2012 at 8:41 PM

He has a lot of people in this world rooting for him. (: He has a very determined mommy and daddy. Our whole family and community love him to pieces. He will succeed as long as we stay strong and push him towards his goals.

mandee1503
by Amanda on Dec. 5, 2012 at 8:56 PM
1 mom liked this

Welcome to the group!

cyn_jaxs
by on Dec. 5, 2012 at 9:06 PM

Thank you! (:

kristy95
by on Dec. 5, 2012 at 9:15 PM
1 mom liked this
Amazing story! Do u have any pictures of your little miracle?
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cyn_jaxs
by on Dec. 5, 2012 at 9:23 PM

Of course I do! I'm really new to this site. So I will get some up soon!

sammygrl77
by on Dec. 5, 2012 at 9:36 PM
1 mom liked this
Wow! Welcome to the group and thank you for sharing!
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kristy95
by on Dec. 5, 2012 at 10:02 PM
Awesome. Can't wait


Quoting cyn_jaxs:

Of course I do! I'm really new to this site. So I will get some up soon!


Posted on the NEW CafeMom Mobile
letstalk747
by Joy on Dec. 5, 2012 at 10:19 PM
1 mom liked this

welcome , im joy , thanks for sharing

Elyssa414
by Elyssa on Dec. 5, 2012 at 10:20 PM
1 mom liked this
Thanks for sharing, and welcome to the group!
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