- Posted July 8, 2014 by
This iReport is part of an assignment:
Raising a special needs child
True Miracle Baby
Being pregnant is suppose to be one of the happiest times of your life, right? Well for me it was a very scary time. I was 22 years old and and 23 weeks of my pregnancy we were told that my son was not going to make it. We were told they could not find Kidney's or a Bladder. I had very low amniotic fluid and they gave me an option to abort. I of course chose to keep him and see what would happen. I was on bed rest and so heart broken, I felt like I was being punished for some reason. My heart ached all day and night. No one ever wants to hear the words " I'm sorry your baby is not going to make it".
I had to see a specialist every week to keep up with my fluid and it slowly kept getting a little better. At 33 weeks my water started leaking and rushed to the hospital where they put me on bed rest because they wanted me to at least wait until I was 34 weeks before he came out. During that time I was miserable I had no idea what was going to happen. We had so many different people come in to talk about what would happen if our son didn't make it and it was so overwhelming. On June 23, 2013 at about 9pm the dr came in and said I was 3cm along and he felt a butt so they rushed me off to have an emergency c section. I was 1 day shy of being 34 weeks.
He was born at 9:15pm weighing 4lbs 4oz and 17 1/4 inches long. He got sent to the Children's Hospital of Omaha where he underwent his first surgery to get a Colostomy bag because he was born with an imperferate anus. He was also born with Penal scrotal transposition(his scrotum is on top of his penis). About 2 weeks after being born Easton had his 2nd surgery to get a Peritoneal Dialysis Catheter and started dialysis and was on it for 1 whole day and started to do great! He was in the NICU for 4 more weeks after that and our dreams came true he got to come home with us! He had frequent lab draws to make sure everything was staying good.
He was home for almost 2 months before his lab work showed Kidney Failure so he was admitted back into Children's Hospital. We ended up finding out that Easton was born with 2 conjoined Kidneys that are in his pelvic. He is currently on Hemo Dialysis after so many infections and stuff with the Peritoneal Dialysis. He has had 9 surgeries so far and Wednesday July 9,2014 He will be admitted into Children's Hospital for his 10th surgery to be getting a Urostomy because he was born with a 1cm big bladder. We were told that he would have the Ostomy and Urostomy for the rest of his life. He also does not eat food or drink from a bottle. He has special formula that is like making a potion. We have to put some powder in it that takes out the potassium and it has to sit for 4 hours before we can give it to him. We have to make it brand new every day. He has a g-tube on his tummy along with his dialysis catheter and his ostomy bag. He can't take normal bath's because his catheter can't get wet. He has came a long ways since he was born, he has spent about 9 months all together of his life in the the hospital and he is recently trying to crawl, he can go backwards and sideways just not forward. He has learned how to clap and he loves to play peek a boo. He also just learned how to play " How big is Easton, SOO BIG"! He absolutely loves the movies "Frozen" and " The Lorax". He laughs at them like he knows exactly what's going on.
It's difficult raising a child with special needs and having so many people not know what its like and they try giving you advice, which is thoughtful but if you have no idea what goes on with him on a daily basis why are you trying to give advice that you know nothing about. or how many people might judge him because he will have a "poop" and "pee" bag. Or how will he go to school, will he be made fun of? He will eventually get a Kidney Transplant and I hope and pray that I am the perfect match for him. I would love to give my child a chance at life and hopefully a somewhat normal life. He deserves it more than anything. I have not worked in over a year and I am so lucky and thankful that I get to be home with him and spend the most important years of his life together. We have so many supporters for him and we love how many people pray for him. The power of prayer works. He deserves to live a wonderful life and his father and I try to give him everything to make this life easier.
He is the happiest baby I have ever seen, he smiles and laughs all the time. People always say " I don't know how you do it" Or " I could never take care of a sick baby" the truth is yes you can. You will do anything you can for your children and anything and everything they need to keep them here with you. I know my son Easton was a true miracle sent to me and I feel like a nurse and a mommy all in one. I have learned stuff I never even knew I could do, or even knew existed. I am very proud of my family and how strong we have had to be through everything we have been through so far with our little man!
www.facebook.com/helpeastonkeepfighting for more updates.