Jonas,
My miracle baby. I can’t wait for the day I can share your journey with you and make it known to you, just how special you are. You have defied every odd against you. You are a fighter and such a warrior. As you grow into such an amazing little boy, I can’t help but think of how far you’ve come.
As a young mother, a fetal diagnosis was never a thought that ran through my mind when finding out I was pregnant. When we first discovered that you had a birth defect that was causing a blockage in your bladder I didn’t think twice to start intervention immediately. I was told if we did not drain your bladder there was a high chance it could burst and we could lose you. After several fetal procedures to drain your bladder, it was time to take the next step to save your life.
I underwent two bladder shunt procedures which failed and in which one caused me to lose almost all amniotic fluid. The contractions were so intense I was told to expect to deliver at any time. At the time, I was just shy of 23 weeks. I was so scared, I remember crying so hysterical and praying, telling God that I physically did everything I could and that everything is in his hands now. Just please save my baby. When I was stable enough to be released I was put on bed rest at home and transferred care to CHOP where they kept a close eye on you until you made your early grand appearance to this world. I spent everyday of my pregnancy wondering if you would be able to breathe on your own or if your kidneys had any damage from your bladder. Was everything I did enough?
The first breath you took in this world was completely on your own, with no assistance all the way through out your NICU stay. You had developed completely normal, aside from your kidneys and bladder. Those weeks you were in the NICU had felt like some of my worst days. It killed me to see you in the hospital with nothing I could do to help. The power of prayer brought you home to me.
You recently had a vesicostomy, and although it has been one of the biggest lifestyle changes, you never fail to have a huge smile on your face every day. This is the first step to new health and in the near future you will need a Kidney transplant.
I often feel terrible and question why you’ve had to go through so much at such a young age, but I am reminded that you are here for a reason and your story will touch lives. You will make it through any obstacle that comes your way. This is your journey. I am here every step of the way.
I love you my Miracle baby. ♥️
Love, Mommy
