Friday, July 19, 2013

SB = Special Blessing, NOT Spina Bifida

It is only fitting that I start our birth story at 19 weeks of pregnancy as that is when our entire lives changed.

 I remember sitting in that very first Doctors office with all the wonderful thoughts running through
my head that every first time mother or parent must have. Will it be a girl or a boy? Will I be a good mom? Is he/she going to look like me? I never thought that I would have much more important things to think about over the next nine months. The doctor had asked many questions but the one that stuck out to me the most is if I would like to do any testing for birth defects and my answer was very straight forward, "
No! No matter what could happen this is my baby and nothing would change that." God must have decided to test my faith because nine weeks later I am sitting in a totally different doctors office receiving the news that my son has "myelomeningocele" a type of Spina Bifida. 
Myelomeningocele is a birth defect in which the backbone and spinal canal do not close before birth.  Those dreaded words..."There's a defect" were ringing in my ears and my eyes were filling with tears as I sat there in shock. I finally got the strength to mouth to Zach (my husband) "that's BAD" and let him take it from there. We left the office will little information on what the future held for our son and walked out to our pickup. I dialed the number to my moms house and she answered happily, awaiting to know the sex of her newest grandbaby little did she know that wasn't the biggest news we recieved. I told her it was a boy and handed the phone to Zach as I turned into a mess of tears. We spent a few moments calling the closest family members and letting them know the news. It felt hard to face the world but we had plans to go baby shopping after the appointment and I was determined to do so despite all the hard news. That day marked the beginning of the rest of our lives. 

Fast forward to July 5th, 2011. By this time we had settled into our new role as "special needs"
parents. We went in (Sanford) for my scheduled c-section that morning and by 12:15 the surgery had begun. Jonah Jacob Weber was born perfect at 12:42 pm and was whisked away to the NICU shortly after. Even though this was not how I had originally planned the birth of my first child to be it was short and sweet...and exactly what I could have asked for considering the situation. Jonah went in for his first surgery on July 7th to repair his myelomeningocele and his second surgery July 13th to place his shunt. Ventriculoperitoneal shunting is surgery to treat excess cerebrospinal fluid (CSF) in the brain which is called hydrocephalus. Jonah came home on July 17th after spending only 12 days in the NICU. Since then he has had two more surgeries: one to repair his shunt after it became clogged around 2 months old and one more surgery for an undescended testicle. 

Jonah is now two years old and the light of our lives. He is spunky and smart and always has a smile on his face. He has met every milestone on time with the exception of walking which he is working on with his walker and braces. He receives birth to three therapy services in our home several times a month and continues to see his doctors in Sioux Falls throughout the year. Other than that there are no daily reminders (besides a few scars) that our son was born with Spina Bifida. And now Jonah is very excited to be a big brother in January.I would like to finish our story by reminding every woman who is having sex to be taking the recommended amount of prenatals and folic acid months before becoming pregnant. You still need to even if you aren't planning on becoming pregnant! Before becoming pregnant with our second child I took 1 prenatal and 4mg of folic acid for four months. Having one child with Spina Bifida increases our chance of having another one by 4% but with me taking the recommended pills I have depleted that chance by 2%. At the end of this month we will find out if baby #2 has Spina Bifida. If you would like to follow our son's story please visit his caringbridge.


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