Jameson

On November 27th, 2018, my husband and I went in for my 22 week ultrasound. We went in so excited because we were finally finding out the gender and were planning a gender reveal party later that night with our friends and family. The tech wrote it on a paper and the nurse called my sister in law to let her know the gender (since she was the one making our cake pops for the reveal). Once the tech had written down the gender, we met with my doctor to discuss the ultrasound. The first thing he told us was, “We need to talk.”

Right away my heart sank. He asked, "Have you ever heard of Spina Bifida?" I immediately lost it. Up until that point, throughout my whole pregnancy, I said, “I don't care what we're having as long as the baby is healthy.” My husband and I were feeling so lost and dejected. We left the doctor’s office and went over to my in laws house to tell them what we had learned. To our surprise, they were very positive about it and made us feel a little better about our shocking news. We continued with the gender reveal and received a lot of love and support from our friends and family.

The next day we met with the MFM team at the hospital and experienced one of the worst days of our lives. We were told that our baby’s spine was bent at a 90 degree angle and that our sweet baby would have a very poor quality of life. They scheduled us a fetal MRI for the following week and an appointment right after with a dedicated spina bifida team to talk about the results. Fortunately for us, we happen to live in a city with one of the nation's best children's hospitals. They were able to shed some light on our situation and they were much more optimistic about our sweet boy’s outlook on life. They gave us hope. Life wouldn't be easy for our Jameson, but he would be a blessing. They told us right where his legion was on his spine (L3-S2) and also helped explain all the complications that come along with spina bifida. Complications like hydronephrosis, caused by a blockage in the tube that connects the kidney to the bladder and hydrocephalus, which is too much fluid on the brain. Jameson has both and a lot of times, with hydrocephalus, it requires a VP shunt to help with the fluid.

Fast forward to 34 weeks of pregnancy. I went in for a normal check up, which I had a lot, because Jameson only had a two vessel umbilical cord which caused IUGR (intrauterine growth restriction). On March 6th, 2019, at 5:36 pm via emergency c-section, Jameson was ready to say hello to his family. Born at 3 lbs 9 Oz. 18 inches long, baby and dad were taken right to Primary Childrens Hospital. It was one of the hardest things I've EVER had to do. Watching as medical professionals whisked my baby away , while I just had to lie there and and wonder. Thankfully, dad was by Jameson’s side and never missed a minute.

With Spina Bifida, the doctor’s typically do surgery within the first 48 hours to close his back where the spine is exposed and keep risk of infection down. Before surgery, they did a full work up on Jameson. While visiting him the next day, my husband and I learned that they found a few more things about our son that we didn't know. They found a coarctation of the aorta (a narrowing of the large blood vessel that leads from the heart), a cleft palate, and Pierre Robin sequence (which restricts the airway and makes it very difficult to intubate). All of this news was a shock, but we took it the best we could and knew our little warrior could handle it.

Jameson spent 70 days in the NICU. He had 4 surgeries during that time and has since had 2 more, with a few more to come. Jameson has been the light of our life. He has brought so much joy and happiness into our lives and he is one of the happiest babies I have ever seen. With Spina Bifida a lot of babies don't have a ton of function from the waist down. Jameson is very blessed, as he can move all the way down to his toes, except for his left foot. He doesn't have feeling in it from the ankle down, but he is constantly rolling over and almost sitting up on his own. He will be crawling before we know it! We were told that he would have a hard time eating and drinking with his small jaw and cleft palate. While this has been somewhat of a struggle, mostly because of all the surgeries/hospital stays, his hard work and determination have paid off as we have been able to remove his NG tube and he has been able to get enough nutrition to keep gaining weight!

Jameson is truly a blessing. He has given me a different perspective on life and opened my eyes to a new world of people and kids I never knew. While in the NICU we made some pretty amazing friends that we would have never met if wasn't for Jameson and we're so lucky to have them in our life. I used to follow a lot of trash on social media, but with Jameson I don't have time for that. I had to delete it and I started following all these amazing beautiful babies and kids that I look up to!

Jameson has taught me to be more patient and kind to others because you don't know their stories or what they are going through in life. We've been able to teach our 6 year old to be kinder to others too, no matter what they look like or what they are going through. I could go on and on for days about Jameson and the trials he's gone through and what he may go through, but all I know is that I smile when I look at him and waking up to him is all I need to keep me going. His smile can melt even the hardest of hearts!