Even miracles take a little time...

Who would have thought this would be our journey! At 20 weeks pregnant, my world turned upside down. We got the news from our doctors that Paisley had a rare, lethal form of dwarfism called Thanatophoric Dysplasia. Thanatophoric Dysplasia (or TD, for short) is a severe skeletal disorder characterized by a disproportionately small ribcage, extremely short limbs and folds of extra skin on the arms and legs. The term thanatophoric is Greek for "death bearing". Children with this condition are usually stillborn or die shortly after birth from respiratory failure; however, a small number of individuals have survived into childhood and very few beyond. Survivors have difficulty breathing on their own and require respiratory support such as high flow oxygen through a cannula or ventilator support via tracheotomy.

Basically, they gave us no hope for our baby. Little did they know, we were not giving up on Paisley and had God on our side. We connected with families who have children surviving with this condition and we questioned them daily trying to get as many tips and help as possible. We were determined to research everything about this so we could prepare ourselves the best we could, even if we didn’t know what our outcome would be. We were not giving up on Paisley because to us, she has every right to have a fighting chance in this world.

August, 28, 2019 Paisley decided it was time to make an appearance. My husband and I were extremely nervous as she was 6 weeks early and we weren’t sure what was going to happen. Paisley sure knows how to get attention and well she got our attention alright. All we wanted to hear was that cry because that meant she had a chance, so laying on the operating table I held my breath and there it was her beautiful cry - and boy she sure let it out a few times. The doctors were shocked! They said, “Man that’s a big baby for a premie (she weighed 5lbs 2oz) and listen to that cry…it’s beautiful!” My husband and I were relieved, but this is where our journey really kicks in. 

She was hooked onto a ventilator right out the womb because she didn’t have the capability to breathe on her own. We had a few scares the first month of her life, but she made it to where she could be transferred to the children’s hospital in Atlanta, which is where she received her trach, gtube, and decompression surgeries. 

The first six months of her life she was in the hospital fighting for her life. We prayed to God daily, “Please let her have a life please let her live your legacy.” God heard our prayers for sure - and the prayers of so many others, because Paisley has a huge supportive family on her side. 

She is now 7 months old and she has been home for a month, even though the doctors said she wouldn’t live past birth. God has blessed us with so many miracles with our daughter Paisley. We have learned to keep our faith in God even in the hardest times because He never leaves our side and He is faithful no matter what. Paisley has taught us to be humble, strong, and to be thankful for everything. She has been through more in her first 7 months of life than anyone I know. She has overcome sickness that almost killed her, surgeries, and just the fact that she has to be dependent on a ventilator to survive. 

Like I said at the beginning, even miracles take a little time. My miracle grew inside me and continued to be my miracle from the day she was born. God knew what He was doing and He has a miraculous plan for Paisley. I wouldn’t change this journey for us because God has truly blessed us with a mighty miracle and we are so blessed to be her parents.

even miracles take a little time...

To learn more about Paisley, follow along at @prayersforpaisley on Instagram and visit www.thecoursons.com!