the Story.

As I sit in this hospital room listening to the clicking of the IV fluids and a sweet little teeny tiny baby snore, I endulge myself with a 16oz mocha and a chocolate chip muffin and think two things: Dollie is the toughest person I have ever met and this shiz has  been hard.

Yesterday at 8:00 am central time Dahlia underwent a 4 hour surgery to repair her grade 4 hydronephrosis of her left kidney and to release both of her Achilles’ tendons in her tiny baby feet.

At 20 weeks pregnant I went in to Dr. Brody’s office for what I thought was a typical ultrasound. It was me and Brooks and it turned out it was my 20 week anatomy scan. As Robin scanned me she noticed that the baby’s left kidney was dilated but assured me that it sometimes happens and not to freak out. She continued to scan that baby and as she got to the brain she grew more quiet than normal. At that time Dr. Brody popped in and looked at the screen and I could see with the exchange of looks that something was wrong. Remember... these have been MY peeps for 12 years. They aren’t just medical professionals, they are friends... family. He proceeded to explain that he thought my baby had hydrocephalus. What is that, I asked. He explained that it is when there is fluid in the brain. I very quietly said “is my baby going to die?” He told me that he wasn’t an expert in this condition but he got me in to see Dr. Angela Hawk the following day at 8:00 am. All I knew was that something was terribly wrong. I cried... I sobbed. Poor Brooks just thought we were running errands together. I called Cielo and all I could get out was “something’s wrong. Somethings wrong with the baby.” She advised me to call Robby. I called my pastor Robby who answered on the first ring. He asked me to come to the church so that he could pray for me.

As I unloaded Brooks from his car seat, I continued to sob. Robby met me opened armed in the parking lot and took me upstairs where all three pastors were sitting, they began to pray. They wept with me, they begged our Father to let there be a mistake... for the maternal fetal physicians to find a different diagnosis. It was a day I will always remember. I will forever be grateful to every person who I came in contact with on that day, for they all are such s huge part of the story.

The next day our pastor’s wife, Chrissy, came with Adam and I to see Dr. Hawk who’s tech did an hour long ultrasound in total silence. No fun commentary like normal ultrasounds. Answering all questions with “ Dr. Hawk will be able to better answer that”. As we waiting on the scan to finish I noticed that the tech was spending  much more time on the spinal cord than everything else. I noticed her continuously going to the brain and that one side seemed larger than the other. I nervously tried to talk about things that don’t matter... doing the whole “have y’all ever heard of...” - isn’t that so crazy! I had never known anyone with Spina Bifida, I didn’t know what it was, but as that tech exited the room I said out loud “what if she has Spina Bifida?” Its like I knew. She came back into the room and told us that our 20 week old baby had Spina Bifida.

I was relieved. And so thankful to have the love and support by my side.

She told us about a clinical trial taking place at Baylor’s children’s hospital where they could close the baby’s spine before she was even born. It would take place 4-7 weeks from the day we found out. We went home and bought tickets to Houston, with the money raised for us through a GoFundMe that was set up by our sister in law. All of this took place while Adam was searching for a new career. We were on TennCare. As you may have figured out ... Texas doesn’t do Tenncare.

As many of you know, the trial didn’t work out for us. I went to Houston for 3 days and underwent extensive testing. At the end it was determined that this surgery wouldn’t prevent Dollie’s club feet (they were already clubbed) and it wouldn’t really reduce her chances of getting hydrocephalus because she wasn’t one of the babies who was at extremely high risk for getting hydrocephalus. They dismissed me and our unborn baby and we were on a plane back to Chattanooga feeling like nobody could help us. UNTIL Dr. Whitehead (from Texas) recommended Dr. Naftel and Dr. Wellins at Vanderbilt. He explained that they have a Spina Bifida clinic where all of the specialties talk about your case from year to year, month to month. They work together to ensure that your child is examined head to toe with a medical plan from not one physician but a plan that everyone has to agree on... Neuro surgery, orthopedics, urology, physical therapy, occupational therapy, gastroenterology, and nutrition. We were in.

So here we are, Dollie is Earth side. 48 hours after a c-section her spine was closed and we were told she would never bend her knees. She spent 7 days in the Nicu where they told us she likely had a heart coarctation and grade 4 hydronephrosis of her left kidney. We were told she would likely get hydrocephalus and that a series of brain MRI’s would be ordered to keep a close eye on it. That if she did, a surgery would be needed to place a shunt in her brain. We were told that her feet were severely clubbed and likely only would be fixed with several surgeries. We were overwhelmed... so much surgery.

Dollie did not have a coartation of her aorta. Dollie bends both knees perfectly. Dolls has yet to show any signs of hydrocephalus. We have been casting her feet and made great progress. She just had a surgery to repair the hydronephrosis and we pray for 2 strong kidneys!

It. Has. Been. A. Year.

This baby is tough. Tougher than anyone I have ever met.

This baby is SO FULL OF JOY in the midst of all of the pain. Wow, I think. She is always happy. She is always smiling. She has given me the chance to see life through a new lens. She has given people purpose for prayer. She is amazing. When I say I would not change one thing about her, I so so so deeply mean it. For she will change lives. She will change the world and I have a front row seat. She has changed mine tremendously and I can’t wait to see how she touches all of yours. Dollie Mae is one to watch, she is a gift that God perfectly knit together perfectly for our family.

INLOVE.