It was New Years Eve, 2012....an exciting time, right? My husband and I had a 1 year old son and had just found out we were expecting a daughter. Just the way I always dreamed, a boy first then a girl. We were naming her Evie after my incredibly strong great-grandma Evelyn. We went to the 20 week ultrasound appointment to confirm anatomy and got the shock of our lives, to say the least. The ultras
ound tech seemed normal during the scan but then instead of returning to give us our pictures, a specialist returned and said she needed to take a look. My heart sank, tears ran down my face, I said "something is wrong?" and she replied "we think so." I immediately began to pray, pray that my daughter was ok; Was I going to be able to do this? After the second scan and speaking to the specialist we had discovered our unborn daughter had Spina Bifida and the beginnings of hydrocephalus (fluid on the brain, often associated with Spina Bifida). We were then referred to the doctors at Cardinal Glennon Hospital in St. Louis (where we are from) and immediately began an intense remainder of my pregnancy, more frequent doctors appointments, meeting with pediatric neurosurgeon, plastic surgeons, genetics counselors, the whole nine yards. To make a very long 4 month story short, we ended up delivering our daughter on May 7, 2013, 3 weeks early. I delivered Evie at St. Mary's Hospital in St. Louis where she was immediately taken from me to begin her stay at Cardinal Glennon. 14 hours after her birth Evie underwent her first surgery to close and repair her spine where it hadn't fully formed. The area was much larger than we were expecting and our neurosurgeon warned we may need a plastic surgeon to come close her skin. The spinal closure surgery took nearly 2 hours. The good news: NO DEAD NERVES!! This meant that Evie had not lost full function anywhere but would have some weakness, we just aren't sure the severity of that weakness yet. Then it was confirmed, the neurosurgeon couldn't close her skin and the plastic surgeon would come in to perform a skin flap. Another 2 hours later and Evie had survived her first surgeries.
10 days in the NICU seemed like a lifetime. I had a husband and son at home that I was trying to care for and a daughter in the NICU across town I wanted to care for as much as possible. Our family was spread thin and Mother's Day didn't seem as joyful as it should even though we were so thankful for our miracle. At 4 weeks old our neurosurgeon decided it was best to place a shunt in Evie's brain to help drain the fluid since her head had continued to increase in size. Evie underwent brain surgery successfully and her head has already shown great improvement. We are now home as a complete family with an overall healthy baby girl. We have God to thank and many many prayer warriors to thank! Throughout this journey we kept our eye on the prize, so to speak, and trudged through even through our darkest days. I felt like we got bad news quite a bit for quite some time but now we can say we survived it all! This experience has reminded us that God has all of our days planned before us and that we must not interfere with His plan and His timing. The testament to the power of prayer is astounding and our belief and trust in Him has never been greater. While we would find ourselves questioning His plan throughout all of this we were reminded by an awesome church family that we would get through this and we did. Our girl is a fighter and is fearfully and wonderfully made. I wouldn't trade this life for anything, and I am eternally grateful that we were chosen to be her parents. While we will have many doctors appointments in the future and many obstacles to overcome, we will never forget that our God is greater and healer and we have living proof! Evie moves all of her extremities, all the way down to her toes! Her lesion level is L4/L5, which according to the medical community should not allow for such movement or feeling. We are defeating all odds and will continue to do so. Evie's Important Dates:
5/7/13 - born via c-section, 3 weeks early - immediately transported to Cardinal Glennon Children's Hospital (I was at St. Mary's)
5/8/13 (14 hours old) - surgery to repair her spine, place her exposed nerves back in her spinal canal and close her back which would require a plastic surgeon and undergo her 2nd surgery, a skin flap to close her back.
5/17/13 - discharged from NICU!
6/12/13 - programmable VP shunt placed in her brain to help regulate the excess spinal fluid building up on her brain.
12/18-19/13 - hospital stay with pneumonia
6/19/14 - Chiari Decompression surgery
To read more about Evie's progress and get a more detailed explanation of our journey - visit our blog at jhmorgan13.blogspot.com or Evie's website at www.evieswarriors.com
