Grace Noel Edwards

IMG_0101-1Our daughter was born December 20, 2013. She had the cutest dimples that showed right away. She had swallowed meconium during labor and had to have her airways cleared right away but all turned out fine and in no time I got to hold my baby girl. We celebrated Christmas with the family, all was great then two days later my motherly instincts kicked in and I know something wasn’t right.

She had slept most the day and didn’t want to eat much. Later that evening I noticed she had a fever and was lethargic, most of all I noticed her soft spot in front was bulging a little. I took her to the ER where they confirmed she had a UTI. She was admitted right away and put on antibiotics through an IV. We were told we would have to stay for ten days. That was not a happy conversation; we wanted to take our newborn home sooner than that. Little did we know what was yet to come! One of her doctors confronted us about Graces jerky movements and they decided to evaluate her for any seizure like activity. She thankfully checked out fine, it was just her immature nervous system. Then we received good news, we get to go home! Grace was cleared to receive the rest of her antibiotics orally. So after four long emotional days we got to go home! OH and did I mention we had to spend our first family New Year’s Eve in the hospital…..not fun.
We arrived home on New Year’s Day! Grace was now 13 days old. We settled in and unpacked, showered, and then it was time to relax on the couch together. I was holding Grace, as her dad and I admired her cuteness. Then…..she had a seizure in my arms! Dad quickly called 911 as I laid her on her side on the floor…it was a very scary moment we will not forget. Rushed back to the ER, where Grace and I were flight for life to the Denver Children’s Hospital. Saying Bye to her dad was the hardest thing for me. You never know how strong you are…until being strong is the only choice you have……and that’s the truth.

I didn’t sleep that night as I sat and watched the doctor’s work on my daughter, scrambling for answers. The nightmare had begun. By now Grace has had two spinal taps, four IVs and an EKG plus some. The news….she has Meningitis! That’s all they could tell us until the culture was grown which turned out to be E.coli bacterial meningitis. She was in the Neonatal Intensive care unit, which seemed like forever. She had to have a new IV everyday which then turned in to a PIC line, which turned in to another after that one failed a day later. She was on seizure meds, several antibiotic, and pain meds. The doctors and staff where amazing. I never left Grace’s side till they forced me to get rest and take care of myself…beings I was still recovering from her deliver and surgery. Due to the stress I could no longer breast feed, but on the plus side her daddy and grandma and grandpa enjoyed feeding her, despite all the tubes and cords she was attached too! Grace was our little fighter! The doctors and nurses soon found that out as she would fight them constantly! The high pitched cry she had (side effect) was horrible and as to this day it still is! Grace fought and fought and prevailed. Soon she got to move to a new floor, and soon after that we got to go home! But first we had to test her hearing which was the biggest concerns. She checked out good and so did her MRI! She soon came around and started to show us her true self, smiles, dimples and all!!! Our little miracle baby made it, she beat the odds of not surviving….all because we caught it in time!! We didn’t know much about this horrible disease, but SHE beat it! With the support and help of our family we found our strength and prayer was the biggest of them all! NOW Grace is 2 years old and is the biggest fighter we have ever seen. She is very strong willed, and for the most part happy. She has her good days and her bad. She still is in and out of the hospital. Grace is very well known at her pediatricians. She is sick more days then healthy days. We travel back and forth still from the Children’s hospital. The older she gets the more long term side effects we see, but every day we are very thankful to God to have her here with us!! She is our ray of sunshine!! I am her “person”, her lovey …and she is my rock, and daddy’s little princess!! Thank you to all that prayed for our daughter and for all the support from our family!!!!!!! God Bless.

Joan Shutts commented 3 months ago
hi Varun Sarana im Grace’s mom, Joan. Caroline posted this for me. Im so sorry to hear bout your boy im glad he is a miracle baby like Grace!! How old is he? Grace started showing us signs in the last couple months.. She wont talk was the big red flag delay is escpected but she was talking alittle and then stopped. We recently founf out she has lost her high frequncy hearing in her right ear after we all thought she was in the clear. That was really hard for me.. but no hearing aid as of now and she is signing alttile with us and she just started speech threapy this week. She has 4 months to improve or we go back to her hearing dr. She has been diagnosed with sensory disorder but she doesnt have it to bad, she hates wal mart and resturants thing like that. we have along road ahead of us we know that . When it comes to brain damage from meningitis is a watch and wait game. good luck to u and ur family i will contiune to keep u posted!!
Varun Sardana commented 3 months ago
Dear Joan, great fighter your daughter has been!! Could you pls let know how she’s coming along w.r.t periodic milestones..and any steps you are taking towards improvements. My baby had a severe meningitis and was in ICU for more than a month with doctors declaring his days as numbered..he has beaten all odds and come out of the situation leading me to believe miracles do I pray to God for his full recovery including the brain damage that has been inflicted by the disease.