Well I finally lost my streak of daily blogs and as bad as that messes with my OCD it couldn’t be more of an example about life. Not everything works out exactly as I have it planned and that’s ok. The blogs are not everything even though they mean everything to me right now. It’s doing the acts in honor of or in memory of my baby and that I did not lose time for yesterday. Today’s post will be a long read.
Day 11. It seems silly to me because I spend most of my days revisiting my Evelynn journey while I’m doing life, but I set aside 5 minutes of quiet time for myself to sit, to feel, to pray. There is a major part in our story that have helped all of this come together and yesterday was just conformation that all I have planned is coming to fruition. I was overwhelmed with emotions and joy. FINALLY, a feeling of positivity for the darkest day of my life. PRAISE BE TO GOD. Set aside uninterrupted time for yourself today.
After our 31 week appointment, Dr. G helped set up three very important appointments to help me make sure I had as much covered as I could before little miss Eve made her debut. I wasn’t sure how medical staff perceived a baby with a Trisomy 13 diagnosis and I wanted to make sure if she took a breath that she would get the best unbiased care. “What if they don’t do enough? What if they just assume she’ll die soon so they don’t treat her like the breathing beauty I know she is?” I am her voice and I needed to know how each person coming in contact with my angel would handle themselves. (I told you Nurses are the worst patients.)
“Yet if I speak, my pain is not relieved; and if I refrain, it does not go away. Surely, O God, you have worn me out.” Job 16: 6-7 NIV
I had no idea some of these things existed and I’m excited to share these resources! Alive Hospice was who we met with first and I was actually confused about it all. “We’re not even sure she’s going to live so why do I need end-of-life comfort care planned in advance??” It was the opposite. They helped me form a detailed action plan so my daughter would get the care I felt appropriate for our situation on her birth day. They were also going to be my personal liaison the day of birth! From calling photographers and family, to making sure the nurses were doing what we wanted. How amazing is that?! It was the biggest relief off my shoulders and I walked out of that meeting lighter on my feet.
I was still concerned about the hospital visit so the second appointment was with the hospital’s Nursing Care Coordinator. She was a gem and reassured me everyone who took care of Eve would have a copy of that detailed action plan. She gave Dalton and I a tour of Centennial Medical Center (CMC) and said she would try to give us a room away from others so we wouldn’t hear crying babies or healthy heartbeats. I couldn’t have squeezed her tighter. She then showed me to a special room where the family could wait or we could take pictures. There was a corner of the room with a bright light shining on a matte white back splash behind a counter where a single basket would sit to show off our girl. A great resource for others, but it was nauseating to me. “If she died, we will not be using this room, Dalton. She will be in my arms.” Sitting in that room was so humbling. All the families who have gone before me on a similar journey; I felt like I was grieving with them. This journey makes one feel so alone, yet there are so many who grieve their lost babies.
The last appointment was with CMC Nursing Care Coordinator and the director and head Doctor of the NICU at CMC. The director was not much older than me. I wanted to go over my action plan with someone who sees this daily and for them to help me realize things I might have missed. I am her voice. For the first time in our entire journey, we were told our baby could live! I think I had to pick my mouth up off the floor. I was pushing back tears of joy trying to get his medical reasons of why he thought Evelynn could make it, and they made sense! Obviously, there were chances for every scenario, but the MD knew what I had been saying all along. “We’re going to meet her alive! Oh my gosh, we need we get to buy things!”
“Sustain me according to your promise, and I will live; do not let my hopes be dashed. Uphold me and I will be delivered.” Psalm 119:116-117 NIV
Day 12. Today I’d like to Thank our specialist office, Tennessee Maternal Fetal Medicine, specifically Dr. Grace. This man is nothing short of his last name. None of the above appointments and knowledge would be had without him. He carried himself with such compassion towards our journey and love for his work, no matter how non-compliant I was. ha. He listened, really listened, and knew what mattered to me. They carried us through when we were at our weakest and for that I will forever be grateful. Thank you Dr. Grace for all you do!
Evelynn’s Basket 