First, I want to thank every single person during 2010 and beyond during our time with The Children’s Hospital at Saint Francis in Tulsa, OK. We appreciate each of them for being patient, kind, hardworking, and loving to our family. We went into the unknown at Saint Francis Hospital, scared—walking into darkness. Our first daughter’s life expectancy projection was that her first breath could be her last.
Everyone who ever worked on our team for the adult or children’s side brought their strengths, weaknesses, realness, and gifts to our journey. We were not limited or told no. A team sat us down and asked what our wishes would be. I felt a nudge in my heart to be grateful and birth the plan where we were willing to do whatever it took for our sweet Lilian Grace as long as we were doing stuff for her and not to her. Being ahead of her would be like dragging her to go where she may not be meant to go. If we got behind her, we’d be wishing and regretting that something should or could have been done to make her better. I wanted to make sure we were walking beside her as we made sound decisions that were for her benefit.
What does that look like? It’s not easy. Every time we changed a med and feeding or weighed the cost for a surgery, we were guided by the doctors knowledge and gut reactions to ensure we were doing it all for her progress and forward motion. We felt like we were stumbling through, but our medical angels kept us on a good path
God has brought us many connections and assistance from all over the world. Lilian was diagnosed with trisomy 18, Edward’s Syndrome, on day sixteen of her life. Doctor Gomez took part in a cath conference to tap into the wisdom of professional minds across the world to review our case. He wanted to make sure we were giving her the best shot at living.
Thankfully, the team listened and did everything they could within their gifts and power. They did the next right thing over and over. I felt lost at times, but God provided. Lilian’s journey was an unpredictable rollercoaster ride, yet day after day the staff members buckled up—come what may. Her first breath was not her last! They helped give us one hundred and three more days—stepping aside and allowing God to give us hope.
If I can give any advice or reassurance to others who are in the hospital or their child ends up in the NICU (Neonatal Intensive Care Unit) or PICU (Pediatric Intensive Care Unit), trust God and know that He has people here to help move things forward and weave your journey into something inspirational. It may not look or feel how we want it, but it will be exactly how it’s supposed to be. You will not be alone. He wouldn’t bring you to your current circumstances without helping you get through each one. The journey sometimes has to end abruptly, but God has made good in ours and others situations.
Lilian Grace’s journey was short-lived, but her legacy lives on. The PICU and other staff were right with us coming in and out of her room while Michael and I held our sweet baby girl as she passed away. The grief was overwhelming, yet we had gorgeous souls crying tears of joy and sadness along with us. Though we thought we might stop breathing, the staff became our family—making sure we had everything we needed as Lilian transitioned from this life to heaven. I know their hearts were just as broken.
I continue to pray for every employee who walks through those doors of the hospital. They have one of the toughest jobs. They get the best and worst of life in their regular working days—a mix of dark and brightest moments. Some employees end up working overtime, because they have a high capacity for care and what’s best for their patients. We were blessed with the best. I pray anyone who enters those same doors can experience the goodness we enjoyed in the midst of such chaos and sadness.
This journey continues, click here to discover what the third entry (1.3) on The Fight Scavenger Hunt holds for you! Don’t forget to look around this host site to get to know them and learn what they are about. Before you go, make sure to write down a memory that stands out as a hospital staff member making a difference. You will email your response along with the other four responses to firstname.lastname@example.org when you finish reading all five entries over the web. Remembering those who have given us a second chance or made our sickness journey worth living can bring thanksgiving and peace.
To learn about me and all things The Fight book and tour, please visit my website at www.chrissylwhitten.com for more. If you have just stumbled upon this scavenger hunt here, please go to the very first blog post, From Giving to Building on my website to start from the beginning.
[…] part of the journey has just started; now click here to discover what the second entry (1.2) on The Fight Scavenger Hunt holds for you! Don’t […]
LikeLiked by 1 person
As a parent, I can see how one would want to do everything possible to bring your child through the hardest battle of her life. When it’s a physical battle, those are some of the toughest to stay strong for and keep on fighting. To be surrounded with the many health care professionals and others supporting you and your child is such a gift from God. They’re there, so that you’re not overwhelmed. A blessing! In my own life I will have to decide how to walk alongside my young adult child, never pushing or pulling her along the path God chooses.