It has now been a week since John Henry has passed. This journey still feels unreal. I cannot believe that I left everything I know to move to Florida for my unborn son to have a chance at life on August 28th, 2019. We had no hope when we got our diagnosis back in July 2019 and found a doctor and staff that were willing to give him a chance. Everyone fought incredibly hard to keep John Henry alive, he went through 27+ days of ECMO, 8 intubations, 5 different hospital rooms, two different hospitals and three major surgeries. There were plenty of highs and lows through out this journey. Today, I want to focus on the good things that have transpired through out our journey as a last entry. 

I will start with thank yous. The staff at Johns Hopkins All Children's Hospital have taught me so much and I am eternally grateful for the connections that I have made. Grandma Susie, thank you for dropping everything and coming to stay with me in Florida for months; Veronica, thank you for teaching me how to comfort my son when I did not know what I was doing; Katie G, thank you for all of the fun and laughter that you brought to our room every time; Carol Ann, thank you for treating John Henry as a little boy and playing with him; Shannon, thank you for sharing your perfect lullaby playlist when he couldn't sleep; Sherrie, thank you for always getting him to smile; Ana Maria, thank you for helping him feel more relaxed; Katie (Child Life), thank you for helping me make memories and having keepsakes I will always cherish; Katie (CDH), thank you for helping me organize my day when there was a lot to balance; Music Therapy, thank you for helping me record the "John Henry Song"; Belinda, thank you for being a complete stranger and helping spread our story; Jill, thank you for helping make his last day special; Bridget, thank you for extubating him for the last time; Sherrie (Little Light of Mine), thank you for taking pictures that will last a life time; Hillary, thank you for being there for us on the last day; Dr. Stone, Dr. Smithers, Dr. Kays, Dr. Sochet, Dr. Thatcher, Tiffani, Stephanie and Hershel, thank you for keeping my little boy alive and giving us 5 months and 21 days together. There are so many others that touched our lives and changed it. The CDH crew and families in St. Petersburg, the countless people that have donated to our GoFundMe, and the Nerdy 30s Ladies of Kansas City, and most importantly my family and Joe's family have all taken care of me and my husband both financially and mentally.

Our last day together as a family was precious. We completed our first family project together, which involved some coordination and paint! I bathed John Henry and gave him a little man look with his hair, instead of the classic mohawk. Joe, John Henry and I took many family pictures together (courtesy of Little Light of Mine) that required three outfit changes for the adults and 5 total outfit changes for John Henry, a final extubation, several people to cover everything in white to make it look as normal as possible, and moving from the bed to our arms a number of times. John Henry was officially 59 cm long, weighed 5.285 kg and got his first haircut. He passed away in my arms listening to my recording of "Snuggle Puppy" by Sondra Boynton at 5:42 pm. 

Joe and I have decided not to hold a ceremony for John Henry, because our last day together was perfect.