Three years ago on July 9, 2022, Rose received her life saving liver transplant. Her donor passed away on July 8th and that is all we know. I’ve written letters to their family the past 2 years and have not heard back. I wish so badly to connect with them and to share the joy of Rose’s light and life but I also understand how difficult it must be to be in their shoes. I hope one day to hear from them and to learn about Rose’s donor. The donor’s liver was split and saved Rose and also Glenda, the woman who received the other part of the liver. We are still in touch with her and will always have that special connection to share with her. She fiercely loves Baby Rose. We also remember Mandy Stickel, our selfless friend who sacrificially and selflessly went through the grueling process to be approved to become a living donor match for Rose. Mandy was approved to be Rose’s living donor but there was no time to schedule that surgery as Rose was suddenly rushed to the ICU and had days left to live.

As I reflect back, it all feels like a terrible bad nightmare that went on for two long relentless years given all of the post transplant complications that occurred (to put it mildly). I sometimes can’t believe we went through it and it is all a bit surreal. Sharing frequent updates of what we were dealing with on social media was my outlet and way to process and share what was going on and it was in many ways a lifeline to me and helped me not feel so alone and helpless. Your comments and support meant so much to me at that time. I have rare moments where I get sucked back into the past trauma (it usually happens when I see a photo or story on Facebook about a baby suffering from biliary atresia or when I have to go back to Vanderbilt hospital for Rose’s appointments for blood draws) or sometimes my body will react strongly and viscerally when I hear Rose crying (especially during a blood draw at Vanderbilt or a medical test when she is scared).  Michael and I have been through so much and we try to live in the present moment and move on but with all that happened, there is definitely unprocessed trauma that we just have to deal with on top of everything else. One of the things that the COTA for Rose funds cover is family counseling and we are grateful to have that to help us help ourselves and be better parents and navigate through things that we wish we never had to go through. We work with a phenomenal counselor (shoutout to David Pearl) and his guidance and expertise has kept Michael and I afloat many times.

Now for the update on Rose! If you didn’t know what this little girl has been through, you’d have no idea that she has had anything other than an ordinary life so far. She is extremely well adjusted and developed, so friendly and curious, affectionate, loving, carefree, precocious and all around extraordinary. She turned 3 years old on January 19th and so far this year she has grown up so much. She said goodbye to her pacifier (in exchange for going to get an ice cream), she pretty much potty trained herself, enjoys dressing herself with some assistance and is learning Spanish at a rate that astounds me and is even starting to learn to read in Spanish! 

At her last liver transplant clinic appointment her blood work came back beautifully with no EBV (Epstein Barr Virus) detected, thank God! We requested that she switch her immunosuppressant medication that she takes 2x a day to be from liquid into a pill form. It’s easier to get at pharmacies, is shelf stable for a year (vs. 30 days) and also better for her teeth (which have taken a brutal beating from the malnutrition, high levels of bilirubin and absurd amounts of medication). Given Rose’s young age, I was met with some skepticism from her doctor but the willingness to give it a try. Rose and I had been preparing for a couple of months and talking about how to swallow a pill and she would watch me each morning swallow my vitamin. She was READY and MOTIVATED! That girl took the pill, put it in her mouth, took one big swallow of water and gave me the biggest smile and said “I did it”! I knew she could do it but she made it look so easy!!! She continually amazes and impresses me with her drive and motivation to grow and develop and prove her independence.

Her favorite thing to do is to play with her baby dolls and go to the playground. Davy turned 2 on June 13th and the two of them are just about the same size and get along very well and play so well together. Rose likes to take care of him and also to boss him around and he sometimes lets her and sometimes doesn’t. I knew the day may come some day but I was hoping it’d be years away… At bedtime I always say, “Goodnight my precious baby Rose”. The dreaded night came and she told me that she is “not a baby anymore” and I said, “I know you are not a baby anymore but you’ll always be my baby Rose.” and she said “but I’m not a baby” and I said “but you’re my baby Rose” and round and round it went between both of our strong wills.  

I’ll continue to keep you all updated on our lives and Rose and post pictures from time to time. We want to stay in touch. <3 Emily, Michael, Rose and Davy Daniel

CALL TO ACTION FOR ALL TENNESSEE RESIDENTS: 

There has been a team working hard behind the scenes and clearing a lot of red tape to get a Tennessee Specialty license plate approved that will bring awareness to organ donation and we just received the great news that The Donate Life Tennessee License Plate cleared the legislative process and is NOW available for PRE-PURCHASE! Visit DonateLifeTNPlate.org to purchase your specialty plate! Once 1,000 plates have been pre-sold, the plate will move to production! You can prepay $37 and be refunded if the 1,000 plates do not get preordered or opt for portion to be donated back to Donate Life Tennessee.