When you give a girl a liver..

Whew, it’s been awhile. I apologize it’s taken this long to update you- on all the things! Like Eliana having her first birthday, her health status, this life we are so grateful for, and just how far our sweet girl has come. Her one year Liver-versary is approaching in July, so let’s get into it-and reflect on the blessings! For those awesome supporters of hers that don’t want to proceed reading a book (I completely understand). So, to condense the essence of this update- Elie is a spitfire, small .. but very mighty. She has had many ups and downs with her health, a few scares.. Especially recently. But overall is thriving and LOVES her brothers and sister. She’s okay, and growing beautifully. Obsessed with princesses, all the books, and finally starting to laugh! We appreciate the continued outpour of love she receives, we wish we could hug you all! Post transplant life has not been as easy as we anticipated- financially, health struggles and new routines.. We feel your prayers, and we thank you so much.

(ya know.. The books “When you Give a Mouse a Cookie.. If you dont know this may just sound weird, and I’m okay with that).

When you give a girl a liver.. She gets to celebrate her first birthday, Christmas Day.. with her brothers and sisters. She gets to open gifts for the first time, and even meet her very own Santa Claus! Yup, her very own! Due to her suppressed immune system we didn’t feel comfortable taking her to Santa at the mall (germs, on germs, on germs) in the thick of sick season.. So this mama heart broke a little.. The first of many traditions she wouldn’t get to participate in. Some sweet family members of ours wouldn’t allow this, so they ordered a Santa suit and showed up to our front door, stayed outside and brought gifts for all the kids. Eliana cried, (we think it was the beard) but one day.. She’ll get to hear just how loved she is. Elie had her first smash cake, made special by her Liver-Giver, a magnificent baker! This last Christmas was special for every reason. The best gift ever, at home to celebrate with us.

When you give a girl a liver.. And she gets to celebrate her first birthday.. She becomes obsessed with all things princess, books, music, and farm animal noises.. going to the park early in the morning, playing with her two older brother’s, big sister, and cousin. She has really come into her personality! She is spicy, sweet, and loves to dance! She will dance after the first bite of her food, when any music is playing, and randomly from happiness. I often look at her in awe.. I think about how I wish I could give her the moon and the stars..she’s endured so much.. But this little soul carries the skies in her eyes, already. All on her own. She is joy. She is courageous. She is a miracle reminding us parents that the world is not only happening to us.. But we are happening to the world. Her testimony, her resilience.. It’s inspiring to us.. She encourages us to give back, and leave everything and everyone better as we found it.. And shes only a year old!

When you give a girl a liver.. she inevitably will end up getting sick. I find it hard to put into words.. the ups and downs of the draining, dreadful, revolting rollercoaster of a medically complex world for your child. The highest of highs, the lowest of lows. I’m not just meaning the importance and responsibility of medications, sanitation, or the constant monitoring of symptoms that could be normal for her age, or possible organ rejection.

I mean the knots you feel in your stomach when your daughter is running fevers as high as 104 for days on end, when you have to watch your child in the ER for 10 hours having every test, multiple blood draws, swabs, and imaging/scans you can imagine. Elie is old enough now that she is talking, and crying in pain to nurses and providers “ALL DONE” (while signing in sign language, aggressively at this point) and “THANK YOU”, as if she was saying anything to get them to stop. This last time she was sick, really took us back to Pre-transplant feelings, she was so sick.. And nothing seemed to help or soothe her, her abdomen seemed distended and from a liver patient’s perspective.. That was a scary symptom. Luckily, after a rigorous ER visit, we had an appointment soon after in SLC with her liver doctor. Eliana has since been feeling much better, and we take every day in stride. We are blessed and so grateful for every day with her. Finding activities that get her out of the house in the summer is difficult, with a very active and fun 6 year old big brother. She is unable to go swimming at pools, lakes, rivers, oceans, splashpads ect. And this girl loves being outside with her brother. Eliana is at high risk for cancers, especially skin cancer- so we are keeping a few sunscreen companies in business with the amount of UV protectant EVERYTHING we are using daily, Ha!

The hardest transition aside from our new lifestyle with an immunosuppressed babe, is the financial hardship, and at times destitution our family has experienced. We have gone from two incomes to one, and we are so thankful to Justin for working so hard for us. However, when Eliana gets so sick, he often will need to take time away from work to be there with us in the hospital. The travel expenses just to see her liver doctor 4 hours away in itself has taken a major adjustment in our saving priorities, activities for her siblings, and overall lifestyle change. Gifts to COTA in honor of Elie have been the only reason we can make it possible to travel to Primary Children’s Hospital where her liver Dr. is, as often as is required for her health. We are so grateful for your continued support and love. We are grateful that she has such an impactful story, and recently highlighted at our Hospitals annual fundraiser.

When you give a girl a liver…

She gains an entire new family from her Liver Giver (Annie). And we all get to visit them every month we travel to Salt Lake City, Utah for appointments 4-5 hours from our home. They are so precious to our hearts. We see Annie in Elie every once in a while.. Elie loves to bake in her kitchen-just like Annie, she is outwardly not a fan of red velvet cake! (tried and true) Haha

We are one blessed family.

I hope to have more to share soon, and more fundraising efforts for COTA in honor of our sweet Eliana!!

-the Tibbs Family