Heart Transplant, a little support appreciated!

Hi TW,

My friend and fellow TW member Gideon @allmotorrex has a new baby girl named Cali Camille. She was born premature on Jan 31st, over a month early due to an enlarged heart. His daughter very much needed and luckily received a heart transplant three months ago. She turned six months old last week and after a tremendous struggle, she finally went home this week after 186 days in the hospital.

The family has a fundraising link setup through the Children's Organs Transplant Association, but so far they have only raised about half the $50k goal. I do not know how much the medical bills are going to be. But I've seen enough insurance statements to know that six months of NICU care plus the transplant surgery, they are not going to be cheap even if they have great insurance.

Having been a member of TW for 10 years. I know there are a lot of kind and generous members here on TW, it’s one of things that makes this forum such a great place to be a part of. I’m praying that by posting Cali's story here, that those of you who have the means will contribute to help her family close the gap in funding. Those who cannot contribute your prayers for Cali's continued success will still be very much appreciated. The family has a more detailed story of Cali’s fight for life that you can read on the COTA website, so I will not repost it here. I will say ‘no pun intended’ it is a bit of a heart wrenching read.

You can find Cali's story and donate here if you are able: https://cota.org/cotaforteamcali/

Spoiler: Heart transplant. Not for the faint hearted!

Cali Camille is going home!


Posted with prior approval from the Mods.

@MTgirl
@ColoradoTJ

 

Here's Cali's mother’s latest update below upon her discharge from the hospital.

From Sarah: Oh our beautiful Cali Camille. It's hard to put into words how miraculous her story is. Through the entire pregnancy, we thought our baby girl was perfectly healthy, even with multiple ultrasounds, there was no indication that something was wrong. Just to think I almost didn't go to THAT doctor appointment where that one doctor noticed her heart was enlarged. Born on Jan.31st at 33 weeks 4 days diagnosed with dilated cardiomyopathy from a de novo genetic mutation MYH7 that just affects the heart muscle. With a EF of 5-10%, they didn't think she would make it through the weekend. She almost went into cardiac arrest twice, had heart rates of 240, respiratory destress, intubated 6 separate times, developed stage 2 NEC, had to be on countless sedation medicines and opioids and was ultimately too small for any life saving device.

38 days in NICU
91 days in CVICU (almost all intubated)
57 days in CCU
51 days on transplant list
Total 186 days in the hospital

We have been waiting for this day for months and I am proud to say that our Cali has officially been DISCHARGED TODAY!!! SHARE THE NEWS!!!!

To the donor family of her new heart. We can never repay the gift you've given Cali but we promise to carry your child’s legacy with love, honor, and gratitude for the rest of our lives.

To the incredible medical team, nurses, and support staff—you’ve become family. If you're reading this, you know who you are. From the NICU nurses we met the day we walked in, to the doctors who had to continuously tell us the day to day scary reality of the situation, to the CVICU nurses who held her hand through her darkest times, to the transplant team members that found, chose and carefully transplanted her new heart. We shared a lot of tears, a lot of laughs, a lot of hugs and a lot of time. . We cannot put into words how grateful we are. Thank you for fighting for her and loving her like one of your own.

This journey has changed us forever. Our girl is a fighter, a survivor, and now... finally, a little one who gets to sleep in her own crib tonight. #teamcali #heartwarrior #COTAHope #donorlife

https://cota.org/cotaforteamcali/

 

Cali Camille is a little Angel...

 

She certainly is.

 

Amazing little fighter.