Sailor's Fight: A Family in Need

UPDATE from Danielle:

We lost our daughter today. For the second time in our lives we walked out of children’s hospital with empty arms, shattered and broken.

We woke up knowing what the day would entail, I slept in bed with her for the last time. I held her hand and feet and watched the monitor begging for one last shot of hope; it never came. The clock kept ticking behind me, anticipation, anger, regret, sadness, knowing what was about to happen.

I picked her up and put her on my chest for the first time in almost 3 months, I held my sweet Sailor wire and tube free, her at peace while I broke.

No more vent, no more ostomy, picc line, no more feeding tubes falling out of her stomach, no more laying in the bed worsening while daddy and I watch and stare. Yesterday her breathes sounded so fake, so mechanical, so rough, knowing it was just the oxygen from the vent it wasn’t her, it was never going to be her.

Matt and I are having an extremely difficult time; we drove in home silence and tears for the last time. We had to make this decision, we had to tell them, we hugged and cried with so many people over the last couples days, if you read this I will never forget you.

We loved her enough to make her we had to love her more to let her go.

Sailor met her big sister Alessia at 1237pm today. I hope they are best of friends, I hope all their grandparents are fighting over her right now, all the dogs are sniffing her and protecting her.

I hope they’re okay while we suffer. The nightmare is over, the storm has run its course, we have to figure out a way to build what broke; and I truly don’t know if it’s possible this time. It happened in a blick of an eye, and now it’s over just like that. A new reality of life, no more rushing to the hospital or calling with fear, her pain is now ours and we are willing to carry it.

Sailor Sage Clary

September 27, 2024 to February 2, 2025. I love you so much sweet girl. I promise I’ll see you again. ✨

UPDATE from Danielle:

Two daughters, two lives, two times well miss “the firsts”, no school plays, no dances or prom, graduations, two daughters weddings I wont be beaming with joy to send my little girl into true love.

I in my depth of my soul dont know how to make a choice, a choice I already know and understand, but to pick a day is something i cant fathom, something i dont want to choose. I have no words, which is odd for me. “I dont know” has become an anthem for me, i dont know how to be okay and i dont even think i will..

SIDS. Sudden Infant Death Syndrome stole another life.

She’s here, but only physically here, never to cry, or fight with her sisters, never tell me she loves me back. Her life and existence was stolen at sheer random. I have to believe this ugly world couldn’t handle her beauty, grace and power..

In no way shape or form did I ever even consider having two daughters in heaven and one on earth..

UPDATE From Danielle:

Not an update I want to give..

Sailor yet again has another respiratory infection she’s currently battling. It seems like she gets over one for another one to just creep right back up in.

Back up a month ago; we just wanted to get to Christmas. We kept telling the PICU team we just wana spend Christmas with her. The next day the attending asked for a plan; it was either fight for a trach or let her go. We’ve been fighting for a trach since then. Some doctors say yes other doctors say no, her vent settings are extremely high, she needs a lot of support. With the trach comes its own battles. Last week she started Neurostorming, which is par for the course with traumatic brain injuries, and it kind of solidifies the seriousness of her condition.

A few days ago they told us she COULD get the trach, if we wanted, however, she would have to get over this infection again, and we would need to have a meeting with the Ethics board. Why?? It should be our choice if we want to take the risk, if we want to take her home and love and care for her, but with such a poor prognosis her quality of life simply isn’t there. The emotions run extremely deep, raw, and high, sometimes you’re okay and sometimes you’re not. Over the weekend Matt and I looked at urns and ash holder necklaces for our sweet girl.

Thank you so much for everyone’s support so far. The next steps for Danielle and Matt are to spend as much time with Sailor as they can, as they navigate how to send Sailor off to Alessia. There is no textbook or timeframe on how to do this, so please just keep them in your prayers and respect their privacy.

To add to the stress, Danielle, Matt, and some of her family got sick and have been unable to visit Sailor over the past few days, so emotions are running higher and their family continues in a limbo that is anything but normal. As their village, please consider sharing this post and if you can, please consider donating to help them cover medical costs, bills that are adding up from being out of work, and anything else they might need at this time. My hope is that we can give Danielle and Matt the gift of financial stability in this unimaginable season of life.

Originally Story:

As many of you know, Danielle and Matt lost their first baby, Alessia, after 7 weeks in the hospital in 2020. They were blessed with their rainbow baby in 2021, Crimsyn, who is now 3. In 2024, they welcomed Sailor into the world, but unfortunately, after 2 weeks of newborn bliss, Sailor suffered a near-SIDS event at home that has left her in a coma for the past 2 months.

Sailor's story, in Danielle's words, is below. However, the intention of this fundraiser is to come together as Danielle and Matt's village to help them financially, as this will give them more time as a family to process this devastating situation. Any one of us would give a whole lot to change the course of Sailor's life. Unfortunately, that is not an option at this time, though we are still praying for a miracle! By providing any amount of financial support, whether that be through this fundraiser, gift cards, or anything else that you can think of, we can help alleviate some financial stress of bills that are adding up. My hope is this can allow Matt more time to stay out of work to focus on his family, since he has to take this time off unpaid.

Sailor's Story (modified from Danielle's Facebook):

On Tuesday, November 5, we woke abruptly around 5 a.m. to Sailor limp with blood coming from her nose. After Matt started CPR and the firefighters took over, we finally got a pulse back, but it stopped again in the ambulance. When we got to Children's Hospital of Pittsburgh, we were in a very bad spot; minutes before calling time of death, she had a pulse!

She required getting put on ECMO (heart and lung bypass) in the trauma bay, then once stable, was moved to the PICU, where we have been for the past 2 months. Sailor's body has done amazing internal healing, making it through a severe leg complication from an IV, two lung infections, and a very risky abdominal surgery. She truly has come so far in the amount of time we've been here.

However, Sailor has severe and extensive brain damage; she has been in a deep coma for 2 months and from what we are gathering, we truly do not know IF she'll be able to do anything and IF so, what. Yet again, Matt and I are in a very dark, terrifying place no matter what route we take. This is not about me or him; but no, we are not okay. Matt and I are struggling extremely with hearing these words, the SOUNDS, and being in a place we never ever expected to be back in. I can't begin to explain how shitty it is being an “ICU veteran parent.” We were in newborn bliss; today I'm begging for a miracle yet again. I have 3 kids and missing all 3 of them in heartbreaking ways.

Please consider helping in any way that you can. The smallest donations add up. Any more time that we can give Matt to focus solely on his family will help their mental health as individuals and as a couple and allow for Crimsyn to live as normal of a life as possible.