* Trigger Warning: This blog will contain horrible language (duh), and extremely raw and real discussion of death and dying. If you need to read Jett's original diagnosis blog to understand where we are coming from, CLICK HERE.
Upon Jett's entrance into this world, Matt and I knew we were waiting for ONE question to be answered moving forward. This answer would determine our plan, our course of action, our time.
Would Jett's tiny pulmonary arteries be as bad as assumed? Are they able to be helped surgically?
YES = surgery, lots of wait and see, a big huge MAYBE on survival of said surgery, and then months of hypoplastic left heart surgeries to come.
NO = NO. No help can be offered surgically. His arteries are too small, will always be too small, his body will live with current stability for a while, but his heart structures will cause his eventual demise. Hospice care.
We got our answer from the heart team 3 days into our NICU stay..... NO.
We were prepared for NO. Actually, we would have been shocked otherwise. We knew we would have limited time, we knew this was God and Jett's ballgame now. Love. Snuggle. What now?
If you follow our social media, you saw how great Jett was at breathing on his own in the NICU. This is when we choose our miracle. Jett's little body created vessels most babies don't have. These helper vessels try their best at balancing blood flow to the body with the crappy plumbing of a heart he was given. These vessels are literally TIME...but they expire. We knew that going in. Helper vessels may make us stable enough for home...so we quietly geared up. What a miracle that a tiny baby body, in my tummy, tried his best to create its own vessels...for TIME with us.
Once we received word of our NO from cardio, Matt and I set out to accomplish "normal baby milestones" with Jett. Room air breathing with no oxygen help, full feeds via OG tube, parent training on said OG tube. These were the HOME parameters. Quietly we cherished the snuggles, hoped for the best, and then snuck the mister home - June 14th - after just 10 days in the NICU.
So - HOME doesn't mean it's sunshine and rainbows. Home means hospice would follow Jett, we would check in with cardio to see how his ticker was progressing (or digressing), and eventually suffer the same loss we've done before with Piper - a baby who was too blue, not enough oxygen and blood flow to sustain life, we would have to say goodbye. Months? A year? Our literal deja vu nightmare....to have extended time, and still lose. We knew this. We had to come to terms with this. We choose to love. This fucking sucks; but let's love anyway. It's ALL we can do. I'm terrified to watch for the warning signs, I'm in a panic that we have to do this again, I'm trying SO SO hard to be present and grateful BUT I AM SO AFRAID of the pain I know is coming.
June 16th, 2019 - Jett gets his front door debut with Daddy on Father's Day! It is 3pm here...and life would fucking kick us in the face by 6pm.
After brunch and afternoon snuggles with the family, and the house quieted from visitors, Mimi and I headed off to the Target to grab some baby supplies, then to grab take out dinner.
Matt, Tallan and Jett stayed home to start a feed.
I arrived home to lights, sirens, police cars, ambulance, fire truck, people. Everywhere. Panic.
Running in the front door, I am only allowed to our stairway before I'm stopped by the chief medic. Matt is feet behind him at the kitchen island with firefighters, and is crying, looking at me and shaking his head. Jett is lying on the counter. We are done.
Not able to get to my husband, all I can remember is screaming for Matty, and clawing at this poor man's shirt, as he explains Jett's heart has zero. Zero electrical activity.
While we were gone on errands, actually in the last 10min of our drive home, Matt noticed something wrong, grabbed Jett to wake him with a diaper change, discovered no breathing and called 911.
Matt Jarvis, alone with his limp newborn and 7yr old, called for help, began CPR and directed Tallan to open the door for first responders. He fucking had to do CPR. Alone. Terrified.
My worst nightmare. Our worst nightmare.
Our preparation for grief, quickly turned to processing trauma.
Do you know what happens when a child dies at home? Police stay to take pictures like it's a crime scene. We were confined to our front office and couldn't go near the kitchen, where Jett's body lay. We had to vomit out every fathomable medical term we knew about Jett to explain his reasons for hospice care at home and for his medical condition causing this demise. Police stay until the Doc in charge of Jett contacts them to verify this condition. Matt and I are questioned about his diagnosis and the events of the day...separately. This is so fucked up. That's all I could say as I waited. It's all my brain would think. This. Is. So. Fucked. Up.
The above scenario is protocol, and I am so thankful we had discussed this with with our palliative care team while we were still in the hospital. Once doctors are contacted, things ease up; but damn what a trip it is until then. These poor young cops are pacing, deer in headlights, tears in eyes, mortified. I realize "We're those people. We are their nightmare call. Baby. Dead. We are those people."
Surrounded by family and our palliative care team, who came running, we ended our night able to hold Jett Mathew one more time. He left the hospital with a crappy heart; and it was way more tired than we imagined. It stopped. Too tired to compensate for shitty plumbing. Stopped.
Last night was a movie I felt I watched from above. I've never felt visceral pain like this. Matt was alone and had to do the unthinkable and I am sick about it. I am scared to death of what this does to him, to Tallan. I replay over and over myself screaming and clawing for him. I just needed him, I needed him to know it was ok. There was nothing we could do, nothing. I'm so so sorry for what he's experienced. I am sorry we have to do this again. We held our baby last night and said goodbye; and the fact that we've been here before is so fucked up. So unfair. So painful that there are NO words to describe it further. PAIN.
After such trauma as last night, comes the silence. What now?
We prepared for this, but not for the acuteness of how it happened. We are in shock. We've held one another up, that's all we know to do. We thanked God for the family surrounding us and for the small amount of time Jett spent with us. We thank God for the ability to remain upright at the moment. We will sit with this pain for a while, and let it be our reminder that there was love. We will remind each other we are enough. We are enough.
Jett Matthew Jarvis - I'm so sorry this happened. That your heart never gave your body a chance. That we had to spend so little time with you. I may never know why our family has had to endure such loss; but I remain so grateful for you. I'm so grateful for our time spent loving you. We are in pain, but trust you are not, and for that I am thankful. You are HOME.
We are not alone in our pain. We are in no need for divine answers for "why?" All we needed was love...and that was given. We are tired and numb and our hearts ache but we have LOVE that endures. Please, God, use this for good. We are so grateful for each other. That's all I know to say.
