Today was a special day all around.
This morning, Brian and I went to my ultrasound. He waited patiently (and unaware) in the waiting room while I got my glimpse of Hope. Sleeping again this week, but growing so well! Take a look!
In less than four days I will officially be in my second trimester. So grateful.
After the appointment, Brian and I stopped for a special treat - cookies and milk at none other than "Hope's Cookies!"
On the way home, we stopped at a HUGE playground that was truly impossible to drive by and Brian had such a great time.
But the biggest event of the day was our trip back to the emergency room at Paoli Hospital. I was very, very nervous and only hoped that our gratefulness to them shined through. I have been so worried about all of them since April 10th. Not a day has gone by that they haven't been on my mind. Truly.
The meeting was, as I suspected, sacred. I was grateful for their reception... their kindness... and their compassion. I learned today that they called to the PICU at DuPont once a shift to check on Gavin the entire time he was there. Ed and I will never forget our ER team and how they saved Gavin's life that day... so that we could spend the next four days with him before he died.
Below is my "speech" to the men and women who stood in that room with us and breathed life into Gavin on April 10th.
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Thank you so much for meeting with us today. We know how busy you are so the fact that you took the time to be here means a lot to us. It really does.
I'm sure there is a frustration in treating someone in the ER and then, sometimes, never hearing the outcome. So we are here today to tell you what happened after that helicopter flew away from this hospital with our son on April 10th.
The short version? He died. When he got to DuPont, he had two more cardiac arrests that evening. He suffered profound brain damage that led to his brain death four days later on my birthday, April 14th.
The long version? Well… first, I have a confession. I stopped at the ER for reasons even I can't explain. I'm overprotective, but bringing him to the ER for the symptoms he had was over the top even for me. When I got him out of the car, I could hold him upright on my hip. But, in a move that I'm embarrassed to admit… I changed his position to carry him in like a baby. "If it looks more serious, perhaps they'll whisk us back and we'll get home faster," I thought. I now know that every single decision I made that day was guided. I kept both boys home from school because they had allergies. I changed their acupuncture appointment to earlier which put us directly across the street from the pediatrician and this ER.
Standing, pacing and needing to be close to Gavin in those terrible moments was every parent's nightmare. But you did everything you could to talk to me - and to Ed when he arrived. The chaplain seemed to know that Ed needed her comfort - and I needed my space. I wanted to be right in there to hear and see everything that was going on medically. I wanted cold, hard facts - and you provided that.
He made it to DuPont and we were able to spend four beautiful days loving on our first born son. We laid with him during the day and slept with him at night. Two days before he died, we brought his little four year old brother in for a special good bye which was beautifully done thanks to DuPont's Child Life department. I was able to bathe him… we were able to hold him… and we were surrounded by doctors, nurses, and other staff from the hospital that know us and love him and we couldn't have been more supported through this process. Doctors that have cared for him over the past five and a half years were able to come in to see him and say goodbye… one of his doctors even flew home early from a trip so she could see him one last time! He was - and is - so loved.
On the morning of his death, my 43rd birthday, I woke up next to him with an overwhelming feeling. I just knew I was pregnant. After years of infertility, multiple miscarriages and a stillbirth… we had given up and given all of our baby things away. It was hard to believe my intuition, but I just knew I was inexplicably pregnant. And I felt from that day that this was a daughter… and that we would name her Hope. Well… Hope Margaret will be making her debut, hopefully in this hospital where her two brothers were born, at Christmas time.
Ed and I made the easy decision to donate his organs. Our child was non-verbal, but he managed to help people… to heal them even… as if that was his life's mission… and never needed to speak a word to do it. It was only appropriate that we honor him by allowing him to continue that mission in death. His kidneys were able to save the life of a 40 year old man… and his organ donation journey spread like wildfire on social media, prompting hundreds of people to email me telling me that they had become organ donors because of Gavin… telling me they have had conversations with their families about the unthinkable: what would we do if we were faced with the choice of donating our own child's organs? I am so, very proud of that… and we are overwhelmingly proud of Gavin who died a hero. We waited overnight with his body until the surgeons were ready for the organ harvest. It was a privilege for us to wait, knowing that someone on the other end would be receiving Gavin's organs and have a chance at life. On the foot of his bed was a sign we had made that said: "Superhero Gavin… Off to Save Lives" We followed the surgeons as they wheeled him down the entire length of the PICU and couldn't fight back tears as the doctors, nurses, social workers, and other staff lined the hall and clapped. They clapped for our son. For his gift.
I tell you all of this because those four beautiful and heart-wrenching days wouldn't have been possible if it hadn't been for you. With all we have gone through, I have to tell you… each of you have been on my mind. A lot. I have worried about you since that day. I won't presume to even guess how you handle life and death moments with patients - especially children. But I worried that in some way you carried a burden… maybe wondered if you did enough… or worried that you weren't fast enough… or were concerned that in some way we might have blamed you. That is the main reason why this meeting was so important to me. We need you to know how GRATEFUL we are to each and every one of you. You kept him alive so he could get to his second home… DuPont. You kept him alive so we could spend those days with him… allow his brother to say goodbye to him… allow us to process what was happening before we came home without him for the first time. You kept him alive.
Gavin was always a very mysterious child. He remains undiagnosed, despite getting every genetic test available… and his autopsy was inconclusive. We will likely never know why this happened, but we believe it was set in motion before we stepped foot in this hospital and despite your best efforts, this was part of a plan that we may not understand. That in itself confirms MY suspicions. This mysterious little angel slipped onto Earth with a very serious mission… to change people. Then he slipped back to Heaven just as mysteriously. He really changed people - and he continues to even now. I hope in some small way he will change you as medical professionals. If you ever doubt… remember Gavin. Remember our short time here and how deeply you impacted us - we wouldn't be back here if that weren't true. Not every family will come back… you might not hear thanks… you may hear mostly complaints. So, if you ever doubt… remember my words. The outcome may not be what you train for, what you work hard for… but you are still helping people. You are privileged to stand with people through what may turn out to be the most profound journey of their lives...
…and we thank you for standing with us.
Kate, Ed and Brian Leong
18 June, 2013
