It has been a long, long day... after a long, long night... and I'm feeling very incoherent and exhausted. Hope was rather fussy last night so the two of us were up a lot. And she needs to be nursed at LEAST every three hours so I was awake much of the time. That's the bad news.
The good news? My little sweetheart is a champion nurser. My milk is IN, people. And those who know what that means may have done a collective "ouchie!" in my honor. The hard part sometimes is waking her up to eat - but she needs to gain weight and she needs to get rid of her slight jaundice. And breastmilk can accomplish both of those things!
One thing she needed to do before being declared ready for discharge was to pass the "car seat test" with a respiratory therapist. This happened in the middle of the night. Lucky for me, I had a rock star nurse who understood my need to document the moment. While I slept, she snuck away with Hope and my camera! She passed with flying colors!
This morning, as the princess slept in (and Mommy tried to keep her eyes open and her brain focused) the discharge process began.
Hope's doctor from the NICU came in to examine her and told me her weight had gone from 6lbs, 1oz to 5lbs, 9oz. He wasn't concerned about it that much - and actually told me that he never really believed her birth weight. I had been so pumped with fluid before the delivery and it's likely that it got transferred to her. She was very swollen (as was I!) and that has gone away (for her - not me - booooo!). He also told me that her bilirubin was showing some slight jaundice. Ed and I need to drive her back to the hospital for blood work tomorrow to check the levels again. He told us, if needed, we could do phototherapy at home!
Brian and Ed showed up to take their girls home. Hope and I both had wardrobe malfunctions, but we didn't care. The "coming home" outfit I planned for her was about ten sizes too big for my preemie! Lucky for me, I had packed an outfit that Miss Sara bought for her that looked on the smaller side. And I had planned a "coming home" outfit - but forgot an essential part of it. So I ended up wearing the same outfit I walked into labor and delivery wearing that had been all crumpled up in my suitcase to take back home. Oh well. If you think I spent a moment stressing about it, you'd be wrong. I was so excited to get home with our little girl.
I was also VERY excited to let Brian hold his sister for the first time. And it was a moment that we will never - EVER - forget.
He took it all very seriously and was really careful and sweet. The first thing he said to her was, "I'm going to take care of you." And all day, he proved that to be true. He wanted to take her picture...he wanted to understand everything (and I mean everything) about breastfeeding...he would come to me if he heard her crying to ask, "Mom - is the baby okay?" He is 100% invested.
Ed and I are so happy - and so relieved - that he is excited to be a big brother. We lost our son... but Brian's heart was broken, too, when he lost his big brother. Although it's impossible for Gavin to be replaced - and we don't presume at all that Hope could - there is one thing we are sure of. Something we heard Brian whisper to his baby sister today.
He kissed her softly.
Then he leaned in for a gentle squeeze and said...
Today I had a glimpse of you like I've never had before. I feel like I was invited to peek into a secret world that many never see... and it was such a beautiful privilege.
Actually, being your Mommy is a privilege! Since the day I knew you were in my womb, I have loved you. Your Daddy and I feel honored to be gifted with a daughter and just know that there are special things in store for you. In our eyes, your mere existence is a complete miracle to us.
As I looked at the screen and saw your sweet face... your rosebud lips... and watched you yawn... I pictured you in my arms. I can't wait to figure out "our song" and "our book" and "our routine..." just like I did with your brothers. I just can't wait for all of us to get to know you.
Hope, I want you to know that you are joining a very unique family. Some people might see us as having a sad history - but you will soon be in on the secret.
Our family is not sad at all. You will learn that you have a sister in Heaven named Darcy. Perhaps you've already met her! I never had the chance to know her - to find out what her personality was like - to see what she would look like. But she has left a beautiful mark on our hearts that has made us stronger, wiser and more compassionate. And as we share her story with you - and celebrate her special days with you - you will realize that she will leave the same mark on your heart. Your big sister.
And you will learn all about your big brother, Gavin. Perhaps you've met him already, too. You will realize how strong and brave and wise and loving he was. I have two big brothers and always felt like they protected and watched over me. Lucky you will also have two big brothers - and, in their own ways, they will do the same. We were so, very sad when Gavin was taken from us. But that did not, in any way, take away from our joy in knowing you were on your way to us. Somehow, sweet Hope, God has given us the gift of grace... and the gift to be able to balance delicately between these two incredible events. We will pass all of the gifts and lessons that we've learned to you and your brother. Because of Gavin and because of Darcy, you will have extra special qualities that are part of our "secret family recipe." But this is a secret that is okay to be shared - and I hope that you do share it with the world as you grow.
Your Daddy and I are so happy that you've been sent to us. And we are excited to see how our family will change and grow and deepen and widen in every way when you come home. And your big brother, Brian, is eagerly anticipating Christmas this year! He talks to you every day and gets so, so happy when he feels you move for him. Have you heard him talking to you? Your little conversations are already so special. You're going to love Brian. I think the two of you will have an instant bond.
Today the doctor told me that you couldn't look more perfect. He said you are growing right on target and as of today - 28 weeks and 3 days into my pregnancy - you weigh two pounds, ten ounces. If you are born on target - you're expected to be seven pounds! If that happens, you'll be my biggest baby!
He also told me that you already have lots of hair - and showed me what it looks like on ultrasound! Incredible. I'm so grateful for technology. The little spikey white lines is your hair!
I am still believing you born, Hope. And I know that the four of us - with Gavin and Darcy by our side always - will make an incredible earthly team.
As of today, I am 18 weeks and five days pregnant.
Five months.
I'm not sure how that happened so fast. I am very grateful... and relieved to be enjoying a really comfortable and drama free pregnancy so far. I love being pregnant so part of me wishes it would all slow down.
But I am five months pregnant.
I was five and a half months pregnant with Darcy when I delivered her. Her cord was "hyperconvoluted," the obstetrician told us. Twisted and twisted and twisted... long and tight. We never saw it coming. I chose to deliver her - I felt we owed it to Darcy to meet her. It took an unprecedented (and ironic) five and a half days to deliver her in the hospital. And she arrived minutes before Mother's Day... in the fifth month of May.
This fifth month will be nerve-wracking for me. I suppose I wouldn't mind if this month went fast - and then the last months went slow. Maybe I could ask for an ultrasound every day so they can check on Hope's cord. I'm kidding, of course, but part of me wishes as a Mom that I could always know... always protect... always "save" my children.
But that is not how life works. And some children can't be saved, as we know in a very painful and intimate way.
But we are believing this baby born. And, with your help, this fifth month will be filled with distractions to keep me calm... positive thoughts to give me a boost... and prayers for her safe journey through the Fall and Winter.
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...
