Thank you!

The Lincoln Classic was Sunday and I can’t thank everyone enough for making it a success. Thank you Maria and Brian. You’re amazing, and a force to be reckoned with. Unstoppable. Thank you Kerri, Alison, Kristy, Lindsey, Andi, Missie, Bri, Erin, Kelly, Charissa, and everyone else who made the Lincoln Classic possible. For asking businesses for gift cards, for putting together raffle baskets, for sending donations, for taking time out of your day to come play golf and have dinner with us. Thank you John and Brian for doing the public speaking when I couldn’t pull it together to say it myself. Thank you!

We received so much support and love and it’s humbling. The donation amount is not yet final, pending final invoice from the Hamilton Elks (a beautiful golf course, by the way). But it’s safe to say we’re over $8,500! We were told by folks at Children’s that this was not a small event, and it’s not a small amount of money to have raised. We agree! I want to take a moment to tell everyone who participated what you’ve done.

1)  You’ve raised money for the Gastroenterology, Hepatology & Nutrition Department at Cincinnati Children’s Hospital Medical Center. Why is this such a big deal? I have a friend who is always saying “Money buys science, and science saves lives.” I believe that wholeheartedly. By giving resources to the folks at CCHMC you allow them to keep poking and pushing at their boundaries, making them question why the boundaries are there and how to get around them. The more they poke, push and question, the better they get at saving babies like Lincoln. And babies like Lincoln need saving.

2)  You reminded Lincoln’s family that we’re not alone. The grief of losing a child is isolating because it’s a pain most can’t relate to. Which is a good thing. We don’t want anyone else to know the kind of pain we know. But it’s lonely. Seeing so much support from friends, family and even folks we’ve never met reminded us we’re not alone in our grief. People are still standing by us, loving Lincoln.

3)  You allowed us the opportunity to continue to parent Lincoln. The thing is, when you lose a child you don’t lose the need to take care of them. That ache in your heart that says you need to watch over your baby and make sure they’re ok? Still there. But you lose the ability to take care of them the way your heart tells you to. It’s an incredibly helpless feeling. Make no mistake. Maria and Brian did the bulk of the work for the Lincoln Classic. But John and I were able to pick up small pieces of the work and it let us feel like we were doing something to take care of Lincoln. We were honoring him and helping people remember him and it took away a piece of that helplessness.

These things are a big deal. Thank you. You’re amazing. We’re already looking forward to next year’s Lincoln Classic!

Lincoln Classic 2014 - Links for Lincoln

We are so incredibly excited about Lincoln's upcoming event. Lincoln's aunt and uncle, Maria and Brian, have decided to put together a golf outing in his name. They are amazing, and are working incredibly hard to make sure this event is fun for everyone. It's in September, just a little over a week before Lincoln's birthday. John and I expect September to be a pretty difficult month, but this gives us something positive to focus on. Did I mention we're excited??

Proceeds from the golf outing will go to Cincinnati Children's Hospital Medical Center in two forms. Most of the funds will go to the Gastroenterology, Hepatology and Nutrition department (the liver department). Lincoln got help from many departments during our stay there, but the Gastroenterology department was his "home base" and his core team. Our goal is to raise enough money to get Lincoln's name on a wall or plaque somewhere at Children's. He was a really important little guy and a big deal, so that is the very least we can do!

A smaller portion of the funds raised will be allocated to the Child Life department. This is the department providing kids with toys/movies/etc. to use during their stay at the hospital. We're going to buy several "star gazer" machines that Lincoln loved. They're small projectors that display "stars" on the ceiling and walls. They're a bit of a hot commodity because they're one of the more expensive items offered by Child Life so not many are available. In fact, the only time one was available to Lincoln was in the Pediatric ICU. They weren't available on the Liver floor so he didn't get to have one in his regular room there. We were going to buy him one as his coming home present. Since we never got that chance we're going to purchase several that will be specifically for kids on the Liver floor. This is what they look like:
http://www.amazon.com/Laser-Stars-Indoor-Light-Show/dp/B000VBNIP2/ref=sr_1_1?ie=UTF8&qid=1406986044&sr=8-1&keywords=star+light+show

The golf outing offers two options.
1) Golf and dinner. This option is $100, which includes a donation. Singles to full teams are welcome! If you don't have a full team, no worries. We'll be pairing individuals to create full teams. It's a scramble, so no pressure if your golf skills aren't at Tiger Woods level.
2) Dinner only. This option is $25, which includes a donation

The outing will take place at the Hamilton Elks Golf Club at 4444 Hamilton Middletown Road in Liberty Township, Ohio. Shotgun start at 1pm.

Before/during dinner there will also be a raffle. Raffle tickets will be available for purchase, and raffle items have been donated so all raffle proceeds go toward the donation. There are some great items being raffled off! Bengals tickets, Reds tickets, Xavier items, wine and food baskets, restaurant gift cards...it's going to be a lot of fun! And for anyone who likes the photographer who took mine and Maria's wedding photos and the photos taken of me, John and Lincoln on Lincoln's last day before he became an angel, our friend and favorite photographer Tracy Doyle has donated one photo session to the raffle.

I'm sorry I can't attached the flyer or sign up sheet, but both are available here: https://www.facebook.com/#!/lincolnclassic?fref=photo

You can also contact Maria or Brian Huberfeld:

Brian Huberfeld
bhuberfeld@yahoo.com
513-535-6482

Maria Huberfeld
lachermaria@yahoo.com
440-622-0640

This event is going to be a lot of fun, and we hope to see you there!

The Autopsy

We met today with Lincoln's liver doctor to discuss the autopsy results. He told us...not much we didn't know. Everything they thought before was true. Lincoln did not have biliary atresia, the ducts outside of his liver were in place. He had a shortage of bile ducts inside his liver, just like his biopsy he had when he was just a few weeks old showed. His liver was scarred, as the doctor expected. The only unexpected thing about Lincoln's liver was the fibrosis in his liver wasn't what they normally see. I'll try to explain this without butchering the medical profession...Instead of the fibrosis (fibers that form when the liver is scarred) being kind of uniformly going from one particular spot in the liver to another and leaving empty space in the middle, Lincoln's fibrosis was more scattered across that empty space. The doctor said he's seen this before but it's not what they typically see. He has no idea what it means, if anything, other than Lincoln's liver didn't act like anyone expected. But we already knew that.

Lincoln's heart had regrown tissue below his aortic valve and his aortic valve was smaller than it should have been. His left kidney was smaller than it should have been and his right had grown larger to compensate. His lungs showed signs of previous trauma, likely from his fluid retention and difficulty breathing leading to previous trips to the PICU. But the main takeaway was that there wasn't anything they missed while he was still alive. And nothing to provide a diagnosis, other than to verify the "Alagille Syndrome like" symptoms.

The next step is to do genetic mapping. This will involve comparing Lincoln's DNA to mine and John's to see if there are any abnormalities in us or if Lincoln has anything genetic he couldn't have gotten from us. A big question we have is why this happened and whether it would happen again if we have more kids. But unless they find a genetic "smoking gun" they can't answer that question. The doctor said when multiple organs are involved it's almost always "syndromic", or part of an underlying syndrome, which is almost always genetic in some way. That doesn't necessarily mean it's something inherited. Lincoln could have had a random genetic mutation he didn't get from me or John. But it means it was likey in his genes one way or the other. The gene mapping provides a definitive answer 30% of the time and a tentative answer 20% of the time. It takes about 6 months.

My worry of course is that it wasn't something genetic and it's something I did, a random infection maybe. If that is the case we'll never know. I know I shouldn't blame myself, and the doctor and John tell me it's ridiculous to think that. But I think moms are prone to worrying it's their fault. I mean, I grew him, I was supposed to keep him safe. The doctor told me again today it is hugely unlikely it's something I did, but I think unless they find something genetic I'll always wonder. Having something genetic to blame wouldn't necessarily make me feel better, because at the end of the day Lincoln is still gone. But at least I could stop second guessing myself.

Music to my ears

“The sound of my baby's name may bring tears to my eyes, but it is music to my ears.”

I don’t know whose quote that is. I found it yesterday. It’s not mine, but it fits.

I want to start by saying thank you to everyone. It’ll never be enough but I want to say it anyway. I thought about writing thank you notes so everyone who has supported us would know how much we appreciate them but I just can’t find it in me. I wouldn’t know what to write. So for every gift, card, kind thought, dinner, everything, thank you.

If you dropped off dinner and saw the truck in the driveway, we were probably home and couldn’t bring ourselves to face anyone. We probably forgot to thank you. You didn’t get mad or judge us. Thank you for that. It’s still hard to do “normal” things like go to the grocery store or cook and you made it so we didn’t have to.

If you sent a card, email or text you brightened our day by reminding us you care. We might not have sent a response because we’re not really quite with it just yet. You didn’t take it personally or expect anything from us. Thank you for that. They say you find out who your friends are during hard times and I think that’s true.

If you sent money to our family you helped us find Lincoln a beautiful resting place without the financial stress it would have caused otherwise. We find so much comfort in honoring him with his spot and knowing John and I have resting spots right next to him so he won’t be alone. Thank you for that.

We know people wonder how we are and want to know if we’re ok. We’re kind of ok, or some new version of ok. We’re back to work/school/starting a business. I won’t speak for John but personally, some days I’m ok and some days it’s about all I can do to put one foot in front of the other and get through the day. But we’re still here, still love each other, doing the best we can. We try not to be hard on ourselves. If some nights all we have the strength to do is lie on the couch, hide from someone bringing us dinner, and watch TV then that’s all we do.

We also know people wonder if we have any answers about what caused Lincoln’s health troubles. We don’t yet. There was one more genetic test for Alagille’s Syndrome outstanding but that came back negative. That means it either wasn't Alagille's or Alagille's is connected to a gene they haven't linked it to yet. We meet next week with Lincoln’s liver doctor to discuss autopsy findings and next steps. When we were still in the hospital they told us they’d probably do genome mapping for myself, John and Lincoln. My understanding is it would compare Lincoln’s entire DNA to ours to see if anything looks out of place. Everyone has genetic mutations that usually don’t cause any problems, but it’s possible he had one that caused all this. They said 30% of the time they find something definitive, 20% of the time they find something that might have caused problems, and 50% of the time they don’t find anything. So we’re not really counting on getting answers but are hopeful.

Finally, we know people sometimes don’t know what to say to us or are afraid to ask questions. It’s ok. You can ask anything you’d like. Please don’t feel like you have to hedge around the topic to keep from upsetting us. You won’t upset us by talking or asking about Lincoln. We are proud parents and love to talk about our son. Sometimes I might cry, but don’t let that bother you.

“The sound of my baby's name may bring tears to my eyes, but it is music to my ears.”

Visitation & Service

Lincoln Lancaster Spurrier

Age: 0

Born: September 16, 2013

Died: May 14, 2014

Obituary

Lincoln Lancaster Spurrier.         

Born Sept. 16, 2013; passed away May 14, 2014. He is survived by his parents, John Lancaster and Melanie Kathryn Spurrier. Lincoln was a courageous angel who got his wings too early. He is loved and missed, and touched more lives than he ever knew. His smile lit up a room and will continue to shine from heaven. Visitation will be held on Mon., May 19, 2014 from 9:00 am to 12:00 pm with service immediately following at the Gwen Mooney Funeral Home of Spring Grove Cemetery.

Our Angel

Wednesday, May 14th was the day our angel got his wings.

John and I both stayed at the hospital the night before, and slept in until 8am or so. I used to get up earlier so I could have my teeth brushed and be ready to participate in daily rounds, but I hadn't participated in a few days. There didn't seem to be much point, so we just got the summary from the nurse. There wasn't anything new.

The nurse disconnected the CRRT a little after 10 am. They removed one of two PICC lines, then John and I gave Lincoln a bath. Then the ventilator was removed. Lincoln was on high flow oxygen for a few minutes to make sure he was stable enough to go outside, then on a lower flow nasal canula. About 20 minutes after the ventilator was removed we headed outside.

John and I got to take our baby outdoors. Last time we were home it was February and cold, so it had been awhile since we'd been able to. John got to put Lincoln's feet in the grass, and we think Lincoln liked it. He was sedated, but his feet curled around the blades of grass and he didn't pull away. John walked him around, letting him touch leaves and rocks, and showing him just a tiny bit of what we had wanted to show him in a lifetime. I'm unbelievably grateful that we were able to get some beautiful photos of our family.

Being outside with Lincoln was bittersweet. It was wonderful to be with him with no tubes or lines. But in order to keep him comfortable he was pretty sedated, and was clearly sicker than he had been two weeks prior.

We spent the rest of the afternoon in Lincoln's hospital room. Lincoln and I took a nap together and I think it was the most peaceful rest I'd had in a long while. All three of us laid in bed for awhile, then just Lincoln and I again. We watched TV, something we hadn't done in weeks. It was wonderful to just lay next to my baby, with my arm around him and giving him kisses.

John switched places with me and got into bed with Lincoln while I went down to the cafeteria to get some dinner. About 5 minutes after I got back, with his mommy and daddy holding him and rubbing his head, he took his last breaths. We think he was comfortable, and we don't think he realized what was happening. We knew before the doctor came in to check that Lincoln was gone.

We stayed in the room with Lincoln until the nurse came to prepare to take him away, which took about an hour and 20 minutes. During that hour and 20 minutes the nurses and John packed up the room. I wasn't able to do much but sit in bed with Lincoln. I wished we had packed earlier. I spent most of the hour and 20 minutes just staring at Lincoln, wishing it wasn't the last time. I know I'll see him at the funeral home, but I'm afraid by then his skin color will be different. I'm afraid he'll be pale, not his usual "liver kid" bronze, and I'll hardly recognize him. I stared at him, smelling his head, kissing his fingers and cheeks, hoping I could somehow stamp the feel of him into my mind. The nurse removed his second PICC and helped me get him into his pajamas. Blue striped with a little lion on them.

I'd wondered how it would feel to leave the hospital for the last time. The chaplain took us out the back way so we didn't have to pass anyone in the waiting room, but otherwise we left like we would have left any other day. Walking through the lobby I'd walked through so many times on my way to my peanut was heartbreaking. Luckily we have some great friends who came took our things to our house, and who met us at the house so we didn't have to be alone.

We miss Lincoln so much already, and I know that will never go away. He made us better people. He was the best baby anyone could ask for. Taking care of him was never a burden, not for a minute. I am honored to be his mom and I know John is honored to be his dad.

The post I hoped I'd never have to write

I've spent a lot of time looking for blogs written by parents with "liver kids". I wanted to know how their kids were doing compared to Lincoln, how they did post-transplant, how parents felt about the whole process...I felt it helped me prepare for different paths we might take. Inevitably I'd find blogs with posts written when kids weren't doing well. I'd read through the posts, hoping the kids would get better, and I'd come across that post where the parents explained that there was nothing more the doctors could do. I hoped I'd never have to write that post.

But here I am. There's nothing more the doctors can do. Weekend before last Lincoln's kidneys stopped working and he started holding onto too much fluid. It wasn't a ridiculous amount, something his heart should have been able to handle, but his heart didn't handle it well. His heart rate and blood pressure dropped. He had to be intubated. The doctors all met at their weekly transplant meeting the following Thursday and discussed how now that Lincoln was on a continuous dialysis machine (Continuous Renal Replacement Therapy, or CRRT) his heart function was back to how it was before this episode, but they now realized that it wasn't strong enough to make it through a transplant. It also isn't strong enough to make it through another heart surgery. His doctors tried. They talked about combining heart surgery and liver transplant, kidney transplant, everything they could think of. Things that had never been done, but they were willing to explore in every effort to save Lincoln. They felt every option they thought of was futile, and would at best cause Lincoln to die on the operating table and at worst make him suffer before eventually passing away after a surgery.

John and I were first given the choice to preserve as much liver function as possible or to give him any medication necessary to keep him comfortable. We went with comfort. We were then given the choice whether leave him on the respirator and CRRT or take him off. If we left him on he'd eventually pass from liver failure or, more likely, an infection. Then the doctors would be reacting instead of planning ahead, and his pain would be more difficult to manage.

So tomorrow around 10am Lincoln will be disconnected from the CRRT. They'll disconnect all of his lines, clean him up, then remove the breathing tube. Since his kidneys aren't working he'll start to hold onto fluid, and will pass from respiratory failure, although we don't know how long that will take. We asked the hospital to let us take Lincoln outside, somewhere we can sit with him in the grass (assuming it doesn't storm on us). The hospital has been great and is making that happen. We'll also have our friend and photographer Tracy Doyle with us to hopefully get some photos of our precious little man.

The doctors don't know how long it'll be before Lincoln starts to struggle to breath. They don't actually know how well he'll breath on his own once the tube is removed. The PICU attending doctor thinks Lincoln will make it through pictures and his trip outside, but other than that the day is unclear. They said maybe hours, maybe a day or two. No more than two days. We had hoped Lincoln would be able to wake up and look at us, but we won't know until tomorrow whether that'll be possible while still keeping him comfortable.

Lincoln has a pain management team that will be with him when we go outside to make sure he doesn't suffer. They said that families get distressed watching kids in this situation struggle to breath, but that the families don't believe the kids suffer. He'll be on medication that doesn't let him realize he's having a hard time breathing.

The conversations we've had to have over the past week are surreal. We sit there, me usually with a cup of coffee or water so my hands have something to play with, and talk about things we never fathomed having to discuss. Things like how our son will die, and where we want him buried. Whether we want an autopsy. Whether I want to donate the breast milk we've stored. Usually at some point during these conversations I kind of zone out and think about how I can't believe this is really happening and I'm really having these conversations.

Thank you to everyone who's visited, called or sent messages during this journey. You've helped us so much, and we appreciate it.

We're feeling whatever it is you feel when you go past devastated. And the kind words, thoughts and prayers help keep us afloat.