Lincoln's Birthday Basket

The Lincoln Classic is fast approaching! If you haven’t signed up, you have until this weekend. So hurry up!

Attendees can participate in golf+dinner ($100), or dinner only ($30). Let me know if you want to sign up!

Along with dinner, there are also awesome raffle baskets. Last year John and I decided we wanted to choose “Lincoln’s Birthday Basket” as one of the raffle items. With Lincoln’s birthday coming up it was nice to have a reason to pick something he would have liked for his birthday and use it for a good cause. This year we did the same thing.

So what do we think 3-year-old Lincoln would like for his birthday? We recently moved in to a new house that needed some work and John has been working his butt off fixing it up. If Lincoln were getting ready to turn three he’d be watching dad hard at work, using lots of tools. And we think he’d love this fun tool bench:

We're so excited for someone to win it at the Lincoln Classic! It just arrived today and it looks awesome.

I'll be honest - I cried picking it out. I also cried at the store ordering it. Which turned out ok I guess because Toys R Us ended up donating half of the cost. Thank you, Toys R Us! And then I cried when it arrived today. This one wasn't easy or pretty. But absolutely worth it to be able to do something to remember our peanut Lincoln. We love you, Lincoln!

This blog

I’ve thought a lot about what to do with this blog. I’ve written a couple of entries over the past year because doing so is therapeutic for me. I didn’t share because I’ve talked to other loss moms and I know what inevitably happens. I’ve written about it before and it’s the reality of life after loss.

The entries are loss related. They talk about things like going through the holidays without Lincoln but with Harrison, grieving on the 2^nd anniversary of Lincoln’s death while still parenting and smiling for Harrison, and coming to terms with Harrison becoming “older” than Lincoln did on earth (that one was especially difficult for me).  About moving to a neighborhood where people never knew Lincoln and handling the question “Is Harrison your only child?” and about the reality of Lincoln being looked over and forgotten as one of our children in little ways people with the best intentions don’t even notice. And like I said, if I share these entries I know what inevitably happens. Enough time passes that someone says “It’s time to move on.”

Reading that statement, a lot of my friends and family would say “No, that’s ridiculous, no one would say that.” But the experience of the loss community tells me they would. Not maliciously. Maybe they just want me to feel “better”, or maybe seeing references to child loss scares them because it reminds them that it could happen to anyone. Maybe they see me and think I look and act fine so I’m just being dramatic. I can’t pretend to understand their motives. But I know it happens to almost every loss parent I’ve met. And it sucks. Some days you let it slide off your back, but sometimes it catches you on a bad day and it cuts straight to the bone. 

However, like I said, writing is therapeutic for me. So I’m going to get over myself and keep this blog open. If I feel the need to write additional entries I’m going to share them. Maybe I’ll help someone understand loss a little better, and maybe they’ll avoid saying something well-intended but hurtful to another loss parent. That would be nice.

Why the Lincoln Classic is important

I’ve been thinking a lot about where I am in my grief, especially as September rolls around. September is Lincoln’s month for me. Lincoln would be two this year. Lincoln should be two this year.

I’ve been thinking about where I am in my grief because, well, that’s just the kind of person I am I guess. I tend to evaluate myself, my feelings, whether I’m doing better or worse than I expected. I’ve decided the pain hasn’t gotten better. It’s changed, and I’ve become better equipped at dealing with it and coping, but it’s still there. Pain that’ll take your breath away and bring you to your knees. Sometimes it will quite literally knock you down.

Harrison helps. He brings happiness and smiles, which are much needed. But that pain is still there. I used to come home (or to the hospital when that was “home”) and scoop up Lincoln. I’d give him a hug and get such a sense of peace. It didn’t matter what kind of day I had, everything was fine because I was snuggling my baby. Now I come home and scoop up Harrison. I give him a hug and no matter what kind of day I had, I feel better because I’m snuggling my baby. But I don’t get that same sense of peace. I miss that sense of peace. Not everything is fine. Someone is, and always will be, missing.

It’s always there. Sometimes in the back of my mind, sometimes in the front. But always there. Someone is missing. I’ll never have all of my children here with me.

I don’t get to post new photos of Lincoln growing up. I didn’t get to buy him a “Big Brother” outfit. I don’t get to see him teaching Harrison how to run around and get into trouble.

What I can do is celebrate Lincoln by getting together with people who love him at the Lincoln Classic. For one day I get to hear his name all day long. I get to talk about him without making people uncomfortable. I get to show the world that my baby was here, and he is important. All of this while raising money for the wonderful folks at Cincinnati Children’s who tried their hardest to save Lincoln. And that’s important.

Almost done casting!

We are almost done with casting! Harrison had his tenotomy (tendon lengthening) exactly three weeks ago. The doctor made a tiny incision in each heel so she could make little snips in his Achilles tendons, allowing her to stretch his feet from a pointed position to a straighter position. Then we had to leave the casts on for three weeks so the tendons could heal. They heal 80% in 3-6 weeks. Which I think is amazing. Kids are amazing.

Now three weeks is up, and the casts come off in the morning! We cannot wait! Tomorrow Harrison will get fitted for his brace, which looks like two shoes connected by a bar. Google says it will look something like this:

He’ll wear the brace 23 hours a day for the next three months. If all goes well and his feet do what they’re supposed to then he’ll move to wearing it only while he’s sleeping. He’ll keep doing that until he’s 4 or 5 years old.

The staff at Children’s tell us the brace will cause us more trouble than the casts because Harrison will be able to get it off. Apparently he'll learn how it works and may get a kick (haha, literally) out of trying to kick it off. I’ll take the tradeoff. I’m ready to give this baby a bath whenever I want, and take him in the pool! And take him outside without feeling bad about how hot it is. Our summer rule for having Harrison outside has been to imagine ourselves wearing a big, fluffy pair of sweatpants. If that sounds awful to us then Harrison’s probably pretty uncomfortable in two big plaster casts with cotton underneath and it’s time to get him back into air conditioning. I don't love the heat so I can't say we'd spend a ton of time sweating it out anyway, but even I've had enough of the indoors.

So excited for tomorrow!!

Casting, week 5

I promised to update on Harrison and I haven’t done a very good job so far. Sorry! So here’s the update…Harrison is doing great! He’s doing an amazing job growing, he’s over 11 pounds now. Great sleeper. I don’t want to jinx things but…he’s been sleeping 7-9 hours straight each night for about a week now. I love sleep! Fingers crossed we get more nights like this!

We are currently in week 5 of club foot casting. Here’s how it works…Each week, a few hours before Harrison’s appointment, John and I remove Harrison’s casts. The recommended method of removal is soaking the casts in a mixture of water and vinegar. The doctors do not recommend attempting to cut the casts off, as the plaster they use is very hard. Harder than the typical casts you see on a kid who has broken their arm. My explanation of how we remove the casts is in no way a recommendation to try it at home. That said, we have had great success so far being able to cut the casts off. John uses garden shears, blunt side only touching baby skin, makes tiny little tears all the way up the cast, then pulls the casts apart so they come off. That way we can keep each cast and see the progress each week, which is really cool!

After cast removal Harrison gets a bath. He loves bath time! We got his first smile on May 26^th (happy birthday, Aunt Maria!) when he was in the bath, it was really awesome.

Then it’s off to the orthopedic appointment for the next set of casts. The most stressful part of the day is timing it so Harrison is eating while his casts are being taken off (to keep him still) and then making sure he’s hungry at the time of his appointment (again, to keep him calm while they put the new casts on). Since Harrison usually nurses I always worry about getting bottles timed for this part, but it really hasn’t been a problem or even very stressful.

The casting does cause a little bit of swelling and light bruising, but it doesn’t hurt Harrison to get the casts on. The doctor only turns his foot as far as he’ll let her. But he sure does get a lot of sympathy and adoring looks from strangers when they see the casts, which I’m sure he’s eating up.

The casting is working.  They’ll cast to over correct the angle of his feet at his ankle, so his feet will point out in the casts. The idea is that if they over correct, when the casts come off his feet will end up at the correct spot. The doctor still can’t say how many more casts he’ll need, but she said it’s looking good. I’m guessing 6 more weeks, based on no experience whatsoever.

Right now both of Harrison’s feet are still pointed, but once foot/ankle angle are where the doctors wants them to be she’ll snip his Achilles tendon to make his feet point forward. This is done in the doctor’s office, not even a surgical center, and just takes a Band-Aid at the incision. Which is crazy to me, but great! After that he’ll get one more set of casts and these casts will stay on for 3 weeks to allow the tendon to heal. Then he’ll move on to just the brace.

Oh, and Harrison is getting very good at kicking with his casts on. Which is great! In other news, watch out for the baby kicking casts around. Ouch!

Also, Harrison is so cute! Right now he’s on his play mat, cooing and smiling away. So I’m going to go stare at him. Here he is! Growing out of clothes I insist on putting him in anyway!

One year

It’s been a year since Lincoln passed away. A little over a year now that I’m finally posting this. I started this post and thought about it a lot in the past month, but couldn’t seem to get myself to finish it. Maybe I didn’t want to acknowledge it’s been a whole year since we lost Lincoln. I don’t understand how it’s possible.

This year on Lincoln’s angelversary we hung out as a family. We went to Lincoln’s spot at Spring Grove, had coffee and donuts and told Harrison about his big brother. We didn’t get to stay as long as we would have liked because Harrison isn’t really into doing anything for a long period of time, but I’ve talked to Lincoln a lot about how little brothers sometimes need extra attention so I think it’s ok.

I had a lot of flashbacks in the days leading up to Lincoln’s angelversary. Especially on that day. What I was doing one year ago at every hour. It’s funny how so many details of that day are so clear, when the following days are such a blur.

A lot of loss parents say they feel a shift in their grief after a year. Not necessarily that it gets better, but that it changes. I can see that. We’ve been through each anniversary and holiday once without Lincoln so we know what to expect. It’s not that the pain is less, it’s that we can better anticipate and prepare for the pain. So that’s….good, I guess? Another common thread among loss parents is that the dread of a holiday or anniversary is worse than the day itself, which I’ve found to be true. Maybe knowing what to expect will help a little bit with that.

I’ve also been warned that others’ feelings about my grief will change. People in the loss community talk a lot about this. People won’t understand why I’m not “moving on” or “getting over it”. I can see that as well because my feelings about my grief have changed. I sometimes find myself being less kind to myself, thinking I should be doing better. Then I remember my baby died. I almost never say it like that. I say Lincoln passed away, or that we lost him. To say that he’s dead feels so harsh. But that’s what happened. He died. He’s been dead for a year. And sometimes I have to say it like that to myself to remind myself of the magnitude of what happened. I’ll never “move on” or “get over it”, and that’s ok. It’s ok to have a bad day. It’s ok to have a bad week. All I can expect of myself is to do the best I can.

I understand there are some people who will find my grief to be too much and that’s ok, too. They won’t understand why we talk about Lincoln to Harrison. They’ll disagree with mine and John’s decision to always include Lincoln in our answer to the question “How many kids do you have?” even if it makes people uncomfortable. They won’t understand why the Lincoln Classic is so important to us. And I’m coming to terms with that.

The wonderful thing is that after a year there are still people in our lives who are there for us. Even if they don’t understand, they’re there. And that’s what I want to focus on this year. The people who love Lincoln and love us. Those people are wonderful.

So, that’s that. It’s been a year. We love you, Lincoln. We miss you every day. Come visit any time you want.

Harrison is here!

Harrison is here! Obviously, based on the number of photos I’ve been posting to Facebook.

Harrison Lincoln Spurrier arrived on April 8^th, 2015 at 8:16am via scheduled c-section. He was 7 pounds, 12.5 oz and 20 inches long. Perfect little baby!

The c-section was relatively uneventful. The only glitch was that Harrison had been head down for weeks so I guess no one bothered to check him before starting the procedure. He had moved to transverse (sideways) so delivery took a bit longer and mom and baby ended up a little bruised, but all was well in the end. I felt better as soon as I heard him cry, and while I was being stitched up John held him so we could both talk to him and give him kisses.

Then he gave us a couple of scares…little stinker...

On our first night in the hospital someone decided they should check Harrison’s blood sugar. It was low, but went up after he ate. Then they checked it again at his next feeding and it was low, but got even lower after he ate. They moved him up to the Special Care Nursery, which is not quite the NICU but gives more attention. Cue emotional breakdown for me. I still wasn't allowed out of bed, so I had to hand off my baby to be taken somewhere I couldn't get to and I was not happy about it. However, once he was in the Special Care Nursery all of his tests were just fine. The pediatrician said another baby had weird glucose levels that night as well, so his assumption is that the testing machine on our floor was off (even though that’s the first thing I asked the nurse and she insisted that wasn't possible). So Harrison was back in my room a few hours later and I was happy. Actually, he was released at about 2am, right after John fell asleep in Harrison’s room and I had taken a couple of Percocets in my room. So after all my tears when he was taken away, I ended up asking them to keep him a couple extra hours until John woke up. Sometimes moms and dads just need to sleep!

About a week later we went into the pediatrician’s office because Harrison was squeaking a lot while eating. There’s no other way to describe the noise, he just squeaks sometimes. The doctor said he has laryngomalacia, which means he has come floppy tissue above his vocal cords. No big deal, he should grow out of it. However, when John put Harrison in his car seat Harrison had what they call an ALTE (Apparent Life Threatening Event). He had some reflux, milk came out his nose, and he choked and turned blue. The pediatrician turned him on his tummy and gave him a few pats and Harrison was just fine, but the event bought us a one night stay at Children’s for monitoring. Lovely.

Harrison was absolutely fine all night, and has been fine since. But I will say spending the night at Children’s was awful. We were kind of ok at first, we were too worried about Harrison to think of much else. Then they brought me my parent badge. Same photo my badge for Lincoln had, same lanyard, same everything. Which turned into a pretty big grief trigger for me. Then we moved into the room we stayed in overnight and it was just surreal. The room looked like all the other rooms…just like Lincoln’s rooms. I hated every minute of it. I hated the resident who asked how old our first son was, even though I KNOW he had been told Lincoln passed away IN THAT VERY SAME HOSPITAL less than a year ago. I know this because the other resident in the room stopped him and told me they had just been told. I hated him even more when he asked if I remembered Lincoln’s birth date, as if Lincoln’s passing could have potentially made me forget the date my child was born. Idiot. I wish punching people was socially acceptable.

But we were home the next day, and that’s what matters. And I’ve gotten side tracked…back to Harrison…

Harrison has since seen the cardiologist for an echocardiogram as a precaution. The cardiologist told us to go away and not come back. Those were his actual instructions. Yay! We haven’t done liver or kidney blood work yet, we’re going to wait another week or so, but there is no reason to think there are any issues there. Again, just a precaution.

We’ve also seen orthopedics for Harrison’s club feet. That doctor wants him to put on a little more weight before casting starts, so we’re set with a first casting date of May 4^th. She expects the casting along with a tendon cutting at the end of the casting process will be enough to correct the club foot. The casting will turn his feet forward instead of in, and the tendon cutting will then allow his feet to point straight ahead instead of down. We’ll have a better idea of long the casting will take once we’re a few weeks in. I’ll update and explain more once the process starts.

So that’s where we’re at. We’re enjoying snuggles with this little guy. It is wonderful having him here, and my fear that I wouldn't love him enough is gone. He’s brought baby happiness back to the house. He’s also made me miss Lincoln even more. I didn't think that was possible. But Harrison has reminded me of all we are missing with Lincoln. I know some people might think “but at least you have another baby to love”. Yea…call me selfish, but I’d prefer to have both my babies. That’s something I know I’ll have to work through and come to terms with. For now I’m just trying to be kind to myself and acknowledge that this isn't an easy process. But I couldn't be happier with our decision to have Harrison, and I love him so much. I’m going to go smooch him now!

A Harrison update

Quick Harrison update…I’m still pregnant. Ugh! I’m very ready to meet this little guy but he is taking his sweet time. Which is actually probably a good thing. The longer he waits the more my fears turn into just being ready for him to get here. But it’s been long enough and I’m ready now, any time little guy…

Since it’s looking unlikely Harrison’s going to make his arrival in the next 14 hours, John and I will be heading into the hospital tomorrow morning at 5:15am for our scheduled c-section, which will take place at 7:30am (assuming they’re running on time, ha!). If Harrison came on his own we would have tried to avoid the c-section this time but since I've had a previous c-section the doctors don’t want to try an induction and don’t want Harrison going too far past his due date. I’m not exactly thrilled about surgery, but whatever gets this little guy in my arms works just fine for me.

The doctors don’t expect any medical issues so this should be a routine birth. Harrison will be checked by a hospital pediatrician once he’s born, which is standard, and then he’ll go to dad while they’re finishing up with my c-section. Harrison’s pediatrician will also come to the hospital to check him out within a couple of days, which is very reassuring for me. He saw us through each step of Lincoln’s diagnosis so he knows exactly what to look for. He told us Harrison will probably have a few more blood draws than he’d like, but hopefully they all show that Harrison’s heart, liver and kidneys are perfect.

The only slight glitch is that they’ll also be taking a close look at Harrison’s feet. We found out he has two club feet. John and I didn't actually know what that meant before the diagnosis. It means his feet are turned in...sit with your legs straight in front of you and then picture the soles of your feet being turned so they would touch when you put your legs together and that gives you the idea. It shouldn't be a big deal at all and will hopefully be correctable with casting. Harrison will get casts on his legs and feet when he’s between 1-2 weeks old. The casts will be changed each week to slowly turn his feet to the correct position. The process will hopefully take only 8-12 weeks but will depend on how his feet react. After that he’ll wear a brace that looks like a snowboard, but that allows his feet to turn and move. The length of time he’s in the brace will also depend on how his feet react.

I’m not going to lie, John and I were sad and angry when we found out. Obviously club foot is nothing compared to the myriad of other problems Harrison could have. Trust me, we’re painfully aware of that. But we feel we put in our time at Cincinnati Children’s. We've paid our dues with doctor’s appointments. However, we also realize we asked Lincoln to pick out his little brother. And everything we've read about club foot tells us the success of treatment is highly dependent on parents sticking with it and being consistent. So the way we figure it happened is that Lincoln knew Harrison was worried about his feet and knew his parents wouldn't take breaks from treatment. So Lincoln sent Harrison our way, and we’re definitely ok with that.

The good news is that Harrison doesn't appear to have any other health problems. Club foot can be associated with neurological disorders and some pretty bad chromosomal abnormalities but it doesn't look like Harrison has any of those. And the doctors say they think Harrison’s club feet are malformations as opposed to deformations. This means the bones in his feet look properly formed, just turned incorrectly, which should make treatment easier.

So that’s what we have going on. Just waiting to meet our sweet little rainbow baby boy. Very impatiently waiting. I have big plans to give him more kisses than he knows what to do with. We can’t wait to introduce him to everyone tomorrow!! 

An update a long time coming

It’s been awhile since I’ve posted. I’ve thought a lot about things I’d like to write, but have had a hard time figuring out how to start. It’s been so long since I’ve given an update that I don’t know how to do it now without getting long winded! So I’m going to start by going through the most common questions people ask John and I these days and I’ll try to keep it somewhat brief.

1)     Any updates on Lincoln’s genetic testing?

Nope. The outstanding genetic tests compare mine, John’s and Lincoln’s DNA to see if there are any abnormalities that might have caused his health problems. This test got started in September, will take 1-3 years, and the doctors don’t really expect to find anything. So we’re not holding our breath.

2)      Have you had genetic testing done for baby boy #2 (Harrison)?

We’ve had some basic genetic screening done, but since the doctors don’t know what caused Lincoln’s health problems there is nothing to test his brother for.

3)      So do you know if baby Harrison will have any of the same problems Lincoln had?

No idea. We hope not. The doctors think it’s very unlikely. But we’ll have to wait and see.

4)      Are you nervous about it?

Well, that’s a stupid question. Of course we’re nervous. But our desire to grow our family outweighs our fear. Our only options were 1) wait 1-3 years for a genetic test to probably tell us nothing 2) not have any more children or 3) focus on hope. We’re going with #3.

5)      How’s Harrison’s nursery coming along?  

This question is tough because people want expectant parents to answer with optimism and excitement when talking about nursery setup. But the honest answer is that the nursery set up was an emotionally charged and often very painful process. John and I would love to have been able to set up Harrison’s nursery with the same level of excitement we had when setting up Lincoln’s nursery. But we’re not those same people any more. It’s not that we’re not excited for Harrison, that couldn’t be further from the truth. But it was heartbreaking to take Lincoln’s things out of storage and be reminded of how much he never got to use and how much we missed out on. It was not fun.

But the nursery is set up now, and we think it looks awesome! It has the same nautical theme we chose for Lincoln. We considered changing it, but in the end decided having an angel for a big brother does not mean Harrison gets all new things. Sorry baby, hand me downs are part of having an older sibling! We did change the layout and do some painting, so the room looks quite a bit different. There is a lot of Lincoln included, but a lot of changes just for Harrison. We think it’s a nice mix.

I also got advice from a fellow loss mom who found incorporating the new baby’s name into the nursery décor was helpful in differentiating the room in her mind. So we’ve put Harrison’s name on the wall and added a couple other items with his name on them. We expect bringing a baby home to that room will bring back a lot of memories and be a difficult experience, so hopefully that helps. I know it’s already helped me associate the room with Harrison instead of only Lincoln. And that’s what Harrison deserves…a room filled with love for him and not just sad memories for his parents.

6)      Any question about “feeling better” or things being better when Harrison gets here.

Another tough question. I think people want us to feel “better”. Things that cannot be fixed make people uncomfortable. But losing Lincoln and meeting Harrison are two completely separate things. I think Harrison’s arrival will bring joy to our lives, but not lessen the pain of loss. A friend said it perfectly once that “Harrison is Lincoln’s little brother, not his replacement”.

Harrison is our rainbow baby. This is the best explanation I’ve seen of that term:

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope. 

For me, that fits how I feel perfectly.

7)      How are plans for the Lincoln Classic coming?

Things are starting to get under way! Our most exciting update is that last month we finalized where our donation money was going. Giving the donation to the liver team was great, but we wanted to know specifically where the money would go and provide final approval. I was a bit of a control freak about it. It was very important that the money be put toward something that would really help the team learn more and provide better outcomes for liver kids.

Knowing this, the liver transplant team asked that the funds be allocated to pay for part of the salary of a Liver Transplant Clinical Research Coordinator (CRC). After hearing what this person would do, we agreed it would be a great use of our Lincoln Classic funds. Here’s a description of the position:

·  The support of a liver transplant clinical research coordinator increases the efficiency and productivity of clinical research studies, enabling the research team to do more studies each year. 

·  The CRC takes care of the "day to day" details of a clinical research study, freeing up the Hepatologist's time for other pursuits. You know, for things like saving babies and dreaming up ways to advance medicine :)

We’re really excited to be able to help the team in such a tangible way! More research means better medicine and more lives saved.

Our next line of business is to officially set up as a non-profit organization so we can provide receipts and allow everyone’s donations to be tax deductible. Then we’ll figure out how to let people donate online.

8)      Finally…How are you doing?

Depends on the day. We’re working through how to cope with our loss and still function day to day. Sometimes we’re successful, sometimes less so.

I can’t speak for John on this because I know he processes his grief differently. But for me, most of my energy goes into getting through the work day with some level of normalcy. Grief counselors say to remember that grief is constantly changing and is not only emotionally exhausting, but physically exhausting. So on those days when I just don’t feel I can put on a happy face and socialize, I avoid it. Some days I have a hard time being around kids, and other days I’m fine around kids. I do better with both social outings and being around kids with advance notice, it allows me to mentally prepare. Some days I can look at pictures and videos of Lincoln and smile, and some days I can hardly stand it. Some days I can visit his spot at the cemetery and chat with him about how being an angel doesn’t mean he doesn’t have to share his toys and eat his vegetables, and some days I visit and all I can do is lie on the ground and cry.

I haven’t been able to be a very good friend to others and just hope my friends are still there in the future. Because there is nothing else I can do. There will always be a broken part of me and I’m still trying to learn how to cope with it. My baby was here, I could hold him and give him kisses. Now he is gone and I want him back. I expect I’ll always struggle with it.

So that’s my update. Sorry it got long! I’ll try to do better about updating more frequently so my posts don’t get ridiculously long like this. The next one will be about Harrison and how he’s doing so far (spoiler alert, he’s doing great!). If you’ve made it this far, thank you for listening!

Lincoln videos

I thought I'd post a couple of the recovered Lincoln videos, because they're just so cute! I wish I could post more, but there is a 100mb limit for a single video and the others exceed that. Sorry family, I can show you next time I see you! Also, I can't figure out how to rotate them so some are sideways.

But they are pretty cute! Love and miss this little guy so much every day.

This one is Lincoln at just over 4 months old...

This one is just over 4 months, too, bouncing with daddy...

And here's Lincoln chewing his Sophie giraffe at almost 5 months...

And this is Lincoln at about 7 months, all gross and covered in green beans. I remember wondering if all babies try to sleep eat like this...

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.

Listing

Lincoln's repeat cardiac cath was last week, and the results were better than the one prior. This was really good news! His heart isn't perfect. It's still pumping more blood than it should have to. They said his heart is squeezing well but isn't relaxing well. But it's better than before, and the cardiologist believes this particular problem is directly related to his sick liver. Unfortunately, the subaortic membrance is also coming back. It's not as bad as it was before but we'll have to keep a close eye on it.

A kidney test called a GFR was the last test we had to do before listing. The doctors wanted to know how his kidneys were working so they could plan out the post-transplant anti-rejection medications. His kidney also aren't perfect, but are doing better than they were before surgery.

Finally, on April 22nd, Lincoln was officially put on the liver transplant waiting list! It was the most exciting and terrifying news we've ever received. And now we just wait. In the meantime, myself and a couple other people are being evaluated to be living donors.

We're still in the hospital but Lincoln has been feeling better for the last few days. He's smiling, kicking his legs and playing with his toys. He has some physical delays, he can't sit up on his own yet and he can't push himself up when he's on his belly. This is pretty normal for liver kids. His belly gets very bloated and really makes it hard for him to lie on his tummy. And of course a couple of surgeries and having to stay in bed for weeks will delay most things. Poor kid just doesn't get the play time other kids his age get. The nurses tell us that once kids get new livers they catch right up and I hope that's true.

Another piece of good news is that the doctors think he's right on track mentally. He's interested in things, recognizes people and reacts appropriately to noises and new people. Of course there is just no way to know the long term effects of all this, but it's reassuring that he seems to be developing so far!

Lots of updates

It's been an unacceptably long amount of time since I've updated the blog, and I apologize for that. As more time passed it started to seem like a more and more daunting task so it never got done. I'll do a quick overview of the past couple of months, and then an update of where we are now. Sorry, it may get long. Also, I am far from a medical expert, so I will just try to explain things as I understand them.

February
Heart surgery happened and was a success. Lincoln had a little bit of a hard time going on heart lung bypass but came off bypass fine. He never picked up eating like he was before surgery, but we went home in the hopes that he'd pick up once in a few days. Unfortunately, he didn't, and his electrolytes dropped low enough that we were readmitted after only a few days at home.

March
The first few weeks of being back in the hospital were a terrible roller coaster. Lincoln wasn't feeling great and wasn't eating great so we started him back on ng feeds. However, he was throwing up occasionally and since the doctors weren't sure why they kept ordering him NPO (traslation: not allowed to eat). They'd try to put him on fluids but he generally doesn't react well to that - he kept holding too much fluid then would have trouble breathing because the fluid in his belly pushed against his lungs. He landed in the PICU (pediatric intensive care unit) a couple of times. This back and forth continued for a couple of weeks, and during that time Lincoln got very little nutrition and lost a good amount of weight. Finally, after many sometimes intense conversations with Lincoln's doctors they finally started him on TPN, which is IV nutrition. This wasn't ideal since obviously we'd rather he get his milk, and TPN is hard on the liver, but we were just happy he was getting any sort of nutrition.

Once he was stable the doctors wanted to get the kidney surgery knocked out. The surgery to get rid of his UPJ obstruction (blockage in his ureter) happened 25 days after the heart surgery, and that was a success as well. The urologist had been concerned that the kidney would be in bad shape and he'd have to remove it, but it looked better than he expected and he was able to remove the obstruction. Yay! As an interesting side note, the surgeon also told us that Lincoln's bilirubin isn't only in his skin. His internal organs, fat, tissues, etc all have a yellow tint to them. The sugeon was a little surprised I think I had never thought about it before, but it makes sense.

Recovery from kidney surgery was not easy. They removed the breathing tube a couple of days after surgery, but then Lincoln had trouble breathing so the next day they had to reintubate him (sedate him and put the breathing tube back in). Then a day later (I think it was the next day anyway...it all blends together) he went into septic shock. His blood pressure dropped very low and he had a lot of fluid in his lungs, and was generally having a hard time. Turns out he had RSV, which probably contributed at least a little to his difficult recovery. RSV is a virus that in an adult might not show up as anything more than a runny nose. But in kids, especially kids like Lincoln who are fresh out of surgery, it can lead to some pretty serious complications. He finally stabilized but it was still a couple of weeks until he was able to kick the RSV symptoms and his breathing improved. I'll take this moment to remind people that if you're not feeling well, don't risk it! Don't visit little ones and don't go into hospitals. What shows up in you as just the sniffles could be a very big deal to someone else. It's always better to be safe than sorry.

After he was recovered we finally got Lincoln on a steady nutrition plan. He was, and is still, on ng feeds and then eats whatever else he wants by mouth. A week or so after he was stable Lincoln had another cardiac cath to assess whether his heart was now strong enough for a liver transplant. He was approved for listing, but liver transplants involve clamping some major blood vessels so the old liver can be removed and that puts a lot of stress on the heart. The doctors wanted to be sure his heart could handle it. Turns out his heart function wasn't ideal. His heart was pumping more blood than it should have to, likely because of his sick liver. It was making his vessels floppy. The extra blood flow was making them expand, and then they were having trouble relaxing. So picture a balloon you've blown up then let the air out of. The balloon never quite goes back to its original shape. This is common with liver disease but unfortunately makes a transplant riskier. To try to improve his heart the plan was to take a week to give him dieretics to get some fluid off him, give him time on his steady nutrition plan, and give him extra oxygen.

However, before we could get a repeat cath, Lincoln got a bacterial infection. Another complication of liver disease. Crazy how much your liver does, huh? Since Lincoln's liver can't filter out things like bacteria he's at increase risk of a blood infection. The bacteria he got is one that's found in the stomach, it made its way to his blood stream. Luckily we found it super early and he didn't really have any of the complications it can cause. Sidebar...

From the start of our latest hospital admission John and I felt like we were struggling to be heard by the doctors and nurses. We know Lincoln and wanted to be involved in his care decisions. For example, we knew he doesn't react well to being on IV fluids. However, he kept being put on IV fluids even when John and I emphatically asked that he not be and instead be allowed to start his ng feeds. It's especially hard because the doctors rotate every week. So it felt like once we finally got through to one team and they were listening to our thoughts, they'd leave and a whole new team would come in. Finally, after weeks of pushing, we got a core team of doctors who knew Lincoln and knew us, and they are now the "go to" team for decisions for Lincoln. And they listen to us, which is awesome.  Back to the bacteria...

One morning John felt that something was up with Lincoln. Lincoln just wasn't acting right, and John expressed his concerns to the doctor. Because we now have this great team who really cares about our input, the doctor listened to John and took him seriously. She ran a bunch of tests, one of which was a blood culture, to make sure nothing was wrong. That's how we caught the bacterial infection so early. The care team worked exactly like it should and Lincoln's health benefitted.

Turns out the bacteria had gotten onto Lincoln's PICC (basically a long term IV, makes it so they can draw labs and give him medicines without having to stick him every time) so they had to pull it out. Of course the cardiac cath was postponed.

Got rid of the bacteria, and that brings us to today. Lincoln is getting his repeat cath, and hopefully things look better. They originally wanted to get another liver biopsy on the same day but that didn't work out. The transplant team will go over the cath results in a meeting tomorrow and will decide if a biopsy is really necessary. He had one when he was very small, but they may need to repeat it to see if anything has changed. They want to be as sure as they can that a new liver will fix the problem.

We need this cath to show that his heart is in better shape. Othewise they won't be able to list him and accept a new liver for him. Updates to come...hopefully it won't take me 2 months to write an update this time!

Surgery Date

There has been a lot of back and forth this week regarding Lincoln's heart surgery date. The surgeon is booked, but Lincoln's liver is getting worse so we can't wait. If liver function gets too bad then the surgery can't happen. But the surgery has to happen before Lincoln can be listed for a liver transplant.

After a lot of conversations and meetings between Lincoln's doctors and the surgeon we got a surgery date of this Monday. We get admitted early Sunday afternoon. Lincoln will get an exam and blood work Sunday and surgery will be first thing Monday morning. The only minor hiccup is that Lincoln just got his 6 month vaccines on Thursday because he's on an accelerated vaccine schedule to prepare him for transplant. The heart surgical team doesn't like kids to have been vaccinated within the 2 weeks before surgery because the heart/lung bypass machine can wreck havoc on the immune system. The one vaccine in particular they're concerned with is for rotovirus because that vaccine is a live virus.  They think it'll be ok, they're more concerned with things like the MMR and flu vaccine before surgery, but they're triple checking with the infectious diseases team to be sure it's ok.

The surgery itself takes 4-5 hours and is open heart. They go in through the aorta to get to the membrane below his aortic valve. They'll also perform a myectomy (I think that's what it's called, I didn't write it down), which involves removing some heart tissue to change the shape a little. This will change the way the blood flows and will lessen the pressure at the spot the membrane grew, with the hope that with less pressure the membrane will be less likely to grow back. I apologize if anyone reading this knows more about the heart than I do, I'm sure I oversimplified how the myectomy works, but I think that's the basic idea. The heart is really complicated to understand!

We and the surgeon are confident and hopeful for this surgery, but in the spirit of full disclosure I will say that there are risks. The surgeon has performed plenty of surgeries on subaortic membranes but they are usually on bigger kids (5-7 years old is the more common time for a subaortic membrane to become an issue). Since Lincoln is younger his heart is obviously smaller, and his aorta runs small. Don't get too nervous, the surgeon has performed the procedure successfully on kids as small as Lincoln. But he has not performed the surgery on someone as yellow as Lincoln. The main risk we're running is how Lincoln's liver is going to react to all this. But it's a risk John and I feel we have to take.

Fingers crossed that surgery can happen on Monday. We'll update as we can.