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.”