Monday, October 7, 2013

I Have A Confession

While my blog in no way represents all aspects of my life and I'm not a completely open book, I feel like I need to come clean.  Mostly for selfish reasons...I need to let this out.

I've been journaling since I was a kid and writing has always been an outlet for me.  When I'm having a hard time processing a heavy subject, it's always helped to write about it.  Sometimes if I can't seem to let something go, I'll write it down and it helps me move on.  I'm hoping this blog post does that for me.  I've never in my life had something weigh as heavily on my heart as this.

I've blogged about Megatron's surgery and how it's not fair but I haven't really gone into detail.  At first it was because it felt like it wasn't important to share the details with the masses (or with strangers).  It felt like if I shared all the details it would get everyone else all worked up.  It was about self-preservation too.  I wasn't ready to deal with the facts.  I wasn't ready to deal with the flood of emotions that would come once I accepted our reality.  I wasn't ready for everyone to really know what was going on for fear that we'd be getting a barrage of people asking questions, wanting to talk about it and know more.  I wasn't ready to talk about it more.  I still don't think I am but after avoiding people for the past month and realizing that this isn't going to go away, it feels like the right time to put it all out there.

It wasn't until after the surgeon got in and looked around inside Megatron that we officially knew his diagnosis, but we had a strong indication prior to the surgery based on the scans that were done.  After 6 1/2 hours of surgery, the surgeon confirmed Megatron has biliary atresia.  Once he confirmed that was in fact the condition, the surgeon performed the Kasai procedure.  Basically, Megatron was born without a common bile duct.  The bile duct is how bile flows out of the liver into the intestines to help with digestion.  Without it, bile backs up in the liver, which will eventually cause the liver to fail.  The Kasai procedure creates a passageway for the bile.  As The Pilot describes it, the surgeon "hot wired" Megatron's intestines directly to his liver, hopefully creating the needed passageway for bile to flow through.

Here's where it gets difficult for me.  The Kasai procedure is not a cure.  The procedure is buying Megatron time to grow and get stronger.  Only about 25-30% of kids born with this condition make it to adulthood with their own liver.  That means 70-75% need a liver transplant.  Sitting in the Children's Hospital GI clinic, holding my then 5-week-old baby, hearing he might need a liver transplant was the worst day of my life.  That was nearly 2 months ago and I feel like I'm only just now grasping what that means.  I wouldn't say I have accepted it yet.  Quite the opposite actually.  I'm more upset now than I was then.  I didn't want to believe it.  I went into the surgery thinking that maybe, just maybe, they'd find something else, fix it and we'd move on.  But that wasn't to be.

My sweet, tiny boy has liver disease.  Despite having surgery at 8 weeks old, he is not "fixed."  There is a greater chance that he will need a liver transplant than not..  We're going to face infections and other complications.  We're going to spend a lot of time at the GI Clinic at Children's.  He is currently taking 6 medications.  While that may go down a few once he's healed from surgery, he will take at least 2 medications for the rest of his life.  He may always have trouble absorbing vitamins and nutrients.  While he is growing well right now, he will be watched closely because he could easily stop growing due to not absorbing those vitamins and nutrients.

One of the first things that came to mind when we first heard the word transplant thrown out was "Oh my god.  He's going to go on a transplant list and we will wait forever for a little baby liver to become available."  Since they caught Megatron's biliary atresia so early, there is no reason to think the Kasai won't be a success.  He didn't have substantial liver damage yet (not all babies are as lucky as we are to have an amazing pediatrician and a world-class Children's Hospital that were persistent in watching his jaundice so carefully).  I still had to ask the question though.  Where would he get a liver if he needed one?  His GI doctor explained that more often than not it would come from an adult who was declared brain dead.  They would cut off a small portion of the liver to give to a baby and the rest would go to a small adult.  The liver is the only organ in the body that can regenerate itself, so I guess it isn't a big deal if someone is only getting a portion of a liver.  Sometimes, they will do a living donor.  A family member or other match can have part of their liver cut off and given to someone else.  The doctor did explain though that they don't like to have parents be the donor because then the remaining parent has two patients to worry about.  There is twice the risk.  It sounds like that wouldn't be an option for us anyway since Megatron's blood type doesn't match mine or The Pilot's (the poor kid had to get a rare blood type based on the recessive parts of me and The Pilot's blood types!).

Like I mentioned though, the Kasai procedure will hopefully buy him time.  The doctors have told us that the older, larger, and stronger Megatron is, the higher his chances are for having a successful transplant if he does need one sometime in the future.

Of course Megatron could be in that 25-30% that doesn't need a transplant.  He might be like a boy a nurse in the GI clinic told me about.  He's had the same GI doctor, and the same surgeon who performed the Kasai procedure on him when he was an infant.  He's now 21 years old, 6'2", still has his liver and is now transferring to an adult doctor.  He has "aged out" of Children's Hospital.  I've focused on that a lot.  That could be Megatron (though I highly doubt he'll be 6'2" considering I'm 5'3" and the The Pilot is 5'9").  There isn't any indication right now that that won't be our path.  The odds are against us but it could happen.  That's all I am holding onto right now....

...well, that, and the fact that this sweet boy is as cute as can be.  He doesn't look sick.  He hardly looks jaundice anymore.  He doesn't have a big, distended, hard belly like some babies with this condition have.  He's doing what normal babies his age (well, his adjusted age, since he was 5 weeks early) should do.  He's starting to track with his eyes.  He found his hands and loves to suck on his fingers.  He is smiling.  He's just our sweet boy that we are going to love no matter what.  We joke that he's our defective baby, but he's still ours.  We're going to stick to him like glue and navigate the world of biliary atresia together.  While this diagnosis sucks and I would give anything to fix him, we're going to keep plugging away.  We're going to do the best we can to take care of him.  We've already been lucky enough to have some of the best doctors in the world looking after him.  Like I mentioned in a previous post, we're just going to keep moving forward.

Having said that though, there have been and will continue to be a lot of tears, and lot of sleepless nights spent worrying more than the average new parent.  Bear with me if you see me and I start to cry when asked about Megatron.  Bear with me if I don't seem like my normal, organized self.  Bear with me if I am forgetful or crabby from lack of sleep.  Bear with me if I have no patience for petty problems anymore.  Maybe people will just chalk it up to me being a new parent...though I think this may last as long as this sweet boy and I are on this Earth together. 

After a particularly rough day, it was The Pilot who suggested I write it all down/blog about it.  He knew I would probably feel better if I put it all into words.  He had found it helpful to process it all by talking about it.  He had to fill in some co-workers and by telling the story a couple times, it got easier each time.  Since I've been on maternity leave for the last 11 weeks (just one more week left!), I've been a little more isolated.  I haven't had to tell the story as many times and its still very raw for me.  I do feel a little better getting it all out and I hope that by sharing it like this that more people will know what's going on with us.  It might help them know a little more about Megatron's condition and why we may have been a bit distant lately.  And to be honest, I'm somewhat hoping that the more I share on here, the less questions I may get in person.  Because I still can't guarantee that I won't cry or get emotional when asked.  I'm sure with time that will get easier.


  1. Wow, Amber, I want to say thank you for having the courage to share something so personal, but I'm not sure if that's the right way to put it. Why do I feel like I was peeping into your diary after reading this? :) I like your attitude about everything...just keep moving forward. And although your emotions are so raw and on the surface right now, I do think you're right; with time it should ease a little. It's encouraging to read that there is a chance he won't need a transplant, but if he does, it's amazing that the liver can regenerate itself, I had no idea. Those are positive things.'re right...he's stinking cute! Obviously I don't know you outside of reading your blog, but I want you to know I'm praying for you. Thank you for the update.

  2. I think blogging/journaling is a great thing to get it all out. I think it would be a great record of Megatron's journey.

    Bless his little heart...and liver. You are all in my prayers!

  3. I am so sorry to hear what you are all going through. Life is not fair but you were meant to be megatrons mommy for a reason. You are strong and you will both get through this!

  4. Thank you for sharing this story. We are all rooting for your family! When I think about all you've gone through, that's hard enough....but because these were all of your "firsts" - first labor, first child, etc. I believe that must make it even harder. Your mommy heart is working overtime. I hear the only cure for that is lots of hugs and kisses with cute babies.

  5. This is a really heart wrenching post. Liver disease is an ugly world - however, the people you meet are amazing and you find that you instantly have a virtual "family" who would do anything for you in a heartbeat. And if it helps - I have a son, 12 years old who is Kasai only and doing well. He is a flag football, basketball, cello playing bundle of joy :) Good luck and God Bless.