A letter to my warrior

My dear, sweet Addison -

From the moment you were born, you have been my fighter.  You have beaten so many odds and over came so many hurdles.  You have given the word 'fighter' a face... and it is a beautiful one.  You have given me inspiration and strength on days that you didn't even try.  You are AMAZING!  You have taught me so much about myself, life, God, and family.  You have given me a new perspective on truly being thankful and for finding joy in each day.

Your life has been far from easy.  You have faced more challenges in your short 6 years of life than some people with face in an entire lifetime.  I can't say that life has always been fair for you and that I've always understood why you had to fight so hard to just be alive.  And I can't promise that all of your troubles are behind you.  But I do believe that God's got some amazing things planned for your life.  I do believe that He is going to use your life to bring so much good.  And I will confess, that watching your life has changed the way that I choose to live mine.

I do believe that God uses our children to teach us.  He certainly has done that with you.

Thank you for teaching me to love in a bigger way.  Thank you for showing me that playing and laughing is the most important thing we can do most days.  Thank you for teaching me that life is exactly what you make of it and finding joy is such an easy task. Thank you for showing me that even when your dealt some really crappy cards - it doesn't mean you've lost.

I do know exactly why God gave you to me - and I am grateful.

Happy 1 year transplant anniversary (or liver day, as you call it) sweet girl.  I hope that you always remember where you started, the hurdles you've crossed, and how hard you've had to fight to get to where are today.  And just incase you ever forget the battles you've faced, I've made you a video so you  can always can remember (just as a mom would)

Here's to the next 90 transplant anniversaries.  I love you bigger than the sky!

With all of my love-
Mommy

Click here to watch video of Addie's Journey:

Addie's Transplant Journey


Addie's transplant journey

The Other Family

The main purpose of this blog is for Addie to be able to look back over her journey when she is a teenager, a young adult, a mom, or an old lady and be proud of how hard she fought and how far she has come.  I want her to be able to feel the emotion of her journey because at 5 years old, she can't understand how brave she is!  I pray that she never takes her gift for granted.  There are some really happy and exciting parts of her journey.  And there are some really sad and scary parts.  What I'm writing about in this post is the sad stuff.  I've debated whether this is appropriate and whether some day Addie will appreciate my words and my feelings.  And the truth of the matter is, this is part of her life.  There was another family affected by Addie's transplant as much as or more than our family.  And I want Addie to appreciate that some day.  I pray that she honors her gift and always continues to fight as hard as she can to protect her gift for the rest of her long and healthy life!!  

Our lives changed forever at 1:46 am on Tuesday February 3rd.  This was the time that we got a phone call from Pittsburgh hospital telling us that they had a possible liver for Addie.

Over the past several weeks, I've spent a lot of time thinking about the other family that was greatly affected by this phone call too.  Because see, when we got this phone call from Pittsburgh at 1:46 in the morning - it meant that a family was sitting with their child and trying to prepare themselves to say good bye.  They were going to have to watch as he took his last breath and no longer have the ability to hear him laugh or watch him grow up.  This breaks my heart.

Without sharing too many details - Addie's liver came from a little boy in Philadelphia.  He didn't suffer, he wasn't sick, he didn't have time to hug his momma and say goodbye to her.  He was there one minute and gone the next.  This is one of those things about life that I just don't understand. A child.  A little person who barely had a chance to live his life.  

I can't understand what the other family and especially the other mother was feeling that morning.  I can't relate to her and I can't even pretend to try.  As mom's, our natural reaction is to protect our kids from feeling an ounce of pain and to hold on them until the pain is gone.  I wanted to do that with Addie in the moments after this phone call - and I imagine that his momma was feeling the same way about her son.  The day of Addie's transplant, the OR time kept getting pushed back.  The first OR time we were given was 2:00 in the afternoon. It was pushed back to 6:00 in the evening and even further till 10:00 in the evening till they finally took her at 2:30 in the morning.  I don't know details of why the surgery kept getting pushed back.  I know the placement process of organs is a big deal and takes a lot of coordinating and matching between the donor's hospital and the recipient's hospital.  And if the donor is healthy enough, they can use all of their organs and place them with people waiting for a better life.  So this process could have certainly played a part in the delay of Addie's surgery.  But I also know that Gift of Life can't begin the procurement process until the family is ready.  How in the world can a momma ever be ready for what comes next for her dying child. So as we waited, I kept reminding myself that it was not in vein.  Our wait was nothing compared to what this other family was facing.

I can clearly remember at one point, during our wait, Dr. Kyle - who was flying to get Addie's new liver came in to see how we were.  I started expressing  my concerns about the little guy in Philadelphia and what his family was going through.  And Dr Kyle, by no means, was trying to be heartless- but reminded me that our focus needed to be on Addie.  In a few hours, she was going to walk through the toughest journey of her life and she needed us to stay positive and to be supportive. Sadly, our worries or concerns weren't going to change the situation in Philadelphia and it would do our family no good.  It was good advice.  And I turned that worry off for the moment.

But now, as I've watched my child run around the yard and play with her sister and pick up sticks with her daddy and dig in the garden with me - I can't turn that sadness off.  Don't get me wrong, I'm grateful for the gift that his family gave us.  But I can't imagine what the other family is going through.  I can't imagine how hard life is to move forward without your child.  I can't imagine the pain that they must feel on a daily basis.   

How do I ever express the gratitude in my heart to a family that has experienced so much loss?  Is saying THANK YOU enough?  Because the truth is, if all aspects of life were completely our choice - I doubt that this family wouldn't have chosen death so my little girl could have life.  But because of the choice that they were forced to make - they have given my Addie things that no one else has ever been able to give her.  And for that choice, I say thank you.  You have given Addie a life that I never imagined was possible.  Your gift has given Addie the ability to play outside and not be falling all over the yard because she has terrible coordination from fluctuating ammonia and high ASA levels.  Your gift has given her the ability to think clearly and wake up in the morning without a fog over her brain.  Your gift has given my child cognitive skills so she can play and think and create like she's never been able to do before.  Your gift has given her the ability to eat whatever she wants - whenever she wants.  Your gift has given us the ability to have a conversation with Addie without her needing to stop and collect her thoughts in order to form a sentence.  Your gift has given truly my child a better life. I am humbled and thankful.  My promise is that I will protect and honor this gift and the piece of your son that is still alive in Addie the best way that I can - every day of my life!  

HOME!!

April 3, 2015 - Two months, to the day we are FINALLY heading home.  Addie's team wanted to watch what her liver was going to do for 2 weeks after her bout of rejection.  Since she continued to respond beautifully - they were ready to start us on the next leg of this journey....home.

As excited as we were to be going home - it wasn't without tears.  We were sad to be leaving our family in Ohio.  My in-laws graciously opened their home to us for an entire month and never complained.  They never complained because the girls were too loud or taking over the TV.  They never complained about us turning their home into a mini hospital with all of Addie's meds and hospital equipment.  Instead, they made sure we were comfortable, snuggled and played with our kids, encouraged us as we walked through our fears, and created bonds that are not able to be broken.  We are thankful for the hidden blessing that we found in getting to spend an entire month with them despite the reason for us being there.  They made their house our home away from home.  They gave us the ability to just take care of Addie and not worry about anything other than that job.

So even with many tears - we packed 2 months worth of clothing, gifts, hospital equipment, and toys and began our journey for home.  If it would have been up to Addie, we would have come home on Wednesday rather than Friday.  As soon as her transplant coordinator called on Wednesday to tell us that her labs were beautiful and they were going to discharge her - Addie said "ok guys, put your shoes on and lets go."  Bless her heart!  From the moment she first opened her eyes in the PICU hours after her transplant - she began to ask if we could go home.  And she never stopped asking.  Every single day she asked to go home.  Because home for her meant she was safe.  It meant she wasn't going to be stuck with needles or put through procedures or have strange people walking into her hospital room at all hours of the day/night.  It meant that all was right in her world and she was safe.

So today was the day that we got to honor her request and take her home.

Katie, Ang, Greg, Tanner and Tyler all stood in our driveway to give us a big WELCOME HOME.  They cheered as we drove up our street and jumped for joy as we pulled in the driveway.  They ran into our arms and hugged us like they were never gonna let us go.

We are lucky to have a phenomenal family in Ohio and in Spring Grove.  Our Spring Grove family worked hard to make sure that we walked into a warm and clean home.  Our brother-in-law, Greg, took excellent care of things at our house while we were gone.  He stopped at our house on  a weekly basis to make sure that things were safe.  And a few days before we came home - he made sure our heat worked (which it didn't - but he got it fixed for us).  Our sweet friend, Cheryl, gave us one of the greatest gifts she could have given us... She cleaned our house!! And it looked beautiful!!  My mother-in-law washed our sheets and made our beds.  Ang made signs and created a space that Addie would be excited to see and Katie got us groceries to get us through the our first couple of days home.  Yep - we are blessed.

There truly is no place like home.

Rejection

March 20, 2015 - The results from the biopsy came back and Addie is indeed rejecting.  Her transplant coordinator called with the results on Friday afternoon and asked us to come to the hospital that evening.  The plan was to start a round of high dose IV steroids to stop the rejection and to step her down off of them over the next several weeks.

We got the hospital around 7 PM and around 9 PM they were ready to start the bolus steroids.  The transplant fellow told us to except a very emotional little girl over the next few days because steroids tend to make kids emotional, crabby, and (hopefully) hungry.  They administered the first round of steroids around 9 PM Friday evening and every 4 hours after that for the next 24 hours.  By 4 AM Saturday morning - the steroids already began to do their job as Addie's liver functions tests were already much lower!!

About 80% of liver transplant recipients reject within the first 8 weeks after surgery.  Believe it or not, this is not a bad thing.  Its shows that Addie's body is doing its job.  That her immune system works well enough to fight the new liver and to try to attack it to get rid of it.  And sadly, this isn't a once and done thing.  Addie's immune system will continue to want to attack and "kill" her new liver.  Addie will need to have labs done weekly (to start and as the weeks and months pass, we can spread them out) so her team can watch her liver functions and adjust her immunosuppression medication if needed.  Its a balancing act.  We don't want to suppress her immune system too much - but we don't want her liver to reject either.  Thank God we have a team of doctors that are experts in liver transplants and know exactly how to handle this!!

By Saturday afternoon we started to notice that about an hour after the steroids were administered - Addie didn't become grouchy, she actually became hyper.  It was hilarious!  She'd literally ran around the halls of the hospital and yelled and giggled.  We loved it.  This was a very welcomed behavior after the past 7 weeks of Addie lacking energy.

Addie's liver continued to respond nicely to the steroids.  By Monday morning, Dr. Shindi was so please that he started talking discharge.  He wanted to take her off of the IV steroids and switch her to pill form so we could start our transition to discharge.  He wanted to see what her labs looked like on Tuesday morning - and if they were good, he was kicking us out!!  He was also talking about pulling Addie's ND tube - which was terrifying because we still had a little girl that didn't want to eat or drink.  But from his experience, he finds that kids start to depend on the ND tubes for nutrition and hydration and won't do much eating or drinking until they are out.  Worse case scenario - we put it back in (easy for him to say...).  So Ben and I discussed Dr. Shindi's suggestion and decided to give it a try.

Addie's liver numbers were close to normal by Tuesday morning so her team started the paperwork for discharge.  And as the team was working on discharge papers - our favorite Physican Assistant, Tammy, came in and pulled Addie's NG tube.  Luckily for me, I have a husband that can handle watching these types of things - because when I know Addie is going to be in discomfort, I have trouble watching.  So, I stood by the door and Ben sat with Addie and with a little whine - and a cough,  it was out.  Just look at that beautiful face.

Big sister

Yep - I am gonna brag about my kids (well, more about Alivia).

I think my kids are two of the most phenomenal people on the face of the earth.  Not only do I think they have the coolest personalities - I think they are pretty stinking cute too.  I am not sure how Ben and I are so lucky to be blessed with the two greatest kids around - but for some reason, we were and I am so incredibly thankful for their lives.

Ben and I waited until Alivia was 3 before we decided to try for another baby.

I worried that we waited too long and that our girls wouldn't be close because there were so many years between them. But that certainly wasn't the case.  Alivia was thrilled when we found out we were pregnant with Addie and she was even more excited when she found out that our new baby was a girl and that she was going to have a sister.  And from the first moment they met - they formed the type of bond that every sister should share.  It is incredible.

Alivia has always played the big sister role quite well.  She loves to be mother hen and she loves to help in any way that she can with Addie.  This has been true since Addie was a baby.  Alivia always wanted to help feed her bottles and change her diaper and help put her to sleep.  Whatever we were doing with Addie, Alivia wanted to be involved.

Over the past several months, as much of the focus as been on Addie - Alivia was ok with taking the back seat.  She has never complained about Addie being the center of attention.  She never complained about all of the extra gifts Addie was getting or the events that were held to honor her sister.  Instead, Alivia was proud.  She held Addie's hand, held her head high, and honored her sister. It is really quite amazing.

Alivia has shown an incredible amount of maturity and selflessness over the past 2 months.  She cried with as as we watch Addie being rolled into the OR.  She sat up, all night, with us as we waited for Addie to get out of surgery.

She sat in Addie's hospital room with us day after day and never complained of being bored (and believe me - at times, it was really boring) or finding something else to do or not having friends to play with.  Instead, she encouraged Addie.  She was ready to give lots of hugs to who ever needed one, and her kept her sense of humor that kept us all smiling and laughing.  She snuggled in Addie's hospital bed with her (when Addie would allow her to) and willingly gave her big sister hug's and kisses. She cheered for Addie as she took her first steps (after her transplant).  She encouraged Addie to take bites of food and sips of drinks.  She was the true meaning of support. She was ok with being whatever it was that Addie needed.  In fact, when family members that came to visit asked her if she wanted to go with them for a change of scenery - her response was always "no thank you.  My sister needs me here with her."  

She is one amazing little girl.  She loves her sister in a way that only a sister can.  We are honored and grateful that she is ours.  And Addie is lucky to have one heck of a big sister!

A special way to honor Addie

This video was made for Addie by Aunt Katie.  You have had quite an impact on her heart, Addison Grace.  And your obsession with her makes it clear the impact that she has made in your life, as well.  Katie choose a very appropriate song to express her desire for your life.  And I have to agree, she found one that expresses exactly what daddy and I pray for you every day!  You have defied so many odds, sweet girl, and you continue to kick butts and take names.  And the best is yet to come!!

"I Lived"

One Republic

Hope when you take that jump, you don't fear the fall

Hope when the water rises, you build a wall

Hope when the crowd screams out, they're screaming your name

Hope if everybody runs, you choose to stay

Hope that you fall in love, and it hurts so bad

The only way you can know is give it all you have

And I hope that you don't suffer but take the pain

Hope when the moment comes, you'll say...

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Hope that you spend your days, but they all add up

And when the sun goes down, hope you raise your cup

Oh, I wish that I could witness all your join and and all your pain

But until my moment comes, I'll say

I, I did it all

I, I did it all

I owned every second that this world could give

I saw so many places , the things that I did

with every broken bone, I swear I lived

Uh. A frustrating week!

March 16, 2015 - Last week, at our weekly clinic visit - Addie's liver numbers were slightly elevated. Not terribly elevated - but enough to get some hearts pumping and a concerned medical team.  When liver numbers bump up, especially in the first few months out of transplant - rejection is always a concern. Especially when there is nothing viral going on.  And our team of doctor's at Pittsburgh always error on the side of caution.  They are very proactive and aggressive in Addie's treatment.  I LOVE this about them.

From the same set of labs last week, Addie's prograf level (this is the amount of immunosuppression she has in her blood stream and gives us an idea of how well immune suppressed she is) was 5.8.  Considering they want to keep her level at 10 right now - her level is very low.  This MAY be the reason why her liver numbers are elevated.  So the plan is to increase prograf slightly and increase her steroids so IF she is rejecting - we can stop it right away.  Dr Kyle also ordered an ultrasound for Friday (of last week) to make sure that the liver still looked good and that all of the arteries and bile ducts were flowing nicely (see, I told you they were aggressive).  Thankfully, her liver looked beautiful.  Dr Kyle requested repeat labs for Monday (3/16/2015) morning.

As if this new wasn't enough, as we were walking out of the hospital from the ultrasound, Addie's transplant coordinator found us to tell us that Addie's EBV level was elevated.  Very elevated.  Crap. Seriously?? EBV (or mono) is a virus that most adults either have experienced or have been exposed to.  Most of us carry this virus without issue.  However, for a transplant patient, this virus can reek havoc.  Since it attacks the lymph nodes - in an immune suppressed patient, if left untreated, it can cause a form of lymphoma.  So getting it under control is vital.  Typically, in a transplant patient, EBV is treated by decreasing immunosuppression to allow the body to fight the virus.  Easy enough. Right?? Unless your body is starting to reject its new liver and decreasing immunosuppression would just make the rejection worse.

We repeated labs yesterday and unfortunately, her liver numbers elevated a bit more.  The theory, from last week, that elevated liver numbers were from a low prograf level was void.  Its likely rejection.  So, as of today, the plan is a liver biopsy.  This will allow us to see whats going on with Addie's liver and to make an effective plan with how to move forward.  The frustrating part is that we treat one of these issues - we fuel the other.  So we need to know exactly what we are dealing with and a biopsy will give us a clear picture.  We aren't sure of the details - but a biopsy will be scheduled for later this week.

The feelings of concerned, worried, scared, feeling defeated are coming bursting back into our hearts.  This situation can be treated. It's just a bit more complicated than what we hoped for. (for some reason, Addie likes complicated scenarios).  We will get through this.  Just as we have gotten through all of the other obstacles that we've faced, we will do what it takes to get Addie through this.  We trust that God's in control and that He will continue to show his power.

On the up side, Addie is starting to have much more energy.  She is slowly eating more and it is becoming much harder to keep her down.  Most days, she'd rather play with her sister that sit on the couch.  AND... the girls are even starting to fight with each other.  Sounds silly, but we love seeing things return to normal.  These days, its easy to find joy in the small things.  When life is shaken up - its much easier to be thankful for the things you typically take for granite.  Thats the silver lining, I guess.