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!