I am her match.

I am Bea’s match.  What an incredibly relieving yet terrifying feeling.  When I received the email from the living donor coordinator I wanted to scream with excitement but immediately a wave of “this is real” came over me.  

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Bea & I will be undergoing 8+ hours of surgery and they will be removing part of my liver to implant into my 5 month old daughter to save her life.

Wow. 

While I am not concerned at all about how I will do in surgery, the prep work and the recovery….I still just can’t believe Jordan & I had a baby 5 months ago and she needs a new liver…soon.  

I had a meeting with one of the doctors who will do my surgery and he said “our priority is to take care of you, mom.  At the end of the day, Bea was dealt an unlucky hand and it isn’t your fault.  We cannot and will not compromise your health even more if something doesn’t go as planned in the operating room.” 

 First, that is NOT what a mom wants to hear.  We want to hear that the priority of everyone in that room is Bea and they will take and do whatever they need to to make sure she is healthy.  Secondly, I disagree with the first part of the statement.  I don’t think Bea was dealt an unlucky hand.  I believe that Bea was put on this earth to remind us of a few things:  don’t take time with your family for granted, be grateful for each day, and…have fun – life is short.

Okay, onto the logistics.  So, as of right now, Bea is listed on the deceased donor list.  We could get a call any minute saying that they have a match for Bea and we need to get to the hospital within the hour.  If we got an offer like this, we would take it.  A) they will only accept a liver if it is as good as mine would be and B) it allows me the chance to be her backup if she immediately goes into rejection mode in the operating room.

Our second scenario (and my first because I think there are longer term benefits) is to do living donation.  Cincinnati Children’s Hospital hasn’t done living donation since 2012.  The reason being – typically kids that are on “the list” get an organ in a reasonable amount of time.  We bypassed some of the typical rules (shocking) and did our testing early so we could schedule everything before Bea gets sick.  

Now that I have been “matched”, we are waiting to hear about picking an exact date.  I am finding that it is extremely tough to nail down a date that includes 4+ of the top liver transplant surgeons in the country, 2 operating rooms side by side, 2 anesthesiologists, etc etc etc.  The doctor’s schedules are packed in July so we are hearing that it is going to be the first or second week in June.  Therefore, potentially next week.  

There are benefits of doing living donation over deceased donation.  #1 – the liver is fresh.  Like fresh, fresh.  When you do deceased donation with liver they have to travel with it and the longer it is outside the body the more likely there will be complications.  With living donation, they literally take out 15% of mine and walk it over to Bea.  #2 – We don’t have to wait long.  Right now, she is in great condition for this surgery.  Normally kids that wait for organs on “the list’ get really sick while they wait.  We have the luxury of not having to get Bea to that point.  #3 – there is one study that said a kid with a maternal donor has a better chance of doing well long term.  That was all I needed to hear.

SO.  Right now, we are just waiting.  Waiting for a call or waiting for a date.  Either way, we are making sure to have a lot of fun in the meantime.  We truly feel like we are going to put it all out there and if God’s plan is for me to be the living donor, we will receive it.  If his plan is for someone else to be the donor, we will receive that too.  Either way, we are in a good spot.  Stay tuned for updates on our adventure.

[Bea & her buddy, Jack after his baptism….]

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[Before our walk to Arthur’s for dinner…]

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[One of Bea’s friends turned 1 and it was an adorable Peter Rabbit theme….]

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[Since Jordan, Bea, and I can’t go on family vacation this year my parents rallied the troops and we all went for one night to Housten Woods.  Just hung out, hiked, hung by the pool, and had a lot of laughs 🙂 ] 

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[And on the way home we stopped at Miami University to take a pic in front of my junior/senior year house 🙂 ] 

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#BEAstrong

XO

Hillary

prayer & fight song

One of the most powerful questions I’ve recently been asked is “what should I be praying for?”.  This question alone reminds me that people aren’t just praying for Bea but want to know specifically what to ask God for.  To answer this question…please pray for the following….

1)  Bea’s continued health & weight gain. We’ve been lucky to put off the feeding tube this long and want to continue beating the odds.

2)  Bea’s surgeons & other medical support (clinical doctors, pediatrician, nurses, cardiologists, dietitians, anesthesiologists, etc etc).  Please give them strength and health to continue helping but to help other babies in the meantime.

3)  Other kids on this list.  Although we are going to constantly be jockey-ing for position the bottom line is  – the sicker the kid the higher up on the list.  Please pray for these children that while their health deteriorates, they are quick to bounce back.  

4)  My family.  Although this is an extremly trying time for Jordan & I, I also acknowledge Bea is not only our daughter…but she is a granddaughter,  great granddaughter, and niece.  Give everyone peace of mind that Bea is in the best care possible.

5)  For Jordan.  May he continue being the rock for our family and the comic relief when needed.  Although the future could affect our (Bea and me) physical health the most – I would argue Jordan will deal with more mental and emotional stress as both of his girls enter the operating room for 8+ hours.

Thank you all for your kindness and continued love and support.  Once our bootcamp is finished this week I will give a full update.  Day one was very informative and we are continuing to move in the right direction.

In the meantime, download the below song and think of Bea when you hear it.  This song brings me to tears every time I listen to it.  I just can’t wait until we are through this and I can tell her how strong of a person she is.  And the best part is….she truly has a lot of fight left in her.  

This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll #BEAstrong
I’ll play my fight song
And I don’t really care if nobody else believes
Cause I’ve still got a lot of fight left in me
Now I’ve still got a lot of fight left in me

#BEASTRONG

xo

Hillary