Feel the Love...

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A Special Day with Lucy...

On Wednesday January 15th, 2014 we declared it "Sophie and Lucy Day"!

On Thursday January 16th, 2014 we declared it "Megan and Lucy Day"!

And on Friday January 17th we declared it "Jack and Lucy Day"!

They each have their own special and unique relationships with one another, especially with Lucy.  To see the four of them together is amazing, they were made for each other. 

For the Love of Lucy T-Shirts...

http://www.kellysteamstores.com/For-the-Love-of-Lucy

So many are asking how they can help us…

if only we could make happen what our hearts really want.  

Mitochondrial disaese, a progressive degenerative disease of energy metabolism in which the body does not convert food and oxygen into energy correctly has robbed our little girl's body of its ability to function and live life.   What we want more than anything is a cure for this God-awful disease!  Sadly, that is not going to happen in Lucy's lifetime, but maybe it will for somebody else's child.

Our friend,who happens to be a very talented a graphic designer, helped us to create a new "For the Love of Lucy" logo complete with Lucy's signature hair style.

For the next two weeks, until Sunday Feburary 2, you can place an online order here and order to your hearts content.  The shirts come in youth, mens, and woman's sizes as well as in your choice of white or gray.  Wear them with pride, knowing that you helped to make a difference in our lives by supporting us in a cause that is so near and dear to our hearts! 

Help support us in our cause, for the love of Lucy, help us find a cure for mitochondrial disease!

ALL proceeds from the sale will benefit The United Mitochondrial Disease Foundation.

Sleeping Beauty...

A bed only suitable for a princess!

Our amazing team of docs and nurses assembled a beautiful canopy over the top of a hospital bed so that our princess could have company lay next her as she sleeps.  She has only ever slept in a crib with a tent overhead while in the hospital, this is the first time that she is sleeping a bed.  A tent overhead was a must, after all we "camp" when we are in the hospital.

A real life sleeping beauty!

She's so beautiful!

 We are in awe of the love and support, thoughts and prayers being said for our family, our special kids, our beloved Lucy!  We are truly being surrounded in LOVE.

(Photos courtesy of "our family photographer". The temporary tattoos on her forehead and belly, courtesy of our beloved Andy:) 

Surround Her with Love...

In our family we play this game...if you could have a superhero power what would it be?

Mine, to be able to be in more than one place at a time.

On Monday, when we were discussing all of our options for Lucy's end of life care, I leaned over to Drew and whispered into his ear that I want to change my superhero power.  I want to be able to go back in time.

Lucy has a real life superhero power, she really does!

Do you want to know what it is?

She has the power to make you fall in love with her!

Our hope and prayer for Lucy in these final days, weeks…is that we'll surround her with love, wrap her in it, bathe her in it, saturate her with it!

So...I have an idea.  Not unlike any other admission in which our girl celebrated so many holidays in the hospital, we need to decorate her room.  It's time to take down the Christmas decorations, and bring on the LOVE!  For the love of Lucy send hearts, send cards, send love notes to Lucy, affirmations of love…help us surround her with love.

**It has been mentioned by many, what can they do for our other three loves?  Why, the same thing, share the love!  Let them know that they too are so very very loved and thought about!

The hospital address is:

Nemours A. I. DuPont Hospital for Children

℅ Lucy Marlett Room 3708

1600 Rockland Road
Wilmington, DE 19803  

For the Love of Lucy...

The hardest part of loving someone...  

is letting go.

Our goals for Lucy have always been to give her the best longest life…we did that, and now it's time to let her go. 

I can't believe that I am writing this post!  Mitochondrial disease has taken its toll on our little girl's body.  It is because we love Lucy with all of our hearts that we are incapable of letting her suffer.   Our focus remains as it always has, to keep Lucy comfortable.

Our hopes of taking Lucy home have changed, we are choosing to live out the reaming time that Lucy has here on this earth at our "home away from home".  We feel so supported and surrounded with love!     Words can not express how unbelievably grateful we are for the love and support, thoughts and prayers of so many of you.

Not unlike her life which defied all odds, we are expecting her end of life to be the same.  It will be a process of letting her go.

Stressful Day...

Let's be honest here, more like stressful year and it's only the second week of January!

We are all breathing a sigh of relief tonight, and by all I mean Lucy and everyone who is involved in Lucy's care.

Today we transitioned Lucy from the PCA pump of dilaudid to a much higher dose fentanyl patch.  We did this for a few reasons, the main reason being that we are really want to bring Lucy home, but with a level of care that is manageable.  Going home with a PCA pump comes with lots of stipulations.  Even though the fentanyl patch is providing her the same, if not more narcotic medication, it's a patch that gets absorbed into her skin and not an IV medication that is constantly infusing into her body interfering with her already complicated med schedule.  I like patch medications, they are much easier than IV meds.  You just stick it on and viola!

Our biggest fear with the transition to the patch, was the fear that Lucy would stop breathing.  This is a legitimate fear, Lucy went into respiratory failure on the higher dose patch last year.  We warded off evil spirits today by planning for the worst and hoping for the best.  Vapotherm was parked outside of Lucy's room as a precaution, no one was allowed to move it for fear it would be bad luck.  Our main doc hovered on the floor pretty much all day (this is not typical for those of you unfamiliar with the hospital environment), he and I watched her monitors as if we were waiting for the latest scores of a football game.

For the most part she appears to be doing well with the transition,  a big sigh of relief can be heard around the floor.  She is still requiring break through pain medications, but we were expecting that.  Lucy's level of pain appears to be the same, no better no worse than before.

I mentioned above that we really want to bring Lucy home, despite the fact that she is not well and her quality of life is very different than it was before we walked through these doors on December 16th.  Lucy is nearing the end of her life.  We want to spend what remaining time she has left at home as a family.  In an effort to do this, step one was the transition to the patch.  Steps two through one hundred are still yet to be determined.  I do know that one of the ninety-nine or so remaining steps we need to consider is how we can move Lucy and not cause her more pain.  This is proving to be a huge challenge.  Moving her in any way shape or form hurts her, it sets off episodes of pain that can take hours to get back under control.  Baby steps, today was the first of many.

Thank you for your unrelenting love and support, thoughts and prayers.  The past few days we have had a steady stream of visitors stop by to just be with us, I can't you tell how much that means to us.

Let the Sun Shine In...

At the moment, we could use a little sunshine in our life. 

We opened the blinds, and let the sun shine on her face. 

Isn't she lovely!

A Picture Says a Thousand Words...

Today, was the hardest day ever!

We discussed our options for Lucy's end of life with our palliative doctor and main doc.

No decisions were made, except that we decided to make no decisions right now.

We need more time.

Our hearts are breaking…hurting…torn.  Watching our children's hearts breaking...it's awful… indescribable.

You know the saying a picture says a thousand words, I need not say anymore…

January 4, 2001...

Jack was born on this day 13 years ago…13-years-ago!

This was the day I became a mama - one of the best days of my life!

Seeing your child for the first time, it's the definition of love at first sight.   I remember his birth like it was yesterday, really I do.  I find that amazing, considering I can't often remember what I did yesterday.  A nurse friend of mine told me that when she worked with elderly patients who had children, she would ask them to tell her about the day their children were born.  She said that they could recount with amazing detail the moments of their children's birth.  

I don't think I'm old enough to have a teenager, but Drew says he is.  Not sure if that's a complement, he and I are not quite a year apart in age.

Jack was the first to call us Mom and Dad, he made us parents.  This parenting gig, it's the best and the hardest!

Yesterday we had a difficult albeit amazing meeting with our  child life specialist Jen, Dr. R, and the kids about Lucy's current status…situation…life, ugh it's difficult to find the words to define it.  The kids had prepared a list of really good, scratch that, really really good questions to ask Dr. R.  He told us to tell them to ask him the really hard questions, so they did.  Our reality, we have known all of Lucy's life that her time here on this earth was going to be shorter than most.  In spite of this, telling the kids that she is most likely going to die sooner rather than later…I don't have the words to describe it.

Today we are going to celebrate life, and the next day, and the next, and the day after that…

Happy 13th Birthday Jack, you are amazing!  

We are so honored to call you our son.

Reality...

It hit us hard today!

Drew and I met with our beloved doc this afternoon to discuss our reality, Lucy's reality.  There is nothing more that we can do for our girl medically, to fix what is causing her pain.  Comfort care is really the only option left remaining.

I won't go into any more detail tonight, my head is spinning with too many thoughts and my eyes are really red and swollen from crying.

I will say this...we love so much, which is why we are hurting so much.

To all of the amazing people in our life who love and support us through the good times and the bad, thanks, we could never do this alone!

 Sleeping Beauty's preferred position for sleeping, sideways in her crib with her legs propped up and hanging over the side rail.  She has figured out how to alleviate the pressure on her bladder.  We realize that this looks dangerous, but she is unable to move on her own so she's safe…it's comfort care.

January First...

I'm boycotting New Year's Day.  New year, new me…it's not all it's cracked up to be.  I'm  happy with status quo, or same ol' same ol', or even better freezing time.

I'm not in a good place to be making any predictions about the new year.  Now is not a good time to be doing that.

Because it was a holiday today, Drew had the day off.  He and I switched places for the afternoon so that I could take some time to be with the other three loves of our life, and he and Luc could hang out together for the afternoon.  They slept, and we went to the movies and then out for an early dinner, Chinese food.

We saw Frozen.  We liked it.  The moral of the story was so good.  Nobody told me to bring a box of tissues with me.  Consider yourself warned!

Tomorrow our main doc is coming back from vacation, he took a much deserved week off.  Really I mean that, even though his timing for vacation was impeccable.  He would argue that it's Lucy's timing, she has an uncanny knack for needing him when he is away.  She didn't want him to forget her while on vacation, so she thought she would stay here and welcome him back tomorrow.

Nobody "rocked the boat" while our main doc was away.  That phrase gets used a lot by almost all of the docs who come to see Lucy when our beloved Dr. R is away.  It's used so much, I can barely keep a straight face when someone says it to us anymore.

I'm sure we will have a lot to talk about in the morning.  If I'm being completely honest, I'm a little afraid to hear what he has to say.  Denial, I want to stay in it for a while longer.  He has a way of bringing me out of it.

Your thoughts and prayers, love and support are much appreciated.

By the way…this fortune was in my fortune cookie tonight.

It's New Years Eve...

But then again you probably knew that.

Me, I woke up, more like was woken up by the urology resident, at 6:29 this morning and had this realization.  

We are going to meet our health insurance deductible, and most likely our co-insurance limit, on the first of the year.  How many of you can claim that?

I'm going to ring in the New Year with my favorite little red head…although her hair is not looking so red these days.  She's in need of a bath, that always seems to bring out the red in her hair.

Drew and the kids are tired, there have been a lot of late nights and early mornings over that past few weeks.  Instead of starting the new year off exhausted, they left the hospital before nine so that they can wake rested and ready to start the new year.

Tomorrow night Drew and I are planning on spending some time together, we really haven't seen that much of each other, I miss him.  We are going to rewind the clock and celebrate the new year tomorrow…because we can ;).

Things with Lucy are about the same today, we are trying to space out some of her PRN(per requested need) meds in an effort to assess her pain level.  She has been sleeping so much it's difficult to know how she is feeling.  When she wakes and has pain we aren't sure if it's because we got behind on pain control or if her pain is increasing…ugh.  If I had to guess I don't think she is hurting more, I just think she is hurting the same; therefore, any decrease in her pain meds makes it seem like she is hurting more.    We are taking Lucy's lead on things, standing by her side hoping and praying for her body to heal and her pain to diminish.

There was a code blue called on the floor tonight.  Minutes before I was just coming back from dinner, I am so thankful that I was back in Lucy's room when the code was called.  The kids and Drew were just coming back on the floor when things were happening, the look on Megan's face I'll never forget.  We all said a prayer for the child and also a prayer of gratitude.

I'm not one to make public declarations, I would just be setting myself up for failure and who needs that.  What I am going to continue to strive to do this year is create as many memories as we can with our little family.  Time is precious, be grateful, and live life.