A Direct Ticket to Heaven

Or maybe she said an express ticket.  Regardless of the wording a dear family friend…. I mean maybe my aunt…no that’s not it… aunt in law… aunt by marriage.  With big Irish families it’s sometimes hard to know who is who.  Regardless, she is a lovely lady who has know me since I was a babe  playing in the very same back yard that my two babes played in this afternoon.

She has watched me as I have navigated through this journey into motherhood.  As I said she is twice removed so not in on the everyday life and sees us only a handful of times a year.  Of course she always asks how Katy is and tells me how great she looks…(even though personally I think Miss Katy is looking a little pale, and I wonder if something is brewing, but then again when am I not wondering that)  She tells me how Patrick is my mini me.  We chat we talk small talk.
Today though, she took it a step past our usually chit chat and told me that she was amazed by my strength and my ability to smile and enjoy everything in spite of all that I am up against. Her comment took me by surprise.  I do have an interesting and complex situation and I do my best to face it gracefully.   The reason it surprised me is what little I really know about this pseudo aunt I know that she has faced her share of heart ache.  Lost her husband has physical limitations things that  I think I could never handle.  Yet, she always has a smile and kind words for me.   She went as far to tell me that I had a fast pass to heaven. 
Why do I have a fast pass to heaven?! Is it for loving this sweet blue eyed Irish Princess?

Because loving her is easy… it’s the fear of not having her here to love that is unbearable at times.  That is the reason that I find it hard to get out of bed some mornings. or fall asleep some nights, or find myself with tears streaming down my face as I braid her hair.
I don’t know what the reason is or if there is such a thing as a fast pass… but I do know that I am doing a good enough job keeping it together the best I can to give these two miracles the best life I can.

She also told me to thank god for Mike… she gets what a wonderful and awesome man he is.  Not only as their daddy, but as my husband.  She recognizes that he may very well be the glue that is keeping us together.

I think he is the one getting the fast pass to heaven and hopefully I  will be able to slide in on his coat tails.

The love he has for the three of us is immeasurable and the strength he gives me daily is noticeable to those around us.
Look who finally let us get him a hair cut…




Peace Out

October Admission Day 2 10-27-2011

written at 11:30 pm
We had a pretty relaxing day…lots of coloring, movies and playing Hi Ho Cherry Ho.  Around 5 pm we learned that the culture came back negative no Respiratory Infection.  Good News?!  I don’t know.  Since that means without a doubt all the fluid and pulling, and rapid breathing and tiredness are due to Katy’s heart failure. 
The plan is to continue with IV Lasix (diuretic) We are on strict fluid intake. (what goes in…must come out) As of right now the plan in to continue on this course of treatment and see if we can get the fluid off without the use of Milrinone. 
Papa, Nana Tracy and Patrick came up to visit and brought lots of goodies for Miss Kate.
Patrick and Daddy headed home… saying goodbye was hard. 
Thank you again for all your prayers and kind words and to Deb who has started the $1 Campaign on our family’s behalf.  You can read more about that here: $1 One Single Dollar

Once Upon A Time…
That’s how a fairy tale starts. Once upon a time a girl met a boy and fell in love, once upon a time a young man came to the big city with a dream, once upon a time…and the story ends happily ever after. Today isn’t happily ever after. It’s the beginning, yet again, of Once Upon A Time.
Katy was admitted today to Children's Hospital. She is in Congestive Heart Failure and needs a heart transplant. Katy is 4 years old.
If you haven’t had a chance to read Katy’s mom’s blog post today, read it here: http://murphy216.blogspot.com/2011/10/katy-girl-update.html
http://murphy216.blogspot.com/2011/10/october-2011-admission-day-1-10-26-2011.html
Excerpt: Katy’s chest x-ray showed that she has some fluid in her lungs i.e. she is in Congestive Heart Failure. Basically this was completely unexpected…but at the same time completely expected.
I saw Aimee last week. Katy’s mom. And she’s amazing. Brave. Strong. Fragile. Fighting. Human.
On facebook, on the news, we read stories that touch us, we care. They stay with us, then life moves along. With Amiee the story is everyday. Its not just about Katy’s heart, but also a story about Mike, Patrick, their family dynamic and what a toll any illness takes on a family. I thought I knew some of what they were going through then, mid conversation, Aimee shocked me.
“I wish I could buy a cup of coffee”
I started then looked left and right to gesture for the waitress. “I’m sure they still have coffee” I said, still looking around. Amiee made a noise and I looked at her. She was staring at the table... I saw a huge tear. “I don’t mean now” she whispered. “I mean, I wish I could, you know, BUY a cup of coffee.”
And I still didn’t get it.
Finally Amiee looked me in the face.
And embarrassed yet honest she told me their situation. Ending with “And I don’t know what I can get for it, but if I can get up the courage to sell it, we are going to.” Twisting her wedding ring on her finger.
“Deb” she said “We are barely paying the bills. Between rent, utilities, parking, gas, car repairs, I don’t think we can do it this month. Basically, we’ve been using the fund to get Katy to the hospital, for the parking, for gas, for one of our meals there. She needs new pajamas with snaps for the IV cords, Patrick is growing. I can’t work because I need to be with her, Mike is taking care of the house, of Patrick. He can’t work consistently. We are waitlisted for housing aid and we are just about at the end of everything. And now Katy is going in. And I don’t know how we are going to make it.”
And I had nothing to say to her. I had no words to comfort her, no ideas. Because honestly, I can't imagine for a minute what she is going through.
In my professional life I’ve planned huge events. In my personal life, I’ve rallied. I’ve pep talked. I have motivation galore. “Write to Ellen!” “Start a campaign” but I am stumped. Because frankly it's too big for me. I dont have a job to give, I dont have the means to provide child care, the resources to drive a meal into Boston. I have 3 small children of my own and a husband constantly working.
BUT! I have a dollar.
And a stamp.
And an idea.
I thought “If I could start a facebook viral request.... If everyone everywhere could send just a $1. If everyone only knew that this tiny four year old is in Congestive Heart Failure and her parents have hit bottom, wouldn’t they help?”
Would it work?
Could it work?
$1?
From every friend of every friend?
I’m not asking anyone to donate more. I'm not asking anyone to give give give. But yes, I'm flat out asking for money. Because it's the only thing I know they can use, and it's the only thing today that I can ask for that I think could be given. And its the only thing that Amiee doesn't have the courage to do on her own. If she can face Katy's doctors, I can face all of you.
$1.
If you can, if you would,please post to your facebook or share where possible my request.
Please send one single dollar to:
Be A Rock For Katy
The Savings Bank
357 Main Street
Wakefield, MA 01880
Thank you.
(and if you can't, your prayers are far more valuable. Please don't let this request turn you away from this support page)
INSTRUCTIONS BY PAYPAL | Existing Account Holders
You will need a Paypal account
Go to: www.Paypal.com
Log In with your username & password
Select tab: Send Money
Into the text field To(Email or Mobile Phone), type in: bearock4katy@gmail.com
Into the text field Amount type in: the dollar amount of your gift.
Ignore the drop down text field: USD - U.S. Dollars.
Underneath the text boxes Amount and USD - U.S. Dollars you will see two tabs, Purchase and Personal. Select: Personal
You will see the words: This money is being sent as a: with (5) choices.
Select: GIFT
Then hit: Continue
You will be directed to a Review your payment and send page.
BUT WAIT!!! (optional)
BEFORE you hit "Send Money" scroll down to the section that says: Email to recipient
In the Subject Line, please overwrite the prefilled You've got Money text and enter the words: Katy Rocks
In the Message field, please write in any message you'd like the family to know and Your First and Last name (Email optional)

Katy Girl Update

Yesterday was a big day for Katy.  She had a Cardiac Cath.  The first one she has had since last year, when the results landed her on the transplant list.

Yesterdays cath brought GREAT news…

NO new damage to her heart or lungs!!! 

I was eerily calm heading into this surgery.  I usually (as you know if you have read any of this blog) a hot mess leading up to Katy’s appointments.  For whatever reason I wasn’t this time. I think I just knew that there was nothing that could be worse than last year! 

It was a long day (15 hours) but we avoided an admission!! Which is always a good day in my book.

Kate was supposed to be first case, but was bumped for a very sick baby from the CICU.  It’s hard to get upset about being bumped when you know the circumstances.  We are just thankful that Kate is well enough to be bumped.

She was handling the delay OK (considering she was probably starving) 

They finally took her back around 11:30 after giving her some loopy juice, Mike walked her back to the Cath Lab.  Once she was settled . Mike and I grabbed a bite to eat and went back to see her at  around 2pm.  Katy was very agitated and was having a difficult time coming out of the anesthesia.   Which was difficult since she needed to lay flat for 5 HOURS.  As a result of her being upset she kept lifting and thrashing her leg, and complaining that her incision was hurting (my boo-boo is hurting) she had disturbed the clot and was bleeding.  I came back from the bathroom as the nurse was calling for the fellow and for anesthesia.  There was a lot of blood (probably looked like more than it really was) They gave her more meds to relax her and they were able to stop the bleeding by applying pressure for about 30 minutes.  After that episode, amazingly Katy was able to lay flat and watch Disney movies for 5 HOURS.  I still can’t believe it.

She then needed to have a chest x ray and then we were released at 9:15pm.

It’s hard to believe that we are quickly approaching the 1 year mark since being listed. 

Thanks for your continued prayers and support.

 

Prayers for Sweet Sweet Harrison.

The CHD world was rocked to it’s core today, as the news spread that yet another little heart warrior had earned his wings, a too young of an age.

I imagine that he is happy and his heart is healed as he plays at the playground in the sky.

I worry for his parents. I pray that they have a strong support system to help them pick up the pieces and carry on. Harrison, is not here… but he is and always will be in their hearts.

I am sad today so very sad… at times the tears have come down so hard. I am grieving a little boy who until his passing I had never even heard of. I’m mad about that… I wish I “knew” him while he was a live. I wish I had followed his mom’s care page and prayed for him, as I do all our heart “friends”

I know that there are lots of different outcomes as we write our heart stories. I usually can find comfort from the babes that a triumphant and rejoice with their families, and it gives me the strength to face another day.

Then a story like sweet Harrison’s comes a long and shakes me to my core. I let my mind go to that place that is always there and that I keep buried with memories of chalk and ice cream. Praying with all my might that my girls story ends with a Happily Ever After. Because that is what I need and want so desperately for my sweet baby girl. I want exactly what I know Harrison’s mama wanted for her beautiful little boy…and I am ANGRY that she didn’t get that.

All kids are special! All kids are a miracle…. but there is something about these heart babes… they have a twinkle in their eyes and smile that will melt your very own heart. They don’t give up.,.. they fight for each and everyday they have here on earth.

I was so oblivious to this before I had Kate. I am angry that I was so oblivious….and I am angry that I no longer have that ability.

Please as you say your prayers tonight say an extra for Harrison and his family.

243 Days

243 days since Katy was listed for a new heart.

243 days of worry.

243 days of uncertainty.

243 days of praying.

243 days of smiles.

243 days of tears.

243 days of jumping EVERYTIME the phone rings.

243 days of questioning if this is really needed.

243 days of accepting that this needs to happen.

243 days of learning to love our new normal.

243 days of Why us?

243 days to learn our new normal?

243 days embracing the journey.

243 days of milestones passed .

243 days of accepting our reality.

243 days of planning for the unknown.

243 days of hoping for a miracle

243 days of hope

243 days of being thankful that we have been able to wait this long at home.

243 days of sadness

243 days of happiness

243 of anger

243 of laughter

243 days of loving our girl.

Katy was listed for a new heart 8 months ago. On June 29th it was decided that the best course of treatment for our sweet Kate and her special heart would be a new one. It was speculated that she would have her new heart within 4-6 months, although the average wait time for her age and status is 6-12 months. We thought were told she would have her new healthy heart by Christmas. We thought by this time, Katy and her new heart would be living the new chapter in our lives.

We never guessed she would be thriving and living life at home with her special heart.

I am so thankful for this borrowed time. Since this is the life and heart I know. For the most part I know what we are up against.

I am afraid of what a new heart means for Katy.

New fears… handing my baby girl over to the surgeons to crack her chest open, place her on bypass, hold her little heart(s) in his capable hands, pray that her new heart starts beating right when its supposed to, seeing my darling daughter on a ventilator,again (the picture of her on that at 3 weeks old still haunts my memory) praying she recovers fully, and without setbacks, caring for her chest wounds, new meds, and of course our biggest fear REJECTION!

I don’t know when her new heart will come. No one does. I pray it comes soon. I pray that Katy is able to continue to wait at home with us.

Blahhhh…

I know here comes Debby Downer… I am! I am just down… and the only thing worse than me being down is Mike being down… and he is. I mean who could blame him, he is here, right along side me… trying to get through the days…waiting and waiting and some more waiting. Watching subtle changes in his little girl, our little girl reminding us that her heart is getting weaker. For as much as Katy is the light of my life…she clearly hung the moon in Mike’s eyes. I have never before seen such an amazingly, wonderful relationship than the one that Mike and Katy share. From day one they have been smitten with each other and let me tell you how happy that makes my heart! I love that they each have the other wrapped around each others fingers.

So although, I could tell you all the ways our life could be worse… and I know it could. I am reminded of what a dear friend always says when I say that…she kindly tells me that I am right, it could be a lot worse, but it could be a heck of a lot better. I suppose she is right, but when I think that, I’m reminded that maybe some of our days are long and our nights are often sleepless, but most times are days are fun, and we are busy making happy memories, and our faith is restored when friends, family and sometimes perfect strangers do nice things for our family because we are going through a difficult time.

So in an effort to take back our life, and to STOP living ( if you can even call what we have been doing living) and take back control of our days, our lives, both as a family, as a couple and individually.

It is best for all of us, but I know its certainly not going to be easy.

The kids are signed up for story hours twice a week.

A Family membership to the Y was just so kindly and generously donated to our family. I plan on making good use of that member ship.

Mike and I had a date night on Saturday… I can’t tell you the last time we did that and it was ordered by Katy’s doctor.

So expect some more fun pictures and expect to see us getting back to the old ways… I know that in any moment our whole life can drastically change… but right now I am going back to the basics, remembering how to have fun and enjoy my family.

Thanks to all our new readers…welcome!! Glad to have you. I love hearing from you and love that prayers are being said for our family all over the world.

I’m Working On

( Blog Topic from Ali Edwards)

I’m working on organizing prints and ordering more prints in an effort to get scrapbooking and current on our family albums. Mike is helping with this process, and he so kindly pointed out to me, just how far behind I am. Which further validates my decision to do Katy & Patrick’s yearly albums digitally.

I’m working on making our house more like a home. We moved four mouths ago, and although the space is functional, it needs some reorganization and decorating. First room on the agenda is the kids bedroom, I want it to be a functional, fun & welcoming space.

I’m working on a new knitting project, after my crochet fiasco ( I just can’t get the hang of it) I casted on a cute knit sundress for Kate. It’s a bit out of my comfort zone, but definitely something I can handle.

I’m working on fundraising for the NSTAR walk for Children’s Hospital Boston! I am so very proud of everyone that has joined our team and is raising money for the hospital that has and continues to save my daughter’s life. I can’t wait to walk with all of you on June 12th.

I’m working on typing all of our favorite recipes. I HATE the mix matched recipes, some printed, some handwritten, some stained, assorted sizes. Looking to have them all neat and orderly, and I may even print them and put them in a BINDER!!! Don’t hold me to it.

I’m working on trying not to think about the fact that Kate has been on the transplant list for 7 MONTHS. I am trying to not watch the calendar pass us by, and all the dates that I in my head and said she would have a new healthy heart by, and this part of our story would be behind us. I know in my heart that the perfect heart for Kate will come when it is most needed, and I’m working on making peace with that.

Stream of Consciousness

Yesterday I started back to my 10 hour school day! Oh, MY!

It’s a long day, but its nice to be with friends, and feeling knowledge flow in to my brain, discussing sometimes debating with others about beliefs and feelings on various subjects, sometimes hot button issues.  It’s nice to have a “safe” environment to defend your beliefs and opinions.  I know the kids have a great day with daddy.  Yesterday, I left them all a  love note, when I got home Katy asked me about the love list I left with red marker.  I love that she is old enough to get things like that.

We have been busy running errands and preparing for Patrick’s SECOND birthday! Yup, he is going to be 2! My goodness!   2 years have flown by.  He is very excited (as is Katy) for his monkey party!   Need to plan the menu and shop for that this week, and I still have favors and his banner to make.  More on that later

Katy’s G tube site is looking FANTASTIC… I hate to even write that for fear of jinxing us.

Mike and I  ( really just Mike, since I have not been feeling 100% for the past couple days) has been working hard on our house to simplify.  Which makes my heart happy and clears my mind.  It also, is a reminder that as long as we have a house full of babies… it’s never going to perfect, and you know what I am OK with that.  As long as the house is clean a little clutter won’t kill us… I am just trying to keep the clutter to  a minimum.  Basically, I want our home completely livable and comfortable for Patrick and whoever comes to care for him, when we get “THE CALL” which is why I think it has been so high on my to do list.

Speaking of “THE CALL” we are trying to prepare as best we can, I mean its nearly impossible to plan for something that you don’t know when its going to happen.  But, we have a semi plan in place and I am feeling comfortable with that.

Sorry I don’t have any new pictures to share… all has been kind of boring around here.  I should have some fun snow pictures by the end of the week! It sounds like we are getting hit hard!! Super excited for that, but it is making my birthday errand schedule a bit cramped. 

Reminders

Sometimes, we all need reminders, gentle nudges to help put this into perspective.  Kate is home and on oral antibiotics to take care of what is brewing around that damn tube.  I’m sorry but I never wanted that damn tube, and it has been nothing but a headache since she got it.  Maybe it will be useful one day and I will be singing its praises but for now it is the damn tube.  ( which unfortunately, is how Katy sometimes refers to it as well… there are worse things she could be saying, ask me how I know)

Anyway, back to reminders… last night @ 11pm when I was changing Katy’s late night diaper ( sometimes she requires late night diaper changes, especially on her double diuretic days, especially on those nights I sneak her out of her bed to cuddle, or in this case see the little gift nana picked up for her while we were out shopping you know, the $2 princess compact that she just had to have and threw her very 1st (shopping with daddy) tantrum over.  Daddy held firm and didn’t give in.  So my mom and I went on search to find it at Target…just to see Katy’s sweet smile and hear her say “It’s just the one I wanted” . 

Remind me again where I was going with this… oh yes, so back to the diaper change that soaked through her onesie…which prompted complete pajama changing which gave me a good look at her g tube and I saw the dreaded drainage and redness,and Katy in her most convincing voice telling me “ Mama, my tube, I mean my button looks, good” Which she always says in hopes of me not further investigating or heaven forbid cleaning it.  And, I said Oh, Kate…and called for Mike with tears in my eyes, knowing what I was seeing and knowing that it most definitely meant a trip in to Children’s 1st thing in the morning, you know the morning when we were supposed to bake cookies, and make a last minute trip to Target for more Stocking stuffers, because you can never have enough Stocking Stuffers.

All I could do was hope and pray… that we caught it quick enough that oral antibiotics would be all our girl needed and that they would not admit her.  The thought of another Christmas at Children’s was way more than this mommy ( or daddy) could handle. 

So I waited patiently by the phone for updates from Mike, I rallied our prayer warriors and hoped and prayed for the best.  I bartered with God, that if he let this be simple, and let us have this Christmas at home, I would get out of my funk, stop being a Grinch and embrace the holiday spirit and focus on how very lucky we are.  Even though the one thing I want so badly, will not be under my tree.

It worked.  Katy’s G tube is infected, but we did catch it early. We are back on antibiotics, and Mike and Katy are on their way home.  When they arrive we will go back to our scheduled program of baking, and last minute trips to Target. 

The next couple of days will be busy, I am sure!  But, the good kind of busy.  Visiting with family and friends,  wrapping the last of the gifts, making a gingerbread house, reading fun Christmas stories,  watching K & P’s excitement Christmas morning, making memories!

I doubt I’ll have time to blog before the big day.  So just in case… I want to wish you and your family a very Merry Christmas from me and my crew.

Katy is headed to Children’s

Please please please send any prayers and good thoughts our way. Katy's G tube site (feeding tube) looks infected (AGAIN) Mike just brought her in to Children's. Please pray that we caught it early enough and that she is not admitted 2 days before Christmas.

I am most certain none of us could survive that. Its been a long emotional week and I am coming undone.

Having a bad day!

Well today is one of those days…one of those bad, bad days! I have no desire to do anything.  Katy and her special heart is weighing heavy in my mind.

This time of year is especially difficult for me, due to Kathryn’s birth. Although, being the best day of my life, and it was.  It was also a very traumatic day for me.   This year it is especially difficult, because I fully expected Katy would have her new heart by now.   We are approaching our 5th month of being listed.  Many of the heart babies I know that have been transplanted all seemed to have their new heart by the third month. 

The average wait time is 6-12 months, that said Katy’s doctor expected it by Christmas as well, purely based on her experience, since there is NO WAY to predict when a heart will become available.

Although, Kathryn continues to be stable and her medicines keep her healthy.  I know she is getting sicker, I know she is no where close to gaining the amount of weight that she needs to be gaining.  I know our days are numbered.  It’s a horrible feeling.  What’s worse is I know Mike is feeling all these same feelings, which makes it even scarier, since he is usually the optimistic… she’ll be fine member of this team.

I also know that there is not a damn thing I can do about any of this. Which makes it 10x worse.

I also feel like as much as our friends and family try to relate, try to understand, that they really have no idea just how sick our little girl is, and how sad and painful and tiring our day to day life is.  I try to put a brave face on… but our life is very difficult.  I am sick of it.  I am sick of pretending we have everything under control… when in all reality I have never felt so out of control in my life.

No one is sleeping…even though I take enough sleep meds that should put a horse down.  Mike is balancing everything… there are many days I am just useless.  It makes me so ANGRY!!!!  I want to know what its like to just be normal… I hate that I will never ever know what normal is.

Kate Cardiac Update

It saddens me to say that Kathryn has been listed on the transplant list for over 4 months. Four long months of waiting and jumping each and every time the phone rings.

When she was first listed our doctor said it could take 6-12 months ( I mean its all an estimation) there is no way to know. But our doctor felt based on Kate and her personal experience that Kate would have a new heart by Christmas.

As we quickly approach Christmas, the thought of her perfect heart coming in time for Christmas seems highly unlikely.

I am also feeling like I am giving up hope. It seems that most babies/toddlers that we know that were waiting on a heart had theirs as soon as 3 months. 3 months has come and gone and here we still sit battling feeding tube infections, configuring meds, trying to increase her tube feeds since her appetite has decreased.

Again I find myself afraid of the transplant once again. I am afraid of the complications. I JUST DON”T WANT THIS LIFE FOR ME, MIKE, PATRICK and especially sweet, sweet Katy.

Kate’s G tube ( you know the one that I never wanted her to have) has been nothing but a huge source of infection. As you may remember Kate was in back in October for an infected G tube admission. Well we learned then that her tube was infected with MRSA. Which was a HUGE bummer but thankfully the rest of us have all been tested and we are MRSA free. Katy is currently on a very strong does of multiple antibiotics in an effort to decolonize the MRSA. Which is why we are having her Peg tube changed to a Mic Key button. After much discussion with GI, Infectious Disease and Transplant we have all decided that is the best option. Even though the peg tube has only been in 3 months and they prefer them to be in for 6 before they switch them over.

What should be a pretty normal sometimes office visit procedure has turned into yet another hospital stay for our little one. Since we are doing it early the fear is that it has not healed well inside so it seemed to be a safer option to have it placed in a more controlled surgical environment. Which means super strong meds to keep her heart functioning as it should. The super strong med that scares the crap out of the General Anesthesiologist was recommended by our Cardiac Anesthesiologist. Which you can only imagine how that makes me feel.

I hope and pray it’s a quick admission since I am so sick of spending a million dollars on parking and food at Au Bon Puke. I could surely use that many spent to buy K& P another Christmas gift that they so deserve.

Thankfully, my mom is coming here to stay with Patrick which is good, so his life is the least interrupted.

Please pray for our princess on Wed. As I know you do each and everyday. I will update as often as I can.

Thankful Day 11

On Day 11 I am was thankful for modern medicine for a multitude of reasons. As many of you know I struggled with infertility for nearly 7 years. I honestly believe that if it were not for IVF (In vitro fertilization) I would not be a mom.

30 years ago…which really isn’t that long ago you know? A baby with Kathryn’s heart condition would not live, if it even survived pregnancy and childbirth.

As you all know Katy is alive and living a very full, active life as a 2 year old I mean almost 3 YEAR OLD! The reason for that is the 6 medications she takes multiple times a day and her follow up care at one of if not the best Children’s Hospital in the world.

Thankfully we live in a part of the country with new medical technology and her heart defect ( I really dislike that word…trust me there is nothing defective about my little girl) was detected at 18 weeks…AMAZING! We received phenomenal prenatal care, and a team was in place to take the best possible care of our miracle.

So today, day 11 and EVERYDAY I am thankful for modern medicine.

Katy Made the News

Yesterday we were contacted by WBZ news, they were interested in sharing Katy’s story.

You can watch it here:

Katy's News Story

I know you still want Disney Pictures… I know. Today! Maybe… I am trying! Life is just OMG so crazy.

This week has been a WIRLWIND since we landed in Logan on Sunday.

Katy came down with a tummy bug on Sunday evening which landed us at Children’s for 8 hours on Monday.

Katy’s benefit is on Friday at

The Longmeadow Golf Club

165 Havilah St.

Lowell, MA

7 pm

Dinner, Dancing, Raffles, Cash Bar

We hope to see you there!

Make A Wish

WOW! Is all I can say….Make A Wish is an unbelievable organization. When we first learned of Katy’s special heart, it was brought to our attention that Kate would be eligible to have a wish granted.

Mike and I both agreed that although she may medically qualify, we would not be accepting a wish. Because at the time Katy was so healthy and we felt so blessed, that we didn’t want to take a wish from a more deserving child.

Obviously, a lot has changed since then. (Oh, how I wish we could go back to those days. I was so naive, I thought that we were so lucky…. little did I know. )

Anyway, since all that has changed and Katy has been through so very much. More than any child should have to endure, and more than most adults will ever go through. We decided that Katy deserved to be treated like the princess she is and asked Make A Wish to consider Katy’s wish to go to Disney.

Make A Wish contacted Katy’s team to confirm that she was well enough to travel, and then sent two volunteers out to meet us, and fill out all the paper work.

They arrived with gifts for both Katy and Patrick.

The volunteers were very impressed with Katy’s Disney knowledge.

So as long as Katy stays healthy and a heart doesn’t arrive before then, we along with Katy’s Fairy God Mother, Auntie Corinne will be leaving on a jet plane to Disney World in the fall. AMAZING! As Katy would say “We are going to Mickey’s House!!!! I am SOOOO EXCITED” In her cutest, most excited little voice.

Katy Update

Ok, I know I owe you an update of our break from reality…and it was a wonderful break, and I can’t wait to relive it with you when I blog it. ( CAN’T WAIT) But, the truth is its going to take me a few days to catch up, upload and edit all the pictures. I am half way through that job.

Anyway…we came back to reality with a clinic appointment first thing this morning…ugh. With both kids in tow, which never makes for an easy day. On top of that our cardiologist Dr. Blume was on vacation so we saw Dr. Singh (another transplant doctor) We discussed our concerns, Katy’s lack of appetite, lethargic and so on and it was decided that, yes it is time to have a G tube placed. Much to my dismay. It’s time. Mike and I have always said we would do what was best for Katy… on Katy’s time table and we both believe it is time.

This was a very difficult decision for me. I have shared in the past my concerns regarding Katy and the G tube. Somehow I was more comfortable with her having open heart surgery, transplant etc. etc. then having a damn feeding tube.

I think for me and for a lot of mom’s…our job is to nourish our child. We nourish our sweet babies, when they are growing inside of us, that is our first real responsibility when we learn we are with child. Then when our sweet baby is born we anxiously await for our milk to come in…giving our babies that 1st but most important colostrums or in my case with Katy…pumping it and drawing it into syringes, to be saved for her.

We then nurse our babies, anxiously awaiting to see there numbers on the scale… scrutinizing their dirty diapers. Sending your husband out to 4 different stores to get the Fenugreek to increase your milk supply ( and makes you smell like maple syrup)

You video them the first time you introduce them to sweet potatoes, you squeal in delight when they have a Ritz cracker. You cut each and every teeny tiny grape piece, in an effort to keep them from choking.

You introduce them to new foods, you watch them grow and thrive.

As hard as Mike and I have tried we can’t do all things we are supposed to, to get Katy to grow and thrive. We have done them and more, and its just not enough. It breaks my heart to say that.

So we are making the decision to do what is best for Katy…. and at this time that means another surgery and placement of the G tube so that Katy can grow and thrive and be as healthy as possible for when her sparkly new heart arrives.

So much to my dismay…Katy came home with another NG tube today while we wait for a surgery date.

Also, as you may know I have connected with a heart family Gabriella & her mom. Gabriella was given the gift of a new heart 3 months ago, and is doing great. Her mom has recently connected with her donor family. Amazing story on her blog.

Katy’s Story…from the beginning

June 16, 2010                                                                                                     Updated: August 2010

After 6 years of infertility, and several failed IVF cycles. Mike and I were finally pregnant. At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect.

The left side of her heart was only 1/4 of the size it should have been. She was diagnosed with Hypoplastic Left Heart Syndrome. At that point we were given the opportunity to terminate… but for us that was not an option. The alternative, we were told, was a series of heart surgeries to reconstruct her heart. The first surgery being immediately after birth.
Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth (and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.

The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her "echo" still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs. She was a Christmas Miracle in the Cardiac ICU. No one on the floor has ever seen a HLHS baby this healthy. After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!

At our two week cardiac checkup it was decided that more study was needed. Katy was admitted for a cardiac catheterization, and an MRI. After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.

Over the last two years Katy has continued to baffle the doctors, because she is doing so well. Her heart meds have kept her healthy. Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.
The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. We estimate she eats 1600 calories a day, and she only weighs 20 pounds. It became a concern when she stopped gaining weight 6 months ago.

As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT, decided that another Cardiac Catheterization and MRI was needed. The cath showed her pressures to be seven times the normal pressures. After doing well for so long, Katy’s care was turned over to the transplant team

As a result of her failure to thrive, a G tube was placed in August for feeds.  Although it was not a decision I was entirely on board with, it was better than the NG tube. Unfortunetly, even with the high amount of calories we are pushing on her she has not made any significant weight gain.

.Kate was listed as a status 1B on the UNOS Transplant List on July 29th 2010.

To meet Katy you would not believe that she’s a little girl waiting for a new heart. At this time, she is doing clinically well and acting like a happy and normal four year old.  She goes to preschool and dance class. She loves playing with her brother!!

She is our ROCK STAR!!!

Keys for Katy!

WOW! Is all I can say! I am overwhelmed with emotions and I tried to keep myself it check… but at times it was nearly impossible. The generosity and kindness of strangers has renewed my faith in humanity.

Jimmy and Kim Keys are two people we have never met…yet, they feel like dear longtime friends. They loved on my sweet babies and took time out of there VERY packed schedule to squeeze in a show to benefit Katy,and our family. People that they have never met… they read about her on our cousins facebook page. They worked together to organize a never before Jimmy Keys Kid show!

Jimmy, is such a fabulous entertainer and all around GREAT guy he had no trouble winging it. He along with his wife Lady Gaga Kim Keys kept about 90 kids and their parents laughing, the entire time.

The Shannon Door was our host and they had candy and homemade cupcakes and lemonade for everyone. Auntie Tess baked over 100 cupcakes for our little Rock Star!!

When Jimmy sang K K K Katy the tears started rolling down my face.

Mike and are so very thankful to both Jimmy and Kim Keys and the gang at The Shannon Door

If you are interested in catching one of Jimmy’s amazing shows… I promise you won’t be disappointed. You can find his tour schedule at http://www.jimmykeys.com/show-dates.php

The next time you head to North Conway for a weekend away, a visit to Storyland or some awesome skiing….make sure to stop in at The Shannon Door for THE BEST PIZZA http://www.shannondoor.com/

Now for the pictures….

It’s not you it’s me…

The past 2 months have been a whirlwind for Mike and I. Our life has FOREVER been changed. We can never go back, we can only go forward and by the looks of it…the road ahead of us is long and scary. We will get through it… we always do. Usually we are OK just doing it ourselves, but we are quickly realizing that this is bigger than us… so much bigger and we need help.

It’s proving to be IMPOSSIBLE for us to do it alone, between childcare, household chores, and the additional financial burden that hospital living is, we have had no choice but to tuck away our pride and just say THANK YOU!

For me that is VERY difficult I like to be the doer, the organizer the helper… I like to donate and babysit and make meals. I am getting better and the only thing that makes it easier is the thought and hopes of Paying It Forward when all of this is behind us, and we are in a better place. Until then we have no choice than to graciously accept any and all help.

We have had an outpouring of support from our friends and extended family. Meals, childcare, fundraisers, visits, LOVE, prayers, and more LOVE. It has been wonderful. It has been said before and is proving to be sadly true. That when something like what we are facing happens you find out who really loves you and who your friends are.

For me, its been a LOUD, rude awakening. I can’t believe that the people that SHOULD be supportive and helpful to us,and by should I mean the ones that if this situation was reversed I would be there is two seconds FLAT. I had thought about publically outing some of them, but have decided that I have more class than that….and they know who they are.

And really, what could I say… I am mad that you didn’t do what I thought you should do… ridiculous and I know that, and that is the reason why I delayed writing this post. I am hurt, disappointed and frustrated. But, its time for me to wrap it up and throw it out the window. Since I don’t have the time or the energy to waste on these people who can’t even call to check on our sweet Katy….or keep commitments they make to us.

So instead, I will focus that energy on thanking the people that are scooping us up and keep us together and helping get us over this horrific time in our life.

I can choose to be angry all the time… or I can choose to accept what it is and surround myself with people who love and care about us. It seems like a no brainer.

Its funny, though…. When you write a passive aggressive post as this one may be interpreted as. The people its meant for will assume I am talking about someone else and the people its so NOT about will think its about them.

Surreal

I really don’t know how else to describe what our life is like right now… although I suppose at times it feels more like a nightmare than a dream.

Katy is officially on the transplant list. She is currently listed as a 1B. As excited I am at the thought of a new (well new to us) healthy heart beating in my Katy girls chest… I am scared worried, sad, angry,hopeful and every other emotion that you can imagine I am feeling or I have felt.

I am scared because my sweet beautiful girl has a long road ahead of her.

I am worried, what if the perfect heart for Katy doesn’t come in time.

I am sad for all Katy and our entire family has to endure. I’m sad that we will live in fear of rejection for the rest of our lives.

I am angry…for so many reasons. Trying to be positive right this moment. So I will leave my anger post for another day.

I am hopeful, because our team at Children’s gives us a lot of hope that Kathryn will be very successful post transplant and will go on to live a full and happy life.

Right this moment, I am a bit anxious we are headed to Katy’s first benefit. Hosted by our Murphy/Mulkern family at The Shannon Door. The very talented Jimmy Keys volunteered his time, to do a very special kids show in honor of Katy. I am overwhelmed with their generosity and love, and know that there will be a lot of talk about our Rock Stars heart (obviously) and even though we have been living it for years now…sometimes my emotions become overwhelming.

Looking at today as a day to celebrate our little girl and her special heart!!!