Selfish

Recently, I was reading a blog post from another heart mom.  Another mom whose story was very much like mine, yet ended very very differently. 

Our journeys shared a remarkable amount of similarities. The biggest difference?  Her beautiful sweet baby girl passed away before the perfect heart became available.  She passed away the day before we got the call that would save Katy’s life. ( I didn’t learn of her passing until days later)

Needless, to say I struggled with the WHY? 

Although our girls prognosis was the same, they were living a very different life.  Katy home thriving on Milrione and living a pretty “normal” life. 

The other heart warrior princess living in a hospital… fighting one thing after another.  On the list…off the list. As much as we struggled with the emotional rollercoaster of waiting for a heart, and living in fear of losing our child. I cannot begin to imagine what it was like to be living in that environment. 

It wasn’t until I looked at Christmas pictures of that beautiful little girl… opening all her gifts… many of the same gifts our Katy girl opened that same morning, that it hit me.  We may have the same prognosis, but please god please, that sweet heart warrior princess needs a heart and she needs a heart NOW.

That was a long intro to the purpose of this post.

The reason for this post is that her blog post made me question our decision.  We decided during our 18 week ultrasound when we learned of Katy’s special heart that we would do whatever we could to make her better.  We believed with all our hearts, that our little girl was meant to be.  ( After years of infertility and 4 miscarriages, when you have a viable pregnancy… you know they are meant to be) I was mortified with the option of termination… I sometimes see that doctor and I want to say “Hey, look at this ROCKSTAR!! Do you still think we should have terminated!” But, I digress.

You see while reading that other mom’s recent blog post… she talked about how her child was now at peace and whole in heaven and no longer suffering.  She wrote how her daughter would not have to face a life of pokes, and procedures and medication, and fear of rejection, because we know transplant is not a cure. She wrote that she regretted not choosing compassionate care earlier.

Which leaves me wondering did we do the right thing?, Is this the best life for Katy?  Was this a selfish decision, because we could not bear to live a life without her?

As many of you know Katy is struggling with keeping normal levels of her antirejection meds. They keep sky rocketing for no reason and when that happens Katy has bouts with nausea, vomiting and diarrhea. All of this means more blood draws and more doctors appointments.  Katy’s quality of life is actually worse right now then it was pre transplant.  Now I know that once we get this figured out (this time) she will be out playing SOCCER next week… until it happens again.

Obviously we had to make this decision for Katy, and I fear that when she is old enough to fully understand she may not agree with our decision. Will she resent us and our lifelong decision?

I don’t know the answers to those questions and only time will tell.

2 Months

Two months ago not only Katy, but our entire family was given a new lease on life. In some ways not much has changed, Katy still has an overwhelming amount of doctors appointments.  We actually go more often post transplant then we did pre transplant if you can believe that.  Her medicine schedule has become more rigorous, and time sensitive.

What has changed… we are happy!

Although our day to day life and struggles may look the same for the next year.  We see light at the end of the tunnel… light we haven’t seen in years.  We know that we have many more days and years filled of watching these two grow up together.

           I imagine their days of sharing a tubby will be coming to an end soon… for now we will soak up the bubbles, splashes and giggles. 

Katy’s energy is high and she is thrilled to be running with out a backpack 24/7.  Excited for many more years of hunting for eggs at Nana & Papa’s.

Oh, and with this new heart, came new energy and came a bit of sass… yeah, lets call it sass. It’s the terrible twos with the ability to articulate her frustrations. 

Mike and I are also learning to change our way of parenting.  Because parenting a healthy child is much different than parenting a child with a terminal illness.  All parents pick their battles but when you are afraid your child may die tomorrow you tend not to set many limits for them.  Of course we parented Patrick in a similar manner, for a completely different reason.  We tended to try and get him extra goodies, or stop at his favorite muffin shop out of guilt.  Because when you have 2 or more children and one  has a terminal illness… it takes Mommy (daddy) guilt to a whole new level. 

So yes we have some work to do on the behavior end of life.  I turned to my teaching stash and Pinterest.

         

It has been a great tool… Great visual reminder, teaching them to work towards something they want to do/get when in the past we may have just done it to do it.

Slowly, but surely we are finding our normal… we have days when our living room/ play room looks like this: how can they do this to a room in less than an hour?!  I am so thankful that we are home with two healthy children capable of making messes, talking back, and yelling at each other in ways only a brother and sister can.

April is National Donate Life Awareness Month. Please consider becoming a donor.

 “The only thing you take with you when you are gone is what you leave behind.” – John Allston.

 Donate Life

A Guest Post- A Daddy’s Point A View

This blog is my voice.  I may sometimes express Mike’s feelings or my interpretation of his feelings.  But, this is his first time posting on the blog.  I asked Mike if he might like to reflect on what this journey has been like for him.  As many of you know Mike and Katy share an incredible bond.

I think often times Dads are forgotten when a family is dealing with a medical crisis.  Everyone is concerned for the child, and  the mom and often the dad is expected to be the strong one and keep the family together.  All the while living in the same fear as the mom, but more likely has no outlet. 

To say that Mike was the wind beneath my wings is a major understatement.  He kept a balance… he let me cry when I needed to cry… he told me to suck it up when I needed to be told to suck it up… He let me sleep the day away and made excuses for me when I couldn’t get myself out of bed, and pulled the shades and sometimes literally dragged me out of bed. All the time protecting me… protecting me from my negative thoughts, protecting me from negative people, and sometimes protecting me from everyday life.  He kept our day to day life going when I couldn’t.  Our love only grew stronger and I am thankful each and every day for the amazing husband and best friend he is to me, and the sweetest, kindest, caring, and fun loving daddy he is to Katy & Patrick.  We are blessed. 

The following was written by Mike:

People that know me well know that I believe in the life philosophy that “It is what it is”. Since we can’t always control what life throws at us we just have to accept what we are given and make the best of it. That gets very hard to do when you are faced with the possibility of losing your child. For the last five and a half years Amiee and I have been dealing with that possibility each and every day. When faced with a problem I like to educate myself and develop a plan. After our eighteen week prenatal ultrasound Katy was diagnosed with HLHS and the journey was started. We researched and developed a plan. Under the care of Dr. Marx at Boston Children’s Hospital and Dr. Wilson, her pediatrician, we prepared for Katy’s birth and the three open heart surgeries that would repair her problem. We chose the best surgeon for the job, Dr. Del Nido, and waited for her arrival. When she did arrive we learned a valuable lesson Kate is special. She doesn’t follow other people’s plans. Even though the left side of her heart was only half the size it should be she was somehow still able to supply blood throughout her body. She was pink. With no surgeries planned and a lot of uncertainty we took our little girl home. Dr. Marx said we would watch her “funky heart” and see what happened. That’s what we did for a couple of years until everyone started to get concerned about her inability to gain weight. After a cardiac catheterization the concern increased dramatically when it was discovered that her pressures were 7 times higher than normal. Katy’s care was then turned over to the cardiac transplant team. Her diagnosis was changed to restrictive cardiomyopathy. After more research we realized that there was no cure and the only viable option was a heart transplant. In July 2010 Katy was listed on the heart transplant list and the wait began.

There was nothing in my life experience that could have prepared me for this wait. It was unlike anything else I’d ever experienced. It affected every aspect of our life. Worst of all there was no way for me to plan for it. All we could do was wait. We waited for “The Call” 24 hours a day. Every time the phone rang it might be “The Call” especially late night. We were obsessed with having our phones with us and charged at all times so that we wouldn’t miss “The Call”. Everything was planned with “The Call” in mind. There was also considerable tension watching our little girl’s health deteriorating very slowly. We spent our time watching for the subtle signs of her worsening cardiomyopathy and trying to keep her in the delicate balance that kept her out of the hospital. While we waited for “The Call” knowing that a stroke or cardiac arrest at any time was a possibility we tried to live life. Quality of life has always been very important to us. Life is meant to be lived. During the wait we tried to be as normal as we could and enjoy doing as much as we could. We enjoyed many things but sometimes the waiting got to me. There were days when I just couldn’t seem to accomplish anything. Despair and depression hit at odd times often surprising me. It might be the sudden appearance of tears rolling down my face while I was doing dishes, tightness in my chest while driving that made me pull over, or a nightmare that woke me from my sleep and left me shaking in bed. “The Call” had to come soon. We were running out of time.

The thing that got us through this tough time was the love, support and prayers of the people around us. It would be impossible for me to name everyone without missing someone. You know who you are. You know if you were there for us. We know and we appreciated each and everything that was done for us and our Rock star. The amount of help we received from family, friends, relatives, acquaintances, online friends, and even strangers was incredible. I don’t know how we would have made it through the long wait without all your support. Thank you everyone. And to the donor family we give our sincerest condolences and deepest gratitude for saving our little girl’s life. She rocked her transplant and she continues to rock her recovery. She is our Rock star. She is our Katy.

Back on 8 South CICU

(This post contains photos of Katy while she was intubated)

I was excited, and scared to see Katy.  As surprising as it is Katy has never had open heart surgery.  She was never a candidate.  So although I knew what to expect ( I have seen many other children post op) and I have seen Katy intubated, I was worried about seeing her chest open. I was afraid to see my baby girl in pain. 

Thankfully, I prepared myself for the worst and she looked so much better than I imagined.  Because, this heart was so very perfect for her the surgeon was able to close her chest and she looked so comfortable and peaceful.

The plan is for Katy to stay on full support for the first 36-48 hours  Thankfully, the pressures in her lungs are much lower than we were expecting, and her lungs seem to be adjusting to her new heart.  The team is being very cautious, and the next 48 hours are crucial.

Back to waiting…

We made our way back and met up with the family. We headed to the surgical waiting room at 630 AM we were the first ones there so we set up our “space” TV, comfy chairs, lots of plugs for the many electronics.

We nervously chatted.  I was once again reminded of the differences of men and women.  My dad sat outside of our “area” to read…Mike stuck his nose in his computer and Tracy, Krissy & I chatted.   Eventually we settled in too our own electronics.  I logged on to Facebook and was surprised to see that Mike who is not one to post on Facebook had been giving the play by play on Katy’s day.  So sweet.   The amazing support from our friends and family across the globe was so encouraging. 

The nurses and doctors were amazing about coming up to talk to us,every step of the way.  Thankfully they always had reassuring words for us.  Katy was doing great.

At one point I laid down and put a blanket over my head… in hopes of sleeping to pass the time.  Or maybe just to “hide” for a little bit. 

At 9: 15 the nurse liaison came to tell us that the new heart was in and that it could take up to 45 minutes for them to warm up Katy and get the heart beating. Another 45 minutes?  You would think that after years of waiting this would be easy… but it wasn’t. Finally I said “ I am going to go to the bathroom and that is a surefire way to get more info” Sure enough I went to the bathroom and Dr. Blume was out in her scrubs to tell us that the heart was in and beating and all was wonderful.

My dad was the closest to me and we hugged and we cried and we both just felt pure joy and happiness.  Mike was across the room (my guess updating FB) and Krissie and Tracy had went in search of a bathroom.

Now we just have to wait to see our girl! The surgeon Dr.Fynn Thompson has assured us that everything has gone fantastic.  It could not have been a better heart or surgery!  So Blessed.

1 Month

A month ago today our lives were forever changed.  Katy’s recovery has been incredible. Dr. Blume  told us  that kids waiting for transplants fall on a scale between those that may not survive the surgery to those that will thrive and go on to play soccer. She has always assured us that Katy was on the soccer end of the spectrum.  I never expected that Katy would be ready to play soccer one month post transplant.  ( NO SHE IS NOT PLAYING SOCCER… yet)

Since Katy has been home she has been thriving and doing wonderful.  I am happy to report that she had her second biopsy and has ZERO rejection. Her immunosuppressant levels have been solid.  All great news. 

As for the rest of us Murphy’s… oh, we are loving life and breathing easy for the first time in years.  We are very excited and hopeful to get back to normal and it’s nice to see some of that already happening.  Katy still requires a lot of care ( intense med schedule and LOTS of appointments) but, it is just so much easier to deal with. 

I would like to share with you a video that my cousin Paula made for Katy.  It is gorgeous, and she is much quicker than me!

I still have have some more to share from our very special day… but I wanted to give you a current update. 

I we celebrate this milestone please pray for our donor family.  I imagine that this is a very difficult milestone for them. 

Hugs!

Amiee

Go Time

February 13th 2013

After many long days, months, years of waiting our sweet baby girl was being given a gift, a gift that would mean a chance for her to grow up leading a full and normal, healthy life. The most generous, selfless gift one can give.

Mike and I would finally be able to stop living in constant fear.  We would have new worries, but they pale in comparison to the worries we have lived with since we learned of Katy’s special heart at our 20 week ultra sound.  But, before we could do that Katy had to make it through the surgery and the crucial 48-72 hours that follow. 

Most kids who are going in for a heart transplant don’t go into it looking like this:

Living a pretty typical 5 year old life.  So it was very hard for me to send my “seemingly” healthy daughter and send her in for a surgery that she may not make it out of.  My brain knew that she was very sick and that any moment her heart would get sicker and she would be fighting for her life or worse.  But, my heart saw this little girl… the little girl that is a vital thread of our family. Although, I have lived in constant fear of losing her every. single. day. the thought of her going through this major surgery was so scary. The thought of not living in constant fear every. single. day was so exciting.  So yes, it was an emotional roller coaster.  But, oddly enough I felt very calm… up until this point…

Katy’s 5AM wake up call to a room full of people!!! She was less than thrilled.

5:15 came and everyone was ready to ROLL… Anesthesia was giving loopy juice… hugs and kisses to a sleepy Katy.  Lots of tears… (from the grownups) it was very rushed.  Mike and I escorted Katy down… we said our goodbyes in a hallway and even now it feels like it was very rushed… and I don’t feel I had enough time.  It is time sensitive… but there was a miscommunication at some point and it was a bit more rushed than normal. That said… I could have had 5 hours to say my goodbyes and it wouldn’t have been long enough.  Unless, you have had to send your child off behind those heavy metal doors I can never express  to you the feeling.  It never gets easier… you may get better at doing it… but that pit in your belly never goes away, that uncertainty, that last kiss, that plea with the nurse to sing her favorite song or rub her hair just so… that moment you look the Anesthesiologist in the eye and you beg him to bring your girl back to you, because you can not leave the hospital with out her.  It doesn’t get easier, sadly we just get better at it.

Well once Katy was wheeled away and Mike and the nurse were holding me a bit tighter than just a warm embrace in an effort to ensure I didn’t chase after her.  I lost it… the calm mama that no one could believe was being so calmed turned Into the hysterical hot mess everyone expected her to be… I was dry heaving and crying and screaming.  The OR nurse was the sweetest, most beautiful kind hearted person, she held me, cried with me and connected with me… she told she she was a mama and she would take care of Katy as if she were her own and that she would update often and that we had every reason to hope that this surgery would be very successful.  I can’t remember her name, but I will never forget her kindness. 

Of course Mike… oh my ROCK.  That was his little girl… his sweetest baby girl.  Those two share such a love and bond I can only imagine what Daddy was feeling… he is a man of few words. I do know that he was feeling mostly relief.  He knew his baby girl would come through with flying colors.  His presence is always so calming…no words just his embrace can calm me when no one or no words can.

 

Hurry Up and Wait

February 12 2013

So once I realized that yes this was the call, and once I stopped jumping and dancing around with Patrick.  I called my dad to tell him it  was GO time.  That conversation went a little something like this:

Dad: “Hell-O”  if you know my dad you know how he says hello

Me: (in my most calmest voice ever… think soothing a baby during a yoga class) “Hi dad, what’s up?  Where are you?

Dad:  “not to much, work”

Me: “oh, OK, so we got the call for Katy’s new heart”

Dad” “……………when, what, Ok what should I do… OK so do I have time to take the dog out… OK wait why are you so calm.  Amiee, you are being really calm.

Me: “You have time to take out the dog, Mike is on the way home with Kate… we are going to pack a bag and head in. I will call you when we are heading in.  You call Tracy. “

Dad: “Ok, I am going to clean up here, take out the dog and we will head in when you call us. Are you sure you are OK?

Me:”Yes, Dad I am OK really happy, really ready, it’s time.

Once my dad was in the car on his way home he called me again just to make sure I was OK.  Everyone (including myself) expected me to be freaking out, and I wasn’t.  I was ready. Was I afraid sure, but I was more afraid of what would happen if this call didn’t come in time. Mostly I was incredibly thankful, hopeful and maybe a bit excited. 

I can tell you and my cousin Darlene will agree… I can not pack under pressure. LOL! I was walking around the house throwing random things in bags. 

So after dropping off Patrick to my dad and Tracy (they were bringing him to Krissie’s)  Saying goodbye to Patrick was one of the hardest parts of this process.  Watching him and Katy say goodbye and kiss and hug and share I love yous was hard for this mama’s heart.  But, I believed that they would be back together soon so I had to focus on that.

We got to the hospital headed to the floor and were greeted by some of our favorite people.  The nurses and staff on 8 East.  I thought it was fitting that Maura, Katy’s very first nurse on 8 East when she was 7 Days Old was her nurse today.  Full Circle.  I like full circle.

There was a lot of paper work to sign and people to meet with.  A lot of information to take in. 

Katy did a lot of this:

Mike and I did a lot of this:

We did some visiting with family and then everyone left to get some rest… My dad, Tracy and Krissie would be back at 4AM.  Mike went and slept and I cuddled up with my girl.  There would be no sleep for me.  I told Katy the plan and what she had to do and that we loved her and couldn’t wait to do all the things she wanted to do.  I wished I could sleep, just to pass the time, but I saw every 15 minutes. I felt every emotion one person could feel.   I was happy that this day I had prayed and hoped for had finally come.  I was sad for the family that was grieving the loss of their precious child.  I was angry that this had to be at all, why did my girl have to go through this.  I was scared, what if the surgery was not successful.

At 4AM once everyone was back the amazing Dr. Fynn Thompson came up to chat with us.  This amazing man was such a comfort to me.  I knew that Katy would be safe in his care.  This is the man that would hold both of my daughters hearts in his hands.  The one the beat inside of me for 35 weeks, the one that has gotten her this far, and the other that would beat on inside of Katy for hopefully many many years to come.

Almost Go Time…

THE Call…

[I have started to write our journey to Katy’s new heart and what the last 2 weeks have been like… but its too much.  I have no choice but to break it up.}

February 12th was an pretty ordinary day for our family.  Mike and Katy headed in to Boston for Katy’s Pre Op appointments for her cath that was scheduled for the following day February 13th. I was home with Patrick finishing up some orders and relaxing… the impending Cath was weighing heavy on my heart. 

At around 12pm my phone rang with a Brookline number (Children’s Hospital number)  2 years ago my heart would have skipped a beat today not so much.  Depending where Mike is in the hospital his cell reception is spotty at best.  So I figured he was just calling to check in.  So I casually answered the phone…

Amiee “Hello”

Mike: ”Hey babe, you’re on speaker phone.” I’m still not thinking that  this is strange. 

Dr. Blume: “Hi Amiee” hmm… ok that’s weird.  Still not thinking that this is THE CALL

Katy: “Hi Mama, I’m gonna muffled muffled plant tonight”

Amiee:  “Hey, Baby what did you just say?” kind of beginning to freak out

Katy: Mommy. I am going to get my heart transplant tonight”

Amiee: “GASP!!!!!!!” Can’t breathe pins and needles.

Dr. Blume: “Breathe Mama…Breathe. OK mommy taking you off speaker phone.  You ok Amiee. “

Amiee: “Yes, Yes I am OK” Crying tears of joy.

At this point Mike and Kate were heading back home to gather some items and pick me up.  I called my dad and he was shocked at how calm I was.  I was calm it just felt right…. I was ready.  I knew Katy was ready and she would do great. 

We waited a long time and finally our time has come and we are ready for this part of the journey.

Katy’s Announcement

6 Months All Ready?

Actually it has been over six months since Katy’s last catheterization.  After putting it off until after the holidays, and then Katy was sick when it was scheduled two weeks ago so this Wednesday is the day. 

I dread cath days for many reasons.  Anytime your child is going to be put under anesthesia it is scary.  This time it is especially scary given the fact that Katy had a difficult time during her last time in the Cath Lab and that is still very fresh in my mind.  I know that I can look at Katy and see a vibrant, active, growing ( can you believe it, she is growing!!!) 5 year old.  My sassy, intelligent, artistic girl looks fantastic.  But, and that is a big but… I know that Katy is Katy and her looks are often deceiving and although I try to stay positive we have never received good news from cath results. 

Six months ago the team told us that Katy had 12 months to live with her current heart.  When I do the math, does that mean we only have six months left with this heart.  What happens in six months?  What are our options?  Why is this taking so long? 

As much as I dread the unwanted news… sometimes the unknown is just as scary.  It has been just long enough, that we need to know where we stand.  Because Katy always appears healthy, it will be nice to know exactly what is going on with her heart.  To ensure she is still being treated with the proper medications and dosages. 

We are not expecting to be admitted… just a long day of pre op tomorrow (Tuesday) and then again on (Wednesday) for the Catheterization. 

As always your prayers and good thoughts will be much appreciated.  I will do my best  to update as soon as I can .

Going to See Santa!

Katy & Patrick were so excited to see Santa this year.   I guess they know that Chippy and Cocoa had been giving good reports since they got these in the mail sent Priority for the North Pole!!

They were happy to see that they were both on Santa’s Nice List.

Those Crazy Elves…

Bubbles and Salsa were promoted this year to head elves.  Bubbles is now the head of the Lego Dept. and Salsa is the head Elf of the Princess Dept. at the North Pole.

Santa sent two very special elves in their place.

Chippy and Cocoa were here to spend December with us and they were just as crazy as Bubbles and Salsa.

Decorating The Christmas Tree

 

This year after much consideration and a little convincing we decided that it would be best to get a FAKE tree this year.  I know, fake tree, fake presents.  We just felt that it made more sense and would be one less thing for us to have to take care of, and worry about it should we be otherwise busy.  Kathryn and Patrick had a lot of fun decorating it… and loved the multicolored lights.