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.