Our Journey Begins

There is something about writing this post that has made me start and stop over and over the past couple days.

There is something permanent and real about finally inviting the world to be a part of our new journey that I have been struggling with what to say.

But, much like most of Mallory Kate's life, it is time we again ask for the prayers and support of all of those that got us this far... to help carry us through our new journey.

Until now, we have been trying to internalize our new reality within ourselves and with our family and closest friends. We have been trying to educate ourselves as much as we can and more than anything come to terms with the idea that Mallory will not be able to live with the heart that she has been battling since she was 10 days old.

I will step back a little bit for those that are reading this and wondering what went wrong.

Over the past few weeks, we have noticed that Mallory has been different. Her heart has always looked much worse in pictures than she has shown clinically and for the first time she has started to show signs on the outside of how hard she is working on the inside. She lost 2 pounds in two months - and being small already, this was a major concern - she was almost 2 1/2 years old and only weighed 20 pounds. Her appetite had decreased significantly and she was throwing up when she did eat a significant amount. All of these are signs that her heart failure was worsening.

At her last cardiology appointment on August 19th, we discussed our concerns with her doctor. He suggested that we do a procedure called a heart cath to see internally how things looked which would help guide us to our next steps. We had done this procedure last October so we would now have numbers to compare to.

We were admitted to the hospital on the night of September 1st so that we could have our procedure the morning of September 2nd. The results we got were not what we hoped for but were honestly what we were expecting. Because of the size of Mallory's heart, the pressure within both her left and right chambers had increased from the prior year. Her doctors were confident that her heart was not going to get better - in fact there are concerns that it could in fact get worse.

It has been a wonderful 2 years and Mallory has grown so much - we are so blessed. She is a vibrant, smart, beautiful, crazy little girl who has fought so hard and defied all odds. She is our miracle and she now requires the most amazing gift anyone can ever ask for - a heart transplant.

What was supposed to be a one night stay turned into a 3 night rollercoaster. We met with the entire transplant team - doctors, financial advisors, psychiatrists, pharmacists, child life specialists, infectious diseases, social workers... It was a whirlwind of information. I know we went through this before when Mallory was listed for a short period of time when she was an infant, but I did not remember any of it. The evaluation process to be considered for a heart transplant is very intense and we found that we were quickly shifting gears to get her listed as quickly as possible.

As of 8:00 AM on Friday September 5th, Mallory Kate was listed as a status 1B for a heart transplant. Something that our family had never spoken about since the day we took her off the list is now the only thing that will save her life.

We have been going through a lot of emotions over the past week - anger, acceptance, sadness, fear, excitement - and I would say we experience each one of those emotions daily and sometimes hourly. I do not know when that will stop, or if it ever will.

Much like our journey when she was an infant, we thought that starting a blog would be something that not only will help others who still pray for Mallory Kate everyday receive updates on how she and our family are coping, but will also be therapeutic for us as a family to get through the very long road we have ahead of us.

I know there are a lot of questions, and I promise I will educate all of you as much as I can. I could probably write for hours on everything we have learned and the support we are going to need to get through this, but I will as time goes on. We will also have a Facebook page for Mallory Kate to make it easier for those that do want to follow her journey as we wait for the most incredible gift we could ever ask for.

Please pray for Mallory Kate and our family as we begin this journey. We will need strength and support that I once again will never be able to thank any of you for.

Love Always

- Jess