Thursday, August 16, 2012

Broken hearts

Jensen was born with a broken heart. When he was first diagnosed, we immediately thought if he did survive, he wouldn't have any quality of life. As I type this, he's lying beside me on the bed, sucking on his toes, a skill he just learned today. At this same moment, there are parents of other broken-hearted children fighting for a few more minutes, a few more kisses, and peace for their child. It seems so unfair.

Before I continue, you have to understand the heart community (as we call it). It is parents and survivors who connect with each other on facebook, in hospitals, over the phone, from thousands of miles away. We share a common denominator: broken hearts. Our children have some type of heart defect, along with other medical issues. This means that when we meet other families in the same situation, we have an instant understanding. I can look at another heart mom and see the pain, frustration, hope, and all the same things that I experience on a daily basis. We get each other and are always there for each other, they become family.

That being said, there is a very special family that Jeremy and I met while we were at CHOP for Jensen's Glenn. Their sweet HLHSer Hayden was born just a few weeks after Jensen. They were actually there at the same time we were for Jensen's Norwood but we never got a chance to meet. I finally was able to talk to Hayden's mom and dad and they were wonderful people. Hayden's mom and I texted each other all hours of the night just to have some company while we were at our kids' bedsides.

Hayden just went in a week ago for his Glenn and came through with flying colors! He was in and out of the hospital in days! He had to come back to have a feeding tube surgically placed. On this admission to CHOP, something went terribly wrong and I got news that Jensen's heart buddy ended up on ECMO and was being rushed to emergency surgery with Dr. Fuller. Its hard to describe the fear and panic that sets in when I even see the words "ECMO" written.  Myself and other heart moms immediately began sending out prayer requests. Unfortunately, things have not gotten any better over the last few days.

Now I am broken-hearted. I wish I could jump on the next flight to Philadelphia to hug my friend. I know it won't help. I am shocked, sad, angry, and confused as to why this happened to Hayden. I can't even begin to imagine how his parents feel right now. Although their child was diagnosed with a serious, complex heart defect he was a fighter. He was winning against HLHS. Things happened so quickly and suddenly, the tables have turned.

I already cherished every second of Jensen's life, but I will even more now. These kids' lives are so fragile and things can change in an instant. I hope Jensen knows what he means to me.

I got sidetracked but my point is, please pray for this family that is so dear to me. They need strength to get through the coming days. Also, there are several other heart babes that need prayer. Specifically, Jensen's friend Martin is undergoing his Glenn right now. His parents have updated that he's doing great so far, please pray that his surgery is uncomplicated and his recovery is quick.

Sweet baby Hayden

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