Birthday

Today Jillian turned 8. 

Every birthday is a milestone. 365 more days. 1 more year.

8 years old. Hard to believe.

Her being in my life has been one of the greatest pleasures and joys I have no words for. All the lows and all the highs. All of the hurt, heartache and unknowns. All of the anxiety, worry and fear.

All of that is overshadowed by her. Her personality, her charm, her humor, her stubborness, her sassiness.

All that she is and will be. 

I have a little area upstairs between my room and hers. In this area I have photos that are all special to me and have some meaning to them. 

One of the most special ones is this one:

This photo was taken on probably one of the lowest days while Jillian was in the hospital. As if you can't tell she is probably the sickest here. Her heart was failing. We were in a holding pattern. There was not much that could be done. We were waiting for her to be old enough to perform the second surgery. She was very, very sick. And I was very, very heartbroken. This photo was also taken right after she came back to UCSF from another hospital where I was told to walk away from her. That her life wouldn't amount to much.

This photo is a visual reminder to me of where we have been. That when we were at our darkest there was hope. That after all she went through, after all the tears, worry, frustrations, despair....she came out on the other side.

We were living minute to minute in those early days. I measured her life at that time by each minute she lived. If we made it through another hour that was a victory.

As she became healthier and came home I measured her life day to day. Each day I woke up to her beautiful self was a fabulous day.

To this day my mantra for my girls is each day you wake up is a glorious day. I believe this. I live this.

On days when Jillian is a little more challenging than usual and I find myself being impatient this picture will catch my eye and remind me of how very lucky I am.

After 8 years I finally feel that I am measuring Jillian's life by years.

8 fantabulous years of this crazy little girl who adds sparkle to our lives every single day of every single year we have been honored by this miracle.

And her life is fabulous and has amounted to extraordinary and priceless amounts of awesome.

Sigh...

You know.....I wondered for some time now...just idle curiosity....what Jilly has gone through and how it has affected her. The good news is she doesn't remember any of her surgeries. What she does remember from her last surgery is the play room and the wagon rides.

More awareness comes as she grows older. Subtle questions about her surgeries, her scar, her heart. She's seen pictures and amazingly she doesn't even bat an eye at some of the ones right after her surgeries.

There are times I worry about her adjustments with kids at school. She recently told me how some kids will tell her not to do certain things because "you know Jillian, your heart!". I try to explain to her that she can do whatever she wants and that kids are just being careful with her - although I grapple with the fact that I like that kids watch out for her with not wanting her to think she can't do things.

But I guess I do have to be catious with what I say now about upcoming appointments. Several weeks ago I told her that her usual appointment with Dr. R was coming up. She said which Dr. is Dr. R - I reminded her that he was her heart doctor and that's the appointment that she gets to watch a movie while they look at her heart. She later told me that she had told somebody about her upcoming surgery. I asked her why she thought she was having a surgery and she just shrugged her shoulders. I asked her what she thought about a surgery and she said she was scared. So I asked her why she didn't say something to me and she said she just figured that was what she had to do for her heart. But that made me really sad to think she was dealing with some feelings on her own thinking she was going to have a surgery.

Which leads me back to wondering what kind of pain she went through. I have always just felt a tremendous amount of sadness thinking about the three surgeries, drug withdrawal, how she felt, was she in pain. Of course, at the time, the doctors tell you she is comfortable - they are managing the pain, she won't remember, it doesn't hurt that bad...blah, blah, blah. My question was always, "how do you know, have you had open heart surgery?" Of course they had not so they didn't really know.

When Russ was with his brother after his open heart surgery last month he said that his brother told him that the pain he felt after surgery was the most excrutiating pain he had ever felt. Pain that works its way through some good pain medicine. At least he can verbalize what he is feeling, yell for more medicine. When these kids are so small having these surgeries, or even when they are 5, 10, 15,....just seems so unfair to have to go through that kind of pain. So I look at the outcomes of that pain and I feel some sort of solice.

In my educated head I know that there is pain. Duh. Of course there is pain. But to hear somebody who has just gone through it say how painful it is....indescribable.

So I heard this song. By Jason Mraz. And it reminded me of my oldest daughter for various reasons. I had a certain perception of what the song was about only knowing some of the lyrics. I watched the video and it made me cry. Because of these lyrics:

When I look into your eyes

It's like watching the night sky

Or a beautiful sunrise

There's so much they hold

And just like them old stars

I see that you've come so far

To be right where you are

How old is your soul?

Because it then held meaning for me with Jillian. I have always thought, when you look into her eyes, there is an old soul in there. She says things sometimes that hold a certain wisdom to them that only comes with life experiences. And even though she has little recollection in her consciousness of where she's been I feel like, somewhere deep in there - in a subconsciousness, there's an awareness and a maturity because of where she's been and what she has experienced.

So watch....I'm sure the words can be attached to many life experiences. (make sure to turn off the playlist first to hear the video)

Famous and all that

Jilly's 6 month cardio eval is coming up at the end of the month. Nothing to worry about. Everything to worry about.

I called Kaiser to set it up because for some reason they never call me when it's time. This time though the person I spoke to asked me if I wanted to see a different PC. Hello? What a silly question that is. I kindly explained that no, the one we see is just fine thank you. Don't you know what change can do to a person like me. I just got this PC to see things my way and trained in the anxieties of me.

She then told me that Dr. R had ordered a halter monitor for this upcoming appointment. Not sure why, since he didn't mention it to me at the last appointment.

She got the halter moniter on Monday and wore it for 24 hours. She has had one before but didn't remember it. She did fine with it. Carried the pack around like it was a radio. She had to wear it to school yesterday. I was curious how she would handle it because she is at that age now where everything embarrases her.....she won't even kiss me on the lips in public anymore :(

I picked her up from school and she jumped in the car and exclaimed "The time is up! Let's get this thing off of me!" With playing on the monkey bars and all the tape on her chest had pulled her skin and left some bruising. So by the end of the 24 hours she was less than thrilled with the whole thing.

I asked her how her day was and like everyday she said "awesome!"

Then she said..."but this day was awesomer than most."

I asked her why.

She said "because I was like FAMOUS today!! The big kids surrounded me after school today while I was waiting for you and asked me all kinds of questions about this thing!! It was like I was a rock star or something! Totally cool!"

I love that kids attitude.

Dinner Conversation

Sitting at dinner tonight Haley was asking questions about her Uncle Jessie and his heart situation which then led to questions about Jilly and her heart situation.

H: "was Jilly's heart out of rythm"

Me: "no"

Jilly: "was my heart out of rythm?"

Me: "no, I just told Haley that"

Jilly: "oh, well why did I have surgery again, what was wrong with my heart"

Me: "The plumbing was all wrong"

Jilly: "was my plumbing making my heart beat slow"

Me: "no actually it was making it beat fast and work too hard"

Haley: "was she a blue baby?"

Me: "Yes, she was a blue baby"

Jilly: "I WAS A BLUE BABY!!!???? AWESOOOOOOOOOMMMMMEEEEEE!!!"

Hearts

Russ' younger brother, who is only 37, had a massive heart attack this past weekend.

Yeah, 37.

Makes you sit up and look around and think, wow....life is fragile.

I think he is finally out of the woods. Off the ventilator and moving around some. Thank goodness.

But you know, the heart...it's a very important organ. As if you didn't know. But when you really think about it nothing else happens if your heart is not working.

And it only takes one second for everything to go horribly wrong. An electrical misfire. Clogged artery. Blood clot. Heart stops. Life stops.

In my last post I mentioned how women still get advised to abort their pregnancies when severe heart defects are diagnosed in utero. Even in this day and age with the medical advances that have been made to save these babies. Even in this day and age when babies born with half a heart are living full lives. Great quality of lives. And I think it may be because these doctors know how very important a heart is to living. If your heart is not functioning properly your body does not function properly. So many things could, and do go wrong. Maybe they just want to save parents from the heartbreak of surgeries, hospital stays, emergency room visits, panic and worry. Knowing that in the end, all of that, and the child still may die.

But then that would rob of us of these awesome children.

I know when Jillian was diagnosed I had no idea what to expect. I remember sitting in her hospital room trying to absorb all that I was learning and I would cling to certain things.

Like when the surgeon told me he was going to fix all of her defects and she would most likely lead a very normal life. I said "ok then, let's do it". For six days I held that hope close to my chest. Clung to it like a lifeline.

I comforted myself with the fact that he said she was going to be "fixed" - whatever that meant. But it sounded good.

And when I met other parents and started learning about this little cardiac underworld I continued to cling to that word "fixed". I learned of babies who couldn't be fixed - learned of this little 3 staged surgery thing they were doing to let those babies hopefully lead a somewhat normal life until they needed a heart transplant.

Not me. I was clinging to "fix". He was going to fix her. Oh no, not us. We aren't going to need anymore surgeries after this. I didn't want to hear the stories.

When I look back on that time I almost cringe. Me, walking around clinging to this crazy hope. And when I look back on the parents who had been around the block a time or two listening to my crazy talk there was an understanding in their eyes, like "yeah, we thought that too". I was afraid to burden these other parents with my incessant questions because you know, my kid didn't need that 3 staged surgery. She was going to be "fixed". Poor you.

Then that awful moment when the doctor called us into a little room during her 1st surgery - never a good sign.

And pulled the damn carpet out from under my feet.

All I remember him saying is "the surgeon could not repair the defects, yada..yada..yada.. will need to perform the Norwood....1st stage of the three staged......"

I put a pillow over my face and sobbed.

I was one of them now.

The parent of an unfixed.

Now I was that parent the newbies didn't really want to hear the story of. The one with the baby struggling to survive. The one who needed methadone. Three months in this stinking hospital. The one who became the old timer on the floor. Oh Sommers...we saw them last month when we were here for a cath...they're still here?

Yes, my baby can't be fixed.

But talk to me. I won't scare you. I promise.

I've learned a thing or two. I've grown. I'm not pessemistic anymore.

Everyone who begins this journey needs support.

I had a person recently whose child was diagnosed later in life with a heart condition that needed surgery tell me that she was afraid to ask me questions about the upcoming surgery and recovery. Her daughter just needed a simple procedure - open heart surgery - but simple nonetheless.

I asked her why and she said because Jillian's diagnosis was so severe and complex and her journey so unsure and complicated she was afraid to offend me with her anxities and fears over what to me might seem like a trivial intervention.

I totally understand. I really do.

But whatever the diagnosis is, big or small, it is your own worst case scenario. And the support from somebody whose been there, done that, is priceless. Even if it is to say, I know how you feel.

Because I do.

So all of this to say......to anyone who might be traveling down this road. Cling. Don't go it alone. And don't be afraid to ask for support.

Even if it is from someone whose shoes you may be glad your not in.

If every woman who had a baby diagnosed in utero with a heart condition terminated their pregnancy as they were encouraged to do (or in my case told to walk away from that baby with a severe heart condition) we would never know the joy that these kids bring to our lives........


Ryan Marquiss, Pennsylvania Boy, Survives With Heart Outside Body

A Pennsylvania boy has survived after being born with a condition that caused half of his heart to be formed outside his body.
Ryan Marquiss' heart was protruding out of his chest cavity and covered only by a thin membrane, a condition known as ectopia cordis, the Daily Mail reports.
GRAPHIC PHOTO BELOW
Out of every million infants born with the condition, only five to eight survive.
The boy's survival is even more astonishing given he also suffered from hypoplastic right heart syndrome, a condition where only the left side of the heart properly develops.
Doctors discovered the child's heart defects during the first 12 weeks of pregnancy and warned parents Leighann and Henry Marquiss that the baby's chance of survival was slim.
Despite the odds, the pair refused to terminate the pregnancy, according to Fox News.
After undergoing dozens of operations, Ryan is now celebrating his 3rd birthday. Doctors had to place a shunt so that half a heart could do the job of a full heart and place tissue expanders under his skin so that they could cover the exposed heart. Doctors believe he's the only child to survive with this deadly combination of heart conditions.
"The doctors told us that no baby with Ryan’s combination of defects had ever survived, so the fact that he is here with us today, is just amazing. He really has astounded everyone," Leighann Marquiss told the Daily Mail.
In 2009, ABC News reported on a similar story of Christopher Wall, a 33-year-old with ectopia cordis who also defied the odds and managed to live a "normal," active life despite his condition.
Click here to see the graphic photo

As the Awareness Comes

Cuddling in bed watching Dolphin Tale.

In movie little girl comes to see the dolphin with no tail. She has no leg.

Jilly asks why she doesn't have a leg.

I explain that maybe she was born without one.

She says...like me.

How like you?

I was born with a broken heart. She was born without a leg. Kind of the same.

Kind of.

Movie continues. Dr. Clay tells kids that if Winter (the dolphin) continues swimming the way she is without a tail she will die.

Jilly contemplates this.

Mom?

Yes?

So I was born with a broken heart?

Yes.

Is it fixed?

Too much and too young to try and be honest and explain. So a yes, sort of, can suffice. Only one of us needs that anxiety and worry.

Quiet contemplation continues.

I wonder what her little mind is thinking. But afraid to ask.

Man, this is hard sometimes.

Made harder by the fact that of late there seems to be too many heart kiddos dying.