Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Sunday, February 17, 2013



Isabelle's Mommy writes..." She's my angel and my heart will never be whole again - she's got a piece of it with her in heaven...."

This is Isabelle's story...

I really hope I can write something for you about our CHD journey.  As "ready" as we could be for the long haul, it was cut short for our Isabelle only lived for 4 days. So, I am not sure how much to put in the story, most of our "story" and our journey was before she was even born. We live in Evansville, IN and after learning our baby was a girl, we also learned she had HLHS.  We had an amniocentesis done the same day to check for other genetic issues.  We also visited the pediatric cardiologist the same day (only b/c the office girls worked it out so we could do this otherwise we would have had to wait for an appointment). We were advised that we needed to take our baby to a level 3 hospital, or one that could care for her and all her needs, thus is was ideal we deliver at this hospital as well.  So the research began!! We could have gone to Indianapolis which is about 4 hours from where we live and near all our family, but we chose to go to Michigan to Mott's Children's Hospital. We made about 4 separate 9 hour trips to Michigan for orientation, and check-ups, ultrasounds, and echocardiograms. 
We wanted to give our baby girl the best chances and felt that Mott's had more experience with this type of CHD as well as the other things she was facing.  We were dealt a lot of "unknowns", meaning they discovered that she had a never before seen duplication on the short arm of chromosome 8. This presented a huge question to the doctors as to what it might "do" or not "do" to her health, heart, brain and or other organs. They kept a close watch on her brain development, her kidneys, her lungs, her breathing, and of course her heart. There were "concerns" about ventricles in her brain, and they wouldn't be able to be more conclusive with anything until she was born. She also developed a abnormal heart rhythm on the lower ventricle. Her top atrium would beat normal, but the ventricle would skip irregularly and it presented a possible situation of me having to deliver her early, but they were hoping I would (and that she would) make it to 34 weeks!  So I had to have weekly echocardiograms done in my home town to monitor the heart rhythm to make sure it didn't get worse and to watch for fluid build up around the heart.  I also had to go to my high risk OB to have a weekly ultrasound done to have what's called a BPP study done (biophysical profile) - where they watch baby's breathing, movement, and tone, amniotic fluid and heart rate in a 30 min period. I had one EVERY Monday!
I was JUST at 35 weeks, had JUST come from Michigan appointment on Thursday Sept 13, 2012 and was at my appointment on monday the 17th.  HERE is where the story changes! Isabelle wasn't moving much, actually she only moved her arm in a 30 min period.  I drank a half a cup of coffee that morning, because I noticed on sunday night she was a little more "quite" or "calm" than normal...but she was STILL moving, just not with the same "pizzazz" or "punch" as the day before. This BPP study spawned a urgent reaction with the staff.  I, alone with my 2 year old, had to call my husband at work, tell him to come to the hospital, something was wrong! 
My OB tried to get us life lined to Michigan and even to Indianapolis but neither would take us because of the low BPP score, thus we had no choice but to deliver her by c-section, in Evansville ~ all our plans were thrown out the window.  All the hard work we did to plan for delivery on Oct 11 in Michigan, all the visits we made all felt like it was for nothing at this point. Fortunately, a team was put together in Michigan to arrange for them to fly to Evansville and pick up Isabelle and take her back to Michigan that night of delivery. There we were me, my husband and our 2 year old Chloe, left behind, stuck in a hospital until I was released before we could be reunited with Isabelle. I was released early, with strict instructions, so we could get to Michigan.  The trip was extremely painful for me, but I had to do it! I wish I could have flown with my baby, the night they took Izzy back to Michigan. So upon arriving to Michigan I was a mess, but felt an extreme calm once I laid my eyes on my baby girl, I felt "whole" again. But that feeling wouldn't last long enough. Her kidneys weren't working properly, she needed a pacemaker to help pace her irregular heart beat and it all took a toll on her, she fought for 4 long days. My husband and I got to be with her 2 of the 4 days.... it's been so hard.  She was a fighter, and touched the hearts of all who worked with her, fighting the fight with her. I am proud of Isabelle! She's my angel and my heart will never be whole again - she's got a piece of it with her in heaven. 

That story above really doesn't even give the WHOLE story justice.... seriously! That's why I wrote a blog, but even then when people read it they only read what was recently posted and not from the beginning, so they don't get a true sense of what our journey was about. My blog stopped after our last visit to Michigan, right before our last BPP appointment and unexpected delivery.  I have not had the strength to write it, and tell you (above) has been the first time I have typed it out in ANY manner.... 

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