So post-Glenn Procedure, Nolan had a little bit of a hiccup with fluid on his lungs that landed him in the hospital for one week.  But now Nolan was home and we had nothing left to do but move onward: keep up with physical therapy, speech therapy, doctor’s appointments, medications, etc.  It’s still a colossal amount of stuff – especially for my wife – but at least there weren’t any surgeries in the near future and that’s a great, great thing.  Eventually Nolan came off the diuretics he was sent home with, he was no longer taking aspirin either.  In fact, he was on ZERO heart-related meds at all at this point.  He was only on one med for bowel motility and one med for his reflux. 

Nolan moved to physical therapy twice a week, and if my work schedule permitted I went to a couple therapy sessions with him.  I felt so bad for him because he would scream and scream and cry and cry…it broke my heart.  Eventually, though, he started to make some progress and before you know it, he was able to hold himself up for as long as he wanted:


On the day I took this photo, he sat up for 7 minutes straight.  It was a definite cause for excitement!  Our little happy boy was improving!

Unfortunately he was still way behind in the mouth-feeding department, but we still worked on it. 

During this time, we managed to meet and befriend several heart families either in person or online, and it has become a great resource.  I definitely encourage you, as a heart parent, to find other heart parents to connect with: ask them questions, meet their kids, just hang out.  It makes a world of difference.  There are tons of groups on facebook you can connect with, and if you want to find someone local, ask your local heart team to connect you with someone.  That’s what happens with us: we get emails asking if we’d be willing to reach out to families who are about to have an HLHS baby.  We don’t pretend to know EVERYTHING, but we can definitely share our experiences and lend a helpful ear.  Through this we’ve met some really cool people and really nice family.  If we work together and lean on one another, our heart warriors become one heck of an army!

During this time we also realized that having a heart baby is pretty costly.  We got some of those “this is not a bill” statements from the hospital for Nolan’s FIRST hospital stay (the 2-month ordeal) and it was around $750,000.  Yes, you read that right…three-quarters of a million stinkin’ dollars.  It blew my mind and actually made me laugh: I mean, really?  Luckily I am blessed with having insurance through my employer as well as getting medicaid for Nolan.  Still, things aren’t the easiest: my wife couldn’t go back to work since no daycare is gonna take Nolan…nor would I feel comfortable with him in the hands of a daycare while he’s under tube feeds and all that.  And even if she did work, either one of our salaries would go completely to paying daycare for 3 kids.  What a world we live in, right?  And, of course, life happens through all this: things break down, bills pour in…heck, at one point in the summer our oldest broke his collarbone while he was at Vacation Bible School!  SHEESH.   So we realized that we needed to try to do some fundraising to help us out.  Here are my shout-outs to some incredible places:

Kisses from Katie: an absolutely wonderful group from my home state of Connecticut.  They reached out to us via a family friend and were so supportive.  They started this group in honor of their daughter, who was born with HLHS and is now a heart angel.  They want to support families with critically ill children.  They have helped us with bills and even bought us a new dryer when ours was on the fritz.  They are AMAZING and I can never thank them enough. http://www.kissesfromkatie.org/website/publish/home/homeList.php

Give Forward: this is a great website that allows you to develop a fundraising web page.  They handle it all and when your fundraiser is closed, they cut you the check.  Easy as that.  They were great to work with and always available to answer questions quickly via email.  http://www.giveforward.com

Bonfire Funds: this is an awesome company that will design a shirt for you to use as a fundraiser.  They have high-quality shirts and give your supporters the option of buying not just a t-shirt, but a child-size t-shirt, a long-sleeve t-shirt, and a hoodie.  They have lots of options and they ask you lots of questions about your cause so they can design you a really cool shirt.  I was amazed that they actually used a design I made and just added a few finishing touches.  In the end, the shirt looked awesome and we sold about 60 of them online! http://www.bonfirefunds.com


About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on January 29, 2014, in life, thankfulness and tagged , , , , , . Bookmark the permalink. Leave a comment.

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