This is the part where I’m sure you want to clone yourself.  After they boot you out of the hospital, after your initial freak out and hyper-vigilance, you will have to deal with the tsunami of appointments.  Nolan had a cardiology appointment every week, then he had GI appointments, regular pediatrician appointments, then there were appointments with nurses at home, speech therapy at home, and physical therapy at home.  It was nuts and my wife did an incredible job juggling it all since I had to be at work all the time. 

I did go to Nolan’s first cardiology appointment, though, and it went well: they were very happy with his progress so far.  But man what an effort to pack that kid up with the CHAMP binder, sat reader, feed pump, and all the regular baby stuff on top of it.  WHEW.  Eventually the amount of appointments will calm down, depending on your child and his or her progress.  This will also be the stage where you realize your life as a parent will no longer be a “normal” one…it’s going to be crazy, but every day your heart warrior wakes up is a great day: remember that.

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 14, 2014, in Care at Home and tagged , , , , . Bookmark the permalink. 6 Comments.

  1. Hi Chris. I am a heart mother and have been following your blog for a couple weeks. Your posts are perfect timing as we just brought home our daughter from the hospital on 1/10. We can really relate to everything you are talking about. She is also a twin. It sounds like you brought Nolan home around Feb 2013. How has he been doing since? Take care and keep on blogging. 🙂

    • Hey there! It’s awesome to find someone else who has a heart baby that’s a twin. Yes, Nolan came home from his first hospital stay in Feb 2013 and he’s been doing very well. The journey is one with many bumps in the road, as you’ll see from my posts. Thank you SO much for reading, it makes me really happy to know all this is helping someone along. Wishing the very best for your daughter! ~Chris

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