Rowan’s Norwood Recovery

We are getting ready for Rowan to have his Glenn.  The Glenn is supposed to be cake compared to the Norwood, but getting close to it has made me think back to before Rowan had his Norwood.  I went back and looked at the pictures we took of Rowan during his recovery.  We have not shared them up to this point, largely because we didn’t want to show the bad until we knew there was a happy ending for him.

Honestly, I wish I had seen pictures of kids who had the Norwood done before Rowan had his.  I wasn’t sure what to expect.  I think you can’t ever be ready, but it certainly helps to have an idea of what to expect.

Rowan’s recovery took nearly 3 months.  He was born December 10th, had his Norwood December 23rd, and came home on March 19th. 

Rowan had complications with persistent chest fluid build up that prevented him being extubated for a long time.  He eventually needed a second surgery (thoracic duct ligation) to fix it.  He later had surgery for a g-button placement and fundoplication to make sure that he was not aspirating fluids.

These photos are somewhat graphic.  I am posting a link so that parents who may have to watch their child go through this can see what it looked like for us.  This is encouragement for them to “hang in there” because Rowan had it rough.  Today he is smiling and happy.  He is a little behind developmentally, but he is progressing.  He doesn’t act like he’s been through this incredible trial.  He doesn’t hate life (though for months of narcotic withdrawal, we were worried he wouldn’t ever be happy).  He took the long hard recovery route, and he made it.  It’s hard – but you have to be tougher than your kid.  So if being prepared helps you – here is Rowan’s Norwood Recovery Link.

http://photobucket.com/RowansNorwoodRecovery

What Can My Baby Wear in the NICU? CICU? PICU?…any ICU…

When Rowan was diagnosed with CHD, one of the things I was begging for help with was figuring out what I needed to change about baby items so he would have things he could use in the ICU. What can my baby wear? What clothing is good for him after open heart surgery? Some ICUs may have different rules, but I've found that as long as the clothing doesn't interfere with the medical equipment most docs and nurses in my experience have been fine with it. You can always ask the ICU your kiddo will be staying in if they have specific rules ahead of time.   Just because he was going to be in a bed for a long time didn’t mean that I didn’t want there to be clear signs in his room that we loved him and remembered that he was a person.  Also – all kids should get to be cute.
There wasn’t a list or examples anywhere so I thought I’d share a list of the things that I liked.  I couldn’t find much in stores.  At a shower, the ladies at my work gave me an Amazon gift card which was amazing because it was the only place I could get things he could wear.
1.) Socks – most heart babies will need a pulse ox probe on them, BUT that doesn’t mean that you can’t put a sock on over it. A lot of heart kiddos have trouble keeping their feet and hands warm. I love the BabyLegs brand socks because they seem to stay on feet better than others.

2.) Button up shirts– Ok, let me say this, if you can’t unbutton it all the way everywhere, you could have trouble getting it on your kiddo.  Rowan had lots of IVs (and a lot of kids do when they have a major surgery like the Norwood with an extensive recovery) – so your kiddo could have an IV in their neck, leg, and head.  You’re not going to pull a t-shirt over a head IV, right?  So here are my favorite, easiest to use, and most practical items!
These shirts are great because they allow easy diaper changing. They also have cuffs for little hands so you can keep their fingers warm…and keep them from trying to pull out wires (they do that from a very young age).

3.) Button all the way up everywhere onesies - These onesies are great because you can leave out any body part that has some sort of wire going in and you can let EKG leads stay on and stick out one of the center buttons. You can’t tell it from the picture, but the legs unbutton all the way around on both sides so it’s almost like laying a top half on a bottom half, which is perfect!

Kickypants are super soft onesies that LOOK like they are a button up all the way item, but they aren’t.  Only one leg buttons down and it has a cuff on the bottom that does not un button.  They are great when your kid is transitioning out of the hospital and on a normal floor, but hard to get on in the ICU.