Lessons learned

We made it out of the hospital - on day 13, we BUSTED out of that joint!!  So glad to be back home and be finished with that craziness!  We came home on Sunday - which was actually a day earlier then expected.  On Friday they told us we weren't going home until Monday.  I learned a lot during those 13 days. 

*Hospital foods gets really old, really quick!  Luckily, since I'm a breastfeeding mom, my meals were free!  I just had to pick up the phone and call room service!  So, we just had to worry about Steve's food each day.

*YOU are your child's biggest advocate!  If you're concerned, have any questions, unhappy - it's YOUR right to speak up!  No one knows your child better then you do, so if something doesn't appear to be right - then SPEAK UP!!

*There were so many different doctors/nurses that would constantly come in to check on Colin.  One dr would say something, and another dr would come in 45 minutes later and say something completely different.  Many times I had to say, "But so-and-so said this!"  I often seemed to be the greatest line of communication between the various doctors and nurses!

*Hospital towels suck - they are not soft AT ALL!!

*Sleep?  Forget about it!  Especially when they are coming in at all hours to check vitals, give medication, etc. 

*I could read the monitors and tell if Colin was really desating, or he was just moving around too much! 

*As much as I didn't believe it, Colin would smile again!!  At one of my lowest points, I was convinced I would never have my sweet, smiley, lovable Colin back!  I know, it's irrational.  But he's back!  As smiley as ever!!

*Those nurses work their tail-ends off!

*Take plenty of lotion to the hospital!!! My skin was so dry, it hurt.  It felt like it was going to fall off.  I couldn't imagine how much lotion I would go through.  Let's not talk about handwashing!  RAW hands!  We had to wash/purell everytime we would come in the room/out of the room. 

*There's NO PLACE LIKE HOME!
*Did you know the RSV virus can live on surfaces for 72 hours??  WOW!

*One of the hardest lessons I learned was about Colin's extra chromosome.  It was part of the reason why it took him so dang long to bounce back from RSV/pneumonia.  It was heartbreaking to watch.  And for one of the first times since he's been born, I found myself ANGRY that he has that 3rd 21st chromosome.  I felt like I was punched in the gut, and it really took the wind out of me.  Since the day that Colin was born, I have thanked God that we were blessed with such a healthy baby!!  Children with T21 can have so many additional health issues - Colin was born with none.  I was living in this fantasy world that all was just going to be ok.  Till we landed in the hospital.  For 13 days.  And it was the first time that I really saw him struggle - where many kids might be able to fight stronger.  It was such an eye opener to me that things like RSV/pneumonia will be harder for Colin to fight, and that makes me sad.  Would I change that extra special gene??  NOPE!  It makes Colin who he is!