8.02.2012

life after NICU - ryan's story (part II)

Ryan came home on January 20, 2012 - around two weeks after his due date.  It was a crazy day.  We showed up at the hospital and filled out all the discharge paperwork.  And then they disconnected him.  They took off all his leads that were connected to a machine that was monitoring his vitals.  This was the machine that told us he was ok.  How the heck was I supposed to know if he was ok now?!  Duh, just like any other normal mom.  Look at him, silly.  It felt so weird to have him 'free'.  We dressed him in his going home outfit, strapped him in his carseat, and made our way out of the NICU. 

As we said goodbye to the NICU staff, I cried.  I cried for my Aiden, who we had to leave behind.  And I cried for Ryan, who had come so, so far.  I thanked the nurses for all that they did, and we walked out of the hospital with Ryan by our side.  It was surreal to say the least.  For the first 4 months of his life, it felt like he wasn't really ours.  Sure, we would visit him every day, but we always went home and had to leave him behind.  But not on this day.  This day was different.  We finally welcomed our little nugget home.

Leaving the hospital
Car ride home

Welcome home baby boy!

So tiny! 7lbs 4oz

Getting ready for a bottle :)

The first two weeks home were cray-cray.  We barely slept, and when we did it was on the couch and usually in shifts.  Ryan's biggest struggle at home was reflux.  For a while, feeding him was a nightmare.  It would take 40 minutes for him to finish a bottle because we would stop every 1/2 oz in order to burp him, and then sometimes he would end up throwing up everything he just ate.  We're talking projectile vomiting.  Fun times :)  Eventually we put him on Zantac, and after a few months his reflux and feeding greatly improved.  Today, Ryan is reflux free.  For the most part.


Fist pumping baby

This is how we would protect this child from his reflux

Feed me.

Besides his shunt revision in February and a visit to the ER for a stomach bug, Ryan's time at home has been pretty uneventful.  He sees a regular pediatrician and we do follow ups with our NICU.  They basically have a developmental pediatrician follow him to see how he is progressing.  We also see his neurosurgeon.  At first it was every few weeks, but the last time we went, we were cleared for the next 6 months.  And so long as there are no issues, we will be seeing him less and less often.

As I mentioned before, Ryan receives PT through early intervention once a week, but we do his exercises daily.  Ok I lie, Seamus does his exercises daily.  (He's a keeper, that one).  We are in the process of trying to get more services for Ryan, as he could definitely benefit from them.  His main struggles at this point are his torticollis (tightness on the right side of his neck, causing his head to naturally tilt to one side) and he seems to prefer his left hand over the right one.  We focus on getting him to move his head to the side that he hates and we stretch/massage his right hand to make him more aware of it.  We also stretch and massage his arms and legs to prevent any tightness.  And Seamus has mastered the art of creating fun games so the kids don't know they're getting PT.  (Again, he's a keeper.)

March 13 - First smiles
April 8 - First time eating oatmeal
Ryan is the most smiley little guy you'll ever meet.  At around 5 months old he gave us his first smile, and started laughing out loud sometime between March and May (?).  Ugh, there's my memory...failing me.  He also loves to babble and squeal, and more often than not, sings himself to sleep.  He also has this move where he licks his hand and it looks like he's licking a ice cream cone.  Funny baby :)

Now, please enjoy this video while I think of a clever way to close out this post....



Sorry, I'm new at this blogging thing.

Baby boy is 10 months old, and it's hard for me to figure out where the time has gone.  When I look at photos from when he first came home, I can't even believe I'm looking at the same baby.  It's crazy how much they change in such a short period of time.  While I'm sad that my itty bitty isn't so itty anymore, I'm excited for the future.  To watch this cuddly baby turn into a wonderful human being (because ya know, he's not human yet :P).  I'm excited to teach him new things, to take him to new places, and to watch him grow.  Because there was a time when I wasn't sure that I'd get the chance to.  Get ready for some fun times, Ry-guy!

May 4th - Getting better at tummy time

July - bath time with Mommy











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