8.04.2012

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

After what seemed like forever, we finally got the call that Aiden was coming home.  It was February 11, 2012.  This was the end.  It was weird knowing that this would be the last day that we would have to go to the NICU.  We were finally going home.

Last sleeping NICU photo

All dressed, ready to go

Aiden in the car, on the way home.

I was so, so nervous about Aiden coming home, mainly because he had just gotten off oxygen like two days prior to discharge.  I kept thinking he was going to stop breathing while we were asleep.  He didn't, obviously.  And that was a silly fear, obviously.

Finally home

Just like daddy
At this point we were in a routine with Ryan.  He was sleeping 4-5 hour stretches, so we were able to get some rest.  Now that Aiden was home though, it was back to waking every three hours to feed.   I was like a walking zombie.  Coffee and chocolate were my friend, and it was an accomplishment if I showered each day.  Thinking back to that time, they were so, so little, and didn't really have that many needs.  All they wanted was some food in their belly, a warm place to sleep, and some cuddles once in a while.

Aiden struggled with reflux just like Ryan, although his reflux is considered "silent".  In short, his stomach contents would come back up in throat hours after eating, but rather than spitting up, he would swallow it back down.  This results in a yucky mixture of saliva and stomach acid (you can smell it on his breath).  Because of Aiden's cleft palate, the saliva would frequently travel up through his nose.  The problem with this, besides it being painful,w is that when an infant's nose is obstructed he will hold his breath because he doesn't know that he can breathe through his mouth.  We frequently had to suction his nose just to get him to breathe again.  And the worst part is that when he is refluxing, he can't always cry out.  So you can imagine how nervous we were to even go to sleep at night.  Today Aiden's attacks aren't as severe or frequent, an we've been successful in weaning him off his reflux meds.

Six weeks after being discharged from the NICU, we were told to go to the Speech & Hearing Center to follow up on Aiden's hearing since he failed his newborn hearing screen.  The clinic did an ABR hearing test and concluded that Aiden has mild to moderate, mixed hearing loss in both ears.  Mixed hearing loss is defined as both conductive and sensorineural.  Conductive means that there is an issue with the structure of his ears.  This could have been caused by his prematurity or by his cleft palate (since the ears, nose and throat are all connected).  Sensorineural means that there is a problem with the nerve pathways from his inner ear to his brain.  Again, this could have been caused by his prematurity or by his hydrocephalus.  No one knows.  We were instructed to apply for assistive technology (hearing aids) through Early Intervention.  Once his hearing aids were approved, we went back to the hearing clinic to have him fitted for them.  We mentioned that we noticed Aiden responding to sounds he never responded to before, and the audiologist decided to re-test him.  It turns out that Aiden's hearing has actually improved.  We were totally surprised by this, especially since his ENT once told us that it would be a phenomenon if his hearing improved.  We have another hearing test scheduled for next week, so please keep your fingers, toes, and everything else crossed for good news!

Aiden's services through EI are a little different than Ryan's.  On top of PT, he gets ST (speech therapy) twice a week.  He qualifies for ST because of his hearing loss and his cleft.  On top of his therapy, we work with him daily, implementing the exercises that his therapists teach us.

Aiden is a special little boy.  I swear I smile from ear to ear just thinking about him.  He's a tough kid who loves kisses.  If you kiss his nose, he gets really quiet and focuses only on what you're doing.  It's funny because he is easily distracted, but not if you kiss him.  We call him T-rex because he has this hoarse scream that he lets loose whenever he is excited or angry, but it's not loud.  He legit sounds like a monster.  FYI:  A combination of his cleft and his damaged vocal chords probably contribute to his T-rexiness.  (Yes, I know that's not a word.)  Since Aiden was intubated for so long, his vocal chords were damaged.  When he was discharged from the NICU, you could barely hear him cry.  But his voice has greatly improved over the last few months.  It just needs time to heal.


St. Patty's Day - First smiles

Ready for the Rangers vs Red Wings
I don't really remember when he first started smiling (mommy fail), but I suppose it's around 5 or 6 months old.  Then he started giggling.  If you get this kid going, he laughs so hard that his shoulders bob up and down.  Funny kid I tell ya.


On Mother's Day he found his feet.


And a few weeks later he rolled over for the first time.


 He's also thisclose to sitting unassisted.

My big boy.  Mama is so proud. 













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