8.30.2012

a daddy is born

From the moment that we found out I was pregnant, I knew Seamus would be a good father.  Scratch that.  From the moment I met him, I knew Seamus would be a great father.  

There are a lot of things in life that Seamus strives for, but I think that if you ask him what it is that he wants most, his answer would be simple.  To show his kids what it's like to have a wonderful father.

Seamus took care of A&R long before they were born.  When I was pregnant, he made sure I ate my steaks to get enough iron in me for the boys.  Even though I hate steak.  Gasp!  Yes, it's true.  I prefer chicken :).  He took me to all my doctor appointments, and was over joyed every time I had an ultrasound and we were able to get a glimpse of our precious boys.  When I was put on bed rest at home, he woke up early before work to get me set up for the day with food, drinks, magazines, and my work.  And when I was admitted to the hospital, he stayed with me and slept on a recliner for five days straight.  

After the kids were born, the first thing I asked him was if they were alive.  When he told me they were ok, that was all the reassurance I needed.  I was afraid to go see them in the NICU, and it was over 12 hours after I gave birth that I finally got the courage to go meet them.  He is the only reason I was strong enough to go in there.

First time holding Ryan




First time holding Aiden

 Over the next 4.5 months, he was our rock.  He was strong and gentle when we needed him to be.  He was funny and patient, and let us cry.  He was everything we needed at all the right times.  He bore a heavy load during our time in the NICU.  And we will never forget it.  I say we, because although I'm the only person who will remember what Seamus did for us, A&R needed him too.  And he got them through it and they came out on the other side.  

Nicu fun
When we were finally home, together under on roof, Seamus jumped into fatherhood immediately.  From feedings and diaper changes to cuddles and tummy time.  He did it all.  And continues to.  He makes sure the kids get their daily therapies, he sings and plays the guitar for them.  He challenges them in ways I wouldn't know how, and he loves them something fierce.  I am proud to call him A&R's father, and they will be too. 




8.25.2012

11

Today, my loves, you are 11 months old.  I really don't know where the time has gone and it's bittersweet that our moments from the past must stay there.  We've become comfortable with our daily routine: our therapy, our meal times, our snuggles, our doctor's appointments, and our giggles.  And before I even blinked, you're almost a whole year old.  I'm so proud of where you are today and I'm excited to see you grow and learn and turn into little men.  I'm sorry that I waited so long to start writing about our memories.  I may not have any words to give you for the first 10 months of your life, but I have tons of photos.  Photos that will forever bring us back to those early days...your first smiles, first laughs,  first coos.  Naps on our chests.  Daily late night feeds.  And sweet, sweet morning snuggles.  Thank you for coming into our lives and showing us what really matters.  We love you to the moon and back.  Forever and always, our little boys you'll be.


8.15.2012

holidays in the NICU

When the kids were born, we knew we would be in the hospital for a long, long time.  We expected them to be discharged around my due date, which was January 6th and we relied on holidays to help the time pass.  As far as we were concerned, we just had to get through Halloween, Thanksgiving, Christmas & New Years, and the kids would finally be home. 

Halloween was our first holiday as a family, a little over a month into their NICU stay.  We couldn't believe the kiddos were already over 4 weeks old, and it turned out to be such a spectacular day because I was finally able to hold my little Ryan.  And little he was.  I was so, so nervous that I would hurt him.  He was barely 3 pounds and he just had his first surgery a few days prior.  But the moment the nurse laid him on my chest, all those unsure feelings melted away.  The moment I was allowed to cradle and comfort my child....that was the moment that I became a mother.  It was a moment that would replace all the sadness and grief I felt from not being able to hold any of my children soon after birth.  He stirred and fussed for a few minutes, but eventually he synced his breathing with mine, and fell asleep.  I held him for an hour that day.  It was the proudest hour of my life. 



Another month passed and it was Thanksgiving Day.  We sure had a lot to be thankful for, and believe me, we knew it.  It was so odd how time would seem to pass by so slowly, but once we hit another holiday it would seem to have flown by.  Time has a way of sneaking up on you like that.  We often talked about how we couldn't wait until A&R would finally come home but more often than not we stopped ourselves so as not to wish their lives away.  It's so important to remember that time is precious and life is precious.  And no matter how hard or trying it is, we must learn to appreciate it.  Take the good times with the bad.  

We cooked some food for the nurses and visited with our boys, who were finally allowed to wear clothing.  Big NICU milestone, by the way.  Seamus picked out their little shirts.  We took some photos, thanked our lucky stars, and headed off to Thanksgiving dinner with the family.


Christmas finally drew near and it was so bittersweet for us, because while we made it through three months in the NICU, we half-expected to be home by now.  It's so tough when everyone says that baby will go home by (or even a few weeks before) his due date, and it doesn't happen.  But, and this is a big but, we were so, so grateful to have made it this far.  Being in the NICU meant that we were the lucky ones.  We tried so hard to remember this and we really made the best of it.  We bought A&R each a little tree to keep near their bedside and we got all dressed up in our holiday best.  We were there pretty late and it was so quiet.  It was our first Christmas together and it was absolutely perfect.  



Finally, after 90+ days, we reached the New Year.  A year that would mark a very important time for our new family.  A year that would bring health & happiness, and would allow us to live as a normal family does.  Though we didn't know how much longer our NICU stay would be, New Year's Eve marked a new beginning for us.  There was no need for New Year's resolutions, promises to ourselves that we would inevitably break.  No, this year was different.  This year we had our babies, and from the moment they were born we resolved to care for them and love them like no other.  And that we would do. 

We got ready for this important night and timed our visit to the NICU so that we could welcome the New Year with our boys.  It was the first time in 10 years that Seamus and I didn't ring in the New Year together.  Our boys were in separate rooms, and it was more important for each of them to have one of us instead.  The nurses served sparkling cider and we found a live feed of the ball drop on someone's laptop.  We counted down the seconds, like we'd done every year before, and as the clock ticked and a new year was born, so was the promise of a wonderful life for our children.  And that they will have.













8.11.2012

one and one

For 5 1/2 months, A&R shared a space.  A warm & comfy place.  Right in mama's belly.  Right where they belonged.  Safe and together.  That's where they first met, and that's where they plotted to poke & prod, and kick and do somersaults.  Oh how I loved those somersaults. 
  
Their first 'inside' picture together
When the kids were in the NICU, Seamus and I would constantly talk about the day they would both come home and we would be a complete family under on roof.  That day always seemed so far away, and as we sat on the couch or in bed talking about a day that was still just in our imaginations, I would always say that all I want is my 'one and one'.  Both A&R are my number ones.  No one is number two.

For the first 4 months of their life, A&R were separated.  I would always hear about the amazing bond twins have, napping together, louging together, and I was always saddened that my boys were missing out on that.  I wondered if they even knew each other existed.  I read preemie stories about how one twin's presence immediately made the other twin stronger.  It tore at my heart each and every day to have them separated for so long.  But that was protocol at our NICU. 

A few days before Ryan was discharged, I chatted with some of the nurses about how we would love to see our boys together again.  Our wish came true.  The day before Ryan came home, he got a new roommate.  His bro-bro.

Their first outside picture together
The next day they were separated again, when we left the hospital with Ryan.  Aiden actually cried the whole time we were filling out our discharge paperwork.  It was so, so sad.  I'll never forget his nurse that day, who proudly picked him up and soothed him to sleep, so that we could take care of business.

After what seemed like an eternity, Aiden came home two weeks later and we were complete. 
 
Their first 'at home' photo together


Once we were all home, I still had irrational fears that A&R would grow up and not like each other.  Maybe it was trauma from our NICU experience, or maybe it was the Dr. Phil epidose I saw that showed identical twins who hated eachother (for real!), but this fear was there and it was very real for a very long time.  Silly I know.  But I couldn't help it.  

Twin tummy time

Happy St. Patty's Day

so happy together...
Those feelings stayed with me, for a long, long time.  Until a few weeks ago, when I put A&R on a blanket on the floor for some play time, and I went upstairs to brush my teeth.  All of a sudden I heard Ryan laughing.  The kid was cracking up.  I ran down to see what was so funny, and I found Aiden kicking Ryan in the head.  And Ryan loved every minute of it.  It was at this moment, that I knew my boys would be ok.



As the days go on, A&R are becoming more and more aware of eachother.  They laugh and smile, and give each other inquisitive looks.  And every day, my irrational fear is slowly being erased.  I'm beginning to realize, that while I sat there worrying whether my kids would like eachother, they already had a bond that no one could break.  Because they were brought into this world with a best friend.  And they will do great things together. 




8.06.2012

go go go

If I could describe our weekend in three words, they would be go-go-go.  

Saturday morning we decided to visit the boys' first home, the NICU.  It was so surreal driving there, taking that familiar route that we took every day, twice a day for 4 1/2 months.  Only this time, we did it with our boys.  On the drive, we talked about some of our most vivid memories.  About how their NICU stay seems like a lifetime ago, but really we've only been home for half a year.  As we entered the hospital grounds, we made that familiar right turn, and played our game where we give the driver in front of us points for doing something stupid and dangerous :)  I think this guy only accumulated two points though.  Not too bad.

I had butterflies.  I was excited to show the nurses and doctors how far the boys have come.  When we the got there, I went inside and Seamus waited in the hallway with Aiden and Ryan, since babies aren't allowed in the unit.  It was eerily quiet.  I wasn't faced with that familiar hustle and bustle of the NICU that I so clearly remembered.  It was peaceful.

We visited with one doctor (the Dr. who discharged Ryan) and two nurses.  Not the visit we were hoping for since we didn't see any of our favorite nurses, but it was nice nonetheless.  We later found out that the NICU has been quiet and they don't have many babies living there right now.  I couldn't decide if this was a good thing, or a bad thing.  

We stopped for photos on our way out of the hospital

We will never forget this painting.  It's near the elevator.  And we stared at it every.single.day

 Later we went to A&R's friend Robbie's first birthday party.  The theme was something about a little man, I think?  Sorry Robbie, I'm not so good with baby characters yet.  It was so cute, and Aiden sported a mustache the whole time.  Ok I lie, he cried when I put it on him, but I was quick enough to snap a photo.

He didn't cry for long.  I promise.

Aiden has a new girlfriend.
On Sunday we woke up early (duh, we wake up early every day) and we geared up for a visit with A&R's cousin Liam.  Liam and the boys played, while the adults (males only!) cleaned up our yard in preparation for some work we're having done this week.  

Our yard now

Stay tuned for 'after' photos
 Later we had a rib-off.   In the interest of remaining neutral, I won't tell you whose ribs I preferred.  I'm beat man.  But the boys did let me sleep a little longer this morning.  Thank you A&R. 

Morning bottle

Happy baby <3





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. 













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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