Friday, August 31, 2012

Wins and worries...

Ronan has had an amazing past few weeks and months.  It is as if he decided he feels safe, he feels healthy, and he is really going to push himself.  In the last month, Ronan can pretty much sit on his own for long periods of time.  I'd say indefinitely, but he hasn't learned how to catch himself or get in and out of sitting, so we have to be right there with him (or have some pillows in the area).  Ronan has gotten good enough that our PT told us to stop practicing sitting and move onto other areas!  That is a big vote of confidence coming from our PT, who is always cautious.
One area that has been of growing concern for us, has been that Ronan hasn't shown much interest in picking food, like puffs, up and putting it in his mouth.  He typically doesn't put a lot of things in his mouth, which may sound like a good thing.  In reality, this is a valuable skill that Ronan was not practicing.  It got to the point where our PT actually mentioned something this past week to us.  In true Ronan fashion, he was apparently on his own time.  I always put a few puffs in front of him, but the best I've done has been for him to eat them off my hand :)  Anyway, when I was feeding him yesterday, I was taking too long for him to get him another spoonful of his food.  Ronan casually reached over, picked up a puff, and put it in his mouth!  Then he proceeded to do this with the half dozen other puffs in front of him.  I know this doesn't seem like a big deal, but it really is.  It shows a lot of various motor skills (pincer grasp, picking food up and putting it in his mouth, chewing, and general coordination).  He also ate them without gagging, which is a genuine concern for us given that choking is the leading cause of death in CHARGErs after their first year.

Lastly, our little Ronan is babbling up a storm.  Not only are we getting the ma-ma-ma-ma and da-da-da-da's, but we are getting him stringing together different contestants and vowels.  It is truly amazing to listen to, considering his hearing loss.  This past week, he has also shown more of an interest in noisy toys.  Specifically, he wants to play with Sofie the Giraffe, and squeak it.  He has never played much with toys that only make noise, usually there has been a visual component.  I am actually more motivated now to repeat his ABAR test.  I'm curious with his increased interest in noisy toys if his hearing loss has changed.

On to my worries...  When Ronan was first born, I distinctly remember seeing this bluish tint above his upper lip.  I (and others) brought this up several times, only to get, oh it's normal, don't worry.  Later, we'd come to find out it was our first indication that Ronan's oxygen saturation ("sats") were not the normal upper 90s - 100% (not crying).  This was the first indication of his congenital heart defect.  Recently, Paul and I have noticed this bluish tint creeping back every once in awhile.  Teething can lower a child's sats, which Ronan is definitely going thru, but it is a worry nonetheless.  Paul and I are getting a pulse-ox monitor so we can establish a baseline.  Often with heart babies, a deviation from that baseline is the first indication that there could be an issue.  This can come before noticeable changes with behavior or coloring.  Our next cardiology appointment is in October.  We will be following up with Dr. A if we continue to see this color change.  Keep Ronan in your thoughts and prayers, please.  He has been making so many strides this past month or so, I would hate for him to have to take some steps back! 

Wednesday, August 15, 2012

Happy Birthday Ronan!

Dear Ronan,
Happy birthday to my little baby boy!  You have had quite a year, enduring more than most will ever know.  I've been thinking a lot about the days leading up to your birth.  About all the hopes and dreams that I and your dad had for you.  We wondered what you might be when you grew up.  What college you would attend.  What sports would would like to play, and how big of an Ohio State fan you would be (because you would have to at least like OSU a little!)  We wondered what traits you would get from each of us.  We had all these discussions about what type of parents we wanted to be.  We didn't want to worry with every fall.  We wanted to let you be a kid.  Most of all, we wanted you to be happy, and to know how much you are loved every second of every minute of every day.

I was almost a little sad when we went to the hospital.  For 9 months, you and I shared this special bond, and now I was sharing you with the world.  But I was so excited to meet you, and so was your dad.  And then you were shared, and our love was exponential.  You were this perfect baby boy.  I remember holding you thinking, I can't believe you are all ours.  I can't believe we get to take you home and love you forever.  And our hopes and dreams multiplied. 

Then, in an instant, our world seemed to stop.  You were whisked away from us, and off to the NICU.  Doctor after doctor came to see us, telling us all these scary things that no new parent should have to hear.  Our hopes and dreams changed to simply, please just let us take this little baby boy home.  Please let us care for him and love him.  Please let him live. 

From your first day, Ronan, you defied the odds.  Each time a doctor told us something, you showed us that you wouldn't be underestimated.  You would not be defined by a diagnosis.  If only we took those early signs to heart - as your parents we were very worried.  Our lives as we thought they would be were forever changed.  Rather than worrying about nursery decor and what types of bottles we were going to use, we were worried about finding the best specialists and what type of open heart surgery you would need.

Ronan, you inspire me.  We expected to be in the NICU for quite some time, but you sprung yourself in under a week.  You were supposed to have open heart surgery within a few days of your birth, but you went 6 weeks before needed it.  I could go on and on.  I will never take anything as set in stone anymore, I will always have hope because of you.  Our perspective on parenting is so much different now.  We are kinder, gentler souls, I believe.  Our marriage is so much stronger now too, because of you.  Your dad and I are the ultimate team, with you as our newest member.  We also hold the record of "fastest MD", earning our medical degrees from Google within weeks of you being born.  We now educate our doctors about you.

I know that in this next year Ronan, you will continue to amaze everyone around you.  Your development has literally exploded these last few weeks.  It is as if you have said, OK I am feeling much better now, now I can really start to do things.  Today someone half complained that you were babbling too much and that you were likely to become a politician.  Inside my pride nearly burst, I was thankful for what I consider to be a compliment considering your hearing loss.  I wanted to tell her all the things you had to do to be able to babble like that, but I just gave her a smile and told you to keep it up.

And now our hopes and dreams have changed again, little Ronan.  We see your determination, your will.  Our hopes and dreams for you are now coming back.  We wonder about your first day of preschool.  We wonder what activities you'll like in high school.  Will you play guitar like your daddy or piano like your momma?  Will you like to run like your momma and daddy?  Will you embrace our sunny, Santa Monica lifestyle or move away to New York City when you get the chance?  We feel like for the first time we can breath again.  It is scary for us to shift our focus, but it is time.  Just as you have grown, we need to too.

Keep it up, Ronan.  Fly high little boy.

Love, Momma and Daddy

Thursday, August 2, 2012

Welcome to Holland

I mentioned this past week that there were two poems or stories that really touched me when I was starting this journey with Ronan.  Welcome to Holland was the other.  Paul and I could really identify with the story, especially given that we had no idea that there were any issues with Ronan.  When we went to the hospital, we fully expected to bring home a healthy baby, not to come home without our little boy.  It still makes me cry thinking about that awful moment of walking out of the hospital without my little baby. 

We also identified with the part describing how we weren't in this awful place, it was just, simply, different.  Raising Ronan will always be the highlight of my life.  And even though we thought we were going to Italy, I think Holland is our favorite place. 


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.