"I pray you'll be our eyes and watch us where we go.
And help us to be wise in times when we don't know.
Let this be our prayer, when we lose our way.
Lead us to a place, guide us with your grace.
Give us faith so we'll be safe." ~ Celine Dion
Let this be our prayer, when we lose our way.
Lead us to a place, guide us with your grace.
Give us faith so we'll be safe." ~ Celine Dion
The words of one of my favorite Christmas time songs. Wow does that song have different meaning to me in all of the years I've been listening to it. In a
season that makes you think of the things you are thankful for,
this year seems different for me than any other year. We sure have a lot to be
thankful for. I can’t even believe that it has been a year since Kellan was born. I’ve been thinking a lot about that time lately as his
1st birthday approaches. And that’s where I’ll start…..
It didn't
go as I expected, it wasn’t what I had hoped….the joyful first cry you wait to hear
didn't come from my sweet boy. The idea of letting my
newborn lay with me in his first few minutes of life….the moment I had been dreaming of for months, ok, probably years wasn’t happening. I am a planner,
that was my plan and in an instance my plan was changed. Our nameless baby
wasn’t making any noise at all. The plan of naming our baby boy once we saw
him was now just a thought, another one of my plans that changed quickly.
It seemed
surreal listening to the nurses looking over him calling the NICU in a panic. As
the NICU nurse arrived, she handed me my baby and stood over me saying, “You
can hold him for a couple of minutes and then we need to take him down to the
NICU.” What? No? This wasn’t in my plan. As Brett and I sat there staring at
our baby, his sweet yet swollen eyes staring back at us barely open, I couldn’t
believe this little miracle was finally here. At that moment nothing else
mattered in the world, not even the unexpected nurse standing there anxiously
waiting to take him.
I had just
met the most amazing little man. All my hopes of those first few minutes after
his birth had changed, but it didn’t matter. We finally had our little miracle.
I was told I could see him when I got feeling back in my legs….4 hours later, I
was finally wheeled to see my baby. Thankful I have spent hours in the NICU with my nieces, Maeve & Maryn, I knew what to expect.
I didn't for once that night think poor me or why doesn't he get to sleep with us or why is this happening this way. All I cared about was that he was safe and being watched by nurses and doctors. I just wanted him to be ok. Little did I know what his life was going to look like at that point. Little did I know how much that feeling of just wanting him to be ok and doing whatever it took to make that happen was really going to mean. I did know one thing for sure, I loved that little man that I only got to hold for a mere minute more than life itself and I'd do anything for him.
I didn't for once that night think poor me or why doesn't he get to sleep with us or why is this happening this way. All I cared about was that he was safe and being watched by nurses and doctors. I just wanted him to be ok. Little did I know what his life was going to look like at that point. Little did I know how much that feeling of just wanting him to be ok and doing whatever it took to make that happen was really going to mean. I did know one thing for sure, I loved that little man that I only got to hold for a mere minute more than life itself and I'd do anything for him.
As this year has gone by, I have had to learn that hopes and dreams do have to change. A pretty hard concept to comprehend until you are forced to do it yourself. I will never forget
that April day sitting in the Genetics Doctor's office with my sister, Brett,
and my little baby snuggled in my arms as they slapped (or so it felt)
the paper down with his diagnosis and the list of things to expect. My little
angel, too perfect for words and my world just turned completely upside down. I
never want to go through a day like that again.
But here we are, about to celebrate our baby's first birthday. And though that day it felt like the world had crashed down on me, never in my best and greatest hopes and dreams did I imagine the happiness that Kellan would bring us. It hasn't been easy, some days have been rough to put it mildly, we have spent far more hours at Children's Hospital than anyone should in a lifetime, but he is Kellan. Perfect in our eyes in every way.
But here we are, about to celebrate our baby's first birthday. And though that day it felt like the world had crashed down on me, never in my best and greatest hopes and dreams did I imagine the happiness that Kellan would bring us. It hasn't been easy, some days have been rough to put it mildly, we have spent far more hours at Children's Hospital than anyone should in a lifetime, but he is Kellan. Perfect in our eyes in every way.
He has shown us what true love and happiness is every single day since he entered this world, regardless of what we have to put him through that day. His smile will light up a room and like my best friend Shay just said to me, "He [Kellan] only gets cuter when you actually meet him." I couldn't agree more!
I will take this opportunity to thank everyone that has shown us support in the past year. I am amazed at the people that reached out to me on different occasions to let me know they think about us, pray for us, and love Kellan even if they have never met him. We are thankful for so many reasons. Kellan has taught me some invaluable lessons and I owe him the world for that.
We've had a busy December squeaking in last appointments for the year. Here's where we were at....
We've had a busy December squeaking in last appointments for the year. Here's where we were at....
Opthamology – We went it
for what will be his routine check up each year to confirm that no cataracts
have formed since he is at high risk for them because of his deletion. We’ve
always noticed a twitch in his one droopy eye, but never thought
anything of it. The appointment was heartbreaking. They had to patch his good
eye to see what he would do when his droopy eye was the only one to see. He of
course didn’t like the patch, but it was clear he couldn’t see well out of
it. The twitch increased dramatically and he looked around acting as if he was
blind. I felt terrible for him. The treatment for now is that he will be
wearing a patch for 1-2 hours per day for the next 2 months. Our hopes is that
making his droopy eye work harder will strengthen it and avoid having
to get glasses.
Of course, he was the hit at the appointment. There were 2 nurses working that day, the first nurse asked if she could hold him only because she thought he was so cute. Later in the waiting room (we were there 2 hours), I heard her whispering to the other nurse, “that baby is just the sweetest, he has the best disposition.” That made me smile when I felt like crying!
Of course, he was the hit at the appointment. There were 2 nurses working that day, the first nurse asked if she could hold him only because she thought he was so cute. Later in the waiting room (we were there 2 hours), I heard her whispering to the other nurse, “that baby is just the sweetest, he has the best disposition.” That made me smile when I felt like crying!
GI - Oh happy mamma after the said eye appointment. Our "little" guy is getting big! For the first time ever, he is in the 10th percentile, weighing in at 17lbs 14oz. SO exciting! This news means no feeding tube for at least another 4 months!
