Chunk!!!!!!

There isn’t much to write about at the moment…great, right?  It has rained here for the last couple of days so our walks have been interrupted, but other than that, everything is “same ol’, same ol’.”  We had a quiet but very enjoyable weekend.  Uncle Paul and Aunt Natasha were up from New Jersey for the weekend. We spent Friday night with Baba, Papa, Aunt Jess, Uncle Jeff, Uncle Mark, and Aunt Nicki.  We left Katie for a couple of hours on Saturday to go out for a grown up dinner. On Sunday Uncle Bill, Grandpa Bill, Uncle Paul and I put in a new countertop, and later Nana Kim and Grandpa Bill came for dinner along with Aunt Ashley.  Get the picture?  We had a nice weekend, surrounded by family.  The cherry on top was a couple of conversations with Nana and Granda in Ireland.  We are loved…

Saturday night’s dinner was interesting.  We had a wonderful dinner, had a fantastic time with Paul and ‘Tash’, and I personally welcomed the opportunity to eat dinner with Vickie, at the same time, without a monitor to listen to Katie.  However, I had to face the reality that we are spoiled.  We had great food and great company, but by the end of dinner I was itching to get home to Katie.  Then I got to feed my daughter and we both fell asleep in the big red chair…does it get any better?

On a final note- Katie crossed the 6Kg mark today…that is 13.2 pounds!  My daughter can now share one of my less liked college nicknames-  Chunk.   She is a solid, heathly looking little girl!

FYI-  Man United were playing well but struggling to score against Bolton on Saturday.  Then I took Katie in my arms and within 2 minutes we had a lucky penalty, followed by a solid goal, and suddenly we were up 2-0.  That was the first time this year that I really held Katie during a Man United match, and it was the first time they played well…

Believe

From this…

...to this...

...to waiting to go home...

to this...

to superstar (sorry, daddy was having too much fun)

...to cranky baby

to Mommy’s little angel!!!

Time

Katie turned 4 months old on Friday.  On Saturday Katie talked and entertained Mommy and Daddy all day long.  That was two weeks after being admitted to the hospital, and one week after her frightening seizure.  It’s unbelievable.  Surreal.  To think that only 4 days ago we were in a hospital.  To think that a week ago we had a daughter that stared aimlessly at the ceiling. 

This was a perfect weekend.  Vickie, Katie, and I spent every waking moment together.  We walked on the beach, we played, we read books, we took naps, we watched Man United, but most of all we enjoyed being together.  On Friday Katie began to babble a bit, reminiscent of her old self.  By Saturday she was a talking machine, so much so that she didn’t want to go to bed last night.  All we could do was laugh.  Vickie and I were tired, ready to get some rest, but Katie wanted to talk and play.  It was heartening and an obvious indication that our daughter was on her way back. 

Katie still has a road to recovery.  She isn’t tracking particularly well and her movement is still limited, but when you measure her improvement over the past week it is difficult to bet against her.  All we have is time, and indeed it would appear that it is the journey and not the end product that is most enjoyable.  I would be lying if I said that I welcomed our challenges, but I would also be lying if I said that I would have cherished and savored this weekend as much had we not been challenged so much. 

There wasn’t a moment this weekend when Vickie and I weren’t “present” both physically and emotionally.  We didn’t do anything remarkable as a family but yet we had a perfect weekend.  I think that Vickie and I both appreciate every opportunity we have to enjoy our daughter.  We also realize the ephemeral nature of life, and Katie’s life in particular.  To that end, we want to witness every smile, hear every sound, and smell every diaper (yah, weird, I know).

Short Short

I am tired-  I am going to bed. I will write more tomorrow but know that all is well.  Katie had a superb day. She’s not back to her old self yet but today there were some very positive indications that she is making some significant headway!  Goodnight.

We’re home sweet home

“Happiness is not an ideal of reason, but imagination.” – Immanuel Kant

I like this quote.  Right now we cannot find reason in the medical events that have dictated the first 4 months of Katie’s life.  However, we still remain happy and tonight our happiness is lined with a sense of peace and rightness.  We’ve been home for about 3 hours.  The windows are wide open.  The perfect September air is filling our house.  Katie is taking a much deserved nap.  Vickie and I are sitting around, quiet, enjoying the feeling of “home.” Our family is home, together. 

Tonight is not a night to outline our gameplan moving forward or the challenges that will invariably lie ahead.  Tonight is a night to revel in the tranquility of being in our home as a family. 

(Tonight we sleep in our own bed for the first time in 11 nights…it’s going to feel SO good!)

Pursuit of Happiness

Katie was moved from the PICU to the pediatric ward today.  In fact, most people think that she is almost ready to go home.  Her heart function continues to improve and her angiopasty appears to have been a success.  The complications that came afterward are going to take longer to overcome but we are hopeful.  In a strange way, I feel motivated by Katie’s current challenges.  While I wish I never had to entertain the notion of brain damage or neurological deficiency, I can actually do things to positively impact Katie’s success with her battle of the brain. Everyday we will stimulate and engage her. Everyday we will look to support Katie’s improvements. I feel motivated and hopeful. 

Tonight was the first time we turned on a TV since we arrived a Yale over a week ago. Ironically, our background accompaniment came in the form of Will Smith and “Pursuit of Happyness.”  While our struggles are different than the exaggerated Hollywood impression of life, the drive of Will Smith’s character is what we will need to make it through this time.  Like him, I want to provide for my family, create a better life, and generally be happy.  There are so many places I need to go with Katie, so many things we have to do, so many experiences I want to share with my first born.  This distraction, albeit significant, will not deter our family from our pursuit of happiness. 

At some level, just being here tonight with my wife and baby girl makes me happy.  In reality, if Katie needs to be in the hospital then there is nowhere else I would rather be.  Long term, I obviously hope we can progress beyond these extended stays at the hospital and replace them with trips to see family in Ireland or long weekends at the cabin in New Hampshire.  For now, I will accept and appreciate where we are both physically and emotionally, but our pursuit is far from over!

The eyes are the window to the soul

Today was one of those work days.  There were no substantial progressions, no setbacks, just some minor steps on the path toward recovery.  It is very important to me that people understand that Katie is not “good” or “doing well” in the universal sense of the word.  My daughter is doing much better, she is coming on by leaps and bounds, but she has a mammoth struggle ahead of her.  Don’t misunderstand this as negativity, but instead it is a very grounded and focused perception of reality.  I am happy and grateful that Katie is in her current condition, but there is much more work to be done, both with her recovery from her recent neurological setbacks and her ongoing management of HLHS.

We met with many doctors today. By 10am I counted that we had met with approximately 6 different doctors to discuss Katie.  While the cardiology team is encouraged by Katie’s progression, neurology is far more ambigious.  In short, Katie’s brain structure, brain activity, and recent progression is encouraging.  However, some of the things that Katie is…or is not doing is cause for alarm.  Only time will tell if Katie will make a full recovery.  It is exciting to know that we can bring our sweet little girl back, but it is scary to think that we may not.  One thing is for sure- we will never stop working to bring Katie’s happy and soulful eyes back.  As the title suggests, eyes are indeed the gateway to Katie.  Before her most recent episodes, it was Katie’s eyes that really engaged people-  I want her big eyes with that unmistakable sparkle back!

In 1995 I came to the US in search of basketball stardom (it didn’t quite materialized as planned)…I went to basketball camp at UMass Amherst and first heard the phrase “refuse to lose.”  As an aggressive 15 year old I thought that this statement was biblical.  It spoke to me.  As you can imagine, I quickly moved on from the phrase, but it has resurfaced with Katie’s fight.  Vickie and I will continue to support Katie in her ongoing saga, and do our best to advocate for her.  If we all do what we can, we cannot lose.  The only way we can lose is to resign or lose faith. 

Unfortunately, there is one major loss in all of this…my hair!  I saw some pictures from a couple of years ago, a couple of months ago, and then I looked in the mirror- oh oh!  If that’s all we lose during this adventure, I’ll take it.

corkscrew…twist…turn

I couldn’t bring myself to write last night.  Unfortunately, after my last post Katie took a negative turn.  She had another significant seizure type episode that was not the easiest thing to witness.  It was certainly a jolt to both Vickie and I and a very quick reminder that open eyes and breathing by herself is a far cry from OUR Katie. 

It was a good thing that I didn’t write though because this morning Ms. Katie bounced back with a vengance.  I was playing with her on her bed when she started to respond to me…not as much as normal but certainly responsive.  It was th first “words” we’ve heard from her in almost a week.

So here we are again- cautiously optimistic, pensive about where the next turn will take us.  The funny thing is that while I was talking with Paul on the phone last night I told him not to worry b/c by the morning Katie will probably be talking…little did I know that it would be true. 

To be fair, these adventures are getting tiring.  Both physically and emotionally these twists and turns are starting to move far beyond the realm of laughable and into the world of ridiculous.   Keep in mind that Katie isn’t 4 months old yet. Keep in mind that the latest slew of ups and downs have taken place in a one week span!

She’s awake!

That’s right everyone- Katie was extubated at 2pm and has been awake ever since.  Baby steps though- we are still firmly in the thick of things so let’s enjoy the victory but understand that there is still a battle ahead (who knows how soon).

It is amazing to see Katie’s eyes again.  Hopefully, the mass amounts of drugs will fade out of her system soon and open eyes will turn into focused eyes.  The jury is still out on the damage caused to Katie from the trauma of the past week, particularly the cardiac arrest.  However, we remain hopeful and our prayers remain intense!  As my Mam reminded me when I called her with the news- while I’m sure I will have many more dramatic posts let’s give thanks for the good news we are enjoying right now…

United may have lacked fight this morning but Katie truly has the heart and soul of a champion!

no news

I’ve been waiting to put up an update until I had something to report, but even at 6pm I still lack news.  Katie has had a quiet day…a very quiet day…too quiet????  All of Katie’s numbers look good but she still hasn’t opened her eyes. While we are extremely thankful that we regulated yesterday’s issues, a slow day and waiting for her to wake is frustrating in a different way.  Yesterday, the course of action was very clear, direct, and finite.  It was difficult but it was measurable.  Today-  we wait, we look, we encourage…the ball is in Katie’s court.

We just hope she likes to play ball!