Valentine's Day 2012

Well, another holiday and you know what that means in the Kilbride house....

...decorations, Valentine mailboxes and presents from the grandparents!

There was also the appropriate attire...

After the appropriate amount of time to recover from the sugar highs they got at their school parties, we were off to the local Community Center for the Family Valentine Dance.  These kids sure know how to tear it up on the dance floor!

Trust me, this was dancing...

Isn't this sweet!

2 of the best dancers out on the floor!

This was Brendan in the middle of a big circle dance doing the chicken dance!

Rory met up with some of her friends from school..

All partied out, and ready to go home.

We had a great FAMILY Valentine's day, because it's really all about being with those you love the most, and we were so happy to be able to spend it together this year!

CHD, do you know what that is?

Four years ago I would have no idea what CHD was, now we are living it.  CHD stands for Congenital Heart Defect, meaning a child was born with a heart defect.  Sounds scary, right?  It is.

When I was pregnant with Brendan I had prenatal testing done and an amniocentesis to confirm that Brendan did indeed have Down syndrome.  After the diagnosis I had appointments every month, and towards the end of the pregnancy, every week, for an ultrasound.  Babies with Down syndrome are at a higher risk for having intestinal blockages and heart defects.  Did you know that 50% of babies with Down syndrome have a heart defect?

After all of these ultrasounds everything looked to be fine, no problems, at least that is what we all thought.  Sure enough, when Brendan was born he was everything but fine.  He was blue, purple really if you ask me, but I only saw his foot!  The truth was that Brendan had a heart defect, and the NICU Dr.'s at the hospital where he was born couldn't even tell us what it was.

The problem wasn't just that he had a heart defect, his lungs were very sick.  When Brendan was born we aspirated very thick meconium, add to that my Group B strep which I was not able to get antibiotics for prior to delivery.  He now had 3 strikes against him.

Brendan was medflighted to a hospital 3 hours away.  Bryan and I met up with him there in the middle of the night and some poor resident doctor was trying to explain what was going on.  I heard nothing that this guy was telling me, it didn't make any sense, and he also wasn't trying to hard to have it make sense to us.

The next morning, one of the most fabulous pediatric cardiologists walked into my room and sat down and very slowly explained to Bryan and I what was wrong with our little Brendan.  He presented us with this diagram of what Brendan's heart looked like.

For reference, this is what a normal heart looks like:

The big things we had to worry about was 1. the gaping hole between the 2 bottom chambers, and 2. the narrowing of his pulmonary valve.  Those are the 2 that I remember, there were 2 other defects, but I knew that those weren't the big problems at the moment.  He had a congenital heart defect called Tetralogy of Fallot, or TOF.

He took get care in explaining the defects and what the plan of action was going to be.  He knew that we were shell shocked, to say the least.  I think it took me much longer to grasp the gravity of the situation, we truly didn't know if we were going to bring our baby home, and all I wanted to do was run into the NICU next to his bed and pick him up, because a mother's arm should be able to fix anything.  I remember the Doctor walking out of the room, and I broke down because I knew I couldn't fix this and I immediately felt that this was all my fault, I could have done something different.

Many frustrating days and nights later, it was decided that since Brendan's lungs were not recovering because of his heart and something had to be done.  He was then transported to the local Children's Hospital where the hope was that a procedure in the Cath lab would open up his Pulmonary Valve enough so that he would have better blood flow to his lungs, but it wasn't a certainity.

The procedure in the Cath Lab took about 4 hours or so, but if you ask me it felt like an entire day.  I remember the Dr coming out of the room with a big smile on her face, and she said, I think we just solved our little problem for the time being.  Sure enough, the next day, we had a whole new baby, his eyes were open, he looked at us and of course we were finally able to hold him in our arms.

We had finally made progress!  We went from this on day one:

to this, about 3 weeks later:

We knew that there were more surgeries to come, just when was out of our control.

After we made it through this and Brendan's lungs were finally on the road to recovery from the worst case of pneumonia that the NICU had seen in quite a while.

6 months later Brendan had his first open heart surgery to repair the TOF.  The pictures aren't pretty..

..but 4 days later, it was amazing!

There is at least one more surgery in his future, possibly 2.  We still hold our breaths every 6 months when we have to go for the cardiology check up, and so far so good.

So there you go, now you know about just one of the CHD that strike 1 in every 100 babies a year.

Super Bowl!!

We were excited to watch the Pats in the Super Bowl this year, but since we all know how it ended...I guess I'll just show you how we celebrated!

Yes, that is a Patriots hair bow!

We invited over some of our friends, and a great time catching up and the kids LOVED having so many other people to play with!

Our favorite part of the night, was that it was the MEN who were in the kitchen with the food, and the ladies who were in the living room watching the game, the commercials and recapturing our youth watching Madonna at halftime!

Better Luck next year guys!

Father Daughter Dance

Let me start off by saying that Bryan swears he is going to blog about this....until then....

Bryan and Rory took a dance class at a local dance studio because it looked like something fun and different for a "Daddy-Rory Day".  Only after signing them up did I discover that the dance studio was one of the sponsors for the Father-Daughter dance which was a few weeks after the class!  Well, didn't I hustle on down and get their tickets!!

As you may remember, last year when the Father-Daughter dance in Kansas took place, Bryan was of course deployed, but our saintly neighbor offered to take Rory along with him and his daughter.  I can't really write more about it because I'll just start crying, but if you need a refresher, click here.  This year was different, it was REALLY a Father-Daughter dance!  It was hard to tell who was more excited, Bryan or Rory!

I took Rory out to buy a new outfit for the dance, and Bryan let her pick out what he should wear..

A stunning little couple, if I do say so myself!

Don't you just love the accessories...

And away they went!

When the got home I did try to get as many details as I could out them, but it was late.  Here are some of Rory's thoughts:

"We went on a carriage ride, with a REAL horse."

"There were like a million people there."

"Daddy and I danced and twirled, and then my shoes just couldn't stop dancing."

We are hoping for more pictures to come from the "official" photographers at the event...stay tuned!

The father-daughter dance was executed to perfection through Maura's expert planning and my diligent execution. We arrived at the dance skipped the line since Maura had pre-purchased tickets  and we immediately took our scheduled carriage ride. From the carriage ride we went to the photographer. Once complete we made it to our table and just sat for a couple minutes and took in the scene, hundreds of father and daughters just laughing and dancing. It was like all the arguments, frustrations, fear and anxiety shared between fathers and daughters was replaced with only smiles, hopes, and dreams.

Rory was a little apprehensive at first with a big crowd and loud music but one cupcake later were on to the dance floor and there we stayed all night with the exception of two breaks for punch.

All in all a great night of memories were made memories that will define our always unique father-daughter relationship.

Did you wear your red today!

It's heart health awareness day, so it was time to bust out the red in honor of Brendan!

The kids wore their Patriot shirts to school, I'll have to grab a picture later!  We can support 2 things at once!

If you didn't wear red today, you can wear it next week as next week is Congenital Heart Defect Awareness week!

Groundhog Day

Well, for some reason 2 years ago I decided to make a big deal about Groundhog day, I think it was because I found a cute craft to do.

Fast forward to today...actually February 1.  Rory was at home still recovering from getting her teeth pulled the day before, and I had mentioned to her that the next day was Groundhog day, and her face lit up.  "You mean I don't have to go to school?", "Oh no, you are going to school!" I quickly replied.  Then she asked if we were going to do anything fun like we normally do, and I told her that I hadn't planned on it...well I might as well have told her the truth about Santa Claus.

To beat the depression about no Groundhog celebration, she collected her things, packed up and made a map.

She was off to find the groundhog holes herself!

Well, after that how could I not do something...so this is what I came up with..

Groundhog doughnuts!

Look at those happy faces as they found their Groundhog day surprises!

Of course we had to watch the live streaming coverage of Phil!

The funniest part of the day was when I picked Rory up from school and we talked about her day and she was shocked, shocked I say, that no one else in her class had Groundhog doughnuts!  Nope, sorry Rory, only your nutty mother would do something like that!

She came!!

It was a pretty day big in our house....the tooth fairy was making her first visit!!

About a month ago Rory had been complaining that he bottom teeth hurt, I was hoping that it was just the natural teeth movement and that we would soon have a wiggler!  About a week after the first complaint of pain, there was another complaint, and this time when I checked, sure enough there was a tooth coming in just behind her baby teeth...aggghhhh!!  We got into the dentist for the regular 6 month check up, and that's when the Dr. said the word..."Extraction".

I thought Rory was going to burst into tears, be asking about needles, etc...but she was so excited!  Her exact words "The tooth fairy is going to come for my 4 teeth, and maybe she'll leave me a big diamond ring!"  The dentist almost fell off his chair!  He said in all his years he had never heard that one, well he had never met Rory!

The big day came, and Rory was still all excited about the tooth fairy coming, and the money (maybe $2) and the big diamond ring!  Even in the car ride over she was still excited, just a little bit nervous, but it was nothing I had expected!

Look at that smile, would you think that she was about to get 4 teeth pulled?

When the time came, the hygienist came into the waiting room, called her name, and off she went...she never looked back!

When she was all done I wasn't sure that she was going to speak to us again..the cotton in her mouth, the the little scratch down her chin from when she flinched when the gave her the Novocain, and just that sad drugged look in her eyes.  Bryan carried her out to car and that's when the tears started, and then stopped.

Once we got home she just lost it, and I have to say that the first time you have your mouth numbed it is pretty freaky!  Poor girl just wanted it to be over and wanted to be able to feel her bottom lip and not the entire glass of water spilling down her shirt!  The gifts that we left for her on her bed went a long way to getting over the "weirdness" of the situation.  If I was her, the new Barbie car and Treasure Buddies movie would have helped me too!

Later in the afternoon once the feeling had come back in her mouth and the "blooding", as she called it, stopped, our girl was back and wanted me to take some pictures!

It is really crazy how you can see the adult tooth right there, and the second one should be in soon!  Good thing we made some room!

Bedtime finally arrived and the special Hello Kitty tooth fairy pillow safely held her 4 tooth, and she was off to dreamland.  A check on her later that night revealed a handwritten note to the Tooth Fairy on a tissue!  She wrote her name, and told her that she had not 1 but 4 teeth for her and how much money would she leave for her..ha!!

When she woke up the next morning she came running into the playroom where I was getting Brendan ready for school and said "I know that she did not leave all of this for me!"

There was a $5 bill and a very special $1 coin, a handwritten note and the biggest diamond ring ever!!  The ring was by far the big thrill!  The HUGE diamond made all the pain a little easier to deal with!

It's times like these that I know that she is growing up, but I hope that she still believes in all of these magical things for just a little bit longer...