New Day

Yesterday, was a hard day. But today is a going to be a good day! Yesterday we were told some news that we always kind of half expect, but always hope and pray we don’t. It’s not as if I was blind sided as I have been before, but even with some expectancy it was still a blow.

I spent yesterday, napping, moping, crying, hugging my rock AKA Mike. I didn’t take any calls. Mike called everyone that needed calling. I cuddled Katy way past her bed time…and it made my heart happy.

Now that I have had even more time to reflect and an almost good night sleep. I realize not much has changed. Kate has a heart condition, a pretty significant, rare heart condition. It is not presenting as it should…we are already on borrowed time. (I’m just looking for a lifetime loan of borrowed time) Yesterday, I realized that, that may not happen.

But for today…Nothing has really changed. We are still in the wait and see mode. I hate the wait and see mode…Its such a hard place to be. I like a plan and with Kate and her special heart there is no plan. That’s not necessarily a bad thing. It’s not as if Kate is fighting for her life, trapped inside Children’s Hospital. She is here…laughing, running, kissing and hugging! Did I mention smiling…because my oh my her smile can light up a room! Even on my darkest scariest days!!!

So we go back to living our life, loving our girl, adoring our son and keeping each other sane. For me and Kate that means SHOPPING!! That girl loves to shop! We are going to run to Target since Kate claims it as her favorite store…(mine too) than its home to reorganize the pantry.

Because that is what we do…we live our day to the fullest.

I’m pissed at myself that I let myself waste yesterday mopping and crying and in bed. I could have been reading books, coloring and blowing bubbles.

Well no sense dwelling on that.

Kate’s Cardiac Appointment

April 29, 2010

You all know how much I dread Cardiac Clinic weeks, and this week was no different I spent a lot of time crying, worrying and even did my fear share of vomiting. 

Well today came, and my dad came to watch Patrick (thanks again Papa)  and off we went!!

We arrived at Children’s and Kate was acting her like her sweetest self…so much so that she convinced the nurse that she wouldn’t need a sedated echo.  HA!

So we head to the echo room and Kate is doing great happy as a clam in my arms.

Time to lay her on the tale…she LOOSES it!! In her defense since we were planning on a sedated echo we took measures to help make the echo as successful as possible.  Meaning we put her to bed late, woke her up early and she hasn’t had anything to eat or drink besides a sip of Pedialite at 745AM…at this point it was 11AM and she was a bear. 

So it was decided that it would be best to just sedate.  Thankfully from the measures we took, it worked quickly and within 15 miniutes she was snoozing in my arms.  I transferred her to the bed and the echo began.

After the echo and met with Kate’s cardiologist Dr. Marx. We talked about Kate and how we thought she was doing, and then he took a listen and everything looked and sounded the same.

However, Dr. Marx was very concerned about Kate’s weight.  She hasn’t gained an oz since we saw him in November.  She weighs 19lbs 20 oz. He has to assume that this is because of poor heart function.

So it was decided that Kate would have a Cardiac Cath and Cardiac MRI which Kate has had in the past and our relatively simple procedures to get pressures in her heart and look for scar tissue.  A biopsy of her heart will also be taken at this time. 

If these test show what Dr. Marx is thinking…Kate will be listed in Heart Failure and passed on to that team…meaning the transplant team. 

I know its not a surprise, I know its something we all knew and prayed wasn’t going to happen.  But, it appears we are not going to catch a break that big.

So for now we just wait and see… We really won’t know anything new until after her cath.

We are still praying for a miracle. 

 

Testing on my new blog & Signature!

Tell me what you think… about my new look.

There might be a prize in it for you ;)

Easter Egg Hunt

What a gorgeous Easter Sunday we had.  The weather was perfect.  I can’t remember an Easter when it was this nice out.  I remember Easter’s with SNOW…not beautiful Sunny 80 degree weather. 

Given our usual crazy New England weather…Easter Egg hunts growing up always took place in the living room.  Given our unusual balmy weather, Mike and I decided that it might be a nice to have the Easter Bunny hide the eggs in Papa’s yard. 

So that is what we did.  After church we headed to Papa’s to see where the bunny hid all the eggs.  Kathryn quickly got the hang of it, and had a great time searching for eggs all over the yard.  ( We actually had to re-hide a few for her)  Patrick didn’t really understand the concept, but had fun chasing his sister around. 

 

Easter Morning Fun!

Easter Morning… almost as magical as Christmas morning, just a tad more creepy.  I mean really the idea of Santa sneaking in your house, eating your cookies and leaving you a ridiculous amounts of toys that you can’t help but believe he either really does have a workshop with “elves” working in sweat shop conditions….or he robbed the Toys R Us on his way over.

Than we have the Easter Bunny…which is even creepier.  I mean this ridiculously huge “bunny” hops all over the world and hides eggs…I mean really.  What does a bunny, chocolate and baskets have to do with the meaning of Easter?!  I don’t know, but its tradition and we all know how I feel about tradition.  I love it!! Hence the powdered bunny prints leading from my front door to the living room.  Where Mr. Bunny Rabbit left Katy Girl and Bubba’s baskets that were so ridiculously full, that Kathryn thought for certain Santa must have come again.  That was until we read the letter that was left by Mr. Easter Bunny himself. aaaahhh….traditions!!!

WOW I think those gates have done a number on my door frames….time for a paint job.

 

 

K& P’s snack and letter to the bunny!

His letter back!!! Looks like he was thirsty!

Patrick after his 2nd bath of the morning.  Poor little man woke up covered in his own vomit. AHH…. It turned out he was on Day  1 of the stomach bug that would attack all of us (except Katy…you know the one with compromised immune system) Not that I am complaining.

 Dying Easter Eggs

Easter is in the top 3 of my favorite holidays…right behind Christmas and probably tied with Halloween.  One of my favorite parts is coloring the eggs…all the gorgeous spring colors.  I found a Winnie the Pooh egg dying set which included Pooh stickers and anyone that knows Kate knows how much she loves for Pooh Bear so it was a huge hit!  The one bummer was the pink tablet never really dissolved, so we didn’t get any pink eggs :( …that will teach me for buying my egg coloring kits at The Christmas Tree Shop!!

 

Ahhh…Ambien

I know Ambien sometimes gets a bad rap…but I can tell you for me…its the miracle drug.

Since I learned of Kate’s special heart…sleep has been hard to come by. I’ve never been a great sleeper and since her diagnosis sleep has just been hard to come by. I seem to lay awake and make lists of things to do…all the what ifs etc. etc.

For the last 2 years I have been getting my sleep with a Benedryl/Tylenol PM cocktail, which wasn’t working out too well. It left me anxious an restless before I fell asleep and DRAGGING in the morning. Often begging Mike to let me sleep in until 9…although truth be told I could sleep right through to noon and am embarrassed to admit I often did.

Finally, I decided that was no longer working, and that there had to be something better.

I called my doctor and set up an appointment. She was not surprised that I was wishing I could sleep until noon with what I was taking. She recommended Ambien.

Ahhh… AMBIEN! I took it and OMG!!!! I felt like a NEW woman, wife and mama!! I would up @730…before Mike and the kids and I was well rested and felt fantastic. The birds were singing the sun was shining and I felt fantastic. I was able to enjoy a cup of coffee and a house full of quiet.

My only regret is that I waited this long to take it. Yes, I worry about becoming dependent on it…but for now rest is better than no rest…life is busy with two toddlers!! I need all the energy I can get.

A Day at the Park!!

You know those puppy dog and rainbows blog post I have written about in the past, and how I said that wasn’t reality!  I was wrong!  Today at the park…( MY MOST FAVORITE PARK!) Skyline Park  Big Slide Park in Arlington…was a Puppy dog and rainbow kind of day!   We meaning me, Mike Katy Girl and Bubba! had a BLAST!  The weather was gorgeous…are picnic lunch delish… and we just really enjoyed each others company.  It was such a great day… made me feel warm all over and so thankful for my adorable little family.  Looking forward to lots and lots more days like this!!!