Katy Girl Update

Yesterday was a big day for Katy.  She had a Cardiac Cath.  The first one she has had since last year, when the results landed her on the transplant list.

Yesterdays cath brought GREAT news…

NO new damage to her heart or lungs!!! 

I was eerily calm heading into this surgery.  I usually (as you know if you have read any of this blog) a hot mess leading up to Katy’s appointments.  For whatever reason I wasn’t this time. I think I just knew that there was nothing that could be worse than last year! 

It was a long day (15 hours) but we avoided an admission!! Which is always a good day in my book.

Kate was supposed to be first case, but was bumped for a very sick baby from the CICU.  It’s hard to get upset about being bumped when you know the circumstances.  We are just thankful that Kate is well enough to be bumped.

She was handling the delay OK (considering she was probably starving) 

They finally took her back around 11:30 after giving her some loopy juice, Mike walked her back to the Cath Lab.  Once she was settled . Mike and I grabbed a bite to eat and went back to see her at  around 2pm.  Katy was very agitated and was having a difficult time coming out of the anesthesia.   Which was difficult since she needed to lay flat for 5 HOURS.  As a result of her being upset she kept lifting and thrashing her leg, and complaining that her incision was hurting (my boo-boo is hurting) she had disturbed the clot and was bleeding.  I came back from the bathroom as the nurse was calling for the fellow and for anesthesia.  There was a lot of blood (probably looked like more than it really was) They gave her more meds to relax her and they were able to stop the bleeding by applying pressure for about 30 minutes.  After that episode, amazingly Katy was able to lay flat and watch Disney movies for 5 HOURS.  I still can’t believe it.

She then needed to have a chest x ray and then we were released at 9:15pm.

It’s hard to believe that we are quickly approaching the 1 year mark since being listed. 

Thanks for your continued prayers and support.

 

2010 in Review

Oh, 2010 I am so happy to pack you up and KICK you out the door!

2010 wasn’t all horrible, it actually had some pretty awesome moments. I grew as a person, wife, mother, friend and daughter. I was challenged and faced with obstacles I NEVER thought I would face. I rewrote my hopes and dreams. I prioritized what was really important, and what was not. I learned that I am a fighter and I can and will do whatever it takes. I learned to rely on others and accept help. My faith in humanity was renewed. I learned who my true friends are and those who were not. ( I need another word for learned)

I met some amazing people, some of who I never physically met, but who have prayed for us and got me through some dark times. I reconnected with some family, that have proven to be a huge source of comfort and support. I loved my family more than I thought was humanly possible. I stopped to soak in the moment…be it bath time, story time, dinner, or late night cuddles with my husband. I ‘ve learned that sometimes I just need a day to cry and be off, and that its OK for those days to happen, but not to let them consume me.

So really I have a love/hate relationship with 2010. I think 2011 is going to prove to be just as trying, in a whole new way. Regardless, 2010 has given me the knowledge and strength to take whatever 2011 has in store.

January

Patrick turned one!

February

We took Katy to Disney on Ice on Valentine’s Day

Mike and I celebrated 8 years of marriage

March

Katy started drop off play group with early intervention

We visited our cousins in NH for St. Patrick’s Day

Patrick had his 1st hair cut

April

Katy fell at the playground and ended up with 1 staple in her head.

May

We celebrated Logan’s Birthday Party

Another wonderful Mother’s Day

Mike surprised me with a trip to visit my Auntie Cheryl

Patrick and I headed to North Carolina

Lots of Bbq’s for Memorial Day

June

6/1/10 Our world was rocked to it’s core. Kathryn has a Cardiac Cath and MRI on the 1st and the results showed that her special heart was failing and her care was passed on to the Transplant team at Boston Children’s Hospital.

Mike celebrated his 52nd birthday with family and lobsters!

Katy fell and needed stitches.

July

Patrick said Katy!!!

Katy had an NG Feeding Tube placed

Katy was listed for a heart, status 1b on the 29th of July

August

Keys for Katy benefit at The Shannon Door was a great success! Still so very Thankful!

Make A Wish came out to grant Katy’s wish to go to Disney!

Back to NH to visit with Cousins and celebrate our newest cousin Nia’s Christening.

We celebrated Sierra’s 1st Birthday

Katy had G Tube Surgery

Patrick fell and ended up needing 5 staples in his head.

1 month on transplant list

September

Katy’s story is airing on local radio stations and in many newspapers

Amiee celebrated her 30th BIRTHDAY

Katy’s Make A Wish trip to Walt Disney Word

2 months on transplant list

October

WBZ 4 did a story on Katy

Our cousins hosted another benefit for Kate! Great to have so much support and love!

Katy gets G Tube infection

We lost one of our favorite aunties! RIP Auntie Cheryl

Katy and Patrick were Mickey and Minnie for Halloween!

3 months on transplant list

November

Quite month

Thanksgiving celebrated with family and friends!

4 months on transplant list

December

Katy had G tube surgery again… peg to Mic Key NO ADDMISSION

Katy turned 3 and had just as many birthday celebrations!

Katy’s tube infected AGAIN!

Christmas was AWESOME!

Blizzard of 2010 was spent at Auntie Krissie’s complete with sleepover!

Disney Princess’ on Ice

5 months on transplant list.

Our year in photos:

Customize your own free digital slideshow

From our family to yours I hope that the new year makes all your dreams come true ( or a few anyway)

Much Love,

Amiee, Mike, Katy & Patrick

Katy Update

Ok, I know I owe you an update of our break from reality…and it was a wonderful break, and I can’t wait to relive it with you when I blog it. ( CAN’T WAIT) But, the truth is its going to take me a few days to catch up, upload and edit all the pictures. I am half way through that job.

Anyway…we came back to reality with a clinic appointment first thing this morning…ugh. With both kids in tow, which never makes for an easy day. On top of that our cardiologist Dr. Blume was on vacation so we saw Dr. Singh (another transplant doctor) We discussed our concerns, Katy’s lack of appetite, lethargic and so on and it was decided that, yes it is time to have a G tube placed. Much to my dismay. It’s time. Mike and I have always said we would do what was best for Katy… on Katy’s time table and we both believe it is time.

This was a very difficult decision for me. I have shared in the past my concerns regarding Katy and the G tube. Somehow I was more comfortable with her having open heart surgery, transplant etc. etc. then having a damn feeding tube.

I think for me and for a lot of mom’s…our job is to nourish our child. We nourish our sweet babies, when they are growing inside of us, that is our first real responsibility when we learn we are with child. Then when our sweet baby is born we anxiously await for our milk to come in…giving our babies that 1st but most important colostrums or in my case with Katy…pumping it and drawing it into syringes, to be saved for her.

We then nurse our babies, anxiously awaiting to see there numbers on the scale… scrutinizing their dirty diapers. Sending your husband out to 4 different stores to get the Fenugreek to increase your milk supply ( and makes you smell like maple syrup)

You video them the first time you introduce them to sweet potatoes, you squeal in delight when they have a Ritz cracker. You cut each and every teeny tiny grape piece, in an effort to keep them from choking.

You introduce them to new foods, you watch them grow and thrive.

As hard as Mike and I have tried we can’t do all things we are supposed to, to get Katy to grow and thrive. We have done them and more, and its just not enough. It breaks my heart to say that.

So we are making the decision to do what is best for Katy…. and at this time that means another surgery and placement of the G tube so that Katy can grow and thrive and be as healthy as possible for when her sparkly new heart arrives.

So much to my dismay…Katy came home with another NG tube today while we wait for a surgery date.

Also, as you may know I have connected with a heart family Gabriella & her mom. Gabriella was given the gift of a new heart 3 months ago, and is doing great. Her mom has recently connected with her donor family. Amazing story on her blog.