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Tuesday, February 12, 2013

THE Call…

[I have started to write our journey to Katy’s new heart and what the last 2 weeks have been like… but its too much.  I have no choice but to break it up.}

February 12th was an pretty ordinary day for our family.  Mike and Katy headed in to Boston for Katy’s Pre Op appointments for her cath that was scheduled for the following day February 13th. I was home with Patrick finishing up some orders and relaxing… the impending Cath was weighing heavy on my heart. 

At around 12pm my phone rang with a Brookline number (Children’s Hospital number)  2 years ago my heart would have skipped a beat today not so much.  Depending where Mike is in the hospital his cell reception is spotty at best.  So I figured he was just calling to check in.  So I casually answered the phone…

Amiee “Hello”

Mike: ”Hey babe, you’re on speaker phone.” I’m still not thinking that  this is strange. 

Dr. Blume: “Hi Amiee” hmm… ok that’s weird.  Still not thinking that this is THE CALL

Katy: “Hi Mama, I’m gonna muffled muffled plant tonight”

Amiee:  “Hey, Baby what did you just say?” kind of beginning to freak out

Katy: Mommy. I am going to get my heart transplant tonight”

Amiee: “GASP!!!!!!!” Can’t breathe pins and needles.

Dr. Blume: “Breathe Mama…Breathe. OK mommy taking you off speaker phone.  You ok Amiee. “

Amiee: “Yes, Yes I am OK” Crying tears of joy.

At this point Mike and Kate were heading back home to gather some items and pick me up.  I called my dad and he was shocked at how calm I was.  I was calm it just felt right…. I was ready.  I knew Katy was ready and she would do great. 

We waited a long time and finally our time has come and we are ready for this part of the journey.

Katy’s Announcement

Monday, February 11, 2013

6 Months All Ready?

Actually it has been over six months since Katy’s last catheterization.  After putting it off until after the holidays, and then Katy was sick when it was scheduled two weeks ago so this Wednesday is the day. 

I dread cath days for many reasons.  Anytime your child is going to be put under anesthesia it is scary.  This time it is especially scary given the fact that Katy had a difficult time during her last time in the Cath Lab and that is still very fresh in my mind.  I know that I can look at Katy and see a vibrant, active, growing ( can you believe it, she is growing!!!) 5 year old.  My sassy, intelligent, artistic girl looks fantastic.  But, and that is a big but… I know that Katy is Katy and her looks are often deceiving and although I try to stay positive we have never received good news from cath results. 

Six months ago the team told us that Katy had 12 months to live with her current heart.  When I do the math, does that mean we only have six months left with this heart.  What happens in six months?  What are our options?  Why is this taking so long? 

As much as I dread the unwanted news… sometimes the unknown is just as scary.  It has been just long enough, that we need to know where we stand.  Because Katy always appears healthy, it will be nice to know exactly what is going on with her heart.  To ensure she is still being treated with the proper medications and dosages. 

We are not expecting to be admitted… just a long day of pre op tomorrow (Tuesday) and then again on (Wednesday) for the Catheterization. 

As always your prayers and good thoughts will be much appreciated.  I will do my best  to update as soon as I can .

Saturday, February 09, 2013

Going to See Santa!

Katy & Patrick were so excited to see Santa this year.   I guess they know that Chippy and Cocoa had been giving good reports since they got these in the mail sent Priority for the North Pole!!

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They were happy to see that they were both on Santa’s Nice List.

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Those Crazy Elves…

Bubbles and Salsa were promoted this year to head elves.  Bubbles is now the head of the Lego Dept. and Salsa is the head Elf of the Princess Dept. at the North Pole.

Santa sent two very special elves in their place.

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Chippy and Cocoa were here to spend December with us and they were just as crazy as Bubbles and Salsa.

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Decorating The Christmas Tree

 

This year after much consideration and a little convincing we decided that it would be best to get a FAKE tree this year.  I know, fake tree, fake presents.  We just felt that it made more sense and would be one less thing for us to have to take care of, and worry about it should we be otherwise busy.  Kathryn and Patrick had a lot of fun decorating it… and loved the multicolored lights. 

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Katy’s 5th Birthday Party

December 9 2012

Hard to believe we celebrated our baby girls FIFTH Birthday today… Due to cold and flu season we had a small, traditional party at home, with her friends from school.

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Katy’s cake was made by a talented baker from Icing Smiles…  Katy LOVED it.  It was perfect for her everything Minnie theme.

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Kids had fun playing pin the bow on Minnie… Music Chairs and Freeze Dance.

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I hope all your wishes come true sweet Katy Girl.

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Tuesday, January 29, 2013

Sorry…

I am sorry… I promised to update more often.

Instead I have updated less often.

It’s all good.

We are holding our own.

No news is good news.

But, I have LOTS of pictures…

and some thoughts.

I know its time to blog…

when I get emails from people looking

for the low down on our family.

We are busy…

good, kind of busy.

Busy having celebrating birthdays.

Katy is 5 now! Patrick is 4!

Throw in a Christmas and a couple

colds and yeah… we have been busy.

But, not so busy that we don’t still need your love &

prayers…because our little Rock Star is still waiting the

wait…even she is getting a bit impatient.

She is done with that PICC line and who can blame her. 

So I am here… and I will be playing catch up!

 

Saturday, December 15, 2012

Shannon Door Snoopy Party

At the last minute we thought it would be fun and a much needed day away to spend with our family up at the Shannon Door… it’s a long ride especially when you know you have to drive it back the same day.   Mike and I have done the round trip in one day, but never with the kids. It was OK… I wouldn’t love to do it…but it was well worth it…given the fantastic time that was had by all.  I am not a really great keeper of the secret so Auntie Nora knew we were coming…last time we tried to surprise and told Auntie Kathleen she blew our cover too…. I guess us Irish ladies can’t keep a secret.

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Katy & Patrick just adore their big cousins.  It’s a really wonderful thing to see the big ones interact and take care of the littles…and lets me honest it’s a nice break for Mike and I to just have a break…and some adult talk. 

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Santa even sent a helper to drop by and say hello and he brought lots of Snoopy gifts with him. 

It was worth the drive… to get to spend a few hours with some of our favorites.  So very lucky to have them in our life.

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and a little video:

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Friday, December 14, 2012

Newtown Tragedy

It has been a long time since I have updated this blog and I have lots of things to do and pictures to share.  But, I just haven't been able to find the words. There has been nothing worthy of more than a Facebook photo or an Instagram picture.

Today, I am not sure I have words… but I have feelings. I am overwhelmed with emotions as I try to comprehend and make sense of a completely incomprehensible  and senseless act.

Because I am friendly with a lot of families with medically complex children and specifically children with severe heart defects, I am more aware of and see first hand too many babies and young children taken from this earth much too soon.  Especially in this past year.  It seems the heart community has experienced a lot of loss and the loss of a child never gets easier and I will never ever find the words to say to a mama that has lost her baby. 

The events of today and the lives of the twenty young children lost today feel different to me. These children died because of a senseless act of violence.

The tragedy that took place in Newtown, Connecticut has made me feel a wave of emotions.  Emotions as a teacher, as a parent of a two young children, and also as a parent that has spent the last 3 years waiting for their daughter to receive a donor heart.

We have always said that we are not praying for something tragic to happen to a child, but that if tragedy were to strike,  we hope and pray that in a moment of such horrific sadness the parents will be able to make the decision to give the gift of life through organ donation.

As I was watching the news unfold this morning and I was watching in horror… I was not thinking about potential donors.  I was thankful to be hearing Katy & Patrick playing upstairs…putting on a puppet show. I was praying for those parents that were about to get the worst news of their life and wondering how they would move on from this day.  I was thinking about all the Christmas presents they probably had wrapped and ready for Christmas morning… did they have brothers and sisters.  How would they ever move on as a family. School should be a safe place…how many children are going to be afraid to go back to school on Monday.  How many parents are going to decide that homeschool is best.  What can we do to protect our children? 

Then it was said… Mike said: “You know Amiee if we get the call this weekend.  We’ll know where it came from.” Silence. What… I was shocked at the possibility and even more shocked that I didn’t think of it myself.  Then I had to wrestle with the whole idea of how do we explain to Katy that the only reason she has a new heart is because of this horrific event.

I am praying for the parents tonight as they cry themselves to sleep.

I found this on FB and wanted to share:

We pray for children
who sneak popsicles before supper,
who erase holes in math workbooks,
who can never find their shoes.
And we pray, for those
who stare at photographers from behind barbed wire,
who can't bound down the street in a new pair of sneakers,
who never "counted potatoes,

who are born in places where we wouldn't be caught dead,
who never go to the circus,
who live in an X-rated world.
We pray for children
who bring us sticky kisses and fistfuls of dandelions,
Who sleep with the cat and bury goldfish,
Who hug us in a hurry and forget their lunch money,
Who squeeze toothpaste all over the sink,


Who slurp their soup.
And we pray for those
who never get dessert,
who have no safe blanket to drag behind them,
who watch their parents watch them die,
who can't find any bread to steal,
who don't have any rooms to clean up,
whose pictures aren't on anybody's dresser,
whose monsters are real.


We pray for children
who spend all their allowance before Tuesday,
who throw tantrums in the grocery store and pick at their food,
who like ghost stories,
who shove dirty clothes under the bed,
and never rinse out the tub,
who get visits from the tooth fairy,
who don't like to be kissed in front of the carpool,
who squirm in church or temple and scream in the phone,
whose tears we sometimes laugh at
and whose smiles can make us cry.


And we pray for those
whose nightmares come in the daytime,
who will eat anything,
who have never seen a dentist,
who aren't spoiled by anybody,
who go to bed hungry and cry themselves to sleep,
who live and move, but have no being.
We pray for children
who want to be carried
and for those who must,
for those we never give up on
and for those who don't get a second chance.
For those we smother...
and for those who will grab the hand of anybody
kind enough to offer it.
We pray for children. Amen

 

Sunday, December 02, 2012

September… Really

I can’t believe that my last blog post was from September!  This happens occasionally and I never know how to deal with it.  Since I like to use this to keep you updated.  I also use this blog for us…as a way to document our life, remember all the little things. 

So although part of me wants to do a generally recap… I am going back and doing it post by post,

So be sure to scroll back to see pictures and life from October and November.  I will say they have been pretty uneventful and uneventful months are our favorites.

Thursday, November 22, 2012

November Blessings

Everyday we should remember our blessings… but sometimes it is easy to forget.  In November a lot of of us try to make it a point to post what we are thankful for daily on Facebook.  I think it’s a great idea… and I am seriously considering starting a gratitude journal in the new year.  I do think that even on my hardest days I can find something to be thankful for.

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Days of Gratitude 2012

Day 1 Today I am thankful that Katy's line was just clogged and didn't need to be replaced.

Day 2: Thankful for friends that know just what to say and a husband who is always there to pick me up and get me through the rough days!!

Day 3: I am so thankful to be a mommy! For so many years I feared I would never have the opportunity. Now I am blessed with two amazing babies. A boy & a girl perfection!

Day 4: I am thankful for my handy husband. There is nothing he can't do! My scrap room has new lights and an awesome peg board to help me organize!! It's the little things!

Day 5: Today I am thankful for Boston Children's Hospital! Thankful I live so close to the #1 hospital in the country!

Day 6: Today I am thankful for kind and generous friends!!

Day 7: (a little late) I am thankful for a warm home!

Day 8: Today I am thankful for pain relief! After 22 days of a pretty much constant headache... I am headache free and I feel like I can function.

Day 9: Today I am thankful to be planning Katy's 5th Birthday Party!! She is such a miracle...each and everyday and every child's birthday is special...but when you wonder each year if your child will make it to their next birthday... its HUGE!

Day 10: Today I am thankful for a fun filled day of girl talk, craftiness with my 2nd mama Kris love you and am so thankful you are a part of our life! XO

Day 11: Today I am thankful for my dad & Tracy for always being there... and doing whatever they can to help. It's nice to know that we can always depend on them. They are doting grandparents, and Katy & Patrick ADORE them.

Day 12: Today I am thankful to get the chance to talk to a friend... I have never met, but I feel like I have known forever. XO — with Tammy .

Day 13... Today I am thankful for sleep aids. I was reluctant to take anything for so long and now I know it is the only way I get any rest... I hope someday I won't need them but for now I am thankful I have them.

Day 14: Today I am thankful for my sensitive, funny, kind, handsome boy! I can't imagine my life or our family without Patrick! He keeps us laughing and always knows when his mama needs a hug! I love you sweet boy! XO

Day 15: Today I am thankful for my girl. She is sweet & sassy...has a smile that will melt your heart and strength like no other. She is funny, and smart. She is beautiful inside and out and I am so thankful to be her mommy.

Day 16: Today I am thankful for my husband. He does it all even on days when neither of us wants to do anything. He is the kindest, sweetest most caring man I have ever known. He is funny and intelligent and brings out the best in me. I am so thankful he is my husband of 10 plus years and the most amazing daddy to K & P. We are all very lucky

Day 17: Today I am thankful for Laughter... sometimes you just need a good dose of funny! Tonight on the way how Cole and I were saying yo mama jokes and it was funny to just laugh out loud with Cole, Dad and Tracy.

Day 18: Today I am thankful for quiet Mornings... everyone is still sleeping. I am cuddled up under a quilt sipping coffee and once I get off of FB I have pictures to upload.

Day 19: Today I am thankful for the generous gift from my dad & Tracy A reliable ridiculously awesome new (to us) Honda odyssey ... yes I know a minivan but for a minivan it is pretty kickass! (Actually, I love minivans and I can't imagine not having one... there I said it!)

Day 20: I am thankful for the town we live in. It is a great community that has embraced our family. We have met some amazing people... we love Kate's school...and dance studio! Great parks and of course the lake!

Day 21: I am thankful for Patrick's Preschool. It's such a great little school, with kindest teachers and staff. They have been such a blessing during this trying time...and knowing Patrick has a consistent, fun place to go.

Day 22: Today I am thankful for Boston Children's Hospital. There is not a day that goes by that I don't think of that hospital and the amazing team of doctors and nurses who have been such a huge part of our life for over 5 years. I am so thankful so close to the #1 Children's Hospital. I hate to name names because I risk missing someone but some need to be said... Dr. Marx who cared for Katy long before she was born and for the first three years of her life and is still an important part of her team. Dr. Blume and the amazing transplant team for guiding us and trusting us and allowing wait this wait at home. Our most beloved child life specialist Lauren the nursing staff on East 8 East and 8 South.

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Kathryn continues to be responding to the Milrinone fantastically well and we couldn’t be happier.  It is still so hard to believe that we have been waiting so long 857 DAYS at last count…it’s even more unbelievable that we get to wait at home.  I can’t imagine it any other way.  I seriously don’t know how we could survive a long term admission… although Katy is so very sick… she is living a pretty normal childhood and that is a huge gift.  To be able to give her the best of both worlds… the ability to keep her status so high on the list and doing just about anything an average almost FIVE year old would do is amazing.  It hasn’t always been easy… but we have a great team, and Mike is pretty amazing caretaker of the line and would make a great picc nurse/pharmacist so it has worked.  I know that it may not be the best choice for every family, but it was the best for our family.  I can say that without a doubt when I think back on all Katy has done since July, all we have done as a family, all the memories we have made. It was one of if not the best decision we have ever made regarding Katy’s medical care (other than the choice to continue our pregnancy which wasn’t really a choice…there was never a doubt.  I am still offended I was asked. ( Yes, I know it is there job…moving on)

Wednesday, October 31, 2012

October Musings

‎85 Days as a 1A & 710 days as a 1B for a grand total of 795 days on the transplant list! Life has stood still for us... it seems like everyone has moved on...we are yesterdays news and we are just stuck. Just as hard on day 795 as it was on day 1.

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We celebrated Papa’s Birthday!! The kids had fun making him a very special Build A Bear.

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