Sunday, August 29, 2010

Murphy’s Law

If you look up Murphy’s Law in a dictionary this is what you will find…

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You can’t make this stuff up… If I wasn’t living this life.  I wouldn’t believe it! I would think it was a badly done Lifetime Movie!

It’s a crazy life, but it’s our life!!!

Saturday, August 28, 2010

G Tube Admission Day 2

Our little  rock star had a great night… she slept well and tolerated her feeds over night.  Which is great.  Her G tube is working and looks great!

Her spirits are up, and she is asking to have her hair done. (Proof that she is my girl… I was applying makeup moments after Patrick’s birth :0 )

She is off all narcotics and is just taking Tylenol around the clock.  She is IV free…which always makes her a happy camper.

She is up playing, coloring and chatting up all the staff.

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All her nurses love her, and a few of our favorites have stopped in to say Hi.

I think she has watched more TV in these past 24 hours, than she has in her entire life. And you know what….that’s OK!

We are just taking it easy… today.  We asked for no visitors.  Just so we can all rest.  Yesterday was a long day. 

Possible discharge TOMORROW!!! OH YEAH! Might be our shortest hospital stay yet!

Friday, August 27, 2010

G Tube Surgery Update

 

Sorry, its taken me awhile to update.   As I said admission weeks are hard on me, and I haven’t had much to say. 

Now that it is behind us…(just about we are still in the hospital)  I can tell you all about it.

Friday August 27th 2010

Murphy Family Up and at them 6:30…alarm didn’t go off so we were already behind the ball.  Thankfully Mike had the van all loaded and ready to go the night before.

Rush get kids and self ready… pack last minute essentials.

Stop at Dunkin Donuts because late or not… no one wants mama to go without her caffeine fix!

Drop Patrick off at Auntie Krissie’s… I was fine until Katy and Patrick said goodbye… and then I lost it for a bit…but I made a quick recovery.

We arrive at Children’s with 15 mins to spare.

Katy was admitted and given her loopy juice around 9: 15AM

Met with the surgical team and signed everything.  Liked the nurses, LOVED the ( anesthesiologist who in my opinion one of  the most important people in that OR)

9:45 Katy was feeling fine and keeping us all laughing!

9:54 Mike suited up to take Kate back to the OR. 

9:55 I lost it….nurse was of a comfort.  By the time Mike came back from OR I was put back together.  I don’t know if its a good thing or a bad thing… but I seem to be bouncing back quicker then I used to.  Must just be my brain is going numb.

10:00 Mike and I went to grab a bite to eat…Au Bon Pain it is.

10:20 Head up to the Surgical waiting room

10:40 Surgeon is out to tell us Kate is doing great and we can see her in recovery in a little bit

10:55 1 hour since I left her… I can hear Katy’s cries as I walk into recovery.  As soon as she hears my voice she is calm… (feels so good, that I still have a calming affect on my sweet baby)  I climb in her crib and we cuddle.  She is given another dose of Morphine while we wait for a bed on 8 East.

Still waiting to be moved to the floor…Katy is resting comfortably.

2:00pm Finally moved to the floor… it was worth the wait since we have a private suite.

Katy had a great OR day…she proved to us once again… that she is a ROCK STAR!! 

We napped and cuddled most of the day.  Tomorrow we will get her up in moving once we can get the IV out of her foot. (poor baby)

Mike is sleeping in the playroom tonight…I’ll be by her bed! We are all exhausted and hoping for an uneventful night

Called to check on Patrick…. I don’t know who is having more fun Patrick or Krissie…. but love to hear that he is having a blast and is being loved on.  Makes being away from his, SO much easier.  Thank you Krissie… I don’t know what we would do without you! We love you!!!

Thanks to everyone for all your prayers and kind words…they once again worked!

Monday, August 23, 2010

You know what’s worse than Clinic Weeks?!

Weeks that end with a surgery date for Friday.  A surgery I have resisted for some time.  A surgery that I am still not 100% convinced is what is best for Katy Girl.  I have been vetoed…and now we will try this.  I should rephrase that, I wasn’t Vetoed… but I have seen a decrease in her intake and that scares me.  So the next logical step is to try the G tube.  I just wish in order to do that didn’t mean a surgery.  Surgery is always risky, even to people in perfect health.  Surgery for Katy is risky given her cardiac status and her low weight….ugg its a balancing act. 

So this Friday Mike and I will pass off our son…( happy that he is staying with Auntie Krissie, and I know he is well taken care off and treated like a prince while he is there)  We will then drive in to Children’s…with our sweetest first born,our only princess girl, who makes our lives worth living.  With our van loaded with her favorite toys, and blanket, THE PRIZE BOX, Donations for Children’s (Thanks to all the Scrapshare Ladies that sent supplies) and settle in to our new home for hopefully no longer than 3 days. 

I will watch my daughter get poked and prodded and then she will get silly once she gets her silly meds.  Mike and I will kiss her good bye, pass her on to the kind nurse who although is kind and tries to be understanding.  She doesn’t understand… more likely than not she has never had to pass her baby off to strangers, begging them to stroke her hair and sing Twinkle Twinkle Little Star because its her favorite, and can usually calm her down.

Finally, Mike will be able to pull me away,long enough for them to whisk her away, and I will stumble to the waiting room, with the huge cloud lingering over me, reminding me that, that may have been the last time I say goodbye to her.

It’s horrible, and it sometimes feels unfair.  But I wouldn’t change it for the world.  Katy is our shining star.  She makes all of our days great, even the hard days. 

 

PS I know you are all waiting to hear and see pictures from our fabulous family vacation.  They are coming.  Its just hard to do it justice, when my heart is so heavy this week!

Saturday, August 21, 2010

Finding time to Read…

Something other than Good Night Moon, I love you Stinky Face, and our household favorite Guess How Much I Love You!

I love to read!  Before Kids, one of my favorite places to hang out was at Barnes and Nobel.  Mike and I have even spent many a date nights browsing through our favorite book store. 

I used to stock up on the latest Jennifer Weiner books and head to the beach!  Ahhh…. I remember those days sitting on the beach, in a CHAIR! sipping my iced coffee and reading, uninterrupted reading.  Those beach days are gone… now my time at the beach is spent chasing around the babes…. splashing, building sand castles, applying sun block.  Not much time for reading. 

My “free” time is limited than it once was and is often spent editing pictures of said beach trip, knitting, or sleeping!  

So, that hasn’t left a lot of reading time available.  I still like to buy the books… I just find it harder to find time to read them…. that is until now.

One of my pet peeves about Mike is that like a lot of men when he heads in to the bathroom he is there for 15-20 minutes.  So annoying when you live in a ONE bathroom house.  Well I finally figured out that my husband didn’t suffer from Irritable Bowel Syndrome….nope!! He was taking his break, he was escaping and hiding in the bathroom to read!  (So that’s the secret to his ability to finish his books) 

His secret is out and I have started to do the same thing!! I can read a chapter for each potty break!! Love it! I have finished two books and have started in on the third…since this revelation. 

Thanks Babe! For the great idea, and helping me find time to pursue my love of reading!

Friday, August 20, 2010

Pow, pow Power Wheels

I remember when I was a kid, I wanted a Power Wheels… so badly. You know those little motorized cars/bikes. I wanted nothing more than to trade in my Cabbage Patch Big Wheel

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For a much cooler and faster Power Wheels. To be honest, I am not exactly sure when Power Wheels came out, but I am confident that they were ridiculously priced and that by the time they came out, I might have been right on the edge of being too old, and I wanted a Barbie one…only a Barbie one. So it’s not as if my parents investment could have been passed down to my brother. ;)

Well, I think it holds true at least for me that I want to give my kids everything I had as a child, and maybe more! I had a pretty good childhood…always that best of the best. (Especially if my dad took me school shopping, which was a rare event. But, I do remember it happening one year)

I never did get a Power Wheels… but I am happy to report that I am living vicariously through Katy and Patrick!

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Thursday, August 19, 2010

Make A Wish

WOW! Is all I can say….Make A Wish is an unbelievable organization. When we first learned of Katy’s special heart, it was brought to our attention that Kate would be eligible to have a wish granted.

Mike and I both agreed that although she may medically qualify, we would not be accepting a wish. Because at the time Katy was so healthy and we felt so blessed, that we didn’t want to take a wish from a more deserving child.

Obviously, a lot has changed since then. (Oh, how I wish we could go back to those days. I was so naive, I thought that we were so lucky…. little did I know. )

Anyway, since all that has changed and Katy has been through so very much. More than any child should have to endure, and more than most adults will ever go through. We decided that Katy deserved to be treated like the princess she is and asked Make A Wish to consider Katy’s wish to go to Disney.

Make A Wish contacted Katy’s team to confirm that she was well enough to travel, and then sent two volunteers out to meet us, and fill out all the paper work.

They arrived with gifts for both Katy and Patrick.

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The volunteers were very impressed with Katy’s Disney knowledge.

So as long as Katy stays healthy and a heart doesn’t arrive before then, we along with Katy’s Fairy God Mother, Auntie Corinne will be leaving on a jet plane to Disney World in the fall. AMAZING! As Katy would say “We are going to Mickey’s House!!!! I am SOOOO EXCITED” In her cutest, most excited little voice.

Tuesday, August 17, 2010

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.

We’re back….

Ahhh…. we are back from a lovely 6 Days in the White Mountains….with all our Murphy Cousins!!!

We had a blast and I have the pictures to prove it!  They will have to wait for now.   Since it is bedtime.  I have over 1500 pictures to upload and edit!

I also have two GIVEWAYS that will be happening this week!

Check back soon!

Sunday, August 15, 2010

Headed Back to the White Mountains

We headed back up to Jackson, NH this week for a fun filled week with the Murphy/Riley/Mulkern cousins. For some fun family time, a visit to Storyland, some river swimming and to celebrate Nia Riley’s Christening.

Needless, to say we had a fabulous time. The kids were great! They loved being with all their family. As did Mike and I.

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It was a fabulous week of sunshine, smiles, and s’mores. It was a lovely break from our reality. The combination of the mountain air, and family that loves and supports us, was good for our souls.

Tuesday, August 10, 2010

Storyland…

…where fantasy lives.

I think that if you grew up in New England there is a pretty good chance you have visited Storyland in Jackson, NH at least once your lifetime. Or if you are me, once every year from age 3 to 16!

So of course we started that same tradition with Kathryn and Patrick. This was there second year visiting it, and they both really enjoyed. I think they will like it even better next year.

What makes it most magically is that we visit Storyland with about 20 of our extended family members! Which makes for a great time!

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Sunday, August 08, 2010

Ahh…Normal

This weekend ROCKED! Do you want to know why it rocked? It rocked because to me it felt… dare I say normal. I am done with Saturday classes (until 9/18) and we had NO COMMITMENTS!!! I think this is the first weekend since May when we weren’t scheduled to do something or be somewhere.

You know what we did… NOTHING! I changed from one set of jammies into another. I sipped on yummy cups of coffee…and the occasional Iced Latte when Mike ran out to run errands for me us. Allowing me to keep my commitment to myself that I was going to clean and tidy my scrap space… and CRAFT!

I am happy to report that I did both, all though I didn’t scrapbook… I played with Modge Podge and my Cricut and I made Katy a potty chart and prize box… because yes, we are potty training!

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Because that is what normal two and a half year olds do. (Although her high doses of multiple diuretics are proving to make potty training a difficult task)

We Mike made some delicious meals. We cleaned, we decluttered, I had a bubble bath, we read stories, we watched The Little Mermaid and Sleeping Beauty. I chatted with friends and family. I lounged… I listed to music and played cards… I knitted. I made the most of our glorious weekend at home.

I am usually not a homebody…there is rarely a day that I don’t leave the house for one reason or another. I can’t tell you when it will happen again (Most likely post transplant when we won’t be able to leave the house) I can tell you it was lovely, and much needed.

Tomorrow it is back to reality… running errands and packing up for our trip up North!

Katy’s Story…from the beginning

June 16, 2010                                                                                                     Updated: August 2010

After 6 years of infertility, and several failed IVF cycles. Mike and I were finally pregnant. At our routine 18 week ultrasound instead of finding out if Baby Murphy was a boy or girl, we were informed that our baby had a serious heart defect.


The left side of her heart was only 1/4 of the size it should have been. She was diagnosed with Hypoplastic Left Heart Syndrome. At that point we were given the opportunity to terminate… but for us that was not an option. The alternative, we were told, was a series of heart surgeries to reconstruct her heart. The first surgery being immediately after birth.
Katy was born five weeks early due to my preeclampsia. On December 20th 2007 after a normal, and uneventful delivery, much to everyone’s surprise Miss Kathryn Marie Murphy was born screaming and PINK! After birth (and a few cuddles with mommy) Kate was taken to Children’s Hospital Boston.


The team at Children’s didn’t quite understand why Kate appeared to be doing so well, her "echo" still showed a significantly small left ventricle. Yet, somehow her little heart was keeping up with her body’s blood flow needs. She was a Christmas Miracle in the Cardiac ICU. No one on the floor has ever seen a HLHS baby this healthy. After 10 days of observation, it was decided that no surgery was needed at this point and they let us take our baby home!


At our two week cardiac checkup it was decided that more study was needed. Katy was admitted for a cardiac catheterization, and an MRI. After another 10 days of testing and observation, we were sent home on 3 heart meds, again no restrictions.


Over the last two years Katy has continued to baffle the doctors, because she is doing so well. Her heart meds have kept her healthy. Her diagnosis was changed from Hypoplastic Left Heart, to Restrictive Cardiomyopathy.
The only noticeable symptom Katy shows is that she is tiny and has a difficult time gaining weight, even though she is a great eater and is on a high calorie diet. We estimate she eats 1600 calories a day, and she only weighs 20 pounds. It became a concern when she stopped gaining weight 6 months ago.


As a result of her not gaining weight our cardiologist Dr. Marx, who is GREAT, decided that another Cardiac Catheterization and MRI was needed. The cath showed her pressures to be seven times the normal pressures. After doing well for so long, Katy’s care was turned over to the transplant team

As a result of her failure to thrive, a G tube was placed in August for feeds.  Although it was not a decision I was entirely on board with, it was better than the NG tube. Unfortunetly, even with the high amount of calories we are pushing on her she has not made any significant weight gain.

.Kate was listed as a status 1B on the UNOS Transplant List on July 29th 2010.

To meet Katy you would not believe that she’s a little girl waiting for a new heart. At this time, she is doing clinically well and acting like a happy and normal four year old.  She goes to preschool and dance class. She loves playing with her brother!!


She is our ROCK STAR!!!

Wednesday, August 04, 2010

Stream of consciousness

So I am trying my hand at this method of blogging. Lots of bloggers use this method of writing when they have a lot to say of a bunch of random thoughts. I imagine this is going to more like a glorified facebook status update. Some of these topics I may come back to and write a more in depth blog entry on one or more of these topics. So maybe this is a spring board for future posts, maybe not. But there are so many thoughts, and time sensitive things I want to share.

So Katy’s benefit at the Shannon Door was amazing!!! Jimmy and Kimmy Keys!!! Rocked the House!!! The Mulkern Family and the generous people of Jackson, NH. I renewed my faith in humanity.

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My awesome husband graciously ok not so graciously stopped at a few outlets on the way home and I got some super adorable shoes at LL Bean for $4.49. I can’t wait to wear them tomorrow!!

Speaking of tomorrow… I will be taking Katy to her transplant clinic ALONE! Usually Mike and I both go, but it’s not very fair to Patrick and we don’t expect any real decisions to be made. Other than pulling the damn NG tube.

Mike will spend the time unpacking and organizing our house since it looks like a bomb went off… Looking forward to getting everything cleaned and organized before we head back to NH for the Murphy/Mulkern/ Riley invasion of Storyland! CAN NOT WAIT!!!!

Tomorrow evening Make a Wish is coming to plan our trip to Disney. Although the thought of seeing K & P enjoying Disney in such a magical way… the reason they are given this opportunity breaks my heart.

I completed my first year at Bay Path I finished with an A and B…not so happy with the B, but considering the session I had. I am actually pretty impressed with myself. It was a long, hard, emotional session. I am happy its behind me and am looking forward to the time off. Classes start back 9/18/10. Currently I am planning to go back…all of that depends on when Katy’s new ticker arrives.

So, that’s all for now! Let me know what you think about this style of blogging!

Keys for Katy!

WOW! Is all I can say! I am overwhelmed with emotions and I tried to keep myself it check… but at times it was nearly impossible. The generosity and kindness of strangers has renewed my faith in humanity.

Jimmy and Kim Keys are two people we have never met…yet, they feel like dear longtime friends. They loved on my sweet babies and took time out of there VERY packed schedule to squeeze in a show to benefit Katy,and our family. People that they have never met… they read about her on our cousins facebook page. They worked together to organize a never before Jimmy Keys Kid show!

Jimmy, is such a fabulous entertainer and all around GREAT guy he had no trouble winging it. He along with his wife Lady Gaga Kim Keys kept about 90 kids and their parents laughing, the entire time.

The Shannon Door was our host and they had candy and homemade cupcakes and lemonade for everyone. Auntie Tess baked over 100 cupcakes for our little Rock Star!!

When Jimmy sang K K K Katy the tears started rolling down my face.

Mike and are so very thankful to both Jimmy and Kim Keys and the gang at The Shannon Door

If you are interested in catching one of Jimmy’s amazing shows… I promise you won’t be disappointed. You can find his tour schedule at http://www.jimmykeys.com/show-dates.php

The next time you head to North Conway for a weekend away, a visit to Storyland or some awesome skiing….make sure to stop in at The Shannon Door for THE BEST PIZZA http://www.shannondoor.com/

Now for the pictures….

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