It’s not you it’s me…

The past 2 months have been a whirlwind for Mike and I. Our life has FOREVER been changed. We can never go back, we can only go forward and by the looks of it…the road ahead of us is long and scary. We will get through it… we always do. Usually we are OK just doing it ourselves, but we are quickly realizing that this is bigger than us… so much bigger and we need help.

It’s proving to be IMPOSSIBLE for us to do it alone, between childcare, household chores, and the additional financial burden that hospital living is, we have had no choice but to tuck away our pride and just say THANK YOU!

For me that is VERY difficult I like to be the doer, the organizer the helper… I like to donate and babysit and make meals. I am getting better and the only thing that makes it easier is the thought and hopes of Paying It Forward when all of this is behind us, and we are in a better place. Until then we have no choice than to graciously accept any and all help.

We have had an outpouring of support from our friends and extended family. Meals, childcare, fundraisers, visits, LOVE, prayers, and more LOVE. It has been wonderful. It has been said before and is proving to be sadly true. That when something like what we are facing happens you find out who really loves you and who your friends are.

For me, its been a LOUD, rude awakening. I can’t believe that the people that SHOULD be supportive and helpful to us,and by should I mean the ones that if this situation was reversed I would be there is two seconds FLAT. I had thought about publically outing some of them, but have decided that I have more class than that….and they know who they are.

And really, what could I say… I am mad that you didn’t do what I thought you should do… ridiculous and I know that, and that is the reason why I delayed writing this post. I am hurt, disappointed and frustrated. But, its time for me to wrap it up and throw it out the window. Since I don’t have the time or the energy to waste on these people who can’t even call to check on our sweet Katy….or keep commitments they make to us.

So instead, I will focus that energy on thanking the people that are scooping us up and keep us together and helping get us over this horrific time in our life.

I can choose to be angry all the time… or I can choose to accept what it is and surround myself with people who love and care about us. It seems like a no brainer.

Its funny, though…. When you write a passive aggressive post as this one may be interpreted as. The people its meant for will assume I am talking about someone else and the people its so NOT about will think its about them.

Surreal

I really don’t know how else to describe what our life is like right now… although I suppose at times it feels more like a nightmare than a dream.

Katy is officially on the transplant list. She is currently listed as a 1B. As excited I am at the thought of a new (well new to us) healthy heart beating in my Katy girls chest… I am scared worried, sad, angry,hopeful and every other emotion that you can imagine I am feeling or I have felt.

I am scared because my sweet beautiful girl has a long road ahead of her.

I am worried, what if the perfect heart for Katy doesn’t come in time.

I am sad for all Katy and our entire family has to endure. I’m sad that we will live in fear of rejection for the rest of our lives.

I am angry…for so many reasons. Trying to be positive right this moment. So I will leave my anger post for another day.

I am hopeful, because our team at Children’s gives us a lot of hope that Kathryn will be very successful post transplant and will go on to live a full and happy life.

Right this moment, I am a bit anxious we are headed to Katy’s first benefit. Hosted by our Murphy/Mulkern family at The Shannon Door. The very talented Jimmy Keys volunteered his time, to do a very special kids show in honor of Katy. I am overwhelmed with their generosity and love, and know that there will be a lot of talk about our Rock Stars heart (obviously) and even though we have been living it for years now…sometimes my emotions become overwhelming.

Looking at today as a day to celebrate our little girl and her special heart!!!

Mckmama Fan Vs. Anti Mckmama

Why I was a fan of Mckmama

Part 1

I have referred to the blogger Jennifer Mckinney AKA Mckmama the author of the blog My Charming Kids. I “met” Jennifer a little over a year ago. I came across her blog via another heart blog. She was asking for prayers for her sweet little boy Stellan who was born with a Congenital Heart Defect. They live in the Midwest and were receiving cardiac care at our very own Children’s Hospital, Boston.

At the time I totally felt connected to her, she was living and feeling what I have felt since Kathryn was in my tummy. I was also drawn to her bright colorful photographs of her beautiful children,and her creative writing. When she wrote her feelings and fears…I just felt connected not only as a baby wearing, breast feeding, picture taking, blogging, teacher, mommy…but also as a fellow heart mom. Because even though at that time (and truth be known I still resent that I am one) I am a heart mom, and I do believe that us heart moms need to stick together, as do moms in general.

Anyway, I was a Mckmama Fan…I checked her blog daily…sometimes multiple times a day. Looking for an update on her sweet baby. I prayed for her, for Stellan, and her family at home.

On one of her trips to Boston, alone with Stellan at Children’s I contacted her via Facebook, since she had said that she was sick of Au Bon Pain and hospital food and offered to bring her up a meal. Since I know first hand how tiring the food at Children’s can get and I also thought that maybe a fellow heart mom might be a comfort to her during a difficult time. (She was all alone, I can’t imagine doing it alone)

So I headed up with lunch a few magazines and a gift for Stellan. Drove to Boston headed to 8 South (Cardiac ICU) stopped at the desk asked them to let Jennifer Mckinney know that I was there. They called Stellan’s nurse and she responded that Mrs. McKinney is not taking visitors. WHAT?! I just emailed her that I was coming, arranged childcare for my two kids and headed in to Boston. OK, well life in CICU changes in a moment,and maybe she was busy with the doctors or maybe Stellan wasn’t doing well. I left her lunch and gifts and went on my way.

I didn’t do any of that for a thank you… I didn’t do it for praise… I did it because it’s what I would hope would be done for me. If I was in a strange city, in a hospital, alone with my baby without my husband.

Was I disappointed that she didn’t take the time to let me know she had at least gotten it? When I saw that she had time to blog and FB about other things…a bit. Considering I did email her to make sure she got it. But, I digress… That has nothing to do with why I am now Anti Mckmama…

I will have to save that for Post 2…since I am blogging from the car and starting to feel a bit car sick!!

Part 2

So where was I….oh yeah! Why I am now Anti Mckmama… I guess I don’t know if that is really true. I do follow the Mckmama Without Pity more often than I do Jennifer’s blog…I guess I like the gossip and drama!!

I do wonder why so many people myself included care about what drives Jennifer to blog, and if it is all true. Really what difference does it make?! Why do we care, its her blog she can do with it what she wishes.

Clearly she is doing something right since she has a large following and is able to provide enough for her family so both her and her husband can stay home (this is not a proven fact… this is my interpretation of things I have read about her)

Maybe, people are jealous…damn, I wish my blog could support my family! I am excited if I get one comment. HA!

I know for me… I became questionable of her and her motives and went from a fan to almost anti….when she was really dramatizing Stellan’s heart condition.

I felt she was playing on my emotions and although I have no doubt that Stellan’s heart condition was in fact serious. He was healed. The doctor’s were able to fix his heart so he was no longer a sick CHD baby! Amazingly wonderful news. News that most heart moms (and dads) never hear. Since a lot of CHD’s are not curable.

The fact that Stellan is healthy and has been for quite sometime, and she still has up the pray for Stellan button with the picture of him at his sickest, is disturbing to me. I have similar pictures of Katy… from when she was very sick… I can barely look at them let alone post them to my blog. (I suppose I would if they were the only pictures I had…thankfully they aren’t)

So that is my humble opinion on Mckmama… Maybe you have never even heard of her…and I am just generating more traffic to her blog… if that’s the case…”your welcome, Jennifer” since I know you are much to busy to thank me!

Jackson Bound

“We've been talkin' 'bout Jackson, ever since the fire went out.
I'm goin' to Jackson, I'm gonna mess around, Yeah, I'm goin' to Jackson,
Look out Jackson town.” –Johnny Cash

So The Murphy’s are packing up the mini van ( I know can you believe I drive a Mini Van, Not only to I drive a mini van… I LOVE my Mini Van) HA! There I said it! It’s really the perfect vehicle for an over packer like myself.

Anyway, we are headed North to visit some of our favorite cousins. The Mulkern Family. They along with Jimmy Keys are hosting a benefit for our little Rock Star!

Looking forward to spending some time with our wonderful family, celebrating my girl and getting away from Children’s Hospital!!! Even if its just for a couple days. It’s a warm up since we will be doing it all again next week!

Next week is the Murphy/Mulkern/Riley Reunion!!! AKA The Irish Invasion of Story Land!

A few new posts…

Pool + Lots of cousins = LOTS OF FUN

 

Patrick is 18 Months!

Children’s Day 3, 4 & 5

Day 3

Saturday July 24 2010

Last night I left Katy and Mike with our cousin John who came up to visit (and got Katy the biggest Minnie balloon I have ever seen!!) and headed home to do some homework and try and get some good sleep since I had school all day today! It was so difficult leaving Katy girl even though she was in great hands.

Today was a long day, but I got through it.  I had lunch with a great friend, and my Bay Path Girls got me through the day.  I left a bit early to head up to see my girl.  She had another great day.  Auntie Mary came up to visit, which was lovely she too brought Katy balloons!! And treated Mike and I to dinner! Thanks Auntie! 

We had another great nurse tonight…I tell you a great nurse makes all the difference.  Katy is getting to be very popular on the floor and lots of nurses are sporting Katy bands!!!

Patrick had a fun filled day with Auntie Melissa and her crew… I miss him so much!!

 

Sunday July 25 2010

Day 4

Mike and I both stayed at the hospital last night.  I am amazed at how well Katy is handling this hospital she is really proving to be a little rock star.  She is cooperative and loves making the team laugh… She has such a fun sense of humor for a two and a half year old.  I love her use of sarcastic humor! I wonder we she gets that from?!

Auntie Krissie came up with balloons and lollypops adn Katy Girls favorite Blue Raspberry Coolatta… she is not spoiled, juts loved much.  Kris took Katy to lunch and the playground while Mike and I snuck out to meet Patrick and the DeMarco’s at the Frog Pond!!

Then we ( all three of us) headed back to Children’s!  Katy was so excited to see Patrick.  They have the cutest little relationship.  I love, love, love, watching them interact.

Then Papa, Tracy and Cole came up to visit! They brought Kate the most ADORABLE Build A Bear!!! Katy Bear with a heart that you can feel and hear beating. Very Cool!!

We ordered in The Cheesecake Factory (one of Katy’s favorites) and shared a yummy dinner with everyone in our new dining room   in the Children’s Hospital Cafe! Thanks Papa!! 

The plan is still discharge for tomorrow and we are ready!!!

Monday July 26 2010

We are going HOME! With the NG tube….but still we are going home! We are going to give it a try and see how we do!!

Thanks for all the visits, cards, gifts etc.! They mean the world to us!!

Admission to Children’s

DAY 1 July 22 2010

Today we spent most of the morning cleaning and packing for our stay at Children’s and Patrick’s stay at Auntie Dars, and then Auntie Melissa’s ( So happy he is such a good boy)

We arrived at Children’s around 3:00…which was great timing since our room was ready and waiting and we were able to get the B side the inside bedspace in the shared room, which gives just a teeny tiny bit more room, because The Murphy’s aren’t light packers.

Mike got us all settled in, while I went to Parent coffee hour. Then it was time to insert the oh so lovely NG tube… Katy was given Ativan which always makes her a bit interesting. Then her and daddy were off to the treatment room.

I think its great that anytime they have a “procedure” to do ex. blood draw, feeding tube, etc. etc. they take them to a seperate room. That way her bed space is a safe and comfortable place. I had a super special surprise waiting on Katy’s bed when she came back with her new accerorie. We have a WHOLE HUGE bag of goodies, for our brave little princess. Let me tell you she DESERVES each and every trinket she gets. She just continues to prove to be a rock star!!!

Katy had a difficult time falling asleep…and didn’t end up falling asleep until 11:30 PM!! We were then disturbed at 4AM with an admission and Katy girl was up for the day!

Cuddling with her Daddy –O… Such a daddys girl!!

Children’s Admission

Day 2 July 23 2010

Katy tolorated her overnight feeds just fine. Her chest xray did show that she had some extra fluid in her lungs, which is not a great thing, but can easily be fixed with some adjustments to her lasix. So the team is working on that. As predicted she is not eating as much in the hospital as she does at home, but that is to be expected.

Mike and I met with the team and signed all the necessary paper work to list Katy… the plan is still that she will be listed this admission. Sureal.

Katy and I were both exhausted and took a good 2 hour nap snuggled in her crib…

I am almost caught up!

Are you even reading?!

Happy Birthday America!

Fireworks with my Little Firecrackers!

 

Still playing catch up 1st Visit to Kimballs this year!!!

Can you believe my baby by is 18 MONTHS old…

I know, I am long over due for an update on my little P Man!!!   Oh, so much to say about what an amazing little man he is.  Patrick has proved these last 18 months that there most certainly is a bigger plan.  Let’s just say that surprised is an understatement, when I describe what I felt when we learned we were expecting Murphy Baby # 2 when Murphy Baby #1 was only 3 months old.  Considering all we did to conceive Kathryn… once the intial shock wore of Mike and I were pretty proud of ourselves ;) This is a family blog, so that is all I am going to say about that.

Patrick at 18 Months

Still is a mamas boy the majority of the time

Although he does love his playtime and rough housing with his daddy

ADORES his big sister!! It is so fun to watch the two of the interact.

LOVES to eat!!! His current favorite food is: Cheese

He runs and climbs and reminds us everyday how different boys are from girls

He has a bit of stubborn streak…but a smile that can melt your heart

He LOVES books and loves to crawl in our laps to read books and has already has learned “1 More”

He is a HUGE fan of Elmo! 

He gives the sweetest hugs!

He loves his blankie…that Auntie Krissie had made before he was born.

He likes to clean and tidy up his toys…loves to clean up his spills

He is a dancing machine!

Oh, and his belly laugh…he still has it and its cuter than ever!!

He weighs 24lbs which was surprising to me, since he eats so well, but as I said he is an active little man.

Patrick is a joy! He completes our family!!

Pool Fun Post Here

New Post

I finally posted our trip to zoo… A Day At the Zoo Link

Better than Expected

Today’s transplant appointment went much better than I had expected. There was no G tube fight. Basically both Mike and I misinterpreted the nurses message. Basically today was to tell us what was discussed at the meeting yesterday, and what needed to happen to get our little Rock Star listed and on to the next chapter.

So basically what happens at these meetings is each of the Transplant cardiologists presents their cases. So Dr. Blume presented Katy to all the other members of the team… surgeon, fellow cardiologists, nutrition, GI, Social work etc. etc. all those people that I told you we had previously had to meet with before listing. They then review Katy’s story… and based on numerous statistics they place her on the chart as to how successful transplant will be for her.

Basically there are two ends of the spectrum; on one end is the kids that bounce back quick, minimal complications, are off playing soccer within the year post transplant. Then there is the other end of the spectrum which is sadly the kids that don’t even make it out of the OR. I am happy to report that Katy is on the soccer playing end of the spectrum. Given her history, how well she is doing and responding to medicine, the fact that she has had NO previous surgery, kidneys are great, liver is great, developmentally she is great, she is well vaccinated, our lifestyle etc. makes her a lower risk therefore a great candidate for transplant.

Once that is decided they look to see if and when a transplant is needed and based on Katy’s non growth and the pressures and structure of her heart. Yes, a transplant is the best course of therapy and sooner rather than later is the way to go.

It was also decided that although we all seem to agree that Kathryn will not gain any significant weight until she gets her new heart, a few extra pounds wouldn’t hurt to help with her healing post transplant and to help keep her as healthy as possible while she waits for her gift.

So, it was agreed that we would admit Kathryn for 5 days to Children’s for an NG study. Using the NG tube to feed overnight to see if the added calories will increase Katy’s weight. If that does in fact work, we will then look at the G tube placement again once we have some data. During that admission we will do all the necessary paperwork to list Kathryn.

Thank you for your continued love and support! We could not do it without you. Admissions are hard on all of us, but they are becoming especially difficult for Kathryn.

Pool + Lots of Cousins = AWESOME Day!

Today we headed up to Auntie’s pool for some fun in the sun and to visit with our cousins!! Ashley was visiting from NC. 

We had an awesome day!

So much fun to watch my babes interact with family and get extra snuggles!

 

Today is the day…

Well today is one of the days…Not THE day… (I’m trying to imagine what my blog post will be like when THE day arrives. I won’t know until then, since there is no way for me to imagine those kind of emotions. I imagine it will be similar to the day I delivered Katy girl… I don’t know… I’ll be sure to let you know)

Anyway today was the day that Kate’s case was being presented to the entire Transplant team…finally it seems likes its been months since we learned that she would need a new heart sooner than later and in reality its been just about a month, well 37 days…but who’s counting.

Anyway we spent the day with family, having fun with our cousins and splashing in the pool. ( More on that later) All the while I was waiting for the call…waiting to hear Katy’s kidney function results, waiting to hear what the team had to say, waiting, waiting, waiting…trying to act like I wasn’t preoccupied, willing the phone to ring, because I have learned that I prefer some news to no news (even if the news received is not the news I was hoping for). I am so not a fan of “no news is good news.” To me that’s denial.

I was able to keep my act up until 3pm then I started getting antsy…wondering why the nurse hadn’t called. Was something wrong?! Were the nurses drawing straws trying to decide who would be the one to call Mrs.. Murphy with the bad news? Should I call?! I don’t want to be a pest… Mike says wait… rest of the family has no opinion! I decide that I can’t wait, I beg Mike to call, if its bad news Mike will be able to listen and understand it better than me, and I always take the news better from Mike. (MY GOSH! What would I do without that man)

Finally Mike calls and gets through to the transplant coordinator, she is vague…says Dr. Blume wants a sit down to discuss where we go from here. I am instantly annoyed! I assume this is to discuss the feeding tube AGAIN. We have an appointment for tomorrow at 2pm.

Here, I sit both emotionally and physically drained. But, tomorrow I will be well rested and go in and listen to what the “team” has to say. FYI I am bringing my boxing gloves! I’ll update when we know something.

Transplant Update

Well I had fully planned to give you just a normal Murphy Family non transplant update …you know the kind filled with pictures of us LOVING this life, I still plan to do that. I just wasn’t quick enough and now I am back logged on Transplant info and I feel that right now that is more important…than showing off my little firecrackers!!! For all of you interested in our little girl with her oh so special heart, and for my own documentation. I am thinking it may be time for me to start a traditional journal again, since it seems I never get on here as quickly as I would like.

So here goes…

Today was the final piece we needed to complete before Kate’s case would be presented to the Transplant Gods team. It was a kidney function test, routine test to make sure that Katy’s kidneys are in good working order, since the meds she will need to take post transplant will be hard on her kidneys. Basically the test consists of them inserting two IVs one to administer a radioactive tracer,and another as a port to do multiple blood drawers ( total of 4) As you can imagine that all adds up to another LONG day at Children’s. Thankfully my mom had Patrick. (Thank You Nana)

We arrive at Children’s expecting to just spend the day killing time I mean how difficult can it be to get two IVs in and drawer blood every 2 hours. Well let me tell you… DIFFICULT. I can’t believe how hard it was to get Kate’s IV in. Finally I said enough was enough and demanded that they get the IV team down to do the IVs or we were DONE! MAMA bear was out in FULL force. After waiting 45 mins for the IV team to come she was able to get both IVs in, in about 3 mins. minimal tears for both Katy and Mama.

Live and learn, Kate is hard stick just like her mama and now I know to request the IV team to do any and all IV’s in the future.

Finally at 3:30PM we were all set and ready to roll…just in time to beat the afternoon traffic, which is always a good day.

We should have the results tomorrow and as it looks now, Kate is going to be presented to at the Transplant conference tomorrow AM which will most likely give us a date of when Katy will be listed for her new heart.

I really have no idea how I am supposed to feel… excited, scared, happy, relieved, we are dealing with a whole lot of emotions and I expect to continue on this emotional roller coaster for some time. Still adjusting to our new normal!

Behind Again…

I don’t know how it happens, maybe we do too much, maybe I take too many pictures, maybe I take to long to upload and edit said pictures, maybe life is sometimes crazy and by the time I have a moment to do anything…all I want to do is sleep! Maybe its because I have picked up my knitting needles again and that takes up most of my free time. 

More likely then not…it’s all of the above reasons!! We are too busy making memories, and that’s not a bad thing!

I am sure you can imagine… I am behind on my scrapbooking, to let you know just how far behind I am on the scrapbooks I am working on Katy’s First Year Album 2 working on her 1st 4th of July page…my  goodness was she an American beauty (still is) So, yeah I’m behind.  But, I have set a goal.  I want her 1st year done before her transplant…so I am beating a clock, that I can’t see.  I’ll let you know how that works out for me.

So regaradless of the reasons I am yet again working on the backblog… for my own santity I will be post dating them so when go back to look something up it makes sense to me.  I will try to post a link, but your best bet might be to scroll back and see if there is anything new.  Nothing before June!

Fireworks with my Little Firecrackers

After a wonderful beach day and afternoon naps (BONUS) we headed to Wakefield to watch the Fireworks with Papa, Tracy and Cole.  We did that last year, so I guess you can call it a traditional. The town of Wakefield puts on a great show and its fairly local so makes for a good choice for a family. 

Back before kiddos Mike and I have been know to head into the esplanade…sometimes in the rain.  Or there was that one year we went to Hampton and sat in 4 hours of traffic to get home! All set with that!