Changing the World in 4 short years…

My Katy girl is a sassy precocious 4 year old!!
 
How did that happen? It is amazing to me how truly wonderful she is. Katy has a spirit about her that has gotten her through some pretty difficult days. She faces her struggles with a smile and lights up the room with the twinkle in her eyes. She reminds us to stop and live, laugh and love. She has touched the hearts of many people who have never even had the opportunity to meet her.

I am so lucky to be her mom… I think that almost everyday.  She has a sense of humor (much like her mama’s) and a kind and caring heart just like her daddy.  She is a great little big sister who just really enjoys life.  No matter what she is doing she is doing it with a smile on her face.  Unless of course I am asking her to help clean up, or it’s time to get ready for bed…then you will see the fiesty side of her that I love just as much if not more than her sweet side.
I have no idea what her 5th year has in store for us.  I do know that we will enjoy every minute of it, because the years are flying by.
Happy Birthday  Sweet Katy Girl!! 

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.

 

Blahhhh…

I know here comes Debby Downer… I am! I am just down… and the only thing worse than me being down is Mike being down… and he is. I mean who could blame him, he is here, right along side me… trying to get through the days…waiting and waiting and some more waiting. Watching subtle changes in his little girl, our little girl reminding us that her heart is getting weaker. For as much as Katy is the light of my life…she clearly hung the moon in Mike’s eyes. I have never before seen such an amazingly, wonderful relationship than the one that Mike and Katy share. From day one they have been smitten with each other and let me tell you how happy that makes my heart! I love that they each have the other wrapped around each others fingers.

So although, I could tell you all the ways our life could be worse… and I know it could. I am reminded of what a dear friend always says when I say that…she kindly tells me that I am right, it could be a lot worse, but it could be a heck of a lot better. I suppose she is right, but when I think that, I’m reminded that maybe some of our days are long and our nights are often sleepless, but most times are days are fun, and we are busy making happy memories, and our faith is restored when friends, family and sometimes perfect strangers do nice things for our family because we are going through a difficult time.

So in an effort to take back our life, and to STOP living ( if you can even call what we have been doing living) and take back control of our days, our lives, both as a family, as a couple and individually.

It is best for all of us, but I know its certainly not going to be easy.

The kids are signed up for story hours twice a week.

A Family membership to the Y was just so kindly and generously donated to our family. I plan on making good use of that member ship.

Mike and I had a date night on Saturday… I can’t tell you the last time we did that and it was ordered by Katy’s doctor.

So expect some more fun pictures and expect to see us getting back to the old ways… I know that in any moment our whole life can drastically change… but right now I am going back to the basics, remembering how to have fun and enjoy my family.

Thanks to all our new readers…welcome!! Glad to have you. I love hearing from you and love that prayers are being said for our family all over the world.

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!!!

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!