Tuesday, February 28, 2012

Stream of Consciousness

February Edition

Sorry for the lack of posts lately, February was a rough month for our family.  The kids and I were sick for what seemed like the entire month.  Somehow Mike was able to escape whatever nastiness that we had, Which was great, since I could barely lift my head off the pillow and my fever spiked back up every 4 hours. .  The kids missed a week of school, we passed through Valentine’s Day and our 10 year anniversary.  On the bright side Katy was pretty sick and we even made a trip to the ER, but we escaped without an admission.

We did do lots of napping. 

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We did some baking in the Easy Bake Oven

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We did some crafts.  Katy loves to stamp…just like her mama!

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Did I mention we spent a lot of time in our Jammies?! 

Then we attempted to do a St. Patrick’s Day Photo Shoot…

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That was pretty much a fail… except for this one:

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Love!!

Two of our heart friends… go their special gifts this month.  We still wait, but I know the perfect heart for Katy will be here soon. 

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Thursday, February 16, 2012

10 Years

Ten years ago today, on a beautiful spring like day I became Mrs. Michael Murphy. Our wedding day was so close to perfection.  It was everything I dreamed of as a little girl.  I had a gorgeous princess gown… my handsome groom  had a tear in his eye as I walked down the aisle on my dad’s arm.

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There was dinner dancing, cake smashing and a great time was had by all.  I don’t believe that a wedding makes a marriage, however I do think that our wedding was and is memorable, and I am so glad we did not run off to Vegas like I had threatened to!!! 

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Ten years of marriage  is a great accomplishment nowadays when divorce is so prevalent, and Hollywood has made the 15 min marriages famous.  Mike and I have beaten so many odds. We have faced more in our ten years of marriage than most couples do that have been married fifty years, and we are stronger for it.

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Is the honeymoon over… yup!  But, I am OK with that… We are OK with that.  We are real… we are raising two young children, caring for Katy, juggling extended family and there is not always time for us. We squeeze it in when we can… and maybe that means Chinese take out and Mad Men via Netflix… and I wouldn’t want it any other way

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Mike you are my everything… you make me a better person.  Thank you for our beautiful children.  Thank you for loving me through it all, and reminding me to breathe and enjoy the small things.  Thank you for being my gardener, and allowing me to bloom!!  You are always behind me 100% and I can’t imagine my life with out you.  Thank you for making me Mrs. Murphy.  You are forever My White Knight!!!

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Thursday, February 09, 2012

Sweet Sweet Kate

Has a bad bad cold.

I have tears in my eyes as I write this.  The baby monitor is alerting me to every cough… and every breath. Trying to let her get some rest… but finding it so hard not to keep going in to check on her.  We spent  four hours at the pediatrician’s office in hopes of avoiding a trip to Children’s.  We left with a “Watch her…if she gets worse you know what to do.”  We did rule out Pneumonia, and she does not appear to be in congestive heart failure.   All huge blessings!!  However her heart rate is increased (129) and her 02 sats are low (94), all concerning,  but not alarming. 

I’m feeling helpless… I want to just nurse her through her cold with chicken soup, rest and a jammie day.  I want to be the one to make her better, to know that what I am doing is enough. Not to have to consult with pediatricians, cardiology, transplant, radiology… all robbing me of my job as a mama.  Not to have doctors doubt my decisions, to think they know my girl better than me.

I shouldn’t be crying over a cold… but I am.  I am tired oh so tired, and I am annoyed at the mom who sent her clearly sick child to school last week and as a result took out half the class including two teachers and ultimately Katy.  I know I can’t put her in a bubble, nor do I want to… but common sense is if your kid has green thick snot pouring out his nose, a horrendous cough, and those sick little watery eyes. KEEP HIM HOME!!! Enjoy that jammie day and chicken soup with your babe who will bounce back after a day or two of rest… and maybe just maybe you will spare my daughter, who will not bounce back with a cup of chicken soup and a movie day with mama… instead she will struggle to breath and cough so hard that she vomits.

Prayers are needed and much appreciated.  She is a tough cookie… so much stronger than her mama.  Smiling with a fever of 102… and making the nurses laugh.  She is awesome so awesome and she doesn’t deserve this.

Prayers we can keep this moving and not end up in the hospital where RSV and GI bugs are running rampant. 

Wednesday, February 01, 2012

February is all about HEART

Everyday is all about heart for me.  I never thought I would feel so passionately about a cause.  I am usually not one to rally or preach or shout awareness for causes. There has just never been a cause that triggered a feeling of passion in me to educate others.

Obviously since we learned of Katy’s significant heart defect, my eyes were opened to the amazing, yet heart breaking world of Congenital Heart Defects (CHD).  It just was never on my radar, I never knew just how common CHD’s are.  1 in 100 babies are born with a CHD.  Forty Thousand Babies are born with CHD’s  each year in the United States. 

I find it maddening that I was unaware of the #1 birth defect.

It makes me wonder why was I  unaware of the birth defect that is the cause of  over thousands of deaths each year?!

Why was I aware of Down Syndrome, the Jimmy Fund and all the children suffering and dying from Cancer?  But I was unaware of the #1 birth defect in the world.

I believe that it is because of the lack of funding. In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. (http://www.childrensheartfoundation.org/about-chf/fact-sheets)

Since I became a mother to a child with a CHD.  I have been blessed to meet many of the sweet babies with their special hearts have forever stolen a piece of mine. 

Unlike the childhood diseases that are more recognizable, our heart babies aren’t always easy to spot. 

Genevieve Norton - she is 3 years old open heart surgery at age 2 for Aortic Stenosis and moderate regurgitation.    Genevieve

Jaiden 5 months old Open Herart Surgery @ 5 Days  Jaiden

John  aortic and moderate mitral stenosis   John

Jordan 3 years old                                                                                      Jordan

Pulmonary Hypertension (has a continuous IV infusion through a central line going on 5 years now)                                                                                                       Ava

Rita                                                                                                      Rita

Sam O'Neal, 2 years old. Shones syndrome (variant of hlhs), post bi-ventricular repair                                                                                                      Sam

and of course the girl who has the most perfect broken heart I have ever seen!!

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I have read, and talked and heard all these kids’ amazing stories.  They each have endured more than any child should ever have to endure.  Yet, they all have an unmistakable smile on their faces that make each day a little brighter.

Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.  Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research.  Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research. (www.childrensheartfoundation.org)

Can you imagine what we could do with more research for these beautiful babes, who even though they have been through so much in their short lives have an amazing spirit about them.

Please visit The Children's Heart Foundation for more information and ways to help make a difference.