Friday, January 21, 2011

Most Days I am VERY Happy

but...days like today SUCK.  I know it is the 'google' depression.  Spending too much time on 'google' and then thinking about all my little girl will have to endure in her life.  It is NOT fair.  I hate thinking about everything and I hate the tears that have been flowing so steadily all day today.  This post is going to be long...I can feel it already.  I can't stop thinking and am typing as I think, so bear with me.  I don't usually have really long posts, but I just feel the need to write out my feelings today...good and bad.

I know there are a lot of people that believe that God does not give us more than we can handle, but I don't feel like that today.  I don't understand why God would give my daughter so many health problems.  I don't know why God would want so many heart angels.  I am having a un-God-ly day today.  I am not super religious and when days like this makes me question everything I have ever believed.

Here are just a few of the thoughts that have been running through my head (just to give you an idea of what days like this are like).  It is sort of like a story we had to write in school - who, what, when, where, and especially WHY:

Who would make a child go through all of this in her life?  Is it God...maybe.  Is it us because we didn't listen to the doctors before she was born and then after when they told us to take her home to die...probably.  Were we wrong?  I don't think so and I wouldn't change anything.  I know there are people out there that would not agree with our decision.  I have heard that we are selfish and only doing what is in our best interest...I think that is a crock, but I can understand the theory.  Who would knowingly want their child to have open heart surgery?  You know how I answer just don't know what might happen with any of your children in the future.  My perfectly healthy boys may develop some issue in the future (please more) and I don't think anyone would tell us not to fight for them with every fiber of our beings.

What can we do to fix Hope?  This is something that I think about all the time.  I am a fixer and so is Jerry.  It is so hard to know that we can't fix her...that we NEED a team of medical professionals to help fix her.  We actually realize that because she only has one ventricle she will never truly be fixed.  And...transplant brings it's own set of problems.  We would do that for her too.  If anything ever happened and she needed a transplant, we would list her in a second. 

Where is the best place for Hope to continue with treatment.  I have thought a lot about this because I want to make sure she receives the best care possible.  I love her doctors at the Cleveland Clinic Children's Hospital.  I am comfortable there and know they will do everything possible for Hope.  It is close to home (well close enough). the back of my mind I think about CHOP and I wonder if their single ventricle program is something Hope she be a part of.  I have had parents tell me that they don't understand why I don't take Hope to the 'best' hospital...why I want to stay local.  I feel comfortable and I know everyone will work extra hard for Hope.  The doctors are great and even though they are not the best known doctors, does not mean they don't perform a lot of surgeries or that they don't know what they are doing.  The week Hope was born, Dr. Mavroudis performed at least 3 other Norwoods that I know of...probably more that I didn't know about.  That is a lot.  All of them are doing great Glenn.  To me, that is 100% success.  I am staying where I am at...especially with that success rate!

When...this is the hardest question for me because it takes me to a place I don't ever want to go.  When will Hope die?  Will she outlive me?  I pray for that every single day.  No parent should ever have to bury their child.  When will she have her Fontan?  Will she be big enough?  I don't know the answers to those questions.  Best guess...during the summer of her 4th year is when I am thinking it will be done...maybe her 3rd 2013 or 2014.  When will her kidney's fail?  NEVER is what I pray for every single day!  Hope has proven to be a medical miracle and I pray that continues for a VERY VERY long time.  This is the one area I don't let myself go to very often.  I hate it and I hate thinking about it.  The very thought that we may have to bury Hope is unbearable.  We treasure every minute and appreciate life so much more because of all she has been through...but in the back of my mind sits this horrible thought.

Why Hope...I have lived my life...done everything I have ever dreamed of doing.  I have done more living in my 40 years than most people do in their entire lives.  I have seen the world and stayed in some of the nicest places you could imagine.  Why couldn't I be the one with all the health problems.  I would understand life so much better if it were me that had to go through open heart surgeries and probably a kidney transplant.  Adults should go through these things...not kids.  Kids are innocent and should remain innocent.  They should not be afraid of doctors and nurses.  They should not be afraid of the hospital.  They should not have to spend time in a hospital room.  They should not be poked or prodded or have any type of surgery.  They should be able to live and be happy and never have to understand any of this stuff.  My oldest son knows Hope has 1/2 a heart.  He knows it will be a long day when Hope goes to the doctor.  He plays extra special with her when she comes home.  He knows all of her home health nurses by name and loves them as much as Hope and I.  My boys should NEVER have to know any of this...they should NEVER have to be afraid.  I worry about them and what affect all of this will have on them.  I pray it will make them more compassionate and caring boys/men. 

OK...I am done.  I am emotionally spent and don't want to think about any of this anymore.  I know it will always be in the back of my mind...and it will stay there.  I would love to believe these thoughts will never come back, but I will try and make them stay where they the back of my mind.  I plan to get back to the positive life I have been living for 40 years.  I will cherish my life, my husband, my kids, and everything that goes with that every single day.  It is how I live and will continue forever.  I am grateful for the life I have led and will continue to lead.  I am blessed with so much and I will focus on that and stay away from the stuff that brings me down.

Wednesday, January 19, 2011

Appointment Update...Heart Good - Kidneys Not So Great

You know...isn't it bad enough that my little princess has to have half a heart, but to include kidney issues is just really sad.  Prior to her birth, we were told that she would not have one of her kidneys.  When she was born we were told she had both, but one was very small.  Now, it seems she has kidney dsyplasia in both of her kidneys.  Here is some information I found on this:

In kidney dysplasia, the internal structures of one or both of the baby’s kidneys do not develop normally. Fluid-filled sacs called cysts replace normal kidney tissue. Kidney dysplasia usually happens in only one kidney. A baby with one working kidney can grow normally and has few, if any, health problems. Babies with kidney dysplasia affecting both kidneys generally do not survive pregnancy, and those who do survive need dialysis and kidney transplant very early in life.

So...Hope is a miracle.  Many babies with kidney dysplasia in both of their kidneys do not survive pregnancy.  Hope...even after two open heart surgeries which adversely impact kidney function...has not needed dialysis and is more than alive...she is thriving.  Just another miracle to add to the list.  I know her outlook does not look great...she will probably need a new kidney someday.  We are hoping she will prove everyone wrong and never need a new kidney.

Now...onto the good news.  Her heart function looks good.  Her sats, blood pressure, and echo all looked good.  Her tricuspid valve is not leaking much at all...actually they didn't see any on the echo, but it probably is leaking a little bit.  We don't go back for 6 months!  I can't believe we are free of the cardiologist for 6 whole months.  AMAZING!

Of course...the biggie at both appointments...her weight.  It just doesn't seem to be going anywhere.  She isn't gaining or losing.  She is staying basically the same...almost 16 pounds.  It is frustrating and depressing.  It is the one thing I really thought I had some control over, but I don't.  No matter what I do, she doesn't gain. is driving me insane.  I am still trying any and all ideas, but to no avail.

The rest of life seems to be moving along.  Hope will stand unsupported now, but still hasn't made that first step.  I know she will in her own time.  She babbles all the time and is saying quite a few new words...mommy is her favorite, followed closely by daddy. 
My little ones love to take baths...they could spend the whole day in there.  I don't want to hear about how I shouldn't take these kinds of parents took hundreds of pictures of all three of us (me, my sister, and brother) in the bath together...they are cute!

I hope everyone is having a wonderful new year.  I think of my heart family often and you and your little ones are never far from my heart.

Saturday, January 1, 2011

Good Bye 2010...Hello 2011

We are ending 2010 with so many blessings and feel so good going into 2011.  2010 has shown us the strength of family and friends...old and new.  It was a year of growth and learning.  There were ups and downs...just like every year, but we got through each of them appreciating the ups and weathering the downs. 

I have used my blog to keep everyone updated on the happenings in our family...especially with Hope.  I plan to keep it up and share more of our lives in 2011.  As a family, we have resolved to spend more time with each other and get healthy.  We have put off our own health for so long and this is the year to regain it and hopefully the hubby and I can lose some weight we have gained over the years. 

We hope everyone has a happy, prosperous, healthy New Year!  Here's to 2011...may it bring you all your hopes and dreams.