Heart Catheterization

The time is finally upon us.  The first step toward Hope's next surgery is a heart catheterization.  Edited to add that Hope's catheterization is scheduled for February 25th.  I am going to start by posting what a heart catheterization is for the non-heart followers:

This is an invasive imaging procedure that allows your doctor to evaluate heart function.  During a cardiac catheterization, a long, narrow tube is inserted through a plastic introducer sheath (a short, hollow tube that is inserted into a blood vessel in your leg or arm...Hope's will be in her leg).  The catheter is guided through the blood vessel to the coronary arteries with the aid of a special x-ray machine.  Contrast material is injected through the catheter and x-ray movies are created as the contrast material moves through the heart's chambers, valves and major vessels.

There are risks to this procedure, but we are praying Hope avoids all of the possible risks.  We are nervous and scared about the next month because after the catheterization, Hope will be scheduled for her bi-directional Glenn surgery.  There will be plenty of time to think about both in the next few weeks, so I am going to stop focusing on them now and move on to catching up with other stuff around here.

Hope is still doing great...one of the reasons they are scheduling everything.  Dr. Prieto wants her to have the catheterization and the Glenn before she starts showing signs that she really needs them done.  She said it is always better to do them before it is an emergency situation.  Hope's saturation levels have pretty much stayed the same and she is still gaining...although slowly.  They are a little concerned because her gain is slow, so the nutritionist will be calling later this week to see if we will move her calories up a little.  I'm willing to try anything, but I know that part of the reason her gain is so slow is because she is awake all the time.  She takes 2 naps a day and neither one is longer than an hour.  She is really active when she is awake and for any other baby, it is great.  For a heart baby...she needs the rest to help her gain weight.

Destiny and the boys are loving on Hope all the time.  It is so cute to see Jerry playing with Hope and talking to her.  He can get her to smile any time of the day.  Paul and Hope get their diapers changed together and spend the whole time smiling and 'talking' to each other.  Paul can be a little rough sometimes, but he always says sorry when he is a little rough.  Destiny is great with Hope and can make her laugh and talk all the time.  Every day is so special and I am treasuring each and every minute watching all of them grow up.  I know everyone says that they focus a lot of their attention on their kids, but I have been actively focusing on it every day.  I find even the smallest details of the day make me laugh, smile, and sometimes cry.  I am so much more aware of everything!

Please keep us in your thoughts and prayers and spread awareness of Congenital Heart Defects whenever you have the chance.

CHD Awareness Week

Yesterday was the start of CHD Awareness Week.  I am hoping everyone that reads this will know how important it is to bring awareness to Congenital Heart Defects.  Hope has been affected as have many other children.  Before Hope was born, we knew very little about CHDs...even though Jerry's sister was also affected by a Congenital Heart Defect that was repaired shortly after she was born.  When we were first told there was something wrong with Hope's heart, we naturally assumed it was something that could easily be repaired.  We were not aware of how serious some heart defects could be.  We certainly didn't know that so many children are affected by this every year. 

Please help us to spread CHD awareness, and pass this information on to at least one other person:

• CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

• 1 in 10 of those born with a CHD will have a fatal defect.

• In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

• The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

• There are approximately 35 known Congenital Heart Defects.

• Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

• There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

• With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

• Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

• Only about 30% of the children who need a heart transplant receive one in time.

• About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Education is the first step in helping these children live happier, healthier lives!

A HUGE THANK YOU

We have received so much help and Hope has received so many presents from so many people and I really wish I could find the time to get cards out to everyone.  I will one day...I just know it.  I want to thank everyone for all of their kindness, good wishes, and presents for Hope and for our entire family.  I want to especially thank a wonderful friend that I made while we were both awaiting the birth of our beautiful daughters.  Lisette is an amazing woman and has endured so much in such a short amount of time.  Our paths crossed because we were both given very grim diagnosis' for our daughters and were able to share a lot of the same feelings throughout our pregnancies.  It was a very difficult time in both of our lives, but I think we both grew a lot emotionally and spiritually.  Unfortunately, Lisette's little girl, Sami, did not survive very long after she was born.  I was and still am an emotional wreck when I think about this because she was born after Hope and I prayed like crazy that she would be spared as well.  I had convinced myself that if Hope made it, Sami would too.  Through everything Lisette has been a huge support for me and imagine my surprise the other day when I get a big box in the mail.  Lisette sent me some very special presents and I am so grateful for the presents and for having the chance to meet such a wonderful woman.  I can't imagine everything Lisette has gone through and then finding the energy to send Hope and our family presents.  I am speechless thinking about it right now.