Here's my Every Heart Has a Story - How CHD Affects your Relationships

This blog event is going to be intense because anytime you have a sick child, relationships are going to change.  They seem to get stronger in the beginning, but slowly...over time they change.  I am going to start with the relationship that changed the most...that with my husband.  We had not been through much in our relationship...a couple of babies and buying and remodeling a house together.  It is truly amazing how much we have grown in the past year.  We have cried, yelled, smiled, and laughed.  We have grown together and have learned so much about each other and our relationship.  My husband cried when each of our kids were born...he couldn't stop crying when Hope was born.  He is my rock...whenever I am scared, he is there for me.  He has had to calm me down many times...some have been in the hospital when I had very little sleep and almost went overboard talking to a nurse.  I remember the day we were told that the doctors at the first hospital would not do surgery and they thought Hope did not have much of a chance of living.  We left shortly after they told us to come home and spend time with each other deciding what we should do.  We should never have gotten in the car and I don't know how we made it home between the tears that were shed in the car.  I realized at that moment that my husband and I were on the same page...we would do anything to help Hope live.

You can see the tears in his eyes...this is my favorite picture of when Hope was born.

My friendships started to change when I had my first son, Jerry.  Prior to that, most of my friends were single with no kids.  After Jerry was born, many of those friendships changed, so when Hope was born...it was no surprise that the friendships that remained would change as well.  I don't mind so much anymore because I have made some wonderful friends within the heart community.  We all share so many thoughts, experiences, and emotions that it is natural to become friends. 


Family relationships have grown stronger.  My family has always been pretty close and with Hope we are closer.  Everyone went out of their way to help when Hope was in the hospital.  My mom took time off work and my sister was there whenever we needed anything.  Jerry's sister lives close to the Clinic and it was perfect to drop the boys at her house on our way.  Everyone was supportive when Hope came home after the Norwood and totally understood that she could not get sick.  It was hard for everyone, but we got through with only one cold.  Now that Hope has had her Glenn, we feel a little more comfortable.  I still won't taker her around family when they are sick, but we do go out and she has had her share of colds.  Hope still has her Fontan and I know our families will be there for us.  It is harder now because she is just like any other little one and doesn't look sick at all.  I think many people forget how sick her heart is and how bad it is if she gets really sick. 

Jerry's mom and dad

My brother, John...all 6 foot 7 inches!

Mary - my stepmom

My mom and her sister...my Aunt Betty

My mom and her brother...my Uncle Mike

My sister...and her family went out of their way to help us.  They put thousands of miles on their car, always made sure they were available, and fed us when we didn't have time to eat.

Jerry's sister, Gerileah and her son Daniel

Jerry's sister, Danielle and her husband, Greg

My mom...she is the best.  She took a lot of time off work to make sure someone was always with Hope and to make sure the boys were taken care of as well.

Now for the relationship that I think has changed the most...my relationship with my kids.  I never thought about losing any of my children...it just doesn't happen.  Then I had Hope and I realized how precious life really is.  I realize there are no guarantees in life.  It is a harsh reality, but one that makes all relationships grow stronger.  My boys have been through a lot.  I took Jerry out of preschool last year when Hope was between her Norwood and Glenn.  It was hard for everyone, but the boys went through the most.  They were shuffled between family members and they didn't see much of mom or dad for the first 6 weeks after Hope was born.  The Glenn was a little easier...only 6 days, but still difficult because Jerry and I were at the hospital the whole time.  More shuffling and schedule changes and just not seeing us very often.  They have lived with therapists and nurses visiting Hope all the time.  They have lived with feeding tubes and medicine for Hope...a lot of attention on one little girl.  I try and spend time with each of my kids by themselves so they feel like they have my undivided attention.  I know it doesn't fully make up for the attention that Hope gets, but I hope it helps a little. 

My beautiful step-daughter, Destiny.

My oldest, Jerry

My middle child, Paul...we have a lot in common

My beautiful family!

I definitely want to thank Stef for putting this blog event together.  It is great to be able to share our lives with everyone and get to know so many wonderful families.  The best is knowing that we are not alone...in the good times and bad...someone has shared our feelings.

Walking

Yes...she is really walking.  Only a few steps, but she is doing it all by herself.  Everyone keeps telling me that someday soon she will just take off and start walking everywhere.  Ha...they don't know Hope.  She will continue her little steps until she feels 100% comfortable that she will not fall or get hurt.  She doesn't like to just plop down on the ground...she likes to daintily sit herself down.  She is extremely graceful when she 'falls'.  I wish I had a video to show you her gracefulness.

Onto some other things...CHD week did not go as well as I had hoped.  I have not made it to the Clinic to drop off the bags.  I even know a mom that is there with her son and still can't find the time to get there.  Work has been crazy busy and so have the kids.  If I don't make it before the end of CHD week, I will definitely try to get there by the end of next week.

There are a lot of little ones that are going through so much right now.  I don't know how to capture all of them that need your prayers, but I am going to try:

Logan is an amazing little guy and his mom has become a close friend in the past 6 months.  Logan went to Boston and did amazing through his cath.  They were all getting ready to come home and the surgeon decided it would be better if they went in and made his confluence bigger through surgery, rather than just keeping it ballooned.  I was really hoping they would be home this weekend because we are all healthy at my house and that doesn't happen often.

Frankie is another little guy that I plan to meet sometime soon.  He is at the Clinic and his mom and dad went through a lot of the same stuff we went through with Hope.  They were told to take their little guy home to die and thankfully they decided to get a second opinion.  I am so happy and I am praying Dr. Mavroudis will work his magic on Frankie like he did for Hope.

I have been following Emma since she was born in October.  She is an amazing, beautiful little princess.  She also wears the most beautiful bows I have ever seen.  I wish Hope would wear a bow like hers for more than a minute...she absolutely hates them.  Anyway...she is waiting for her new heart and needs your prayers.  She has not been home and I know it would make her parents so happy to bring their little girl home...especially with a brand spanking new heart.

Jet is a little sweetheart and is currently waiting for lungs.  His family has gone through so much with their little man and I can't imagine how hard it would be to be separated from family for an extended length of time.  I admire his family and the friends and extended family that have been there for them.  Please pray for lungs for little Jet and also keep him in your prayers as he will be having a cath on Monday.

I wait for updates on Parker every day.  This little guy is so strong and has shown everyone that has followed his story a miracle in the making.  His mom shares her fears on his CaringBridge page and it brings up so many memories.  She writes and shares better than I ever could and it inspires me and I can actually feel what she is going through.  Please keep them all in your prayers.

CHD Awareness Week

When Hope was in the hospital we got an amazing bag of goodies from a parent that spent time in PICU with her son.  It was filled with food, water, and stuff to do.  It was wonderful and I got it on a day when I really needed something to take my mind off everything that was happening.  I knew I wanted to do something similar this year for the families and I finally got some bags together.  I will be delivering them to The Cleveland Clinic Children's Hospital one day this week.  I don't know what day yet...it will depend on how busy the week is at work, but it will definitely be by Sunday of this week.

A few other things to share.  Hope took her first steps today and it was amazing.  There are certain milestones that just hit me...walking is yet another one.  For any parent that has been told they should take their baby home to die and be able to see that same baby 16 months later taking their first step...AMAZING!  I didn't have a camera handy, but I am including a cute picture of her 'shopping'.  She has been pushing stuff for a long time, but her first unassisted steps brought tears to my eyes.

I hope everyone has a great week.

Awareness Month

Today marks the first day of Heart Month.  This is the month to bring awareness to heart disease and for me it is a month to bring awareness to Congenital Heart Defects.  Heart disease affects many people and much funding is raised in support of heart disease.  I would like to see Congenital Heart Defects receiving some of the funding as well.  The statistics are staggering (the following is from The Children's Heart Foundation...a foundation that is near and dear to me and my family:

Incidence, Morbidity & Mortality

• Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

• Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
• There are an estimated 2,000,000 CHD survivors in the United States.
• For the first time, more than 50% of the CHD survivors are adults.
• 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

• 91,000 life years are lost each year in this country due to congenital heart defects.
• The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• 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.  

CHF

• The Children’s Heart Foundation is the only organization that was created to exclusively fund congenital heart defect research.
• The Children’s Heart Foundation has directed $3.9 million to 41 basic science, translational and clinical CHD research projects at leading research centers across the US and Canada.
• CHF has published and distributed 35,000 English and 3,000 Spanish copies of It’s My Heart, a patient and parent resource book.
• CHF has established eight Chapters and has volunteers in many US states.

 Research Allocations & Impact

• 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.
• The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
• In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.