Monday, February 14, 2011

Spreading CHD Awareness!

I have sat down to write this blog many times over the past few weeks and I have been walking away from the computer.  When someone tells you a story, you want to remember it.  You want it to make an impression.  In telling our congenital heart defect story, I want to tell everyone's story.  I want to educate you, so that we can save a babies life.  I will be telling 'our' story: for all the warriors and angels out there who were born fighting a fight,but I can also tell you that words will not do justice.
I will start by saying this: I'm going to go off on tangents, you must follow me through the end.  Grab a coke and some donuts and educate yourself! I will begin by giving some facts.  One in one hundred babies are born with CHD each year. I had a one in one hundred.  All the babies that are pictured here are 1 in 100! As a parent of a child with CHD, we don't want you to feel sorry for us.  We don't want you to EVER walk in our shoes.  We want you to know as much as you can about CHD so that you spread awareness in hopes that we find a cure and in hopes that is saves a baby's life! We don't want you to judge us as our kid walks up silently to play and maybe our child's only form of commuincation is sign language.  We want to share our story with you just like you want to share your child's story with us.  Every parents most precious gift is their child, Don't ever forget that!



Approximately 40,000 babies that are born have this number one birth defect.  CHDs are the number one cause of birth related deaths.  CHDs originate in the early weeks of pregnancy. I have a tell a story here. I was almost two months pregnant with Raileigh when I started cramping and spotting.  I felt horrible and I thought I was going to lose her.  We had a baby shower for friends of ours at Patrick's school.  That was the longest shower of my life, trying to smile, hearing lots of people say you're next! We hadn't told anyone but our parents that we were pregnant.  I didn't want to jinx myself and end up losing the baby. We left the shower and I called my OB and was told to watch myself and was given the list of things to watch for in case I was miscarrying.  I don't think I slept much that night, wanting God to give my little peanut a voice.  I had a scheduled ultrasound for the next week and seeing our little peanut was the most amazing experience! As parents, you have all been there.  There's nothing more special than hearing the beating heart and seeing the most perfect baby on the monitor.  Some women find out while they are pregnant that their baby has a congenital heart defect.  Put yourself into that parent's shoes.  You go in for your scheduled ultrasound to only have the person tell you the doctor will be in momentarily.  Fear surrounds you as you find out that your perfect peanut has a defect and may or may not need surgery.  Fear, I tell you: fear as we all compose ourselves to work with doctors to compose a plan that is the perfect plan for our babies! I didn't know at the time that my little peanut's voice was going to be one to spread CHD awareness! How blessed we are!

As I stated above, sometimes, it shows up in an ultrasound, sometimes when the baby is days old, months old, adolescence or even adulthood! Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher! I'm not saying don't fund cancer research, let's just raise some money to fund both :)! This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.I think we all are capable of skipping a starbucks coffee or an extra bag of potatoes to give a few dollars to raise awareness for congenital heart defects.  It's My Heart is a wonderful resource that funds research for this! You can support Team Raileigh at  http://imhwalkforchd.kintera.org/keepthebeat/raileighbrooke

So back to 'our' story, I continued my pregnancy as a very normal pregnancy. I went into ultrasounds and saw the baby move.  We found out it was a girl and started looking for pinks and purples.  I had Raileigh via c-section at 39 weeks.  As I was being wheeled into the OR, I remember thinking something was wrong.  Something wasn't right.  I was a little scared and pushed it off as first time Mama syndrome.  Dr. G brought her out and cut her cord that was very snugly around her neck! Can we get a PRAISE GOD for the c-section! Amen! Her apgar score was a 9! She was 'healthy.' I was completely numb from my neck to my toes and Patrick went running out with the baby after I got to hold her and got the first picture.  They were going to clean her up and get us both back to the room.  Raileigh was perfect, but I kept asking the nurses and her pediatrician why her hands and feet were purple.  I must have asked about 1000 times and were always told that it was 'normal'  Then the night before we were suppose to be discharged, Nurse S came in to do some stats and noticed elevated respiratory.  Raileigh was having a hard time latching and we had chalked that up to first time Mommy nurser! The next day, we were told to get our bags ready, that the doctor would be down to discharge us.  This was at 10:00 in the morning.  At 5:00 when Raileigh was 52 hours old, the doctor finally shows up.  She was from India so she had a very thick accent, but was very patient in helping us understand her.  She listens for a while and asks if we knew the baby had a heart murmur.  She asks lots of family history.  She then tells us we're not going home, the baby is going into the NICU for an ekg/echo and she rattled off so many medical terms that I can honestly say my mind went blank.  So here I sit thinking we are going home to only find out that Raileigh has to be monitored.  As a chd parents, we've all been there.  This is when fear strikes us, we think it's going to be the last time we hold our child.  We can no longer do what is 'best' for our child, it's put in the hands of doctors.  I can tell you this I am very thankful for every OBGYN/cardiologist/pediatrician/neonatal doctor/nurses/etc. that have made our shoes much better with the knowledge they have for our babies and the plan of action that we should take.  I can tell you we feel like we're on the verge of a nervous breakdown because our baby is no longer tucked nice and safely inside us, the baby is now in the hands of a doctor to be researched. We have to put complete faith in the hands of a doctor we may know or have just met to help us give our child the best life possible!

This folks is when all the tests start and we feel like we're running around like chickens with our heads cut off.  There is not one mold for a child with chd.  They all experience similar 'side effects.  For one, they aren't hungry and two they have reflux! Do you realize that when you pewk it puts a tremendous amount of pressure on your heart? This is exactly what our babies do not need!

Raileigh's neonatal doctor walked in to meet me because the nurses said I was completely hysterical and he needed to calm me down and that my obgyn would be on her way.  First, I must say, anyone of us are completely hysterical whether they show it or not.  I just happen to be born with the month of July (a cancer) so I wear my emotions right on my face.  The neonatal doctor was at least six foot six inches and I thought maybe professional football player fit his job description better.  I did not get one picture of him with Raileigh, but I can tell you he was the biggest teddy bear in the world and he was the BEST doctor for her.  He was very patient and he would talk and coo to them and they would just turn and listen to his every word! I know that's how all of us feel about our neonatal doctors! It takes a special person to do that job! He told us about the tests and said that he would be back in for results, but not to worry in the meantime that he would keep us posted! That's alot easier than said! Did I mention that Raileigh was born in July, right in the middle of the beginning of summer band for my husband! We thought we were having a baby to come home so he could do some work! God bless the students who stepped it up to take care of business!

So we get the results back and like many parents with CHD here's what we find out: She has a VSD and PDA, so she not only has one heart defect, but two.  She has elevated respiratory.  She is jaundiced.  She has severe reflux.  She was already pewking before she was eating! She had delayed gastric emptying.  She was PERFECT, just like all the other chd angels and warriors.  Our babies are perfect despite all the health problems and they are born fighters! Raileigh was also labeled finicky eater (Really, they haven't seen me try to get her to eat now that she's 2.5 haha) and noisy breather.  We were told that we had a higher chance of SIDS because of her health problems.  She also had congenital hernias that would need surgery, but the cardiologist would have to okay the surgery.  He didn't by the way and they disappeared on their own, so how's that for AWESOMENESS!

We were discharged a week later.  Raileigh dropped from 6 pounds .7 ounces to 4 pounds 9 ounces and she had five doctors that would do followups: cardiologist/neonatal/pediatrician/gastro/ent.  So we left with lots of appointment cards and were told to watch for blue hands and feet/ blue lips and her not breathing and to call if we had any questions. We now had a baby who was failure to thrive and who had to beat the odds against her.  That is when I decided right then and there that I would give Raileigh the best life possible for her and I would do everything in my power to make sure she lived a very happy life!
Many parents don't even get to hug their little peanut before they are rushed off to surgery! Do you know how hard it is to hand over your baby to a doctor who is going to stop your child's heart to fix it? Do you know how much faith you have to put into another human's hands when you do this? Many children have had three heart surgeries by their second or third birthdays.  Each time, a Mommy and a Daddy kisses their child goodbye praying that the doctor will be able to repair their child's heart.  Again, stopping a heart to fix it.  I think you can skip a Coke today and help us raise some CHD awareness.  Don't say it will not happen to you.  Many athletes have died on the court/field because of an undetected heart defect yet babies are leaving the hospitals every single day without testing!! Why are we letting this happen?

Right now, I want you to pray for all the families that have CHD angels! May God give each family the strength to spread CHD awareness and may the angels live on and their stories be heard! We have been very fortunate in that Raileigh's PDA closed at a year, yet her VSD remains open.  It is open at the aortic valve which we are monitoring for leaking.  We go to the cardiologist in March.  This appointment consists of four blood pressure readings which royally irritate her, followed by an EKG which she just wants to pull all the cords off and then an echo which she wants to rip the cords off again.  Each time we pray for patient nurses and doctors who understand our child's fear of invaded personal space.

Our children do not look or act sick.  If you relook at the pictures above, you will see this.  They are normal kids trying to live very normal lives.  Some have restricted activities and some are able to participate in sports.  Some have delayed speech and walking. Some walk before they are a year.  Some have already gone home! They are all different, yet they all share the same characteristic: CHD.  As parents, we want to make you aware.  As parents we want you to help us spread awareness! As parents, we wan you to treat our kids the same as you treat your own, even if they are just a little different in the playgroup! We want you to teach your children that all of us are different, yet we can all be friends! We want you to keep your sick kids at home so that our children can enjoy going places without getting sick.  We want you to understand that we don't always fight the typical infection like your child. A simple cold to you may mean a hospital visit to us.  We want healthy kids just like you! We want you to take our stories and share them with other people! We want you to love our CHD angels and warriors just as much as we love them! Collect items as a family and take them to the children's hospital! You never known, you may get something back in return one day.  I ask that you take this story and you use it to Pay It Forward.  Share some HEART LOVE today! Please if you have a dollar, donate to Team Raileigh! http://imhwalkforchd.kintera.org/keepthebeat/raileighbrooke
I have been blessed to meet so many heart families and wonderful children.  Here are 12 pictures of angels and warriors who fight the CHD fight! I would be honored if by the end of February if I had 28 photos to share with you.   Each child with a very unique CHD story! I'm just one Mommy with one voice, but if you join with me, that would make our story continue! Educate yourself; it will save a life!

I would also like to thank everyone who gave donations and came to our ugly sweater party on January 29th to kick off CHD awareness month! We have two laundry baskets full of donations for It's My Heart to place into comfort bags! This was a very special experience for Patrick, Raileigh, and me! May God continue to bless our community as we raise awareness! A blog to follow soon on the Ugly Sweater Party!

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