The CHD Community: A Special Club

I am a sorority girl. There. I said it. No shame in it! I decided I wanted to join Sigma my junior year of high school when a really cool youth worker who is now one of my dearest friends (and we also happened to marry cousins so now we're family) drove up with that sticker on her car wearing a really cool t-shirt. I asked her what Sigma was and she told me about this amazing Christian sorority. I wanted that! So by the time I got to UNT my freshman year I knew exactly what I wanted -- to rush and pledge Sigma. I wanted it sooooo bad. I still remember carefully picking out my outfit for every rush event and going to my interview. Thankfully they gave me a bid and the rest of my college years were filled with fun, friends who really got me and the building of relationships with really great girls, some of which I am still actively doing life with. I wanted to be in that sorority, that community so badly and it was everything I dreamed it would be. That was a group that I chose that just so happened to choose me back when they handed me a bid.
Now for a group I did not choose to be in: The Congenital Heart world. Most would have turned down that bid. But it's not a bid that you can turn down. My sorority bid came on really pretty paper in a really pretty envelope delivered by really excited girls. I guess the equivalent of the bid we got for the CHD world was a sketch of Pierson's broken heart that his cardiologist artfully drew for us when he was gently explaining why P's heart was broken. Really it resembles more of a kidnapping than a bid delivery. As much as I would like our child to be heart healthy and to still be living in complete ignorant bliss not knowing what a congenital heart defect really is, that's not our situation. We were chosen to be a part of this group, this community.
The kicker here? We are thankful to be part of this community.
No, I haven't lost my mind. I know to some of you that sounds crazy. Why would you want to be part of that community? Everyone's sick! It's scary in there! People lose their children in this club. That's all true, but stick with me here.
I'm thankful for this community and this group because without it we would be completely lost and feel so alone. You've heard me talk about how 1 in 100 children has a congenital heart defect before. Because of how common this is there is a great community out there that not many people know about. It's made up of heart dads, heart moms and 40,000 new heart heroes in North America alone every year. These families have lived through the horror of learning their child has a broken heart, handed their broken babies over to capable strangers, many of them have seen their children's hearts beating through their still open chests. We've seen blood draining out of our children's chests through tubes, gathering in a tank of blood and fluid that would make most people vomit. We've watched as lines were pulled out of our children's hearts right there in the ICU as we watched and our kids didn't even flinch.  We've seen our precious little children put up a fight for their lives. We've seen them hurt. Oh, how we've seen them hurt.
So here we are, in this club. It's a helpful club filled with people who really get where you're coming from, even when your children don't have the same CHD. It's because of this club that we were able to meet a family who had a child with the same CHD as Pierson. These club members shared with us in brutal honesty and with incredible compassion what Pierson's surgery would be like, what he would look like the first time we saw him and even showed us their infant son's scars right in the middle of a Ben and Jerry's within minutes of meeting us.
The CHD Community is filled with Internet friendships. We find ourselves praying for children who live thousands of miles away and crying when a precious members of our community pass away too soon. We rejoice when a milestone is reached. We share stories and bounce ideas off of each other. We can talk about our kids hearts to each other and actually feel like the other person is following along because we all got a crash course in cardiac anatomy and CHDs.
And if you're really lucky, you get to be a part of a local chapter of this community. We are that lucky. Our local chapter of this club is called Amazing Little Hearts and it has blessed our hearts. The two big whole ones and the little repaired one. ALH is how we got to meet the couple that mentored us before Pierson's surgery. They are a great support system for families. Yesterday they put on their annual "Heart Party" honoring all the CHD survivors. I'll admit I had to choke back tears at one point watching all these little miracles running around as if nothing had ever happened to them. Precious little miracles. P had a blast!! I love that P will have memories of the hospital other than just heart surgery and "the noisy room" as he called the congenital heart surgery unit. We got to see our precious child life specialist Margarita, P's heart surgeon, Dr. Mendeloff and visit with some of our fellow community/club members. Every child, every family there has an incredible story to tell. To think how many of us would have empty arms tonight if God hadn't intervened and provided these doctors and nurses with the ability to save our children. My heart breaks for those who do have empty arms... that could be any of us.
This might not have been something we would have chosen, but we're thankful the Lord chose it for us. It's all part of His bigger plan for us, and Pierson's story. It's an honor to have received a bid.
That same awesome youth worker who is now my cousin-in-law that introduced me to Sigma wrote me these precious words in the days immediately following P's diagnosis: "Had this situation not happened, this "world" would have never existed for you, but new doors have been opened. Take them. Trust in God to lead. To heal. To transform. What a beautiful picture of taken a broken heart and making it heal and do what it needs to do. Much like God does with ours, transformation."
I get it now. Humble member, right here!

P on top of the catterpilar tail with his CHD Survivor ballon that he "never" wanted to take off his wrist.

Family pic @ the ALH Heart Party

A pic the hospital PR rep took and put up on their Facebook page

P and his wonderful, talented heart surgeon

P and his popcorn and the tree in the hospital lobby. 2 of his favorite things!

What You Can Do to Help a CHD Family

I think I know what a baseball feels like on the receiving end of Josh Hamilton's bat, because that's what it feels like. It feels like your whole body just got smacked with a giant baseball bat. You see the doctor's mouth moving but the words coming out are so foreign and unbelievable and your brain struggles to keep up, even though he's speaking plain English. It feels like someone has found a way to put your heart and stomach in a clamp and won't quit twisting it and trying to pull it out of your body. Like breathing is something you suddenly have to be conscious of because you might forget to breathe. That's how it feels in the first moments when you find out your child has a congenital heart defect and will require surgery. It's just the most horrible, terrible, awful, unreal feeling.
In the days leading up to Pierson's surgery we had so many sweet people ask what they could do for us. The truth is, we had no idea. We knew we needed prayer, so we always asked for it, but other than that we couldn't wrap our brains around what we needed (other than an escape from this nightmare).
Now that the surgery part of our journey is behind us (prayerfully, forever) we have some more perspective. There are many ways to help the family of a child with a CHD.
1. Pray. Even if praying "isn't your thing", give it a shot. I promise you we felt the prayers being lifted up for Pierson and ourselves. It never got old to have someone tell us that they were praying for us. It was also very touching when someone who didn't pray regularly told us they had said a prayer for Pierson. Pray on your own, pray with your family. Pull together a group of people while the child is in surgery if at all possible to lift up the surgeon and nurses operating on the child, the child's health, for them to be sustained and for a recovery free of complications. Pray for the parents in the waiting room. It's horrible to have to hand your child off to capable strangers and then just wait. Pray while the child is recovering. Pray when they get home. Keep praying for them when they come to your mind. Praise God for saving them and continue to pray for their health.
2. Feed Them: For those families who have a little time before surgery, find out when their doctor's appointments, pre-op visits are and bring them food that night. These visits are emotionally exhausting and a warm meal that the family doesn't have to expend any energy on is greatly appreciated. Arranging meals after they get home from the hospital is also crucial. You can use websites like Food Tidings to arrange meals so people from various places in their life (church, work, neighbors, etc.) can all participate.
3. Care Baskets: Small care baskets filled with easy to stash food. Cold brew instant coffee is a great idea. You don't sleep much when your child is in the heart ICU and adrenaline only goes so far. Caffeine is good. Also stashing small snacks (crackers, pre-made wrapped rice crispie treats, granola bars, cookies) are fantastic because parents can stick a few in their mouth in a corner of the hospital room where food is contraband (surely I'm not the only one who has done this) swallow and get back to their child. There were days where this was the only food Jeff or I ate. Magazines, children's books, a blank journal, pens, crayons, fun band aids, small toys or stuffed animals, face wipes are all great ideas.
4. Blood Drives: Almost every kid who has heart surgery needs blood. You can speak to the parents and see if their child might need blood. Most blood companies will credit a patient for every pint of blood donated. This will save the family mega money on medical bills. Each blood bank has different rules. Check with the local blood bank in your area.
5. Laundry: Many hospitals have laundry facilities for patients that stay longer term. However: the dilemma is, do I leave my very sick child so I can wash my clothes? Many times the answer to this is no. Offer to take their clothes, launder them and return the clothes to them that same day. You can also offer to do this is one parent is staying at home with other siblings while they have another child in the hospital. While it is humbling having someone else wash your underwear it will be a huge relief for them.
6. Money: So many people assume that these families don't need extra money because they have health insurance. WRONG! Many insurance policies cap out leaving families responsible for astronomical hospital bills. The average heart surgery and hospital stay well exceeds $1 Million dollars. Take also in to account the amount of time these families have to take off work, often without pay. Keep a family from bankruptcy. Walmart has MasterCard money cards you can load up that can be used to pay bills. Gift cards to grocery stores, Target, Walmart, Restaurants (especially close by the hospital) are also precious gifts. You can also see about setting up a benefit fund at a local bank. Writing a check outright to a family may seem like a great idea and is a wonderful gesture, but just know that it may not make it to the bank for a few weeks due to the lengthy hospitalization and the craziness that ensues after heart surgery. Therefore, it may mess with you balancing your checkbook. You've been warned. Cash stashed in a sweet card is always good!
7. Listen: When your child is diagnosed with a CHD you go through a mourning and grieving process. Sometimes all a heart parent needs is a good friend who won't judge to talk to about all of this. Someone to share with. It can be hard to talk to friends about what is going on with your child because you don't want to bother them or feel like that's all you talk about, but the fact is sometimes you just need another outside ear.
8. Spread Awareness: Just because your child doesn't have a CHD doesn't mean that you can't spread awareness. You see pink ribbons everywhere and we all know what they represent. But where are all of the red and blue ribbons? If someone saw them, would they know what they meant? Do your heart healthy kids know what a CHD is? Most women know how to do a self breast exam, but do we know what to demand from our doctors when our babies are born and at their doctor's appointments to ensure no CHD goes undetected? Do we talk to our friends about what to look for? Participate in walks, talk about your CHD friends' experiences. Visit this Etsy pages and buy jewelry and address labels. Wear red. We've got to make his known and get to talking.
I'm sure I left some ways to help out of this list. Heart parents, feel free to list more in the comments section.
It's hard to say what you need when you're so devastated that your're scared to talk for fear of bursting in to tears. Know that there are needs. Sometimes just offering something specific is the right thing to do, rather than saying "if there's anything I can do...." because that makes things easy in a time where almost nothing is.
I leave you with some pictures of Pierson and his best friend Jack spreading awareness about Congenital Heart Defects today at school. These boys were delivered 4 months apart and were very likely in a group of 100 babies delivered by our OBGYN. Pierson is the "1" in this 100, Jack is one of the other 99. So thankful for these boys and for Jack's mommy and family who have been so incredibly supportive for us through our journey.

To My CHD Son's Future Wife

Dear Pierson's Wife,

Every time I stroke that sweet little soft blonde hair and look in to those bright blue eyes I thank God for saving our son. This disease takes so many but Pierson has been saved. I know that one of the reasons his life has been spared is you. We came so close to losing your husband when he was just 3 years old. I know that God has big things planned for our son, your husband. He's only three and a half right now but he has been used by the Lord so much already. He's had to work harder to do things that many kids his age didn't have to try hard to do, but we just count those things as accomplishments and know that these experiences are shaping him in to the man that you will love.

When you rub your hand across the faded scar from his heart surgery, remember how God has already provided for you by creating and saving this man to be your husband. Be reminded that we are all fearfully and wonderfully made and that no part of these bodies He has given us are coincidental or an accident, rather precisely made to glorify God. We serve a big God who is the same today, yesterday and forever.

We have so many hopes and prayers for Pierson. Our first prayer has always been that he will fall madly and deeply in love with Jesus. We pray that he knows Jesus in this way not only so he will be saved, but so he can glorify God fully and know how to love and lead you and your children wholly.

I know that one of the reasons God saved Pierson is you. I don't know who you are, or if you've even been born yet. You may live down the street or around the world, but I've been praying for you since October 15, 2007 when we found out Pierson was on his way. We pray that God is preparing your heart for purity, passion and love. We pray that He is softening your heart for Jesus and that you will come to know Him at a young age. We pray for your parents, for their safety and health and that they may seek God's guidance in raising you.

I pray that you two will be blessed with children and I pray that they will be born healthy and always remain healthy. I pray that this isn't something you ever take for granted. I pray that you and Pierson will be able to minister to and support other couples who have sick or disabled children. I pray that this is just one of the many ways you will serve the Lord together.
I pray that every cardiology visit you go to with Pierson will remind you of how great our God is. I pray that God gives you knowledge of his heart condition so if the day comes where he needs a procedure or a surgery as an adult you will be able to fully communicate with the doctors and be an advocate for him. As much as I would love for this to be my responisibility forever I realize that when Pierson becomes an adult, and especially when he leaves our family to form his own with you, that it's something you two will take on together. His congenital heart defect won't just be his, it will also be yours. We will always be here to support you both along the way.

I pray that you will both be bold and courageous. I pray you will serve boldy, side by side. God has already used, and will continue to use Pierson's heart story for the Lord to open up doors to tell his story and of His greatness. Never be afraid to start a conversation or encourage someone who needs it.

As I write this I'm burdened that so many of our heart friends might not live to see their wedding days. Never take each other for granted. Life is so very short and every day is a gift. That's something that Pierson has taught us during his third year on earth with us. Treasure him. We're teaching him to treasure you. Never forget that God chose you two especially for each other to do life together. Things are not always going to be sunshine and roses. Remember how precious your lives are and how precious the gift of marriage is.

Be bold. Live for the Lord. Never take each other for granted. We serve a good God. A God who was big enough to make the Heavens and the Earth with his own two hands, and also took the time to create you two for each other.

Love,
Jane, Your Mother-in-Love

What Every Parent Should DEMAND Their Child have at their next doctor's visit

For three years and five days we lived under the illusion that we were raising a completely healthy child. Ignorance is not always bliss, sometimes it can be lethal. The path of not knowing would have cost our son his life if we didn't have a doctor that knew what to look for in every child and screened accordingly. It is my goal that no child will go unscreened and that every parent will know what examinations and tests to ask their child's doctor for.
A year ago I had no idea what a congenital heart defect was.  I had heard of kids that had something wrong with their hearts before. I always thought stuff like this only happened to mom's who were older when they had their babies (I was 25) or had a family history of heart problems, or didn't take their prenatals or something. I took perfect care of myself when I was pregnant. Never missed a prenatal vitamin, walked, ate all the healthy food I could hold down etc.
1 in 100 babies are born with a conegnital heart defect. Pierson's CHD is called Coarctation of the Aorta and it was severe enough to require surgery or he would no longer be with us. If this had been caught at birth he would have been a candidate for surgery within his first few days of life. A 2 inch section of his aorta never developed beyond the size of the tip of a ballpoint pen. On both sides of the coarctation the aorta was extremely underdeveloped, although the right size and was in danger or rupture. If your aorta ruptures you die and there's nothing that can be done to save you. We are fortunate that this was found just in the nick of time to be corrected. Unfortunatly because his heart had been working so hard to push all the oxygenated blood the lower half of his body needed through a teeny tiny hole he was entering heart failure and his heart was hardened and large. It's doing better now but he does have 1 year of occupational therapy to get him back to exactly where he needs to be. He will have to see a cardiolgist for the rest of his life and even though his coarctation is repaired he will always live with congenital heart disease. He was sick his entire life we just didn't know it.
When he was born we were assured that he was healthy with the exception of a birthmark on his head that would need to be removed at some point in his life and his legs being bowed a bit from being breech. Other than that, we were told everything was fine. As it turns out Pierson's CHD could have and should have been caught either in uetero or shortly after birth. The list below is a list of what you should demand your baby have at birth:
1. Pulse Oximetry Screening: You want this performed at least twice. Once when your baby is 24 hours old again immediately before you leave the hospital. Anything below 95 warrants a consult by a cardiologist immediately. Don't let them talk you in to a week later, ask for the first available or not to be discharged from the hospital until the child has been seen by a cardiologist or has had an EKG and echocardiogram
2. Blood Pressure Checks on All 4 Extremities: Pierson's surgeon's nurse practitioner told us that if they did "quad extremity" blood pressure screenings at birth and during every well child check they could catch almost every congenital heart defect. Pierson's CHD was found the first time he ever had his bp taken on his arms. He had 3 other procedures for his ears and the aforementioned birth mark and all 3 of these times he had his blood pressure taken on just his lower extremities because that's what is "convenient" for working with children. The defect on P's aorta made the blood pressure low on his lower extremities because only a small amount of blood made it to his lower extremities through his underdeveloped aorta. BP checks will also catch other major CHDs that could kill a baby at a few days old like hypoplastic left heart syndrome. These BP checks are also very effective at catching ventricle and atrial septal defects (holes in the heart). Theses blood pressure checks should be done at every check-up. Many hospitals or doctor's offices will say "oh, we don't do that, just the arm or just the leg is fine". Well, it's not. DEMAND THIS! No one else will speak up for your baby if you don't.
3. Ask if they hear a murmur. Ask the pediatrician who examines your child after birth at the hospital, ask the nursery nurses, ask your pediatrician at every office visit. The more ears that listen the better. Murmurs be completely harmless or a tell-tale sign of a serious problem. Note: Not all children with CHD's have a murmur (Pierson did not)
4. Ask if your baby has good strong pulses in their feet and groin. They should be throbbing pulses.  If your baby's heart is not pumping correctly they will have decreased or no pulses in their feet or groin. Pierson had a very faint groin pulse and no pulse in his feet.
5. Watch your baby cry for a little bit. I know this sounds mean, but let your baby cry a little bit and take a good look at their lips/mouth and fingers. Are there any tinges of blue? This could be a sign of oxygen levels dipping because of a CHD.
6. Pay close attention to your baby's skin colorCHD. Some CHD babies and kids always have good coloring though.
7. If your baby breathing a good rate? If his or her chest is moving up and down rapidly or the breathing seems labored bring this to your doctor's attention.
8. Shortness of breath or exhaustion during feeding (for the baby, of course) are something that need to be brought to your doctor's attention.
We asked a lot of really silly questions when we first became parents. If only we had known the right questions to ask about our baby's health. We are thankful that our child is still with us, we realize that without a good pediatrician knowing what to look for (because we sure didn't!) we would not have Pierson with us today. Spread the word to your mommy friends. Make sure they are taking their child to every one of their check-ups and well child visits, even the ones where they don't need shots. It could save the child's life.
9. If your baby looks puffy: around the eyes, abdomen looks bigger- not just baby pudge, or in the legs this needs to be addressed.
At your OBGYN Visits:
1. Sonograms: At each sonogram from 20 weeks forward ask about your baby's heart. Are all 4 chambers present and the correct size? Are all 4 chambers and both sides of the heart the same size? Can you see the great arteries? Does it look like it is functioning correctly when it beats?
2. Fluid levels can be a sign of CHDs in some moms. Either too much or too little is something to look in to.
I would say 98% of the heart families we meet did not find out until after their child was born that there was anything wrong w/ their hearts --  some of them that had advanced level sonograms too.
We read all about ways to carry to full term, SIDS (over half of SIDS deaths are estimated to actually be undiagnosed CHDs) yet no one tells you what to look for in your child to see if they might have the most common birth defect in America.
Having a child with CHD is very scary, but there is hope: it just needs to be diagnosed and treated within a timely manner. Texas is horrible about screening for CHDs yet has 4 of the best children's hospitals to treat them. (Texas Children's in Houston, Children's in Dallas, Medical City Children's in Dallas, and Cook Children's in Ft. Worth.)
Be an advocate for your child. We are thankful for a pediatrician who knew what to look for because we didn't know anything about what to look for. Make sure and take you kids to their check-ups and well child checks. They're not just for shots! They can save your child's life. Talk about this with your mommy friends. 1 in 100 is a huge amount of kids. We have to get talking and have to be aware of this. Ignorance is not bliss: it's deadly.

Happy February!

I can't believe it's been since December since I blogged. Shame on me. Can I use the whole Christmas/New Year/ Busy excuse?
I've had a lot of sweet emails and messages lately asking how Pierson has has been doing. The short answer: very well. His occupational therapy is going very well and he is showing so much progress in his fine motor skills, over all strength is building and he is falling a lot less. He's getting stronger every day and he will begin U4 soccer in a few weeks.
We've seen the inside of a lot of doctor's offices lately but none of them have been cardiologists so we're good. Two days after Christmas he was diagnosed with pre-pneumonia. 8 days later he had an ear infection. The next week he fell on the playground and slit the corner of his eye open and we had to make a little ER visit to put the skin around his eye back together - now all he has to show for it is a teeny-tiny quickly fading scar, and now he has a double ear infection. What's funny is a year ago this would have gotten me all in a tizzy and would have been a big deal but now it's small stuff. Really, very, very small. Please understand I am not at all discounting anyone's child feeling under the weather when you read the following statement, I've been there: I hear other parents talking about how their otherwise healthy child has a cold, tummy bug or ear infection and how horribly awful and inconvenient it is and I think to myself, "Count your blessings! If you only knew..."
Back to February. February is a very exciting month for our family. First and foremost, February is Congenital Heart Defect Awareness month. We get to celebrate heart heroes this entire month. There is defiantly emotion tied in to this. To think that last year we didn't even know what a CHD was and now we're celebrating all the "1 in 100" kids out there who valiantly fight - it blows my mind. CHD Awareness week is celebrated February 7-14. Make sure and wear your red! We are looking forward to the CHD Survivor Party at P's hospital that week more than I can tell you. I can't think of a better reason to celebrate than all these warrior kids.
February also holds Pierson starting soccer, my birthday and one of my best childhood friends and her husband coming to spend my birthday weekend with us here in Texas. Woohoo! We should also complete the remodel on our house this month. Hopefully before our company arrives. ;-) We have a lot to be thankful for, a lot to look forward to and a lot to celebrate this month.
Oh! Something else very special! Sigma Alpha, the Christian sorority I am an alumni of at UNT is doing something very special for the next two semesters. They are raising money for Whole Hearts. Whole Hearts is a foundation founded by Sanctus Real lead singer Matt Hammitt and his wife Sarah. Their son, Bowen was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. There's no such thing as a "good" heart defect, but HLHS is especially scary. Matt and Sarah have chosen to honor God and their son by reaching out to other heart families who are hurting and give them support and show the love of Christ in the darkest times by forming Whole Hearts. My sorority sister Cat, who has a son with HRHS and I went and spoke with the active membership of Sigma and these girls have blown me away. They have jumped in with both feet and are approaching this project with passion and vigor. I will keep you updated on them. They are blowing me away and blessing my heart. 1 in 100 children are born with a CHD. Our chapter of Sigma has around 200 alumni and two our our children have CHDs, so that statistic is shockingly true for our sisterhood.
I'm awake early this morning. Whenever I wake up early I like to go steal some sleepytime cuddles with Pierson. As I snuggled up beside him and looked at that precious little sleeping face I just had to praise God. Everyone tells you that being a parent will change your life in indescribable ways but I think that's an understatement. Those precious little soft cheeks. Ugh. I hate that they're thinning out in to little boy cheeks but that just means he's here with us and he's still growing in to a healthy young man. Not a day goes by where I don't think about how lucky we are to still have him. Every time I hear of a kid on the news who drops dead of "an undetected heart defect" I tear up. We came so close to that being our own 3 year old. This week has been a hard one for the congenital heart community. Too many children have died. Never take your children for granted. When they want to play, go play with them. When they ask why, explain to them (even though it may be followed by another "why"). Be a cuddle bandit. You can never tell them you love them enough. God's ears never get tired of hearing you thank Him for your children. Don't be afraid to get messy with them or to do something fun spur of the moment. Make sure they know that God has created them with His own two hands and that He has a special plan and purpose for their lives. They are never too young to hear this. In this month where we celebrate all the CHD warriors, soak in your children and pray for the parents who no longer have their heart heroes here on earth with them.

One of my favorite new pics of P and his best bud Jack