Stark awareness for CHD Awareness Week

In the United States, two times as many children die from congenital heart defects annually than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD research.

Continue reading at your own risk. This is very lengthy. If you're a parent, I recommend having tissues nearby. This was originally posted in 2011 as a Facebook Note to promote CHD Awareness Week. As February 14th, the last day of CHD Awareness Week each year draws near, I thought it fitting to share as I've made a few Facebook friends since 2011.

I'm certainly not taking anything away from pediatric cancer research or its importance. In fact, my husband, the father of a "heart baby" is one of the biggest supporters of St. Jude I've ever met--and yet therein lies the problem. Just the words "pediatric cancer" immediately bring to mind images of children that are bald at the wrong stage of life, typically a little thin, maybe a little sallow, almost always trying to muster a smile. Sometimes you might think of machines and IV lines and wonder about all the things these kids are going through. What images do the words "congenital heart defect" bring to mind? Probably nothing before now. Maybe you have heard of someone who has a heart murmur or remember the kid that could never participate in gym class or sports but didn't look like they had anything wrong with them. Maybe you've seen the scar on an adult's chest after they've had open heart surgery. Well, here are a few of the things the words "Congenital Heart Defect" bring to mind for me:

I remember getting the call from my OB/GYN saying that they were referring me to a perinatologist because one of my blood tests came back "off" and they wanted my baby to have a more thorough ultrasound screening to rule out any problems. I was petrified. I was also in-between dog training appointments.

I remember the look on the sonographer's face at the perinatologist's office and I remember her saying "Everything is checking out, but I don't like what I'm seeing with his heart." I remember just an hour later talking with the perinatologist and his recommendation that we have an amniocentesis done so we would know whether or not Parker had any chromosomal abnormalities. He gave us a referral to a pediatric cardiologist where we would be going for confirmation of the diagnosis. I remember being mortified when he also gave us the option to terminate the pregnancy.

I remember going to CHOA-Egleston to meet with the pediatric cardiologist. He confirmed the diagnosis of Tetralogy of Fallot and went about describing the four different defects that make up this particular CHD. I remember him telling me how successful the surgeries to repair the defects are, how the entire process would unfold, and how he would basically live a normal life outside of his hospital stays. But the two things I remember the most about that day were being told that my child would probably never play competitive sports with the exception of maybe golf, and the real kicker--"You just can't let him cry." Those words, said in that matter-of-fact tone, will never be forgotten. Allowing my son to cry before his defect was repaired could have ultimately sent him into cardiac arrest.

I remember enduring the amniocentesis and trying so hard not to cry. I think my husband probably remembers the grip I had on his hand. That was a big needle, and it was painful, but I think it hurt even worse because I was an emotional wreck. I remember getting a call (I was in-between dog training appointments again) a few days before Thanksgiving saying that the results from the amnio were good. I remember the relief I felt knowing that there was a lot that could be done to fix his heart, but they couldn't fix chromosomes. I also remember thinking that I could totally deal with one problem or the other, but how hard it would be to deal with a heart problem *and* a chromosomal abnormality. I remember the wave of despair that came over me a few minutes later when the doctor's office called me back to say that they were sorry, but only one of the test results had come back and that we would have to wait until the next week to learn the results of the other test. I remember calling my friend Lauren and bawling like a baby. Thankfully the news after Thanksgiving was good.

I'm going to skip ahead nearly a year now, with the only bridge to fill the time gap being that Parker handled his arrival with grace and aside from my getting very little sleep for five months to keep him from crying, and a lot of various doctor appointments, his first five months were happy times. The time for the surgery was drawing near, and wouldn't you know it, life throws us a curve ball. Charles was about to be changing jobs, and therefore insurance. Rather than fight the pre-existing condition possibility, was there any way we could have the surgery sooner versus later? Our angels came through for us.

I remember family visiting Parker and us before the surgery. Those few days were odd. Would it be the last time they would see him? Bittersweet is not a poignant enough term. The possibility did exist that we were sending our five month old baby into an operating room to die.  

I remember holding Parker with Charles in a tiny room at the hospital right before they came in to take him back for surgery. They sedated him there so that he was able to fall asleep in my arms before going back. I remember thinking "Is this what he'll look like if he dies?" I remember hating myself for even allowing the thought to cross my mind. I remember doing a lot of praying. For the first time in a long time I felt like I was having a real conversation with God. I remember feeling like there was a comforting hand on my shoulder and a whisper of "All is well." in my ear as I was handing my baby over to strangers so they could cut him open and cut his heart. Change it. Fix it? Was it not sweet and pure and right and good?

I remember sitting in a waiting room at the hospital with numerous other families. There was a phone in that room that would ring every time there was an update on one of the children in surgery. Parents were taking turns answering the phone and we would call out the last name that was requested by the OR on the other end of the line. Most of the time the news was good...

I remember the surgeon coming to find us when Parker was out. They couldn't save Parker's pulmonary valve, so he has a definite murmur that remains. He'll have to have at least one more surgery, hopefully when he's 18-20 years old, to replace that valve and resect the tissue along the ventricular wall for a second and (please, oh, please) final time . I remember not caring about that so much because I was so grateful that he was alive. I remember wanting to hug the surgeon, but I wasn't sure what etiquette surrounded the situation. Looking back, etiquette probably isn't at the forefront of anyone's mind on that floor at Egleston.

The Cardiac Intensive Care Unit (CICU) is like an alternate universe. For anyone that has seen The Matrix, I remember recalling the scene where Neo "wakes up" connected to all the wires and everything around him is unlike anything he's known before. Babies go into CICU in a medically induced coma; trust me it's for the best. There are wires and tubes and blipping machines and nurses staring quietly at monitors everywhere. And it's dark. Even in the middle of the afternoon it's much darker in there than the outside world. Buried under wires and tubes and tape and blankets and guardrails are the most fragile looking creations you've ever seen--so still and quiet--with any sounds they might be making masked by breathing machines and IV alarms and blood pressure alarms. Many of the babies in CICU are only a day or a few days old. Some, like Parker, only a few months. I remember seeing Parker there for the first time. I didn't cry; not then anyway. I remember that as much as it hurt me to not scoop him up and hug him and hold him close, I didn't do it because I didn't want to hurt him.

In CICU, there is one nurse assigned to one baby at a time. I didn't like our first daytime nurse in CICU. She just rubbed me the wrong way. Looking back, (my National K-9 comrades are the only ones who are going to understand this) she was my glove. I projected all my fear and frustration and anger and every other negative emotion onto this poor woman. Parker's night nurse in CICU was my stick, I liked her a lot more.

I remember lots of awful things about our time in CICU. I remember all the parents being kicked out on numerous occasions because babies were crashing, babies were being put on ECMO (if you don't know what that is, Google it), and also because doctors, surgeons, and students were making their rounds and you can't be privy to another patient's information--even though you already know full well why they're there. I remember being tired but not wanting to go home. I remember sleeping on cots in a little room on the opposite end of the hospital because we didn't want to go home (you can't sleep in CICU). I remember communing with other parents in the parent lounge just down the hall. I remember a few of our friends stopping by to see us and feeling bad (why?) that Parker wasn't able to interact with them and Charles and I weren't very entertaining either. I remember a young father walking in, looking bewildered, and finding his brand-new baby girl hooked up to all sorts of stuff. He had driven over from Alabama to be with his newborn without his wife. She had to stay behind because she had delivered their baby via c-section. They were unaware that their baby girl was going to come into this world with only half a heart. I remember seeing his wife being brought to the floor in a wheelchair and knowing immediately who she was. I remember crying inside for the parents that had to leave their babies to go to work and being thankful that I didn't have to--even though, as the nurse told us, we had the most expensive and well-qualified babysitters on the planet. I remember different babies suffering different and various complications.

I remember being told about Parker's complication. Chylothorax. Basically his lymphatic system was injured during the surgery and was leaking into his chest cavity. It happens after about 30% of open heart surgeries and it happens in children and adults alike. Certainly not the worst complication imaginable, and not the worst we saw, but in one fell swoop I could no longer do for my son the main thing I had done to keep him alive (and keep him from crying) for his entire life to this point. I could no longer feed my baby. He had to be put on a special fat-free formula for six weeks to allow the lymphatic system time to heal. I've since learned that it is now possible to keep a baby with Chylothorax on breast milk after it has been skimmed, thanks in part to my family and our willingness to participate in the very beginnings of some clinical research. It's amazing how quickly things progress.

I remember moving to the "Cardiac Step-Down" unit and what a celebration it was. Parker had a private room with a cot for Charles and me to sleep on (well, poor Charles was on a pad on the floor), and there was even a bathroom with a shower and a TV. I remember being so sad when a family that had been moved to step-down was sent back to CICU. I remember praying that didn't happen to us.

Now Parker was aware, but he was not entirely alert. He was certainly not himself and still on pain medication and he still had a chest tube in. He would have to go in a little red wagon (complete with oxygen tank and external pace maker) every morning with Charles and a nurse to get a chest x-ray to check on the Chylothorax. I went once. I remember the x-ray technician commending me on a job well done, holding him in the proper position for the x-ray. I remember thinking that I was merely defaulting to my vet tech experience, because if I had thought of how much pain that was probably causing him I wouldn't have been able to do it.

I remember a lot of vomiting. Parker wasn't dealing well with the formula (neither was I, for that matter) and was vomiting with nearly every feeding. We were lucky enough that at five months the doctors decided it would be okay to introduce some fat-free baby food to him so he was getting some form of nutrition. Gerber Stage 1 peas in cardiac step-down was Parker's first taste of solid food. He ate it voraciously. He contracted horrible, painful diaper rash from the formula and veggie introduction all at once. He still vomited the formula, but he would keep veggies down. ARRRRGGGGGHHHHH! He also did a lot of vomiting when they took him off morphine and put him on Tylenol with codeine. Now we know he has a codeine sensitivity.

I remember my favorite nurse from step-down, Dani. God Bless that woman. She always smiled, even when she was helping me change sheets and clean up vomit and weigh diapers. She made me feel better when she realized how nervous I was about them taking Parker's lead lines (external pacemaker) out. She was happy for us when Parker's chest tube came out; not as happy as we were, but she was happy for Parker because that meant he was going home soon!

I remember visiting another heart mom on the floor whose son (also Parker, same age, same CHD) was having a very difficult time coming off the pain medication. He was moaning and crying and was just so pitiful. She was very frustrated because her insurance wouldn't cover any more days in the hospital and the kids had to be off pain medication (with the exception of OTC Motrin/Tylenol) to leave. Her heart was breaking and mine was breaking for her and for her son. I remember the social workers coming to visit her and coming to visit us to let us know what options we had to pay for all of this stuff. We didn't qualify for most of the programs, but I remember thinking, "That's what insurance is for, right?"

I remember having to take classes before we could leave the hospital. We had to take classes on infant CPR and emergency first aid. We had to be *taught* how to pick up, hold, and bathe our babies. We had to be taught how to administer blood pressure medication, pain medication, Lasix, and in some cases (like ours) formulas and food. I remember, although I wouldn't have admitted it before now, being petrified to take him home. I remember how happy I was to go home with him, and how happy I was to see my dogs. Those ten days felt like a lifetime.

The next six weeks at home were all about medication, sleep, vomit clean-up, feeding, caring for the rash that resulted from the introduction of solid foods and a nasty formula all at the same time, follow-up doctor visits, and a general sense of relief. The following year was all about dancing around bankruptcy trying to pay for all the bills. Yes, we had good insurance!  Thankfully we had *a lot* of help from family, but I know a lot of heart families who aren't so lucky.

Here we are. Parker will be three next month and for now you would never know what he has been through unless you saw his scar or heard his story. We have recovered financially and writing this has proven to be a great part of my emotional healing; pretty cathartic, actually. I can't speak for Charles, we honestly don't talk too much about it all, but I love him so much more than words can say, and we agree that we have the best kid in the world. He's smart, he's active, and in my opinion quite handsome. He is very wary--nearly terrified, of anyone wearing a lab coat or scrubs, but otherwise he is currently no worse for wear.

The saddest part of this whole story is not anything we went through, or anything we will go through in the future, but that in the grand scheme of CHDs, our family is one of the lucky ones. Our son is alive. He is probably only facing one more surgery. Charles and I have a strong marriage, and we have outside support. There are so many families affected by CHDs that can't say all that.

If you have taken the time to read this in its entirety, I thank you. You now know why CHD Awareness Week is important to me. Feel free to share as you see fit, and please remember, as I do, that the biggest scars are the ones you can't see. Support CHD research as you are able.

The Culture of the Folding Chair

I have big plans for the coming year. I plan on working really hard at creating a new culture concept for my family and those we interact with routinely. The big picture is that I want to reign in the pervasive need to be a consumer and shift toward needing to create. The small picture that I am going to use to fuel the movement in my mind is a simple one: a folding chair.

A dear friend told me once about a mission trip she took to Nicaragua. She said that one of the things that struck her the most was the way the people treated visitors to their homes. The areas of the country they were visiting were exceptionally poor, with residents living in basic dirt-floor shacks and spending the majority of their days trying to survive and feed their families. Regardless of how little they had or how little they had eaten, when a visitor came by their home they stopped what they were doing and brought out the folding plastic lawn chairs. They all sat together in the meager accommodations and talked. When the visitor left, the folding chairs were put away and the struggle to survive resumed. Instead of focusing on what they did or didn't have to offer from a material perspective, these people focused on their visitors and freely offered something far more precious: their time and attention.

My friend may not realize this, but she lives this way herself. She may have a home with carpet and tile and wood flooring and she may have creature comforts that the people of Nicaragua can't possibly imagine, but she will drop whatever she's doing and invest time and attention (that she doesn't have to spare according to the standards of most Americans) in anyone that genuinely asks it of her. And you know what she creates when she does this? She creates relationships that have meaning to both people. She creates a feeling of self-worth in her friends. People that interact with her for any amount of time feel valued and loved. She teaches me daily by example that people are worth creating meaningful relationships with.

There is another image that comes to mind when I think of a folding chair. This image is of my husband, who owns a CrossFit gym. I have many memories of him bringing a folding fabric chair into the middle of the gym floor to either sit and watch (read: coach) others working on their weightlifting or sit to rest between his own weightlifting sets. My husband has always been kinda competitive by nature and until recently wasn't known as being particularly patient either. I have watched him over the last few years create his own coaching style and help athletes create the best version of themselves possible. He teaches me daily by example that while it isn't always easy, and you aren't ever finished, working to create the best version of yourself possible is a worthwhile investment.

Interestingly enough, my husband (from this point forward referred to as "Punk") lost his jobby-job in July. He was a District Manager for a large big-box sporting goods chain. He was great at his job. His job provided us with enough money that we were at a stage of life in which we didn't lack anything we needed or really wanted. The one thing Punk's job didn't provide for our family was a lot of time to be together. We started to use "stuff" as a way to fill the void. Supporting the idea of consumerism that supported us, I suppose. Thankfully, some of the void-filling stuff came in the form of a CrossFit gym and all the equipment in it.

Punk didn't have much time to invest in the company he created prior to July. He was so busy being consumed on all sides by consumerism. When that fateful day came at the beginning of summer, he suddenly had a lot more time on his hands. He spent the first two months or so sending out resumes and looking for the next best thing that wouldn't require uprooting our family from North Carolina to California or Mississippi or Texas or some other might-as-well-be-a-foreign-country place. While they aren't plastic or fabric or folding, we pulled out our dining table chairs almost nightly and had the most meaningful conversations we'd had in quite some time. I'm not sure exactly when it happened, but it happened that the resumes were no longer being sent. Phone calls from recruiters were no longer being entertained. Somewhere along the line Punk decided that he would be happier running the business he created and signing both sides of his check than going back to the hyper corporate world of retail consumerism. I would like to think that our dining table conversations played a part in that decision somewhere along the way. I am thrilled that THIS is now our plan A with no fallback plan in sight. I am excited to see where this journey takes us next and grateful for all the people the gym has brought into our lives. Punk is teaching me daily by example that something worth creating is something worth fighting for and deserves to be nurtured.

My last mental image of a folding chair is the most recent. I tend to enjoy right-brain activities. I KNOW, right? Who knew? My problem is finishing them. I have exactly nine blog drafts at the moment, an unfinished painting on my easel, the perfect puppy-to-be in mind, and notecards on my computer that I've been needing to finalize and send to the printer for...I dunno...a couple of years? I have had multitudinous diversions keep me from my artistic pursuits over the years. Some of them have been important and others admittedly not so much. I recently surmised that I might be inclined to sit at my easel for longer periods of time if I had something more comfortable to sit on than the hard wooden swivel stool I had been using. Turns out I was right. Wanna know what fit the bill? A folding pack chair! Much more comfortable. And portable. This year I want to focus on allowing my desire to create override my fear of no one appreciating my creations. I want to teach myself daily, by example, that creativity is not bound by proximity and that if the creation satisfies the creator--that is enough.

If, in my process this year, one person is positively impacted by a concept, relationship, feeling, art piece, or any other creation of mine then that will be far more valuable than any cost of any good required to create any of it. So now I challenge you: where can you fit a folding chair into your plan this year? What will you use it to create?