Top of my mind, bottom of my list...that's writing lately. Fortunately, putting it off for so long has resulted in a much better post (I hope). A few weeks ago I really wanted to vent about how hard life was. How miserable it is trying to get Augie to gain weight. I wrote about five paragraphs about how torturous it is to get a baby with a heart condition to eat. Then one day I highlighted the entire entry and hit delete. The post wouldn't helped anybody and it wouldn't have changed our circumstances.

It's true, Augie has a long road ahead. But, he IS doing great right now. He's the happiest little man I know! He may not be gaining as fast as we like, but he is gaining. Life is good. God is good. So here are some of my sincerest thoughts, reflections and prayers. Here are three reminders that have turned my life from crapped-on to consecrated.

Augie mesmerized by his "glowy toy"

1. My kid is a real badass.

Up to this point, I've been apprehensive about sharing specific details on his diagnosis and for good reason. Things change. Doctors discover new things. Our new thing (diagnosed after birth) is a little known condition called Heterotaxy Syndrome. This extremely rare anomaly is the whole reason Augie's heart is so messed up. There are varying degrees and it can wreck havoc on the body during its formation in hundreds of different ways. To quote some online advocates--Heterotaxy isn't a Congenital Heart Defect...but it almost always causes them. 

In Augie's case it caused a large hole where the chambers of his heart should be separated. It caused his heart's aorta to be malposed. It formed his heart with two SVC's, the major vein returning deoxygenated blood to the heart. And the reason he had to have surgery shortly after birth, it caused a narrowing of his pulmonary artery, restricting blood flow from the heart to the lungs.

Believe it or not, none of these defects have actually been "fixed." Instead, doctors will most likely continue to address these complexities through stages of palliative surgery. However, we are still holding out hope for what's called a bi-ventricular repair, in which his heart function could possibly be made "normal." More on that, and the other possible issues related to his condition later.

Time to address the big BUT in all of this. It's what I mentioned at the start. He is a badass (no I can't think of a better word). No one can change my son's chemical makeup, his personality, his drive. Knowing him now, I would choose him 100 times over another child with a healthy heart. He simply amazes us every day. He repeats sounds, he kicks and touches his toes. He smiles and laughs constantly. He listens when we speak or read to him. He lets us know he loves us. And in turn we love him so much it hurts. He is feisty and strong-willed. He is so good natured. You can see it in his eyes. He is going to touch lives. I guess he already has.

Posing for his 3 month photo

2. Someone else is always going through something worse.

I can't tell you how many other parents I've secretly envied. It sounds demented...but I know other moms in my position have felt the same way. If only it was a VSD or even just TGA. If only Augie had a smaller list of problems. Why can't it be a simple fix? If only he was a premie...or sick with a treatable infection. Why can't he have everyday baby problems?

DISCLAIMER: I am in no way dismissing any sickness in babies and children. They are all serious. They are all tough. They are all unfair and terrifying. So the point I'm trying to make: It's all relative.

There are parents in that hospital down the street watching their children fight for their lives at this very moment. There are moms who have gone weeks without holding their babies. They've spent months at a time listening to the dreadful beeps. Experiencing the infamous "roller coaster" that is ICU life. They would do anything to be in my position. To be able to bring their baby to a temporary home and live a semi-normal life. We have freedom. We have real family time. We get to hold and love on our baby without IV's, arterial lines, SPO2 monitors (this we still do have at night), leads, nears, tubes, etc. We really are blessed and grateful. It can be so much worse. We pray for our fellow heart friends at TCH every day.

Family outing to the Houston Shell Open to celebrate our 2nd wedding anniversary

3. This is life. Right now. Not tomorrow. Not five years from now.

I can't obsess over the future when we're past all this. We may never get past it. But right now, right this second, my baby is sucking on his fingers and grinning at me. He's vying for my attention. So I'll take my 2nd, my 5th, my 20th break from compiling this post to talk to him. I'll tell him I'm proud of him and that he looks like his dad. I'll make him giggle when I stick out my tongue.

I'm not saying I won't plan, pray and hope tenaciously for his future. But I won't let my desires overcome these precious moments. I will never get them back. This is life. Right now. He's out of the hospital. He's acting like a normal baby, despite his underlying medical issues and what's to come.

That's why we've tried to make the best of things while in Houston and outpatient. We go out and get fresh air at least once a day. We enjoy walking trails and take Augie out to places we feel pose little threat to his health. We time our adventures carefully so that can he eat at home every three hours, even if that means coming and going several times in a day. We've made some lasting memories that will shed a different light on this journey than I had originally predicted.

Accidental trip to watch the Rice Owls play baseball

As always...I have too many things to talk about. I'm also starting to feel a call to help others in our situation. They say goals are just dreams until they're written down:

1. To help raise money for congenital heart disease research and Texas Children's Hospital. 
2. To bring more awareness to Heterotaxy Syndrome. It's so rare...it's apparently not worth researching or funding. According to the NIH, It affects only 1 in 10,000 people worldwide. However, this number is likely low due to underreporting and/or misdiagnosis. What's more, doctors have no idea what causes it and have identified little genetic implications. 
3. To bring comfort to fellow heart moms trying to recover from child birth in the worst possible place...an ICU. There are so many little things that could help with healing, coping and overall happiness during what's likely the scariest time in that woman's life.