What is life?!? It's a silly question understood by myself, an older-end Millennial and my students, true Gen-Zer's. Many differences set the two age groups apart, but one draws a clear line: My generation created and adapted to using social media, Gen-Z knows nothing else.

Freshman on Halloween. (I love teaching Freshman so much)

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. 

This post is wayyyyy dated. It was originally written in the weeks leading up to January 17th, the day we got discharged from the hospital. I'm not sure why I couldn't publish. I think I needed to keep it for myself a little longer. I tend to only share the positive...avoiding the stomach churning photos of my son post-op...twice over. He had lines coming out of every extremity, drainage tubes in his abdomen, a huge raw wound on his chest, breathing and feeding tubes in his nose, etc. I still want to protect him from the vulnerability of it all. Yet I fear I'm not giving him the credit he deserves for his fight when all people see is him happy and healthy. So I will attempt to respectfully tell his story while protecting the photos and thoughts I consider most sensitive. And I'll keep sharing all of the pretty ones! :) 

Photo by Lentille Photography

On December 29th, we almost lost our little William Agustin. He was less than two weeks old. This story is only a fraction of our overall experience in Houston...but it's the one that has left the biggest mark on our family.

1.5.17
I'm rolling out of bed at 4 a.m. for a date with my breast pump. I'm hoping to make it quick so I can sneak in a couple more hours of sleep before rushing back to Texas Children's Hospital to see my three-week-old son. Sleeping at the hospital again wasn't an option. There's no way anyone can properly recover from childbirth in the small upright chairs they allow at the bedside. No such thing as privacy and sofa beds in the Cardiovascular-ICU. The five minute drive makes gives me so much anxiety I want to pull my hair out.

My husband reacts to my breaking the silence with a "shh shh shhhhhh" in his sleep. Adorable yet sad. That's because we've spent the last few days endlessly "sushing" our baby while he screams his way through sedation withdrawals. They don't tell you that part. They don't explain how plain pissed off and miserable your child will be after he starts to open his eyes and move around. Meanwhile, the doctors try their best to figure out the perfect balance of medications to comfort him, yet not over do it. Maybe today will be a better day. It will certainly will never be as bad as last Thursday, undeniably the worst day of my entire life.

Augie showing off his muscles, photo by Lentille Photography

12.29.16
It had been less than 10 hours since Augie's first heart surgery. They placed what's called a BT shunt to allow for proper pulmonary blood flow. In essence installing a tube the width of angel hair pasta to temporarily stop him from going blue. It doesn't even begin to correct his anatomy...but it buys time.

After a nail biting day of updates every hour-and-a-half for a seven hour period, all had gone according to plan. He had survived his first night post-op but was still pretty sedated. I listened to the TV and pumped at his bedside (story of my life). Meanwhile, Walter was just getting back from a quick trip to the hospital's Starbucks. In all, a pretty uneventful day up to that point.

Then, as the hospital staff would describe it, our son went down fast. The nurse brought in the respiratory therapist and the attending doctor. After a few minutes of pumping him with air, the doctor urged, --"push the code button...NOW." Walter and I were pushed into a tiny corner of the room while the rest of the floor staff ran in. All I could see was the attending's profile as she demanded, --"more epinephrine, prep an OR!!!"

The surgeon was rushed in, having just finished another operation down the hall. One of his assistants shakily passed Walter the surgery release contract we had signed a day earlier in a calmer conference room setting. Then the attending brought me in closer before they wheeled our baby away. --"Talk to him, mom. Tell him to hang in there." At that point I had been sobbing so hard, I'm not sure my words were intelligible much less inspirational. But I tried my best to tell him to hold on and keep fighting. Walter and I were left clenching each other, crying, and eventually looking around Augie's empty hospital room that now resembled a war zone. Syringes, gloves, vials thrown all over the floor. The whole event lasted less than 30 minutes before he was taken back for a repeat of the surgery he had had the day prior.

We could never admit it to each other, but we were both thinking it. Our son almost died in front of our eyes. A few days later, the attending confirmed those thoughts by casually saying, --"Hey, at least we didn't have complete cardiac arrest." She could get away with it...she did save his life. They couldn't tell us why his shunt failed. Either it clotted or kinked off...all they know is it stopped working.

I know God was in the room that day. I remember trying to block every fear I had with silent prayer. Thank goodness for the nurses, the attending doctor, the surgeon, and all others involved. Though we would've preferred to avoid the event all together, we're glad it happened at the moment it did. Our son lived. To spare myself anymore post traumatic stress on the topic...I'll stop there.

Photo by Lentille Photography

1.15.17
Fast forward. Augie's little shunted heart has been supplying blood to his lungs and pumping enough oxygenated blood to his body for more than two weeks now. Praise the Lord. He's been doing so well, in fact, we got moved down to a "step down" unit almost a week ago. He's been eating like a champ and sleeping very peacefully with mom and dad at his bedside 24/7. It looks like we will even get released to our local apartment soon!

Now before anyone gets too excited...this doesn't mean we are going home to the Panhandle just yet. We've accepted the reality that our journey isn't over. We know and understand that the operation(s) he's had so far are only palliative or "bridges" to allow him to gain some weight for the next. He's currently surviving on oxygen saturations in the 80's. Those of us with normal hearts are at 95 to 100 percent saturation. That's why we must stay close to his cardiologists and heart surgeon for the time being.

Photo by Lentille Photography

2.24.17
While a part of me longs for our little man's heart to just be fixed already...that's simply not the way it works. I have to be grateful for his existence and this process. Years ago he wouldn't have made it this far. So we will take it step by step. Next up? Another surgery. But to ensure a more successful outcome, he must gain weight! And that is no easy task considering the many factors that prevented him from putting on any weight at the hospital. Soooo here are our requests...pray Walter and I will continue to be graced with patience. We are working so hard at this weight gain stuff. And, of course, pray Augie continues to do his part. As always...thank you and God bless!

A millennial living in the Instagram world, each milestone in my adult life has been documented with an artsy filter and catchy caption. I had the dream wedding, went on perfect vacations, caught the most magnificent sunsets. The expected lifestyle of a married, educated, 20-something person living in America captured in perfect little squares for all her friends to heart. It's the same perfection I envisioned in sharing the arrival of my first-born child with the world. I still love Instagram, but man...have I been humbled.

A perfectly imperfect moment captured by m.roberts photography

Walter ice skating at the Galleria 😀

Still, our situation is less than ideal. What I would give some nights to be back in my actual bed. My eyes water and my heart throbs every time we get sent a picture of our dog back home, staying with relatives (whom we can never repay). The letters we receive on a daily basis have the same effect. I've never known what it really means to feel homesick until now. I can recall awkwardly trying to comfort a friend at cheer camp or freshman year at college. Those few individuals who physically hurt because of it. I now understand that feeling. I know how bad it hurts to yearn for the comforts of home. To miss my dog, my bed, my students and co-workers, my friends and family.

39-weeks pregnant

At Centennial Gardens

The past few months have felt like a marathon. Now I'm on the last leg of this busy, at times stressful, beautiful journey. I've bounced back from finding out terrible news and feeling more optimistic than ever. Currently, I'm soaking in this sight...my first baby, Django, smothering my sofa in fur, having sweet puppy dreams on my throw pillows. My husband, meanwhile, mouthing every word of Forest Gump. This is our last night at home for quite some time. Bittersweet for sure. We're one step closer to meeting our baby and giving him the best medical care in the world. Yet we leave behind our dog, our comfy house, our patio with the best sunset views, our bed, our adorable baby room, our jobs, our families, our awesome friends, our world. And to add to the rollercoaster of emotions I'm feeling, I just got an email with most precious photos of my little family at our beloved little home.

m.roberts photography

I can't wait to get back here. This morning I pulled out from our caliche drive extra slow so I could take a mental picture. While I'm going to miss this cozy space of ours, nothing can take my sights off of Houston. We're finally going to be there tomorrow and we're not leaving till we've got a healthy baby boy on our hands! To be honest, it's been nerve wrecking waiting till the 36 week mark to relocate. But every week I've checked off another ultrasound and another non-stress test. I've checked off another week of teaching, grades and a pep-rally. I've checked off another trip to Lubbock and Texas Tech football game. I've taken it day by day. Step by step (mostly waddle by waddle). It's safe to say I had some great distractions to keep my mind off of worrying.

m.roberts photography

Besides all of the usual shenanigans that go on at school, my work family has really gone out of its way to spoil me lately. I've been showered with everything from a travel crib, to baby books, toys, clothes and even little surprises for me. They've fed me, loved on me, helped me pack. They've made me laugh and offered endless words of advice and encouragement. My fellow teachers, along with our principal, the school staff, and students have been my most loyal supporters.

Some of my work family making a surprise appearance at my baby shower in Stratford, TX

Now speaking of being showered...boy has our little W.A.S. been spoiled! We were thrown a beautiful baby shower in the home of my friend, Tracy. He received more supplies than I know what to do with! Our guy is set. On top of it all, I had several family members and friends surprise me and travel from long distances to be there for the special occasion. Guests took the time to write us special notes of encouragement and prayer. I'm so thankful for this day and the community that we live in.

Tracy and me at my shower

One week later, our dear friends in Lubbock threw us a party leading up to the Texas Tech vs. UT football game. Walter and I got to enjoy a night of catching up with some of our favorite couples and friends in the world. Naturally, our baby boy was spoiled with even more beautiful gifts. The best part of it all was just getting to visit though. Many of our friends have started families of their own. We're all so busy and seldom find the time to travel and see each other. We had time to sit back, visit, laugh, eat, and appreciate the moment. It was a much needed reunion!

Personalized treats at our shower in Lubbock, TX

It's been one heck of a run but the race isn't over yet. Now I plan on pacing myself and hopefully cruising past the finish line with as little stress as possible in a few weeks. Our plans in Houston include settling into our apartment, hitting up the zoo and a couple museums, going to the doctor several times a week, and hopefully making just as many visits to Target and the Galleria. I won't mind sleeping in a little bit and camping out on the couch either! I should also mention that the fun isn't over for our closest loved ones. They'll be visiting through the holidays to keep us entertained and help out when baby comes. We can't thank them enough!

William Agustin's Nursery

m.roberts photography

This time of year also means added patience and sacrifice for our household. I'm starting to think about all that I need to do as we prepare to relocate to Houston for a baby's arrival. Meanwhile, Walter is working day and night to harvest our livelihood. For those not in the "ag-loop" (ahh, I remember those days), farmers like my husband spend weeks, sometimes months, harvesting their year's work. The window for planting crops, caring for them as they grow, and then getting them out of the ground is extremely narrow. That's what makes this time of year so crucial. Nearly every meal he eats comes in hand-held form. It's scarfed down while he rides down a bumpy corn field. He gets home dirty and exhausted. We see each other for only minutes each day. It isn't an ideal situation for any wife at 32 weeks pregnant. Yet it's a worthwhile trade-off. This life offers breaks at other important times of the year and centers around the fading small town lifestyle, we feel, is ideal for raising a family.

The farm should slow down by the time our little guy is set to arrive. But leaving work behind is going to be extremely difficult for the both of us. I've been thinking about my students more lately, the impact they've made on my life. I've started to realize how much of my ability to cope has come from them. My son's heart defect was diagnosed a week before school started. I wondered how I would make it through each day. I feared bursting into tears as I attempted to teach my classes. It seemed like terrible timing. Then school started and things were fine! Who would've thought? The remedy to heart-breaking news...teenagers! They keep me on my toes. They make me laugh. My energies shift to them, their needs, their lives. And they're not just teenagers. They're sympathetic, kind human beings when they want to be. They even put together this beautiful prayer jar full of sincere wishes for our little family...


I'm truly going to miss my students during my time off this school year. It's all going to be a very big change living in Houston. How long? We still don't know, and we will not know. Not even the best surgeons in the world can predict the outcomes of heart surgery on a newborn baby. Just as we have been, we need to take things day by day.

A lot of you have been wanting to know more information or what exactly is wrong with our little guy's heart. The reason I've been holding back is because technical, scary terms don't really matter. They only matter to the medical team that will be treating his defects. Yes, defects. There are multiple problems with his heart. This is usually the case when it comes to serious heart malformation. When one thing goes wrong...other things can follow suit. Plus, it's worth mentioning that we've had many different diagnosis over the past few months. What we do know 100 percent is that our child's heart will not function properly when he's born. Surgery is a matter of life or death for our baby. Less important details can be discussed later.

This journey has started to make me think about my old job. A former health reporter, I knew a little bit about heart defects from stories I'd done. And despite my experiences, I'm embarrassed to say, I was still fairly clueless. I thought...you know...that something weird must've caused them. Oh, the mother must've been on some kind of medication. Oh, it must run in the family. Etc. These things do happen but are usually not the case. I haven't had as much as a baby Tylenol for the past 7 months! And Walter and I have no close family members with known heart defects! This is what makes this situation ultra sobering. We are merely a statistic. We've listened to five different doctors and a genetic counselor tell us, "this is just a random event." It's an explanation that's been given to countless other families before us. We won a really messed up version of the lottery. And though cases as severe as our son's are extremely rare, heart defects in general really aren't. They happen to 1 in 100 babies! Knowing this stat wouldn't have changed anything, but it could've helped us to more quickly accept that we aren't freaks. We didn't do anything wrong and there's no sense in continuing to question our circumstance. It's just something that happens.

Sooooo before I sign off, I gotta get to the good stuff...we've FINALLY chosen a name for our little heart warrior. Drum roll, pleaseeee!


So there you have it, a solid update! As always, pray for us and our little "Augie." Can we make that work? Pray for our transition as we prepare to relocate to Houston in November. Pray for his birth and that it pose limited complications. Pray for his medical team and the surgeons who will be mending his sweet little heart. Pray for his parents, that we continue to be strong and hopeful every step of the way! Thanks for reading as always. -Nicole

It was all so surreal. Walter and I gazed out the window of a 20th floor conference room awaiting one of the surgeons who could potentially be operating on our brand new baby in a few months. I thought to myself--What on earth are we doing here? We weren't supposed to be waiting for our third appointment that day...watching a massive crane make add-ons to an already gigantic hospital in Houston. We weren't supposed to be planning on spending an unusually large amount of time at said gigantic hospital. We weren't supposed to having a child that will likely require multiple heart surgeries to live, yet there we were.