Why me, God?

Monday, July 31, 2017

Last year's "Stratford Days" was really, really rough on me. We had just announced our pregnancy a couple weeks prior. It was Walter's ten-year reunion and everybody and their mother was coming up to congratulate us. Little did they know we had just found out our son would be born with serious heart problems.

Two days before the celebration, July 28th, we drove back from my 20-week ultrasound appointment in Amarillo. I sobbed, ugly cried as they say, the entire ride home. My OB told us he wasn't sure exactly what was wrong with our son's heart, but he knew it was bad. So bad, he said he was referring us to a maternal-fetal specialist in Lubbock and that we would have to prepare to deliver our baby in a much bigger city where they knew how to handle this sort of thing.

I asked, why me, God? Why me?

Flash forward, people. We just got done with Stratford Days yet again. And this time, we celebrated as a family of THREE. I watched proudly as my son sat in his "big boy" stroller seat for the first time. He was mesmerized by the cars, fire trucks and horses in the parade. The kid loved it! I thought, wow, he we are. We made it. 
Watching the parade with one of his favorite Stratford friends
Crazy to think just a few weeks ago I was in Houston having very mixed emotions about finally coming home. I realized, oh hey, it's been almost a year since diagnosis, AKA, D-Day. I figured I'd wake up sentimental and make a post about how I couldn't believe it had been a whole year. Instead, I had another incredibly busy day entertaining Augie. I didn't realize I had missed the date until standing there smiling at the parade. Doing such normal things...truly a blessing!

Everything has come full circle. After anticipating his birth for a full month and then living in Houston for the seven that followed, we got to come home. Everyone and their mother came up to congratulate us again. I fought back tears again. But this time of joy, not of pain, or anger, or fear.

Enjoying some pool time and a cracker after the parade
Our journey with Heterotaxy will never be over. Augie's heart has only been repiped, not fixed for good. And in recent months, we've been able to confirm that his intestines are malrotated. We will be traveling to Houston for another procedure. I'll post again soon for that. Good news is, this trip should be much quicker than the last!

For now it's just so good to be home! I no longer ask God, why me? I think, thank God it was me. Together with my hubby, I've been able to tackle this major obstacle in our son's life. We're not perfect, but we are equipped emotionally, physically, financially, spiritually, etc. If it could happen to someone, thank goodness it happened to us. Thank you, God.
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Tick-Tock

Monday, July 10, 2017

Having the idea for this post, I googled, tic toc or tick tock? Turns out, it can be tic toc, tictoc, tick tock or tick-tock. I'm going to go with the latter because the AP-stylist in me likes hyphens. The spelling became less important when I read the definition anyway. 

tick-tock
noun 
A clock; also, by extension, the human heart: wind the tick-tock/ tick-tock is going strong at 70 
The Dictionary of American Slang, Fourth Edition by Barbara Ann Kipfer, PhD. and Robert L. Chapman, Ph.D.
Copyright (C) 2007 by HarperCollins Publishers.

Wow. My reference, you see, was to describe the sound of a clock: tick-tock, tick-tock. But maybe it is, in fact, the sound of the human heart that's inspired this post. Yes, I think so. Tick-tock, tick-tock. The sound of my son's beating heart. 

Tick-tock. It's mid April and I'm lying awake in bed again. I'm facing Augie's travel crib, staring hopefully at his pulse oximeter machine, watching the waves and numbers fluctuate. 76, 75, 73, 72. . .back up to 75. C'mon, go to high 70's, I think to myself. 75. . .76! OK, now I'll close my eyes and try not to worry. After all, the thing alarms if he goes below 70. 

I spent many nights gambling with the pulse oximeter, watching his oxygen saturations creep lower and lower over time. We knew this would happen yet it's frightening, especially after seeing the story of a fellow CHD mom posing with her baby in the mirror. From what I remember, she was taking a selfie with her baby at the three-month milestone. But then at four months, she posed alone, sobbing, holding her baby's onesie and four-month sticker. This mom was in a similar situation. At home with her baby, awaiting another stage of surgery. I feared, my gosh, Augie is about to be four-months-old. Could this be me? 

Tick-tock. It's June 7th and I wait and wait...and wait. My baby was taken back for surgery at 7:30 a.m. and I get my first update at 9:00. It goes something like this, "Augie is sedated, and all lines needed for the surgery are in place. He's comfortable and all is going well. They should be starting to work through the skin and then enter the breast-bone. This will be the longest portion of the surgery. The surgeon will be extra careful due to the scar tissue from his previous surgeries." 

An hour and-a-half later, I get another update. Still working on the incision. The day goes on, update after update. Until finally, the surgeon himself delivers the last update and I can breathe a sign of relief. My son has survived his third open-chest surgery. For the third time, his teenie body was opened up. His heart was connected to a bypass machine. He received donor blood. His vessels were severed and reconstructed to give his abnormal arrangement a more efficient function. He was taken off the bypass machine and his heart worked on its own once again. He was sewn shut. Drains let out residual blood and fluid. A ventilator kept him breathing until he came to. 


It's all so intense. Yet this last time, it felt so normal. It's a part of Augie's life in order for him to have a life. Our thoughts are, wow, at least they didn't have to 'turn him cold' to perform the surgery like last time. 
Finally getting to snuggle a just-extubated Augie two days after his Glenn surgery
Tick-tock. It's July 9th and I wait and wait...and wait. Wednesday can't come quick enough. On Wednesday, we plan to pack up our SUV with a little U-Haul attached and finally see Houston in our rearview mirror. Guys. It's been almost eight months since I've left the Houston metro. Eight...that includes Thanksgiving, Christmas, New Years, Valentine's, Easter, Mother's & Father's Day AND the 4th of July! And I can count the times I've gone outside of Loop 610 on one hand. To be clear, this is more of an expression of disbelief than a complaint. I will stay in Houston as long as I need to to ensure my baby is healthy enough to go. But now, apparently it's time. Augie's cardiologist even looked at me and said, you need to go home now. 


It's time to show our son where he really comes from. It's time to let his daddy finally get back to work in person! It's time for him to see God's country made up of endless miles of fields and the most beautiful sunsets in the world. It's time for him to meet his dog! Getting home won't happen overnight. We must make pitstops in Dallas and Lubbock for a wedding and a doctor's appointment. But if there's one thing I've learned in all of this, it's patience! Of course, we are nowhere done with Houston. We'll be back for check-ups and consults. And yes, more surgery down the road. 

Choosing not to live life in a complete bubble at the Astros vs. Yankees!
So now is the time I ask you for help. Please pray for our safety and Augie's wellbeing during our trek across Texas!  Also - if any of you feel inclined to do something in his honor, donating blood is a great gesture! If you are a donor already, we thank you too! 

Tick-tock, tick-tock. The sweet sound I hear when I put my ear to Augie's warrior scar. It makes these months spent watching the clock so worth the while! Thank the Lord and thank you everyone for your prayer and support! 

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You find out who your friends are

Sunday, June 4, 2017

True adversity can expose a lot about relationships. Some people just don't know what to say or how to show their support. But that's not where I'm going with this. Because for every negative in this journey, there is something twice as positive. I've reconnected with old friends. I've developed stronger bonds with certain family members. My marriage is solid as a rock. But there's one relationship I've been wanting to single out; it's a friendship Walter and I never knew we couldn't live without.

Dinner with the Pollards this past week
The Pollards were friends of a friend of a friend. Casey and I were connected via Facebook after I broke the news about Augie's CHD in this very way. I wish I had better words to describe this period in my life. Avoiding Thesaurus.com, I'll go with: confusing, devastating. Needless to say, I wasn't too enthused about making connections with other "heart moms." I was still ping-ponging between denial and depression, nowhere close to acceptance.

Yet there was something about Casey that led me to take a chance. We exchanged messages and before I knew it, I had signed myself and Walter up for a double-date when we relocated to Houston. She let me know they were from the area and had gone through the experience of having a baby needing heart surgery at our same hospital about a year prior.

The Pollards showing support and dropping off dinner during Augie's latest hospitalization.
The night we met I was eight months round, anxious and excited. We sat out on the patio of the restaurant, taking advantage of weather only Houston could offer in November. We must've talked for 3-4 hours that night. It honestly could've been longer had it not been for the waitstaff cleaning around us and Casey and Justin needing to get home to their two little boys.

Then Augie was born. My heart could've exploded with all the love I never knew I had to feel. It was the holidays and my baby needed heart surgery. Casey's support was relentless. She checked on me periodically and even sent cookies to the NICU (a treat we all really appreciated being away from home on Christmas). She became someone I could vent to and a source for questions of advice.

Casey meeting Augie for the first time!
Since Augie was discharged, we've had many hangouts. We've even been able to meet their boys now that flu season is over. Our visits are short given Augie's strict feeding schedule and the boys have to be careful to look, not touch. But even so, spending time with this family has brought the normalcy we feared we'd have to live without while in Houston. The simple pleasure of being around another young, like-minded family. It's something we may have taken for granted in our life back home the way it was supposed to be.

The Pollards rescuing me and Augie while Walter was away!
Cinco de Mayo...my first time over at a friends house in months!
I could go on for days about how well we get along with this precious couple. We couldn't ask for a better family to be our go-to guide to hospital life and parenthood. They've fed us in and out of the hospital. They've rescued me when I was lonely during one of Walter's trips home. Justin and Walter have enjoyed golf, softball, and a few beers along the way. And Casey has been my go-to for girl's nights and endless paragraphs of venting in the form of text.

Our one outing with no baby...the rodeo!
Justin and Walter at softball
We are grateful for having connected with this precious little family. It's just one more of the many blessings that have blossomed our of the biggest challenge of our lives. Sometimes finding out who your friends are means forming new friendships altogether. Here's to many more memories between the Spurlocks and the Pollards!



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When reality becomes real

Thursday, May 25, 2017

It's so easy to get caught in the la-la-land that is denial. And sometimes it's not all that bad. It's keeps us going when life gets real tough. Despite moving across the state for now half-a-year, going to the cardiologist once-a-week, and seeing our son's oxygen sats in the 70's every night when we "plug him in"...we still get caught up in his giggles, his peek-a-boo's, his ability to be so normal. We take him out and get compliments from strangers just like the families I looked at longingly before.
Augie refusing his hospital crib after his heart cath procedure.
Then we get those REAL reality checks. We certainly got one last week when Augie's sats dipped after his heart cath. Spending just one night and two days in the hospital brought back a lot of stress and worry. His condition is a reality to us every day; the severity of it is what's easy to forget while he looks and acts so O-K.

We got another reality check this morning when we found out of the passing of Walter's Uncle Fred. He was Walter's only true living uncle. This is a complete and devastating blow to our family. We are heartbroken and in shock. It wasn't but two months ago that Fred drove Walter's Nana to Houston from San Antonio just to see Augie for two hours before heading back to their home in the Panhandle. He took good care of his mother. He was charismatic, generous and true to his character. Fred unapologetically sported his cowboy hat and loud accent everywhere he went. And we absolutely loved him for it. To say he will be missed is an understatement.
Augie getting to meet his precious Nana and Uncle Fred.
The news came at a hard time. Yesterday while we were having a normal day at the aquarium, the surgeons office called to confirm Augie's next surgery. Wednesday, June 7th. Two weeks. I've been saying that we're looking forward to it for months. Now that it's really here, I am absolutely dreading it. I wish we could just run away from all this and it would somehow become untrue. I want to protect his bounciness, his smiles, his laugh (the most precious sound I have ever heard).

Last week in the hospital, I remembered how sick he has to get before he can get better. I remembered the day after his first surgery; how he began to go into cardiac arrest out of nowhere. How doctors had to pump him with air and then pure adrenaline to keep his heart going. How he had to be rushed back for a second surgery. How they had to completely stop his heart and cool him down to buy more time for the extensive operation.
Father-son moment at the aquarium. 
I pray this next stay if far less dramatic, but there are no such promises in life. I've learned the hard way not to bargain with God. The reality is CHD has robbed families we've developed connections with of their precious babies...while miracles have happened to others. What I will do is pray for strength for myself and Walter as we face our next big hurdle. I will continue to be thankful for every precious moment we've gotten as a family. I'll remember to be grateful for Augie's resilience and spirit. This kid is amazing.

Reality. It really bites sometimes, but there's no avoiding it. Tonight as our day winds down, I will find peace in knowing Augie has one more precious angel watching over him in Uncle Fred. And he's not the only one. Our family and community have lost several other special people this year. It's been a tough one but we won't crumble. We'll live, we'll hope, we'll love. Life is simply too short not to make it count. Thank you all for reading and for your constant love and support.
One of the funnest nights of my life thanks to Fred (Vegas, 2010).




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The glass case of emotions that is the NICU

Sunday, May 14, 2017

We interrupt your scheduled programming with a special treat. In honor of Mother's Day, I wrote a sonnet. LOL. I tend to be more productive if there's a deadline or challenge at hand. I challenged myself to complete this one in 24 hours. I'm no Shakespeare, and I'm sure it breaks some rules. But it's interesting to reflect on how much can be said in 14 simple lines. I hope you enjoy it!

 You made me a mommy, by Nicole G. Spurlock

Your creation brought the uttermost glee,
And the tummy flutters made it to be true.
Becoming a mother was everything to me.
Would we buy pink or would we buy blue?
But the questions became more complex than that.
Our baby's little heart was not quite right,
And I was left to research every term, outcome and stat.
They said you would face one heck of a fight.
But now you are here;
You have fire in your eyes.
And though certain warnings caused fear;
Thoughts of imperfection turned out to be lies!
You are immaculate in every single way.
And I'm grateful to be your mommy every single day!

Photo by Lentille Photography
Now on to our scheduled programming...

I've been wanting to talk about this since our son was born almost five months ago. He was quickly transferred via sky bridge to the Level IV NICU at Texas Children's West Tower. This isn't your average NICU. Offering the highest care level possible, it's home to more than 2,500 newborns each year. Augie stayed in the NICU's special "heart pod" before he was taken up to the CVICU on Christmas Day. Those nine days taught me a lot and ultimately primed me to be the heart warrior advocate I am today. Here are the lessons I learned:

1. The NICU turns you into a crazy, protective, savage b@!%$.

I'm serious. Those first few days I felt like a lioness willing to devour the head of anyone who dared not to sanitize well enough around my cub. Or a snake willing to strike at those who dared to stand too close. Whatever the most protective mother is in the primitive world, that was me. At times, I acted irrational and unreasonable, even snapping at my own loved ones.

I've simmered down since then but still show moments of ferociousness. And the truth is...I do it unapologetically. Yes, I did probably overreact at times. However, I will never regret acting protective over my baby, especially when he was at his most vulnerable. Anyone offended along the way will understand (if they're anyone who matters).

2. No human woman can fully recover from childbirth in an "open pod" NICU.

It's ridiculous. We are brand new mothers. NO...we aren't going to go "rest at home." It doesn't work like that. We are going to want to spend every waking moment possible at our babies' side. For me that meant sometimes acquiring a chair that reclined 3/4 of the way....but was barely long enough to support my head while in the "reclined" position. Hmmmm.

Because I couldn't nurse my intubated baby, I requested a pump to be brought to his bedside and religiously pumped every three hours. When it was available, Walter's parents would graciously pull around a divider to shield me. Otherwise, I pulled on my cover and went for it. I then slowly shuffled my way over the the milk bank, holding my uterus as it contracted, to turn in my fresh milk. It's unpleasant. But it's reality. I won't even go into bathroom breaks. Those were just torture...especially when the one bathroom in the actual unit was occupied.

I was convinced to go home and "rest" for a few hours most nights. Those hours included a short sitz bath, a heating pad while I pumped, and a couple hours of sleep. Then back to "work" at the hospital. Stand, sit, awkwardly recline, pump, shuffle to milk bank, shuffle to bathroom, shuffle to cafeteria, repeat. Thank goodness for my night owl of a father-in-law who often took the 3 a.m. shift!

3. Despite the impossible recovery, you feel like SUPERWOMAN at times. 

I didn't fully realize how much I hadn't recovered till Augie was released when he was a month old. I think it was day three of him in the NICU that I felt like I could run a marathon...OK...maybe walk a half-a-mile. Still. I felt great! I guess it was adrenaline. He just gave me such a drive to keep going every day. I wanted to put a little makeup on. I wanted to at least put my hair in a cute bun. I wanted my baby to see me smiling and looking pretty. Despite everything, I wanted to be my "put together" self. Then I'd look in the mirror during one of my bathroom breaks and realize my shirt was inside-out. Hey, I tried!

4. You will get a crash course in nursing and med school!

As dumb as you get when you're pregnant (it's not nice but it's true), you will make up for it ten-fold when you have a sick kid. Let's start with the acronyms. Even this State of Texas certified teacher couldn't believe alllll the acronyms. I'm all FOFA now (full of freaking acronyms).

In order to keep up with the genius doctors during their rounds, you begin having desperate flash backs of that one time you took "HOSA" classes in high school. You only thought you wanted to go into the med field. Oh riiiight. I should've paid more attention the week we learned the cardiovascular system instead of obsessing over my nail polish and whether I should cut bangs.

On top of that, you develop many new talents such as: taking blood pressures, counting BPM's, reading and adjusting settings on monitors, administering medications, perfectly placing the band-aid for the pulse oximeter, putting on leads, putting on nears, reading and knowing the order in which the technician performs the echocardiograms, using props to cushion and comfort your newborn when he can't be cuddled, etc. You also begin to learn enough to keep up with the doctors during their rounds. It feels pretty amazing when they look up from their computer screens and say, "wow, that's a great question!"

5. You realize that the actual nurses are straight up saints.

I don't know how they deal. Adorable, tiny, sick babies day in, day out. They walk in, all smiles, and work a 12-hour shift in a place that offers not a speck of natural light whatsoever. They're careful, diligent, observant and oh so caring. They love on your baby when you can't. They find special ways to make him (and you) comfortable.

We spent Christmas Eve in the NICU and got transferred up to the CVICU for Christmas and New Years. It sucked. But I wasn't alone. I had my baby, husband and in-laws. What about our nurses? They only had us. They were hugging us. They were eating Christmas treats with us. They were making baby-foot-adorned Christmas ornaments for us. They were toasting us with sparkling cider at the stroke of midnight.

Don't even get me started on the beeps! I would hear those monitors after leaving the hospital. I still hear them in my dreams. How these amazing individuals deal, I do not know! I would say the tragedy they face at times would be unbearable...but I'd like to think they see twice as many miracles. And they have a part in that. God bless our amazing nurses!

Made all comfy by one of his fab nurses! 
6. You will test your marriage.

My husband has surprised me in ways I could've never imagined in all of this. He came up with his own amazing questions for the doctors. He monitored vitals and took down information on his phone. He has always been the one to "groom" Augie. To this day, I haven't attempted to use the baby nail clippers. I also watched him change his first diaper everrrrr in the NICU, and yes, it was a good number two! :)

In our case, our son's condition has brought us closer than ever, but it wasn't always all roses. We learned we had to work harder than ever to communicate with each other. We have to try our best to not speak out of turn when the doctors are in the room. We have to discuss every plan and every decision carefully with each other. We have to be a team. I'm so proud of how well we've been able to do that so far.

7. Lastly, you will feel a love like you've never felt before.

My heart hurt thinking about Augie's little broken heart. It still does. I can physically feel how much I love him. It's nearly indescribable. The elation you feel seeing your newborn for the first time is simply out of this world. He is the greatest gift I have ever received. I've said it before and I'll say it again...I would never trade any of this for a "perfectly healthy baby." He is perfect in every way to me...even if he comes with a little extra maintenance. He made me a mommy and it's the most beautiful feeling!

Thanks for keeping up with my blog! Right now we are awaiting Augie's cardiac cath procedure on Wednesday. Surgery will hopefully be scheduled in the coming weeks as well! We appreciate all the kind wishes and prayers! xoxoxo -Nicole 




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What is life?

Sunday, April 23, 2017

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)
Our commonalities allow us to bond while I attempt to set a good example to my impressionable pupils. Yet me falling into the older of the tech generations is also why I have such a love-hate relationship with sharing feelings online. In the case of exposing my son Augie's heart story, I do feel that cautiously sharing has done more good than harm. In fact, the times I chosen not to share, have seemed to lead to a lot of misconception and confusion. 

But that's not entirely what this is about. This post is about figuring out, "What is life?" --So what is it? It's doing the best you can. It's telling the truth. It's fighting for those you love the most. I love my students (and co-workers) more than they know. (The nights I sleep for three hours in a row), I have dreams about my classroom, planning the prom, coaching golf. I miss their skepticism, their innocence, their humor. They truly helped me get through my pregnancy. At the time, it was the hardest thing I'd ever gone through.

Charlie "feeling my pain"
Start of my third trimester in my classroom
Pregnant me as illustrated by my student, Daisy R.
 I wish I could be two places at once. --A phrase I've used in the past...but I've never meant it as much as I do now. Battling Augie's heart condition has turned out to be more positive than I imagined. However, the experience of coming to Houston and awaiting surgery is taking a lot longer than I anticipated. We've been here for more than five months...almost half a year. It's not what I hoped for, but I still have a son. I have a son that is four months old! That wasn't promised when my husband and I set out on this life-saving adventure. We are forever thankful. Yet I am missing huge milestones; games, tournaments, the prom...and soon...graduation. 

So, back to my question: What is life? For me right now, it's doing what I've been tirelessly doing for the past four months. I need to devote my every waking hour to my precious blessing, Augie. That's why I can't go back to teaching next school year. No one can take better care of my son than I can. In some ways it's a dream come true to be able to stay at home with him yet my eyes are filled with tears. I guess I (and probably everyone) knew it was inevitable. It's not a shocker. Sunray High School needs me, but I'm realizing that the reason this is so hard is because of how much I need it. 

Augie rocking his awesome laugh and awesome scar! 
Warning: this paragraph is a little preachy but targeted at younger people that may be reading. Here's one last lesson from Mrs. Spurlock (a Spanish teacher that tends to get off topic). Choosing to have a child comes with huge (and sometimes unknown) responsibilities. My husband and I could've never fully prepared for a baby with CHD, but I'm glad we were equipped to handle it. We were as ready as we could've been. Young people need to consider all possibilities when they make serious choices in their relationships. So while I have professional responsibilities and goals, I now have to accept that my number one priority is and always will be my son.

 So when I consider lessons learned from my students...What is life? 

Laughing as often as possible. Never taking any moment too seriously. Appreciating the present but having faith in what the future will bring.  

Accomplishing a life's goal of taking students, fellow teachers and parents to Spain! 
Thank you for reading. Please continue to pray for our family. Specifically, Augie as he faces another standard echocardiogram and weigh-in at his appointment this week. We pray the findings show his heart function is still stable and that he is still steadily gaining weight. We also pray that his upcoming heart cath study will go smoothly and that he will ultimately receive the operation he needs to be cleared to leave Houston! Our family truly misses and needs the comforts of home! 



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Turning crapped-on into consecrated

Monday, April 3, 2017

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. 
There, I said it. Now I have no choice but to turn adversity into action. As always, thank you for reading and for your continued prayers and support! <3 Nicole 






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