1. Diagnosis.

We went to our 20-week sono excited to see our baby's face, hands and feet. We weren't going to find out the gender at that point so the appointment was kind of like any other. Then the technician took images of Augie's heart. She kept saying, "I can't get a good view, his leg's in the way. You may need to come back next week so I can get all four chambers."

Well, we would soon learn he didn't exactly have a four-chambered heart. My doctor broke the news that there was something severe at hand. But it would take three, three-hour drives to Lubbock to finally get the correct Diagnosis: Complete AV Canal, DORV and TGA. Later we would find out this also included Pulmonary Atresia which meant Augie would need to be born in Houston for immediate intervention. After his birth, scans revealed he also had bilateral SVC's...a big hint that the cause of his complex defects was a rare condition called Heterotaxy. It wouldn't be until he was six months old that we would find out that he had malrotation of the intestines and that his tiny spleen (or lack there of, we still don't know), doesn't function. The spleen plays a vital role in fighting certain kinds of infection.

Whew. I think that's it in a nutshell.

Going in for a uh-hem...barium enema...to confirm his malrotation (June)

2. Surgery/Meds.

I'm going to keep this one short (even though it's the one that I could type the MOST about). Just not today people, not today. He's had three surgeries: a BT shunt at 12 days old. A BT shunt at 13 days old. (Repeat? Yup. See post: "Not his time.") Then he had a Glenn (really GlennS since he has two SVCs) at almost six months. Surgery is difficult to talk about, especially that second, "emergenty" one.

So let's move on to meds. As a heart family we are super blessed in this department. Augie is only on three meds and gets two doses right now. I get that for a "normal" kid that's a lot. But for what our kid's been through, that's amazing. He takes a simple antibiotic due to his lack of spleen function, a blood pressure med and a half a baby aspirin. There have been times (post op) when he's on A LOT more, but we've been lucky in being able to wean him quickly. And yes, I say we. It took many endless hours of rocking and shushing at the hospital 24-7 to get off of some of those pain meds!

Five days worth of meds.

3. Echo/EKG/X-Ray

We've had many of all of these. I can estimate that during my pregnancy alone, they echoed my belly 10-15 times. For those that don't know, it's pretty much a sonogram that takes a closer look at the heart. While hospitalized, Augie had them done every few days. That then dwindled to about once every three weeks until he had his Glenn in June. He had to have several follow-ups and since August, we've been on a once every four months schedule! We pretty much have had an EKG after each Echo. X-Ray's are more common pre and post-op. They do this mainly to check for fluid on/near the heart.

Note: getting your baby to stay still is virtually impossible. We've learned it only gets harder the older he gets. Soooo we've learned scheduling appointments after he's eaten and ready for a nap gives the technician a huge advantage!

Having an echo after his Glenn in June '17.

4. Date of Birth.

12-16-16: The day I laid eyes on the most beautiful person I've ever seen. Despite all the build up and the 20 people in the room to help receive our heart baby, it was a pretty "normal" delivery. We had a couple heart rate scares but it went as smoothly as it could have. I was just so ecstatic to meet the little guy. One cool detail is that I was able to hold him for about five minutes before they whisked him off for testing. I was told this would not happen.

I remember a couple hours later waiting around in my post-partum room for my nurse. She never came (let's just say she was the worst nurse we came across throughout the whole journey. I'm glad she was my nurse and not Augie's). So I called Walter over (he was across the skybridge in the NICU with the baby) and he came over to wheel me back. I recall being in excruciating pain because I hadn't even had so much as an Ibuprofen since the birth. It didn't matter, I was going to see my BEBE!  That was tough. Augie had been intubated since I last saw him due to the meds he was on to keep his heart going.

Light of my life right here.

5. Heart Mom & Heart Dad.

We are a team I tell ya, a team! Walter has been my calm force when I'm...well, not calm. He's been rock. My comforter. The ying to my yang. You get the picture.

The sweetest thing of all is that Augie is his number one fan. It's adorable how he squeals "DADA!" when Walter comes through the door. Am I a little jealous of this adoration? YES. But hey, it also pulls at my heart strings so I allow it.

When Augie was first born we had family to help take shifts in the NICU and such. Don't get me wrong, I was there MOST of the time, but I was also healing from child birth. By the time Augie had his Glenn, it was mostly up to me and Walter to be there for him at all times. We literally took shifts while he was in the CVICU. Since blankets and pillows were only passed out during the night time hours in the "family lounge" a floor below, we took very short sleep shifts. We spent the majority of the time together, right by Augie's side. Me: "You gonna go get us coffee?" W: "Yeah, I'll go again." Haha.

Simply put. Augie and I couldn't ask for a better "dada" to have through all of this. And I like to think I've been a pretty great "mama" too. I am forever changed for the better. I value health and the simple things in life so much more now. I appreciate every day that is given. And I love harder than I ever knew possible.

Breaking Augie free from his fourth hospital stay! (August 2017)

Also, this. Just because. Yeah. #heartmom

6. Doctors & Nurses.

These people are doing things that only God can do through them. They devote their lives to our babies. They don't get much sleep. They never stop learning. They know how to be professional yet compassionate. They are amazing.

Along the way we've met too many doctors, nurses, therapists, technicians and PA's to all recognize by name. For the most part, they were all exceptional health professionals. But what else you expect from the #1 pediatric heart center in the nation!? There was a room full of them the day my son was born, all working together to make sure he took his first breath without incident. And a couple weeks later, they filled another room, working together when we feared he may never take a breath again.

Some of these extraordinary people became our friends. When Augie was doing just fine, they came by "just to chat." His heart surgeon even made it a point to visit not once, but twice, while he was in the hospital for his intestinal surgery, the Ladd's. Nothing to do with his heart, yet he stayed for at least 30 minutes each time. I would guesstimate his average workday is at least 18 hours long...10-12 of which he's standing in a cold OR, operating on hearts the size of a small strawberry.

Augie with his heart surgeon, Dr. Mery.

7. Heart Warrior.

I strayed away from this term at first. Then about this time last year, I crept into accepting the whole hashtag, #heartwarrior. It's not that I didn't find it to be true, I just didn't want it to be my son's only
"thing." I didn't want it to define him. I didn't want people to feel sorry for us. I've blogged about this before...What I found out was this is an incredibly long, hard battle when you're in it alone.

Sharing my son's journey and celebrating his victories helped to gain the support of more distant friends, even the strangers. Then you realize, hey, I'm also informing theses people. Then, a friend of a friend becomes your friend because they have a heart baby too. Then, you're linked up with a pregnant stranger because she's also expecting a heart baby. Then you realize this #1in100 thing is real, you definitely aren't along, and it's absolutely worth discussing with the world!

>>Before this post is over, I need to give a shoutout to all our family members and friends that were there for us during the hardest times. Also all of #Augie'sHeartTribe. You guys are the best support system!<<

My heart warrior is worth being celebrated. His life is nothing short of a miracle. The fact that he walks is a miracle. The fact that he eats Cheerios. He loves to say "daaaag" (dog) and "baaaaath." He absolutely loves to dance and his moves aren't exactly PG rated. LOL. Don't know where he learned to basically twerk. His spirit, his stubbornness, his zest for life got him through all this as much as all the aforementioned things. He is an individual. A part of him, deep down inside, choose to fight for his own life. I truly believe that. He is a warrior and I am so proud to be his mom.

<<I wrote this post in November and for some reason didn't think it was good enough to post. It's now February, I just read it, and I love it. Therefore, here it is :)>>

On my 29th birthday, I squeezed my big belly into a u-shaped booth a Pappa's Steakhouse in Downtown Houston. I was eight months pregnant and momma needed some steak! Walter and I tried our best to enjoy the date, but an underlying sense of anxiety joined us at the table that night. We had only been in town for a couple days, enough time to acquaint ourselves with our new apartment and unpack our suitcases.

The following month would consist of least three doctor's appointments a week to make sure Augie was still doing OK. On top of his heart defects, doctors were concerned about his small size. The sweet nurse that tied the non-stress test monitor around my belly became the person I saw the most other than Walter. We loved her because she giggled non-stop for no apparent reason. I think she new us mommas needed giggles given the circumstances. Once we hit December, I remember saying, "You won't see me next time, this boy will be out." Ha! I would be back to see her at least five more times. Baby boy was cozy!

Other than familiarizing ourselves with the hospital, it seems like all we did was watch TV, take walks, and of course, go out to eat! And for an after dinner bite, I thoroughly enjoyed the truck that served ice cream between two warm cookies. Smoosh Cake. It's in Rice Village. You must try it. My go-to sandwich was chocolate chip cookies with mint chocolate ice cream. Mmmmmmm.

It felt boring then but now I'm grateful for that slow season in my life. Things when from 0 to 100 real quick after Augie was born. We needed that peace. That preparation. That time for thought, prayer, reflection...that time alone with each other.

Photo taken by Shari Hudson, early December 2017.

It's been a whole year since we dropped everything and relocated to Houston. AND Now I just turned THIRTY and have been back home in little Stratford, TX, U.SA. for almost four months! My baby is here too and I rarely get to finish a meal in one sitting. He is the wiggliest, happiest, smartest little boy there ever was! He loves it all. His dog. His mama and dada. His baths.

He loves his life. That one we fought for. That one we paused our lives for. That one we invested everything in, literally and figuratively. That one we would do it all again for. That life he also had to suffer for. The one that he got poked hundreds of times for. The one he got cut open for. The one that will require many more pokes and cuts. He loves it. He absolutely loves it.

Annnnnd...as I'm about to break down and cry writing this...I smell poop. Yup, there he goes, scooting past me. With poop. #momlife #comicrelief

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.

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!

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).

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: