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