Alex's Time at Children's Healthcare of Atlanta—Egleston

Seven days feels like a lifetime. "We've come so far," is Mark's new favorite thing to say when I even want to broach the subject of our stay at Children's Healthcare of Atlanta—Egleston.

As I've said before, my littlest little love Alex had a congenital intestinal condition called intestinal malrotation. He didn't show symptoms and it was by the grace of God we found out about this life threatening condition the way we did. So in the hours and days following his operation I just kept waiting for the other shoe to drop.

Our experience at CHOA was wonderful. The staff was fantastic, the facility clean. However, and I say this with complete conviction, I never want to go there again, ever.

Squeaks was slated to arrive Friday at 11am for a 12:50pm surgery time. He was not to have anything (no Pedilytle, no water, no nothin') after 9am. By the time we got to Egleston he was not pleased. Then we found out that an emergency had come in and that child needed our doctor and our OR. We had been pushed back an hour and had a new surgeon. Which freaked me out a little, but I was fine to roll with it. A children’s hospital will really put life into perspective for a person.

Alex with Dr. Meisel before he went back to the OR.

Fast forward the longest hour of my life, up to this point at least, to me handing my starving child to a sweet RN with the promise of "see you soon." At ninety minutes the phone rang in the cold, sad, but somehow still cheerful, surgery waiting room for A. Anderson's parents. "Still working," the voice said. I think I spoke but honestly I can't remember.

Dr. Meisel, our new surgeon, had told me between 90 to 140 minutes was how long the surgery should take. When 140 minutes hit I was ready for the phone to ring again. I was ready to hear that my tiniest love was okay. The call didn't come. As my dear friend Anne told me before the surgery started, it's hell in the hallway. I was in hell indeed.

At the three and a half hour mark, I really started to worry. I started to play out the scenarios in my head. I started to cry.

At four hours I somehow found my voice and spoke to Mark, "What if… What will we do?" Mark and I prayed together for our son and Dr. Meisel. We didn't address what if.

At nearly four and a half hours, Dr. Meisel walked into the waiting room. I saw him and my heart fell to my feet. I'd seen only one other doctor come into the waiting room in the six hours or so throughout the day I’d been in there. That doctor didn't bring good news. I was preparing myself for bad news.

Dr. Meisel opened with, "Alex is in recovery and doing well." I think I actually screamed. Just thinking about this makes me want to cry all over again. 

There was more damage than the original scans showed, and it took a lot longer than expected, but Squeaks was going to be okay. He was stable and we could see him shortly.

Of course he was moved from recovery to his room during shift change and we didn't get to see him in that thirty-minute window. I tried not to jump out of my skin. When he was finally wheeled into 4226, he was the most beautiful thing I’d ever seen while simultaneously being the scariest thing I'd ever seen.

With his various machines and tubes, he looked like those kids on Grey's Anatomy—except it wasn't a kid on TV I was looking at. It was my son.

There was a flurry of activity and honestly I don't remember much. Except when Dr. Meisel strolled in the next morning and delivered some good news. Later that afternoon the tube going down his nose to pump bile and stomach acid out of his stomach could possibly be removed and we could, finally, feed him, not long after.

 He was so hungry, I could just tell, he's an Anderson after all. I knew he wanted, needed, food. But I also knew feeding him could be a challenge and I was scared. I was waiting for the other shoe to drop.

The other shoe never really dropped. He had small steps back, but he seemed to hit every milestone. He checked every box with vigor. He wasn't his usual chilled out self, I couldn't even get him to smile while we watched Coach Saban hoist up another SEC Championship trophy for our beloved Crimson Tide, but he was getting better.

When we were discharged, I remember looking at the nurse with tears in my eyes. She simply reminded me he was okay, I was okay and we were all going to be okay. Anne, one of my biggest cheerleaders throughout the entire process, shared similar sentiments. The other shoe wasn't going to drop.

He's got some scars, everyone knows chicks dig scars, but otherwise he's completely unfazed. I am forever changed, but he is completely unfazed.

Dr. Meisel was able to repair his damage laparoscopically, so he only has four small incisions. Instead of one long one.

Since he didn't show symptoms of his condition I never really knew the breadth of how it affected him. Before the surgery he would struggle to eat, taking the full suggested thirty minutes to feed, and made a dirty diaper MAYBE once every two days. Now? He's all about showing off those expensive, brand new intestines, farting and making dirty diapers every two hours or so. He sucks down his formula like a champ.

He's okay. I'm okay. The other shoe didn't drop.

Alex's Diagnosis

I don't know where to start. So I am just going to word vomit and hope somewhere, along the way, I make sense. As a doctor recently told me, when you ask questions, you have to then hear the answers.

Alex has a congenital intestinal condition called intestinal malrotation. I refuse to call it a birth defect because Alex is not defective. This means that his GI tract does not function in the way it should. His intestines do not rotate the way they should and other elements of his GI tract are not placed in the correct spots. Untreated, it can be a life threatening condition.

Malro via

Normal via

For most people, finding out you have "malro" as it's commonly called, is when you are vomiting bile and part of your intestines have already become obstructed and, possibly, died. By the grace of God, this is not how we found out about Alex's condition.

Alex, in the beginning of his little life, just wasn't eating as well as his brother. In fact, he was barely eating at all and not making a dirty diaper. He was fussy at feedings and seemed to always draw up his legs after spitting up. Ever the nervous new mom, I mentioned it to the doctor at a checkup, after he lost over a pound in two weeks.

At his smallest, Alex was just 5 lbs.

Reflux is common in boys and in twins. The doctor thought that could be the issue, but, just to be safe, ordered an upper GI on my sweet eleven day old. When the boys and I strolled into Baptist East hospital that day I never thought my world would change.

Alex took the upper GI like a champ, but it showed malro and would need surgery before things got too far. He is not symptomatic, beyond a few warning signs, so we had some time. Though, every single time he makes a dirty diaper, spits up or vomits, my stomach falls, as each time could be a warning that the malro has cut off the blood flow to his lower gut. Every single time means part of him could be dying.

Thankfully, now he's gaining weight, however, it bothers him to eat, so he's usually a little extra fussy at times.

Alex will undergo surgery at Children's Healthcare of Atlanta tomorrow. Dr. Heiss, our version of a Christmas angel, is going to help heal him. He will be under general anesthesia and the procedure can take a few hours. But, Dr. Heiss is the best of the best, and I feel confidence and peace about it. Everything will be fine.

We are so incredibly lucky to have caught this early, but my tiny little man still has to have the surgery to correct it. And that scares the hell out of me. 

Every malro story is different, and I am very, very lucky that we are not one of the "bad" ones. As a dear family friend, whose little girl was an emergent malro baby, told me a few days ago, "Scary is scary. You have the distinct challenge of anticipating this and worrying ahead of time; we didn’t have to do that."

My prayer tonight and tomorrow and every day is of gratitude. Thankful that I had this little voice I listened to when people told me, "babies spit up; it's normal." wasn't right for my baby. I'm thankful I can talk to Anne, because she's right, there are no pain Olympics, we've still got a mountain to face, even if hers might have been bigger. I'm thankful for modern medicine, Dr. Heiss and Children's Healthcare of Atlanta, because as their tagline says, they are dedicated to "all better."

Thanksgiving 2014

Before I get this started I should say one thing: I absolutely hate Thanksgiving. Between the food, I'm really not a fan of most casseroles or root vegetables, and the general do nothing but eat all day thing, it's never been my holiday.

Since I can let Mark talk me into pretty much anything, this year we celebrated Thanksgiving at our house and then headed to Atlanta to watch the Iron Bowl and visit with family. I might hate the food and the whole idea of Thanksgiving; I loved spending time with my family.

For Thursday night, it was a very Chew dinner. Everything except dessert was one of their recipes. I think the turkey turned out "okay," Mark said the dressing was incredible and the mac and cheese I've made a zillion times and is always a hit. Dessert was pronounced the best thing I've ever made. I am going to call this whole adventure a win. Though apparently it is damn near impossible to get a good picture of my children together.

Friday was low key with the drive and spending time with my Momma and Papa. Momma and I scooted out and, of course, did a little shopping while all the boys bonded.

Saturday was the big game and well, we all know how it ended. Watching the Iron Bowl with the biggest Alabama fan I know, my Daddy, is one of my favorite traditions of the Fall. I couldn't picture a more perfect day with all the people I love. Having all the cousins together for the first time was really fun!

I can't wait until F&A are a little older and they can all say "ROLL TIDE!"

Apparently Johnson kids never wear shoes! Melt my heart all these babies together.

Friday Favorites

When I was home I spent a lot of time watching television, staring blankly at books and falling asleep with my eyes open. Now that I've been back at work for about five whole minutes, I mean days, I find myself trolling the internet and laughing at stupid things people put on Facebook, like the video of Kevin Hart telling Jameis Winston to "stop doing dumb shit." Also known as procrastinating.

Here's what I've been favoriting this week:

ONE— The Cinderella trailer is out and it is everything.

TWO—Wednesday I got a peek at F&A's newborn photo shoot. Holy shit, I made some really adorable people. 

THREE— Everything about this article on Scary Mommy: 12 Things I Thought About Babies...Before I Had One but especially, "Maternity Leave will be a nice break from work." I remember thinking about all the things I was going to do on maternity leave and how much I was going to love getting things done. HA!  It was a miracle to get dinner made most days. And then there was that one time I had to remind myself to go outside because I hadn't gone outside in four days. 

FOUR— Baskin Robbins, like many places, celebrated Veteran's Day with a special nod to the military. ...it was odd but also didn't stop me from devouring the ice cream. Food coloring comes in brown?

FIVE— I mean, really. 

via

Boys, don't hate me.

Today I went back to work. I left you. But don't worry, I'll be back!

Spending six weeks at home with you guys was something I will never forget. Not just because of the sheer boredom I sometimes felt, or the bone deep exhaustion, or the time that Fitz got poop on my sweater, the wall and his own feet, no not because of that. Well, maybe because of that. 

But now I'm back to work and you're hanging with Miss Fannie. And being your momma is just one of my many titles, not my only title. I have thought about this day for many months and surprisingly it wasn't the hot ass mess I thought it would be. I was only marginally late for work. Fifteen minutes is total progress! I didn't cry when I closed the door, or when I was in the car. In fact, I felt oddly at peace—like this was how it was supposed to be. Which, honestly, I haven't felt in, uhhhh, seven months or so?

You're going to grow and change so much under Fannie's watchful eye and I am going to miss it. I'm sure I will miss some small milestones, big ones too. I know I will have plenty of "Momma Guilt" when those things happen. But I also know that when I come home at night I am going to be so much more present with you than I was these last few weeks. I will no longer take feeding time, when you stare up at me with those big brown eyes, for granted. I'll even be more present for your diaper changes. Okay, that one's a lie, I’m still pawning off the green shit on your father as often as possible. 

There are so many adventures we've yet to go on, so don't worry, every morning when I shut the door, I will be back.

One Month

A little late, but what matters is that it's here!

On November 7^th, Fitz and Alex turned one month! It's incredibly hard to believe it's been over thirty days since y'all came into the world. It feels so natural to have y'all in the house. It seems like you've been around forever. I can barely remember what life was like before. I mean I can, but I feel like it was a different kind of fun.

In your first month you've celebrated Halloween and by default, learned how embarrassing your Momma truly is.

You also began the complex relationship of boys and their dogs.

Fitz, you constantly are warbling away at your brother in the crib and I'm convinced you're already starting to tell secrets. You, my future little H-back, are weighing in at a solid seven pounds, seven ounces, which is one pound and two ounces more than your birth-weight. You're a tall little dude at 21 inches. Because of your constant noise, I've started calling you Fuss Budget, or simply Budget. Sorry 'bout that one kid.

Alex, you're my little fighter. You've had some tummy troubles which resulted in you dropping some weight and the nickname “Shrimpy” by some. Though you've found your groove and now tip the scales at six pounds five ounces, a pound and an ounce more than your birth-weight. Almost as tall as your brother, you're 20 and a half inches long. You're built like me and I have a feeling you'll be a long, lean one. I call you Squeaks, as you are constantly squeaking when you're upset. Squeaks is better than Shrimpy, right?

I can't wait to see what the next month holds. Hopefully we will all three get better at taking photos.

 

Hopefully.

A New Normal

October was a pretty big month for me. I had some babies.

Homeward bound!

That's so weird to actually say. On one hand, it feels like it was just the middle of the summer and I was a hot pregnant girl dreaming of October. Now it's November: Fitz and Alex are nearly a month old! WOAH. I also lost nearly 60 pounds in eight days. WOAH.

I won't go into too many gruesome birth details, because who really wants to know that the first words out of my mouth after seeing Fitzy was “What the F are we going to do with a baby?”, but I will say I'm really glad I'm not going through that ordeal again anytime soon! If ever.

Though, I would think that losing three liters of blood, and subsequent blood transfusion, would turn ANYONE off of an activity...

The hospital was a blur after their birth but look at how awesomely cute they were.

Oh look my husband is super cute too!

They've already changed so much. They've already grown so much. They are just so awesome. 

I'm not going to even pretend like I remotely know what the hell I'm doing. But I do feel pretty lucky to be their Momma. Though maybe not at the 3am feeding time. 

It's almost time for me to go back to work, five weeks sure did fly by, and while I'm excited to get some adult interaction again, I am going to miss mid-morning snuggles and long afternoon walks to the park.

Finding a “new normal” has never intimidated me, and over the next few weeks hopefully we will quickly fall into our new normal. If not, well, there's always gin. 

That's not even half the bottles we go through in a day...