It's Not Easy: Mothering, Malro and Me

From the moment I found out I was pregnant with the twins I went through a few really difficult times. When you live in the Bible belt and don’t do things in the conventional way, people talk. And people judge. And people suck.

In fact, as clear as a bell I can think of one girl who was so jealous that I got pregnant, she was, and continues to be, mean to me. It took me a long time to realize her jealousy was why she was so wretched to me, and while it makes me sad, it also makes me angry. Angry because mothering is freaking hard and I got enough of my own guilt about working and being a good mom and a good wife and making it to Church on time that I don't need a bitchy acquaintance.

But mainly it makes me angry because of December 5, 2014: The day I handed my newborn son to a stranger with the very real feeling I might not see him again. How dare she take out her jealousy on me that I got pregnant "easily with twins" and everything fell right into place.

For the entire time the twins were in-utero I was in incredible amounts of pain in my hips, back, fingers and belly. I was unable to eat for days at a time. I struggled to walk. I didn't talk about it because it wasn't anyone's business and it was just part of an extremely high-rick pregnancy.

Yes, I delivered them full term, vaginally. I also lost so much blood I had to receive a blood transfusion and came very close to receiving it through a PICC line. There’s always more to the snippets of things you hear…

Then there was December 5, 2014. Yea, it was so easy to hand a two-month-old over for surgery and not know what was going to happen. To be in actual hell for four hours while a nice man you met four hours prior was moving your newborn’s intestines around to save his life. Yea, that was real easy.

 

I don't want this reflection to come from a place of anger—I am so incredibly thankful for CHOA-Egleston, Dr. Meisel and God for watching out for Alex; for making Alex "all better." We were so incredibly blessed throughout Alex's entire malrotation surgery and recovery; I have a lot of guilt when I think about it. He hit the milestones he was supposed to right on track.

But what I didn't think about would be the after. The indelible mark I would be left with. In the immediate days after we left the hospital I did nothing but cry and worry and feel sick to my stomach. I watched Squeaks like a hawk.

Overtime my fear abated, but never left. Every single time he eats, I feel nervous. When he goes a few days without regular loose bowel movements I wake up in cold sweats, go into his room and make sure he's still breathing and not covered in green vomit.

I hear myself constantly say, "You have to be careful with Alex," which is nearly always countered with, "Stop being overprotective."

The worry faded, but it never went away because for those three weeks we waited for surgery and the week we were in the cocoon of CHOA-Egleston 4226, everything went smoothly. So, obviously the other shoe is going to drop and rock my world.


Except it hasn't really. A few days ago, after a few weeks of Fitzgerald struggling to make dirty diapers of any kind, Mark asked me, "Do you think we should have him tested?"

There it was, the other shoe. I survived one malro baby; I could do it again. But Fitz isn't showing any malro signs. He eats like a horse. In fact, he eats too much bread, which is why he's always constipated. I frequently catch him snatching crackers off Alex's plate. That's why he's clogged and he enjoys daily doses of milk of magnesia.

Intestinal malrotation affects one in 500 live American births. It is a congenital condition that happens during the first trimester of pregnancy and can show signs immediately after birth or never at all or sometime in between. It's a scary thing to deal with. Once you've survived a malro baby, it never ever leaves you.

Yea, it might be easy to have sex and get pregnant, but mothering? The day in and day out? It might seem easy on instagram but it actually is really, really hard.

Tomorrow marks one year. I don't know how I will feel as the day progresses. I am so glad I listened to my little voice, that I fought for my son, that Dr. Meisel saved his life and gave me a ferocious toddler who loves Peeps and ice water just like his momma. But damn, it hasn't been easy.

There is one element of tomorrow that will be extremely easy. As a family of four we will all watch the SEC Championship game together, no machines, no cords, no nothing. Just us and our beloved Tide. I'm so grateful for that! Roll tide, beat the gators!!

 

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."