My Inside-Out Baby

January 25, 2018

They were dark, dark days, and it wasn’t just the Boston winter gloom. I would walk to the breast pump room at Children’s Hospital six times a day, lock the door, set up my equipment, settle in the chair, turn on the pumping machine, sigh, and then sob. Uncontrollable sobs. Cries so deep they were silent, with occasional audible wails as I caught my breath. After 15 minutes, I would wipe my tears, label my milk bottles, leave them at the nurses’ station, and march back down the hospital corridor to my baby’s room with a fake smile plastered on my face.

 

 

In March 2009, I gave birth to a baby boy with gastroschisis, which is a birth defect where there is an opening in the abdominal wall so the intestines develop outside the body. Doctors discovered his condition during my 18-week ultrasound, when my husband and I thought we were just going to discover our baby’s gender. I had scheduled this scan for my husband’s 31st birthday because I couldn’t think of a better present than finding out whether he was going to have a son or daughter. We had a text pre-populated and ready to send to friends and family who were anxiously awaiting the news of our little baby’s gender. They never got their promised text.

 

Instead, we were thrown into a three-day whirlwind of meetings with specialists at two hospitals, internet research, and zombie-like walks around the city as we contemplated the news that our baby, our first little baby who was growing inside of me, might not make it or might have a horrible quality of life. Doctors brought up the word "termination" multiple times, and we tried to stay away from the internet, but we couldn’t help but find story after story of stillbirths, or babies who spend 8 months in the hospital, only to go home still being fed through an IV for the rest of their lives.

 

My husband and I met when I was on the dance team the Boston Celtics basketball team. I was in London on a promotional tour for the NBA, and on our last night there, I met a dashing Englishman – a London investment banker who didn’t think he would end up marrying the flighty social butterfly across the room who was tipsy from champagne and leaving for the US the next morning. But we kept in touch over email and soon started visiting each other monthly. We bonded over our shared passion for traveling and Harry Potter.

 

 

I was independent, ambitious, and not ready to settle down. It was difficult enough for me to adjust to the idea of being pregnant, let alone prepping myself for a possible life of taking care of a bed-ridden child. I had plans for my life. I wanted to go to grad school. I wanted to continue climbing the corporate ladder. I wanted to live in remote countries and travel the world. I wasn’t entirely convinced I didn’t want to put on a skimpy outfit and dance for a drunken sports crowd again. I wanted to fit in my skinny jeans for many more years. My life was going to be perfect. Gastroschisis was not on the life menu.

 

As we gathered information from a team of wonderful doctors and surgeons, we learned that most babies with this birth defect fair well after a surgery and a 2-4 month hospital stay.

 

So, we tried to stay positive. We tried not to let our minds go to a dark place. I worked all day at a stressful job, and joked around with the doctors and nurses at my weekly ultrasounds. We called him our "inside-out baby" and told the nurses he was going to be grounded until he was 18 for being a little trouble-maker already. My husband would tap dance for their entertainment and would try the machines on himself as soon as the doctors left the exam room, just to crack me up.

 

And it worked. We were the definition of "staying positive." We were the ones comforting our worried relatives, spouting off memorized statistics of successful cases of gastroschisis, topped off with sarcastic jokes. But, often, in the middle of the night, I would lie awake, my heart breaking for the little person I hadn’t yet met, praying for his life. And I could tell my husband was also awake. He would put his arm around my belly, pull me closer, and let me cry.

 

There were times I had my "why me" moments, when I looked at other pregnant woman with envy and disgust. Why did they get to have a normal pregnancy? Why do they get to get excited, register for gifts, pick out names, and set up a nursery? I received weekly emails from babycenter.com and read the blogs of other women with my due date, scoffing at how petty their problems seemed, but really, just jealous I couldn’t focus on the common worries. My friends wanted to throw me a baby shower, but I couldn’t let myself get excited about having a baby. I didn’t want to come home from the hospital baby-less and see a blue nursery.

 

But most of the time, I managed to keep things in perspective. Yes, this wasn’t exactly how I hoped my first pregnancy would go, but at least I was lucky enough to be able to get pregnant. And chances were, my baby would be just fine.

 

After a carefully watched pregnancy, I went into the hospital at 36 weeks to be induced. Our baby’s growth had tapered off, so they decided to deliver him early. 14 hours and a C-section later, I heard two little cries – the best sounds I had ever heard. My baby was alive. The doctors wheeled his incubator by me, and I saw a sweet little goopy face for five seconds before they whisked him away to stabilize him before surgery.

 

 

As I was wheeled into a recovery room, my husband ran to Children’s Hospital down the street to check on our baby. He called me with updates of how the surgeons said his intestines looked only a little bit irritated, that things were looking good. He ran back to check on me, stayed for a few minutes, then ran back to Children’s Hospital and waited for our baby to go into surgery.

 

One of the hardest parts was not being able to see my baby for the first 30 hours. Since I was in a different hospital, I felt so detached from the situation. On an intellectual level, I knew I had a son, I knew he would know me when I first saw him, but I couldn’t believe all that. I felt like the most pointless mother of all time.

 

The surgery was a great success. The surgeon got all the intestines back in his body in one operation, which is not always possible for these babies. For the first time in my life, I understood what people mean when they say they cried “tears of joy.”

 

The doctors had prepped us for a lengthy hospital stay, but I never thought to ask why. As we soon discovered, it is because the intestines spend 8 months in amniotic fluid, so they are irritated when put back in the body and have to get used to their new environment. The body must wait for the intestines to start working again. Most do, but not all.

 

The day-in, day-out hospital life was tough. He had cords and monitors attached to seemingly every open space on his little five-pound body, including a cord directly into his heart to feed him. He wouldn’t be able to feed orally for quite some time. Even though the doctors said he was doing well and that all signs pointed to him making a full recovery, it was still a waiting game – waiting, hoping, praying for his intestines to start working.

 

 

We waited every day for poop, because that would be the indication his intestines had started working. We changed his diaper 15 times a day, probably because it was one of the only ways we could interact with him because we couldn’t feed him, and partly because we thought that next diaper could be The One.

 

He made baby steps. There was an NG tube going up through his nose and down into his stomach, which suctioned out the green bile that the liver produces but his intestines couldn’t yet take down. After two weeks, the volume of green bile being suctioned out had decreased, so they removed the tube. But for the next day and a half, he spit up green bile, so they had to put a tube back in. I couldn’t stay in the room and watch, even though I was assured it wasn’t painful. However, they realized they had inserted too small of a tube and it wasn’t draining out the green bile effectively, so they had to take it out again, and put in a thicker tube, so I, once again, stood on the other side of the door and listened to my tiny baby boy scream at the top of his lungs.

 

During the first four weeks of his hospital stay, I couldn’t stay positive. I couldn’t stop my mind from going to worst case scenarios. My husband and I would watch Heroes and Lost episodes on our laptop, we befriended every nurse on the floor, we saw roommates come and go, we tried to make it as normal of an existence as possible, but I had never loved something so much in my life and never had so much to lose. He would look up at me with huge, expectant eyes, cuddling on our chests, not knowing he had a cord going into his heart that was keeping him alive. We had to handle him so carefully as to not disturb the cords and machines to which he was hooked up, and we couldn’t go outside a one-foot radius of his crib or we would pull the cords. He was so beautiful, so perfect, he didn’t deserve this. How could he, the perfect little human being I was holding, how could he not be okay? How could there even be a chance he wasn’t going to make it? He was too wonderful for this world not to have him. I held it together all day, but my release came when I locked the door to the breast pumping room. In there, my mind went to places I didn’t let myself go outside that room.

 

Six weeks after he was born, he pooped. I had been down the hall getting water, and when I came back in the room, my husband was fist-pumping the air with both hands and jumping up and down. I knew his antics could only mean one thing, and I knew the poop wasn’t a 100% guarantee our baby was out of the danger zone, but I exhaled for the first time in a month.

 

We started feeding him orally with a few drops of breast milk in a bottle. As his ability to digest more milk increased, the amount of IV nutrition he received decreased. He soon got better and better, and he didn’t look back. We took him home after seven weeks, which is on the good end of gastroschisis cases.

 

In the grand scheme of things, seven weeks is nothing. But, at the time, it was our overwhelming reality and there was no end in sight. I couldn’t see the past, I couldn’t see the future; I lived day-to-day in an auto-pilot state, knowing I should hope for the best, but so scared to fall more in love with the little thing in the hospital crib next to me.

 

My story isn’t unique, and I know we had is easy compared to many parents who hear much worse diagnoses. But this was real, and in all my "worst case scenarios" planning, I never thought of this.

 

Henry will be nine soon, and he is happy, healthy, wild, and wonderful. Despite his odd-looking belly button and a few scars, you would never know he wasn’t perfectly put together when he was born.

 

All my angst over having a child, all my worries about losing the baby weight, all my depths of self-pity and mourning over what might be – they disappear when I look at my Henry. His toothy smile makes me melt, and his cackle of a laugh is the second-best sound I have ever heard. This is pure, unabashed, unconditional, smitten love.

 

I have redefined perfection in my mind. It isn’t a size 4 figure and a cute guy with an English accent. It isn’t even a baby with flawless, all-in-the-right-place limbs and organs. It is a baby, inside-out or right-side-in, with eyes that pierce your soul and melt your heart and make you wonder how you ever thought you were living before he came along. My baby, intestines flying all about, was perfect all along.

 

And as my husband’s 40th birthday approaches, we plan on spending the day playing with the true best present anyone could ask for, our happy little Henry.

 

 

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