By Gabrielle. The sweetest calendar by Shanna Murray.
McKay Smith is a lovely storyteller, so I know you’re going to enjoy this recounting of her birth experience. The honesty with which she writes – even when she’s admitting weakness or impatience with her doctors! – is comforting, especially for those of us who may feel like we can’t give a voice to all those shattering emotions raging inside. Maybe we’re afraid of sounding bratty or maybe we’re afraid of sounding…afraid.
But it’s hard to get through a pregnancy without breaking every so often, don’t you think? And that’s when things are progressing according to our plans! Here’s a tale of twins, one with a potentially life threatening defect, and how their mom truthfully felt throughout her journey.
Please enjoy McKay’s words.
I was alone at my second ultrasound when I found out I was having twins. I had excused my husband from the appointment as we’d just had the routine eight week scan a week prior. When I got home and was able to quit crying to tell him the news, we felt like the luckiest people on the planet.
I was not alone at my fourth ultrasound when we found out my boys were, as far as we could tell, identical. We also discovered that day that my Baby A had a birth defect called an omphalocele.
“What’s that circular object above his tummy?” I asked the ultrasound technician about Baby A. The doctor, who I would later refer to by an unkind nickname due to his poor bedside manner, attempted to explain what exactly an omphalocele was. He was really impressed I already knew what it was. I didn’t tell him it was because of a Grey’s Anatomy episode. Basically, the majority of A’s intestines and part of his liver were developing inside the umbilical cord instead of inside of the abdomen. The doctor listed approximately one million different statistics but it boiled down to this: There was a sixty percent chance he would live, and there was a forty percent chance that he wouldn’t due to a chromosomal trisomy.
We no longer felt very lucky.
I don’t know how to describe the next “ten business days” that we had to wait for the trisomy test results without being dramatic. But I am dramatic, and it was dramatic. The first time I saw my oldest sister she hugged me tightly and said, “I’m so sorry. I’m so sorry the doctor had to come in.” She had her second baby at twenty seven weeks so she knew.
I cried for nearly five day straight. The ultrasound happened on a Tuesday, and I got sent home from work by a very understanding boss on Wednesday and Thursday. I would get a handle on my emotions only to crumble minutes later.
That Friday, I was lying on my parent’s couch. My three year old nephew was there, driving his cars on the coffee table, sneaking glances at me every once in awhile. Finally he asked in his funny baby accent, “Which one of your babies is sick?” He was so sincere. I made a more concerted effort to be happy after that.
On Sunday I proudly proclaimed to my mom that I had not cried yet that day, which I think made her cry. Friday we got the call that there were no chromosomal abnormalities. Well…I called and hassled them on Friday so that we didn’t have to wait for news over the weekend. Blessedly, they broke protocol and told me directly instead of going through my OB.
We’d crossed our biggest bridge but there were still a few more in the coming weeks. We actually were lucky. The omphalocele was determined to be isolated. No trisomies. No heart problems. No spinal issues. No kidney abnormalities.
However, there were still a lot of worries, unknowns, and wait-and-sees. Mostly concerning the number of surgeries which rested on the amount of intestines out of place and how much skin and muscle they had to work with.
We met with more doctors and surgeons. I made up more unkind nicknames. I made a tear stained note card with questions for our neonatologist (I actually liked him) like, “Can I hold him?” and “Can he be with his brother?”
I tried to put my worry on hold. I had a fantastic social work professor who taught her students a trick to cope with the baggage that comes with such an emotion-laden job: Take a few minutes out of your day – look at the clock, even – and let yourself worry. During my 25-minute commute to work every morning, I cried. I cried for my Baby A who I was so worried about, and I cried for my Baby B because I already felt guilty for paying them uneven attention. But! I would get to a certain street as I neared the elementary school where I work, and I would stop crying. And then, I would simply put it on hold until the next day.
I was sentenced to bed rest at 30 weeks and had to take a leave of absence from work. I missed that silly ritual almost as much as I missed my job and students.
On Friday, January 31st, I was 35 weeks and three days pregnant. I knew because I triumphantly updated it every day on my board in my hospital room when I was allowed to get up to go to the bathroom. I had been in and out of the antepartum unit for most of January and every day counted. On that particular day, Baby A had been unusually inactive. I spent a long portion of every day with my hand on my left side willing him to move enough to pass my inspection. He did not pass that day. After shift change, the nurse put me on the monitor after I asked for some peace of mind, promising she would take me off in twenty minutes unless she was concerned. After an hour, my husband and I called my mom.
We fell into a pattern that night. Baby A’s heart rate would fall and mine would rise. An alarm would go off and nurses would come in. Eventually, they turned the monitor down so I wouldn’t know when it happened. I slept uncomfortably and fitfully. Every time I opened my eyes, I would see my mom. She sat in an uncomfortable wooden rocking chair all night to watch the monitor for me so my husband and I could rest. I never saw her eyes leave the screen until morning – not even when she quietly spoke to the nurses.
My OB came into the room around noon on Saturday. He and I decided it would be best to do a c-section that afternoon.
My Baby B was born first. The whole twin baby thing had seemed so abstract until I heard him cry. My husband and I looked at each other! A real baby came out of me! And then two minutes later, another baby! The neonatologist, finally able to actually see A’s omphalocele and not just an ultrasound photo, proclaimed it to be “textbook.” I kissed A’s fat cheek and they took him to the NICU. Baby B was to go to the nursery for observation, but was later sent to the NICU as well.
I spent a few hours in recovery. I was HIGH. ON. LIFE. My husband and mom sent me pictures from the NICU. Later, my nurses wheeled me and my enormous bed to the NICU to visit. I didn’t remember this event happened until I looked at photos on the camera a few weeks after the fact.
The next morning, my husband and I got to spend some time with Baby A in a pre-op room. He held my index finger for over an hour. He’d never done that before and wouldn’t really do it ever again. It’s probably a good thing I was in a wheelchair. In hindsight, I can’t really imagine willingly walking away from him.
I wanted to be alone while we waited. My husband stayed with Baby B for me (and waited for the surgeon) and my mom kept me quiet company in my room. It really didn’t take long, it felt like minutes, until my husband called me to let me know the surgery went perfectly and they were able to get all his organs back in and fully close his abdomen. The surgeon even fashioned him a belly button! We had a kind nickname for our pediatric surgeon. We still talk about him frequently.
A spent the next two days coming out of his anesthesia haze. It took him longer than they expected. He was very still and quiet. My husband was concerned that he didn’t cry and brought it up to the nurse one day. She explained that he was crying but due to the breathing tubes, we just couldn’t hear it. He was comforted by this fact and shared it with me later. It had never occurred to me to worry that he didn’t cry. Bless his heart, but when my husband excitedly told me the baby was actually crying silently I was devastated! It still haunts me to think about that.
Baby B got to come home with me the day I left the hospital after my c-section recovery. He had met his eating goals of 25 mLs from a bottle. My sweet nurses let me hold the babies together before we left that afternoon after some finagling on all our parts since they were in separate units. It was the babies’ first time being together since birth.
I called my mom that morning at 4:00 am. “He won’t sleep!” So she came over to relieve me. Which she would continue to do every other night for the next two months. She also kept B every day so I could visit A who was still in the NICU (it was RSV season so B wasn’t allowed back in).
Every morning I would wake up, hook up my pump, and call A’s nurses to see how he had done during the night. He was starting to eat, but not very well. But he did better every day. One day I walked into his pod to find him in a swing. They told me he had gotten pretty vocal and crabby – ha! A couple days later they moved him to the continuing care unit with private rooms since he was disturbing his neighbors with his complaints! That told me he was a big (4 lb. 13 oz.!), healthy baby almost ready to go home.
As he grew, he became more aware. One day I only had time for a short visit. My husband and B were down in the car but I needed to drop off milk and get some snuggles. When I put him down to leave, he cried and cried. I can’t completely remember, but I tell myself I was able to go back later that evening for a longer visit.
There were a couple days I couldn’t visit him because I was feeling sick. In some regards, it was almost easier not to see him because then I didn’t have to leave him. I don’t like to think about that, though.
He only had to spend 15 days in the NICU. Which is basically no time at all considering how long some babies stay in for. But it felt long. I was so excited to bust him out of there that it became very unceremonious. Mismatched going home outfit, no real pictures. But we were free!
I was back at that hospital last week to visit my sister and her newborn baby. It gave me the chills. Good and bad, I think.
We really had a best-case scenario. Some babies with omphaloceles (or a similar condition called gastroschisis) require multiple surgeries, months of skin grafts, g-tubes, months or years of hospital stays, etc. I don’t know why we were blessed to have none of this. I try to be respectfully grateful for our situation. I try not to take for granted healthy, living babies. I try to be a better mom of twins since I had a tiny taste of what it might feel like to not have two with me. That’s the best I’ve come up with so far. It’s something I still consider daily.
My guys are almost nine months old now. They are darling and perfect, needy and loud. But every once in a while I catch them smiling at me from across the room with identical grins and squished eyes, and I feel like one of the luckiest people on the planet.
Thank you, McKay! This is the part that got me: “He was very still and quiet. My husband was concerned that he didn’t cry and brought it up to the nurse one day. She explained that he was crying but due to the breathing tubes, we just couldn’t hear it.” Oh! Imagine that for a minute. I know we probably have all groaned at the beginnings of a wail, but consider if you couldn’t hear it. For some reason, that just breaks my heart!
I also think it’s hilarious that McKay was so anxious to get her son home that she dressed him in a mismatched going home outfit. I know many moms really put a lot of thought into that outfit and mark the occasion with a ton of photos, only to get in the car and drive five miles per hour all the way home! Do you remember those slow rides? Me, too!