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  • Writer's pictureCindy Orr

Rough Road to Motherhood

I am your favorite blogger’s mom. Using today’s vernacular, I’m going to share my birth story. It’s long been in the rearview mirror, I’ve forgotten whole chunks of time and events, and it’s not something I think or talk about much. But I still remember vividly how it felt like treading choppy water, then sinking below the surface, and finally existing on the bottom for months.

It’s probably important to start with the fact that I was 20. You think you’re grown at 20. Anyone over 30 (40?) knows that’s not true. I was unprepared for having a baby. I don’t have a word to describe exactly how unprepared I was for pre-eclampsia, a premature birth, and an ill baby.

I didn’t feel horrible the first trimester. I was very tired and fell asleep if I sat down. Certain smells made me nauseated. But I don’t remember ever actually throwing up. It was rather uneventful.

After that first trimester, I started feeling awful. I still don’t know if it was normal pregnancy awful or because I was sick. The exhaustion only worsened. I constantly felt like my brain and body weren’t connected. And I progressively felt like I was moving through mud; just walking from the car to the door felt like a Herculean task.

What did my OB have to say? Nothing. I never missed an appointment. I reported how tired and spacey I felt. But I was so young. I didn’t press. I didn’t even know to press. I thought this was normal. And I know for some, it probably is. I know women who love being pregnant and I know others who absolutely loathe it because they feel so awful.

During one visit, he barked, “Cut down on salt.” I now assume it was because my blood pressure was elevated. He was old school, probably past retirement age at that time. He was not about to explain things or entertain questions. If this had been when I was older, I would’ve had exactly one visit with him. Probably not even a full visit. I once walked out of a doctor’s office one minute into an appointment when he chided me for wasting his time because the appointment started five minutes late. I’d arrived fifteen minutes early; his front desk was pure chaos. So yeah, older and less vulnerable me would’ve asked more questions and demanded to feel like a partner in my care.

Fast forward to just under 30 weeks gestation. It was the first week in July. I had my first childbirth class. The instructor spent most of that class talking about expectations and how “there is love in imperfection.” It dawned on me that not everyone would have a great labor or a healthy baby and she was assuring us that we’d deal with whatever would come and get through it. “There is love in imperfection” has stuck with me for over 33 years. She didn’t mean having a girl when you wanted a boy. She spoke about hardship, heartache, and grief.

The next day was July 6. I was off work and doing laundry. Carrying the laundry basket felt like lugging a boulder around. Then I started seeing double. I knew this was not the normal feeling-awful during pregnancy. In fact, I thought I remembered seeing double vision as a sign of something bad in one of those pregnancy books. I checked my book, and “visual disturbances, such as double vision” (thats exactly how it was worded) was listed under warning signs of pre-eclampsia.

I called my OB’s office. I told them I was seeing double and needed to come in to get checked out. The lady responded, after sighing while looking up my records, “Your next appointment is the 13th. You can probably wait until then.”

I told her I’d be at the office within an hour and hung up.

It was a whirlwind after I was taken back into an exam room. I had severe pre-eclampsia. They wheeled me from the medical building to the hospital proper and admitted me. I was there a few hours, I think. I don’t remember much while I was there. Eventually I was told I had to deliver immediately and they were flying me to a downtown hospital due to the quality of their NICU.

Once admitted to the new hospital, induction was attempted. I wouldn’t dilate and my blood pressure kept climbing and my kidneys were failing, so it was on to an emergency c-section. I started convulsing on the table just before they put me under.

I remember only flashes of the next few days. I know my kidneys had a rough time and swelling was bad. My face was even with my nose because my face was so swollen. I was told by the OB who delivered my daughter that she’d stopped by the NICU and the baby was “doing mediocre, hanging in there for now.” My lungs filled up with fluid. I could feel it gurgling before they knocked me out. As I was losing consciousness I thought - this is it; I’m going out by drowning in a hospital bed.

I spent five days in that room, the first full four days immobile, flat on my back. I was alone, no roommate, which was rare back then. On the fifth day I sat up for the first time and later took a few steps. The swelling finally started decreasing, like a balloon getting a pinprick and deflating slowly. That evening I was moved to the maternity ward. I was glad and relieved to be feeling better, not worried if I’d be a maternal death statistic, but the maternity ward was rough. I felt certain my baby was doomed, and I had to listen to newborns crying and new moms and their loved ones ooing and ahhing over babies. It felt like psychological torture. I spent three days there before being discharged.

On the way to the new room in the maternity ward, they took me to the NICU. I’d seen a couple fuzzy Polaroids. But I saw my daughter for the first time that night.

I named her Caitlin. I’d read the name in an Irish novel when I was a kid. I always knew I’d have a daughter and I always knew her name would be Caitlin. When I had to hand the name over, I hesitated. I thought about whether I wanted to name her Caitlin and then have to bury her. But Caitlin had always been her name, the only name for my future daughter. She was already Caitlin.

No one I knew had heard the name. I had to spell it for her dad to complete the paperwork for the birth certificate. It was more than a little nuts when she went to preschool (Surprise! She survived!) and there were a slew of Caitlins. But they were all spelled differently and hers was the only Irish spelling.

That first visit, on the fifth evening of her life, I felt like my my chest would explode. I was still ill, sure. But seeing her was intense and overwhelming. They let me stand up in front of the wheelchair to see her better. Everything got wavy and then my vision started going, so I had to sit down and stretch to be eye-level with the incubator.

She was born weighing 2 lbs 5oz. She was under gestation weight by about ten or eleven ounces because I’d been sick and didn’t know it. At that size, for preemies, every ounce matters. She’d lost down to 1 lb 12 oz by the time I got to see her.

Of course she was in a mess of tubes. She was ventilated and had a feeding tube. She was on oxygen, heart, and breathing monitors and had multiple IVs. One of the IVs was in her head, just above her forehead; they’d found a good vein there.

She looked like skinny twigs covered in wrinkly brown-paper-lunch-bag paper. It was a lot. I was filled with grief and remorse. I sat with a finger on one of those teeny arms, my head against the plastic of the incubator, and fat, hot tears rolled down my face as I told her how sorry I was that my body did this to her.

When I was discharged, the NICU staff told me that I needed to take care of myself and heal, not to feel like I needed to come to the hospital every day. That would prove to be a useless admonishment. Having no hope Caitlin would live, I bounced between wanting to be there everyday and never wanting to step foot in that place again.

She did poorly for a long time. Brain bleeds (thankfully minor). Apnea. Her heart would stop beating. She sneezed and blew a whole in her tissue-thin lung. She was diagnosed with respiratory distress syndrome and then bronchopulmonary dysplasia. Her lungs were shot from prematurity. From what I’ve read, steroids to mature the lungs in cases of pre-term delivery weren’t used widely as practice until the early 1990s. And artificial surfactant for preemies wasn’t yet FDA approved. Both could have made a huge difference for her lungs.

She was in the NICU long enough that you notice babies missing. You know they were much too small or too unstable to go home. The first time I noticed one gone, I asked, “Where's Marcus?” The NICU nurse pursed her lips, closed her eyes, and shook her head “no.” I never asked again.

Caitlin came home at 3 1/2 months on oxygen, multiple medications, and in-home nursing. She was born before her sucking reflex developed, so she had to be trained to eat. While still in the NICU, they’d fill her belly with high calorie formula through a tube while an occupational therapist would manipulate her mouth, later introducing a tiny nipple with formula in it, so she would associate her belly getting full with sucking and would learn how to eat from a bottle. When she came home, eating was still an issue. She was weak and sucking a bottle was a lot of work for her. She gained weight very slowly because she burned so many calories while feeding. Some of the medication affected appetite, so she wasn’t even really interested. The occupational therapist showed me how to trigger the sucking and swallowing reflexes; a 2 ounce feeding might take over an hour and consist of triggering autonomic responses rather than her actually eating.

I’ll insert this here, but it impacts the experience from birth until she was five or six months old, maybe even older: no one would speak of her in a future sense. No doctor. No nurse. The huge binder sent home with her for her in-home nurses listed her prognosis as “poor.” Because of all this, because no nurse or doctor used her name or ever indicated that there could be a good outcome, I truly thought we’d be burying her. I understand they don’t want to give false hope when it does look dire. But living with that certainty sent me spiraling to a place that was dark and deep. I’m sure being postpartum made it an easy and quick trip. Even after the depression eased and her health was improving, it took me a long time to think of her as permanent.

I know now that I was experiencing my first clinical depression and was having periods of depersonalization. Numbing myself, removing myself from MYSELF, became like flipping a light switch. I was in survival mode. When I truly believed every day was an exercise in futility and that if I allowed it, my heart would break into a million pieces in my chest, there were only two choices: numb or full-on breakdown. I chose the former; I chose numb when I could manage it. It felt like the only way I could get through it.

Within the first week at home, Caitlin choked on formula. She didn’t aspirate but her trachea clamped shut and she turned blue. After an ambulance ride to the suburban hospital, she was diagnosed with pneumonia. She didn’t have pneumonia; they read her scarred and messed up lungs as pneumonia. After saying they weren’t equipped to treat a sick preemie, it was another ambulance ride to her birth hospital downtown where she was admitted for a few days. They wanted to watch her after the no breathing/turning blue incident and also see if she could be weaned off some of the oxygen.

I think the oxygen was maybe an eighth of a liter lower when she came back home. That was a win, what felt like the first one.

Another win was a new home nurse. Her name was Bonnie. She was the first medical professional who treated Caitlin like a real baby and spoke about her as if she’d actually grow up. She’d sing to her and play with her and tickle her belly. She’d talk to me. Really talk to me. She asked me about the delivery. She voiced how hard it must’ve been. She asked me questions about the future - Do you think she’ll be a girly girl? Think she’ll like the beach? She insisted I go out for walks, that I get fresh air and sunshine. She was as much a therapist for me as she was a nurse for Caitlin. I wrote her a letter afterward, after the in-home nursing was done and Caitlin had just ended all medications, to let her know how much she’d helped us, how much she’d helped me. We spoke a couple times after that. We moved out of state that summer and lost touch. I regret not keeping in touch with her. She was truly a gift.

So Caitlin started slowly improving. After she started coming off meds, she smiled for the first time. She was at least 5 months old. I figured she either didn’t feel well enough to smile or had nothing to smile about until then. She was off all her oral meds and breathing treatments at around 8 months old, mid-March 1989. When she was 8 1/2 months old, at an early April appointment downtown with her preemie-specializing pediatrician, we got a huge surprise.

After some testing and lung x-rays, Caitlin was standing on my legs bouncing and laughing, something just a couple of months prior I couldn’t have imagined, when the doctor walked into the room and said, “Mom, take that cannula off her and close the tank. She doesn’t need it anymore.” I couldn’t believe it! Those huge oxygen tanks at home (along with yards and yards of tubing so she could always be hooked up) and the small portable tanks on wheels were just part of life. Baby equaled oxygen equipment.

They kept us around for a while that day to monitor her off oxygen. To be safe or to convince me? Hard to tell. It really was a great feeling, like winning the lottery. It was so strange to not have a connected baby. She’d always been connected to oxygen! It took me days to stop grabbing for the tubing to swing it here or there or drag it behind us.

Caitlin had milestone delays from being premature and then so sick for so long. She didn’t sit well on her own until probably around 9 months. She didn’t crawl until right around a year old. On her first birthday, she was the size of a 6 month old. She started walking around 18 months old but made up for lost time by running full-speed everywhere she went.

Long-lasting impacts? First, I’ll mention what prematurity can cause, from both physical things like brain bleeds in preemie brains and from therapies used to treat preemie conditions. Blindness. Deafness. Cerebral Palsy. Intellectual disability. General poor health. Poor growth. These are the biggies.

Caitlin, as those of you who know her personally are already aware, is little. She was 4’10” and we thought that was it, but she had a weird-for-girls late growth spurt in high school and hit 4’11”. She’s not just short; she’s little. She can’t wear adult-sized gloves and wears a size 2 in kids’ shoe sizes. But both her maternal grandmother and I are short, both 5’0”, so it’s not like she’s noticeably shorter than us.

She also has asthma that is probably a left-over from damaged and scarred lungs, although there are a couple asthmatics scattered in the family. She was continually sick in pre-school and elementary school and would have to go back on breathing treatments intermittently. She developed pneumonia in kindergarten and spent a week in the hospital. But as she got older, both the frequency and severity of these bouts lessened. Now in her 30s, she doesn’t catch 100% of the viruses she’s exposed to and once in a while, a cold will stay in her head and not travel to her lungs and wreak havoc there.

She has a scar, a weird indentation, on her side that most people will never see. It’s from a chest tube to keep her lung inflated.

So that’s not so bad. In fact, it’s pretty amazing. She’s careful with the asthma and can often head off a case of bronchitis by starting breathing treatments and/or other meds early when she gets sick.

The best part? Caitlin is probably my best friend. I’d vomit a little in my mouth if someone else said that. I always told her when she was growing up, “I am not your friend. I am your parent. Maybe we can be friends when you’re older. If we like each other.” She’s an adult now. I love her. But it’s a bonus that I like her. (And she likes me!) She’s trustworthy and loyal. She’s funny. She’s got a sassy streak. She’s kind. She feels the weight of others’ hardships and while that can be a burden at times, it allows her to feel true compassion for others. She is self-aware and always strives to learn and evolve. I can be 100% myself with her. And because of these things, she is my friend.

I’d do that awful time all over again.

(Now let’s see if she’ll post this without balking at that last paragraph!)


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