My NICU Story

I never expected my baby would be in the NICU.

I mostly thought it was premature babies who require the neonatal intensive care unit. After 37 weeks, I thought we were clear of this possibility. It never occurred to me there may be other reasons for needing such an intense level of medical care.

Lydia was born weighing 8 pounds, 9 ounces. That sounds like a fine weight, but she was born at 38 weeks and 3 days, so she was considered big for her gestational age.

8 lb 9 oz, squishy Lydia born at 38 weeks and 3 days

To catch up on the events leading to Lydia’s NICU admission, click here to read My Breech Birth Story.

After my C-section, our postpartum nurse told us the hospital has a standard practice of blood sugar monitoring for babies born big. Every few hours, they pricked Lydia’s heel and checked her glucose to be sure it wasn’t crashing.

In the middle of the night, she grew lethargic and wouldn’t attempt breastfeeding anymore. Her glucose levels were falling, so they gave her a small syringe of sugar solution. But by the next check, with a glucose reading of 11 mg/dL, she started shaking and she wouldn’t even take the sugar syringe.

They decided she needed to be evaluated by the pediatrician, and took her away to the nursery, her daddy going along with her.

Waiting

I was left alone in my room, unable to get out of bed on my own because of the surgery. It was too quiet, and I was too worried to sleep.

I felt useless and longed to do something to help my baby. Knowing colostrum is considered “liquid gold,” I started manually expressing whatever I’d produced (which I’d never learned how to do) into a clean spoon from my food tray.

Surely this will help her blood sugar, I thought. I’ll let them know as soon as I can that I have this and they can give her even just these few drops.

A nice British lady came in to take my blood pressure and temperature and very gently informed me they couldn’t use what I’d expressed because it wasn’t in a sterile container.

I was crushed.

Eventually my husband returned—alone. They’d taken Lydia to the NICU and we weren’t allowed in until they were done getting her set up; until then, we were to wait in the room for someone to come and talk to us about what we should expect. We hung about anxiously, unable to sleep or do anything else until we knew what was going on. When the woman arrived, I said, “I guess she’ll be in there for the next few hours.”

She shattered me when she replied, “We’re talking the next few days.”

As soon as possible, my nurse and husband loaded me up into a wheelchair and we visited Lydia in the NICU, who was hooked up to a glucose IV and a pulse and oxygen monitor, and was safely swaddled and sleeping in a bassinet.

Lydia on day 2 of the NICU. Her left arm is wrapped up to keep the glucose IV in place.

Reality of life in the NICU had yet to sink in for me and my husband, and we spent a long time marveling over our newborn, taking selfies with her, giddy with excitement.

After a while, our nerves calmed, we returned to our room to get some sleep before the first long day began.

Getting used to the NICU

We received a packet of recourses to help smooth our transition into the NICU, including a paper on “cluster care,” where babies receive a diaper change, their checks, their milk, and skin-to-skin all at once, before being returned to their bassinets, the preferred sleeping place, until the next round of care.

Each instance of cluster care happens at a scheduled time for every baby; for us, a round started three hours after the beginning of the previous one, usually at 6:00 o’clock, 9:00 o’clock, 12:00 o’clock, and 3:00 o’clock.

This kind of care where everything is lumped together on a schedule must be necessary to run a NICU, where parents can’t always be there to meet their baby’s needs and the NICU team is responsible for them. It would be chaos for the nurses to be running around from baby to baby constantly meeting all needs on-demand.

Although it’s necessary on a systemic level, and the structure was helpful for building in our meals and sleep around scheduled times, cluster care felt like a weird twilight zone where much of what we’d learned in classes about taking care of our baby was simply wrong. We had to ignore our instincts about what Lydia needed in the moment, in order to provide bottles and diaper changes at particular times instead.

On the flip side, cluster care gave us a chance to be as involved with our daughter’s life as we possibly could while separated. If we wanted to participate in her care, we were to be there at a certain time, ready to get our hands dirty. So we did, as much as we were able.

Day and night, as care time approached, we’d wrap up whatever we were doing. I’d pump for twenty minutes, we’d fill out a label and stick it on the side of the milk container, get the wheelchair ready, and set off for the NICU. I’d walk as far as I could manage, and my husband would slowly wheel me the rest of the way.

We’d buzz in at the double doors to the NICU, come into the holding area and scrub our hands and arms up to the elbow for 30 seconds, and wipe our phones with an alcohol wipe. Then we’d pass tiny babies in bassinets and incubators and head to the back to see our daughter again.

The nurse would prick Lydia’s heel and take her temperature. Her daddy would change her and then get her bottle ready as the nurse weighed the diaper and logged all the measurements she’d taken, and I’d slowly settle in on the reclining chair and prop up my swollen legs.

My husband would feed Lydia and we’d spend time holding her, taking her in, and joking around, before laying her down to sleep in her bassinet, swaddled and with a pacifier. I’d exchange the small heart-shaped pillow from beside her head with the other that I’d been wearing under my bra strap; these were given to us upon admission, so Lydia would always have my scent with her.

With that, we’d go back to our room until the next round.

“Motherhood”

I spent much of this time feeling useless as a new mother.

Fresh out of major surgery, I was slow going, had trouble bending and straightening up again, and was still very swollen from fluids I’d been given. My mind and spirit were motivated, but my body lagged as it worked on recovering with drastically diminished resources.

We wanted to breastfeed when we got home, so I was not to feed Lydia with a bottle, lest she associate it with me. So I sat there watching someone else provide for her.

Able to do so little, I felt like I hardly got to do anything for my daughter. For this reason, I treasured doing skin-to-skin. When she settled onto my chest, her ear pressed up against my familiar heartbeat, she fell fast asleep, and her monitors read nearly perfect vitals.

But even skin-to-skin was hard. It was tricky to squeeze it in with all that needed doing; there was little time between cluster care sessions. Whatever else we had to do, like eating, sleeping, and even using the restroom, had to be done outside of the NICU. Trips back and forth took a long time because of my state, and scrubbing in again took time as well. Then sometimes we were able to do skin-to-skin, but the NICU was about to close to visitors for 45 minutes while the medical team briefed their replacements at shift change.

It felt like so much stood in the way of me caring for and bonding with Lydia, and it hurt to feel like I had so little a role to play in my baby’s life.

Forcefeeding

Feeling useless was only one difficult aspect of the situation. There were many painful moments in the NICU, some of which will be discussed in part two of this story.

The hardest lingering memory is of how we fed Lydia. She was required to eat a minimum quota of milk at every feed, but she almost never wanted all of that amount. We wanted to enjoy feeding our daughter, and we certainly did, but near the end of every session, when Lydia was done eating and hadn’t yet met her quota, it got ugly.

She just wanted to sleep, having eaten her fill, but my husband had to keep jostling her awake and swirling the bottle around her mouth, fruitlessly enticing her to drink more. She’d cry a pitiful cry, but we were supposed to ignore it.

It was like trying to pour a milkshake down the throat of an extremely drunk person.

My instincts constantly stomped on, I kept wondering, why are we doing this to her?

On one hand a close friend was sending me pictures of walnuts and other pictograms representing the size of a newborn’s stomach at various days postpartum, which seemed to make sense given Lydia’s cues, and on the other, the NICU nurses consistently insisted on her taking in much more than that.

On day 3, I finally raised such a tearful fit of confusion with the nurse that she brought over the NICU pediatrician to explain it to me. That’s when I finally learned she was prescribed extra intake to make up for what she lacked in her own body.

Many hours blur together

The days went by so slowly broken up every 1-3 hours with the same routine over and over again.

It felt like there was no world outside of that place.

One morning I caught sight of a beautiful sunrise as I passed the empty postpartum room beside mine on my way from the NICU. It dawned on me that somewhere outside, cars were winding down roads and slowing as they approached stoplights. People were walking into workplaces and ordering coffees and sleeping in, and none of them knew this parallel world we were stuck in, where all I ever saw were the tiled floors and the hallways where certain decorations marked small goals I shuffled to on my way to the NICU. Where the smell of surprisingly hot coffee on my hospital tray barely touched the exhaustion wracking my body and yet the trilling alarm on my phone somehow managed to wake me for the next feed.

Quite unsustainably, we tried to get up for every round, but we found ourselves pushed beyond our limit and needed to skip one in the night and take shifts during the day. When we weren’t there, the NICU nurse assigned to Lydia took care of all her needs.

By day 3, we were losing steam. It seemed like we were never going to get our daughter home. The same monotonous routine, punctuated occasionally with heartwarming moments and with tension and conflict, ran us into the ground.

Learning to trust

I finally realized that this was what God was preparing me for all along as He prompted me to let go of control shortly before Lydia was born.

I’d had no choice over needing a C-section for my breech baby, and now I had no authority over what happened to my daughter in the NICU.

Everyone else made decisions about her, not us. Everyone else chose how much she ate, when she ate, when we changed her diaper (regardless of whether it was soiled or wet), when we did skin-to-skin, and even whether or not Lydia slept in the dark at night and the light during the day.

None of this is what I’d envisioned when I thought about having a baby.

It felt like everything was upside down. It was out of my hands. I was living the intense experience of vulnerability that would force me to trust God.

I had to trust Him, or I’d completely fall apart.

The truth was, as much as I felt the NICU held ultimate control over my child, even they didn’t have more control than the Lord.

And though a lot of things happened that I didn’t like, or caused me pain, the NICU knew what it was doing and would get my daughter better.

It taught me once again that I don’t have total control of my daughter’s well being, that to bridge the gap, I have to put my trust in God. I know this concept is going to be something I will face all the rest of my days.

Perhaps I needed to learn that hard and fast at the very beginning of my daughter’s life.

Related reading: Christian Corner | Entrusting Our Children to the One Who Sees

Escape

Eventually a time came when they told us we would work towards weaning Lydia off the IV.

Just like that, a finish line was slapped onto the endless monotony. All we had to do was reach a point where Lydia maintained a blood sugar above 60 mg/dL for two consecutive feeds without the IV—then we could take her home.

Every care cycle, they’d make a judgment call based on her blood sugar, to lower the IV, keep it the same, or increase it again.

The first few rounds of care, they dialed down the IV several times!

I was pleased to see that the more of my pumped milk she took in, the quicker she got better, and my body produced a lot more milk than normal those first few days. It was almost as if it knew my baby needed it.

The afternoon went well, and as night fell and our visitors left for the day and there was nothing to do but care for Lydia and sleep, we grew amazingly motivated.

But then her blood sugar dipped.

With as little fuel as we were running on, this sudden change, for no apparent reason, derailed us. We’d been pouring ourselves into making Lydia better, getting so close to ditching the IV, and suddenly it felt like we had ages more to go.

In our room after that feed, the mood was thick with discouragement and exhaustion. My husband had attempted to stuff Lydia with her full quota of milk, but she’d refused to drink past a certain point. He’d run himself on empty taking care of Lydia and me, and I hated seeing him so burnt out. It seemed like we weren’t leaving anytime soon, so I suggested he go home and get some sleep in our own bed.

This man, amazingly, declined, but decided to sleep through the next two cluster cares. If by that time it still looked like Lydia wouldn’t be released soon, then he’d go home and recharge.

He crashed on the sofa, and I pumped and delivered milk to the NICU—on my own, which was a spectacular accomplishment—and then we slept while Lydia’s nurse handled the next feed.

A grand announcement

I awoke feeling energized again from those hours of uninterrupted rest. Switching my alarm off, I quietly got out of bed and made the long trek to the NICU, determined that this time, I would feed Lydia. I was sick of never getting to do it.

Shuffling up to Lydia’s bassinet and opening up the drawers to get out a diaper and bottle of formula, the nurse approached me for our usual briefing. “Her glucose was good at this check! It looks like you guys are headed home later today.”

If it weren’t for the C-section, I’d have danced with joy at those words!

Wait until John hears this!

I could barely contain my happiness, adding to it by the multitude as I stared into Lydia’s eyes, giving her the bottle for the first time.

When I got back to the room, my husband was still asleep, snoring louder than I’d ever heard him. As hard as it was, I forced myself to hold off until the time we agreed he’d wake up. The morning sun was rising and pushing its way in through the blinds, casting a matching enthusiasm over the now well-lived-in, disorganized room. Taking in the chaos around me that I’d tried and failed to contain, my mind raced with all that needed packed and all that needed doing.

We were almost there!

The last day

7:00 o’clock rolled around and I roused my husband from his coma to tell him the incredible news. Having gone from discouraged in the night to waking up to such a great announcement must have been marvelous for him.

He quickly went into get-things-done mode. Soon, with a shopping list and some luggage to bring to the car, he left for the store and to get the car seat installation inspected. I packed until the 9:00 A.M. care time approached, then I pumped and set off for the NICU.

When I arrived, I was startled to find the monitor for the IV black and lifeless—Lydia’s sugar must have been so good they’d turned it off completely! That meant there were at least 6 more hours to go, because now she had to maintain good levels for two consecutive checks.

I picked Lydia up—now considerably easier to do without worrying about the IV tubing—and settled in to give her my milk and the formula. “Lydia, you’re going home today!” I told her as I fed her. Her dark little eyes flitted around, taking in my face. “You can’t imagine how excited Mommy and Daddy are!”

After the feed, we did skin-to-skin, waiting for the NICU team’s morning rounds to reach us. I tried to suppress an embarrassingly giddy smile when the pediatrician opened his mouth to speak, expecting him to say they’d be discharging Lydia in a few hours.

Instead, he told me that as Lydia’s blood sugar had been getting better and better, her bilirubin had been climbing—she was jaundiced. He said her levels were borderline too high, and she might need to stay at least another day and be put under the lights.

I couldn’t believe what I was hearing.

Do these people ever want her to actually leave this place?!

To be as close as we were to discharge, and now hearing of another problem—it felt like they wanted to keep her there forever. And all this as my husband was running around trying to finish up preparations for taking Lydia home!

Now hoping to hide tears, I watched a back-and-forth between the pediatrician and someone else on the rounds team. In the end, they decided we’d wait for the next lab to come back and if Lydia’s bilirubin was below 18 or 19, then we could take her home, but she’d have to have blood drawn the following morning at our pediatrician check-up. If it was too high then, she’d have to be re-admitted to the NICU.

Breathing a tentative sigh of relief, I swaddled Lydia and left her in the bassinet to sleep. I headed to the room to finish packing and grab a shower, allowing myself to think about a life outside the hospital.

Leaving

The 12:00 o’clock feed came and went, and Lydia’s blood work arrived with the next feed—her jaundice was below the threshold, and her blood sugar was fine, so we were free to go home!

After giving Lydia my milk and her formula, I carefully peeled and tugged her sleeper off, realizing it was the first time I’d dressed her.

I picked up her going home outfit and slowly, painstakingly put her into it since I was clueless at what I was doing. Complete with her little cranberry headband, and clashing with the whole ensemble because of her jaundiced color, she wore the beautiful outfit I’d set aside for her months ago.

We filled out some paperwork and they snipped off our hospital bracelets. Then we strapped our adorable, bad-spray-tan-orange blob into her car seat.

One of the nurses helped me bring her down to the lobby while my husband brought the car around. Then we put Lydia in the car and pulled away from the hospital.

Suddenly, it was quiet.

No beeping. No whirring.

No hushed whispering.

No babies crying.

It was just us—no nurses, no other NICU parents, no dozens of other babies sleeping or eating nearby. It was the first time since the night she was born that we’d been alone with Lydia. There was no one there to tell us what to do anymore or enforce any arbitrary rules.

Lydia was finally ours.

Adjusting to life outside the NICU

The NICU set in place a mentality that didn’t work for caring for a newborn in daily life. Its effects lasted for days, weeks, and months into life at home with Lydia, and it would be a long journey toward learning to trust my own instincts again.

Click here to read the second part of my NICU experience: How to Get Past the NICU and Enjoy Real Life

~Kaitlyn

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