LIFE IN THE NICU

by Carmel on May 19, 2016 · 2 comments

Some experiences require to be written in the moment in order to fully capture the reality. And then some require to be processed, to be examined, in order to be fully digested. I couldn’t recount our experiences in the NICU until now. Those 25 days felt endless – if I thought too much about them, I might not have made it.

About 15 minutes after I had Laurel, she was whisked away to the NICU. Shawn followed to be with her during the various tests they had to run to ensure she was healthy and safe. I had to wait until I regained feeling in my legs, which was at least 6 hours post-surgery. I watched the minutes tick by until the clock hit 3pm and immediately called the nurse to be wheeled over there. I have never felt that kind of pain before. I had to get myself out of bed and into the wheelchair – I have no idea how, but I managed to do it.

When I was in the hospital the first time, Shawn was able to go on a tour of the NICU. I chose not to – I can’t really remember why. I had no idea what to expect when we entered. It was quite sterile – we had to wash our hands before entering and be let in the locked room by a staff member. No visitors were allowed without a parent present. It was a little intimidating, but I finally got to see my baby.

A parent never thinks that the first real moments they spend with their child will be with wires and an IV stuck in their tiny little hand, but that’s what we walked into. I never knew a tube could be so small until I saw it sticking out of my little girl’s hand. I thought back to the many photos I had seen of friends and family who have had children – the first picture as a family in the hospital. Mom in a gown, dad glowing with excitement, and a perfect little bundle in mom’s arms, sleeping soundly. It’s what I expected for my family, too. Laurel was born at 31 weeks, 6 days. There’s a rule that babies born under 32 weeks couldn’t be held for at least 24 hours. Never mind the picture, I couldn’t even hold her.

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Twenty-four hours later, holding my tiny baby for the first time

The day after Laurel’s birth, there was a couple getting ready to take their baby home from the NICU. They scrambled around trying to feed her and gather her things while checking in with the nurses regarding discharge instructions. Their baby was screaming and they seemed frazzled. After all this time and all the care, they were finally going home. It also seemed just as exciting and scary as it is for any new parent. Down the row, another family was being discharged that day. It felt like the NICU was emptying out, until the evening when three more were admitted with talk of a group of triplets to come. I dreamed of our turn, the day we’d get to take Laurel home. It felt so distant. Rationally, I knew it had to happen eventually, but in my heart, I was scared it would never be.

Finally the day came for me to be discharged. Forty-eight hours after the circus began, it was time to go home. The Nurse Practitioner who was in the delivery room with us came to talk to me. She wanted to say goodbye. She looked at Shawn and said, “This is going to be the hardest thing she’ll ever have to do – walking out that door without her baby. You need to be there for her. You need to give her extra love through this.”

We had said our farewells to Laurel for the time being, packed up my things, and come up with an exit strategy for the piles of bags and stuff we had accumulated. I had been walking around a bit, but still was very fragile from the surgery. I waited with the NP until the car was there. She turned to me and said, “I know like you feel like you’ve failed, but you haven’t.” It turns out she had had a preemie as well. I thought she had read my mind. I wanted to go home, but I didn’t want to go home without my child. All the expectations I had of this pregnancy were swept away the second I went into preterm labor. It was a new game now and I didn’t know the rules.

As we drove the familiar path home in silence, I had been trying my hardest to distract myself from the experience. I thought if I could just shut down, I might be able to keep it together. We turned a corner and right in front of us appeared a bright, beautiful rainbow. The sight released the tears I was barely holding in. I sat in the car, sobbing silently the rest of the way home. For those who don’t know, when we were little my mom used to love it when we would find her a rainbow. She would even sometimes pay us to find one for her (spraying the hose on a sunny day didn’t count). Somehow, after my brother died, rainbows became a symbol that he was with us. It seemed that one would appear when we needed it most. My fragile facade was cracked and broken wide open.

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We went back that night, but it was different. I was no longer in the trenches with her as a patient. I was an outsider now. We had a new nurse almost every day. I guess they do that so no one gets too attached, but at times it was frustrating. Just when we got used to someone, we had a new nurse. I had to announce who I was to this person with every change. Walking in to go see my daughter, I got looks saying, “who are you?” and would cut off the actual question by saying, “we’re Laurel’s parents.” As much as I know the people who worked with our daughter were competent and caring, at times I felt like telling them to back off. But I knew Laurel needed them as much as she needed us. That was part of my problem. Changing diapers, taking temperatures, and doing many of the things all parents do helped to normalize things a bit, but we still weren’t in charge. We couldn’t be.

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Eventually we were moved to a new floor. The NICU floor we were on was filling up and since Laurel was one of the less intensive cases, they moved her upstairs to the Labor & Delivery floor. Our tiny space upstairs was even smaller than it was downstairs and far less private – we didn’t even know that was possible. With the incubator taking up a third of our (approximately) 6’x4’ space, the nurses and we maneuvered around each other as best we could. Every 3 hours the nurse would come by to set up Laurel’s gavage feed through the tube inserted in her nose, and we would change her tiny diapers and take her temperature through the holes in the incubator. I longed for the day when I wouldn’t have to move wires out of the way just to put on her new diaper.

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Laurel’s least favorite part of the pre-feed routine – getting her temperature taken

I never thought I’d feel such pride over such small steps. First it was when she got the tiny IV taken out that was pumping sugar water and fat into her body while she gained strength in the first days after birth. She had already pulled it out of her hand 2 times, so it was a relief to no longer worry about that. Then it was the first full syringe of breast milk I pumped. Slowly but surely, milestones were passed that got her one step closer to getting out of there. The big 3 she needed to pass were: breathing on her own, moving out of the incubator into a crib and maintaining her body temperature, and taking all her feedings orally.

She started breathing on her own at birth, so thankfully for us, that wasn’t an issue. She moved out of the incubator after about 15 days. That was right before Christmas Eve. We took a card her grandparents back east sent her to decorate her little crib. I hadn’t done much to personalize her space. A couple of the nurses had made cute decorations to put up around her space. I guess I felt like I didn’t want to get *too* comfortable there. Decorating felt a bit like giving up on coming home soon.

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You may have heard the saying, “the days go slow but the years go fast” in relation to how fast kids grow up. Well, in the NICU, exactly the opposite is true. I would get there around 10am every day after pumping and gathering whatever stuff I needed to work that day (yes, I was working part-time from the hospital…a very generous deal from my employers so I could wait to officially start my maternity leave until after she came home, but also an incredibly exhausting feat). Somehow I’d look up at the clock and it would be 5pm. The time at the hospital would fly by – changing diapers, taking temperatures, cuddling, pumping, and feeding. I would just sit there and stare at Laurel, taking in every second I could be there like a drug I was hoping wouldn’t wear off. And then it would be time to go. Yes, we could stay there round the clock if we liked, but the more time I spent at the hospital, the more I felt my energy draining away. I needed balance, and I needed that little bit of energy to produce enough milk for her, so I forced myself to leave.

outfit

We dubbed this one the “starfish” because it was so big on her – that was the day she weighed in at 4 lbs.

There were, of course, little victories and celebrations along the way. Besides the milestones, it was exciting the first time we got to dress her in an outfit. I told my mom she could buy her a few things, I was sent home with about 10 new outfits a couple days later. The first bottle I fed her. The look of peace she would have on her face when she knew mom and dad were close. Her first bath. These were all things we looked forward to, if only in a different setting. The joy feels the same, though. Perhaps, in contrast with the hardships, it feels even better.

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Learning how to feed Laurel a bottle – she looks ready for more!

The moment you set eyes on your baby, it’s impossible not to fall in love. But just like with other forms of love, being in love doesn’t last forever. The true lasting love that a parent feels for her child, particularly the love of a mother, takes time to grow and develop. It’s not instantaneous. Although walking out that door the day I was discharged from the hospital was painful and, at the time, one of the hardest things I’ve ever done, it only got harder. With each day my love for Laurel had grown in ways I could not imagine. Subsequently, each day I had to leave her grew more painful. The day I was discharged I felt I was leaving a piece of my heart behind. By those last days, it was solely my body that would leave. My heart was with her. Every day when it was time to leave, the pangs of guilt I felt were almost unbearable. I would do my best to leave her when she was sleeping so she didn’t see me going. If she did, I felt like I was abandoning her. I know she’ll never remember those times, but I knew I would.

Being born during the holidays, we were told so many times what a great Christmas gift she was. And she was. But the more I saw pictures of other moms home with their babies and spending their first Christmases together, the greater my envy became. Although I knew it was nearly impossible, given that she was born 8 weeks early, I had hoped she might be home for Christmas. As we counted down the days to Christmas, I saw that hope slip away. We  prepared at home the way any normal family would – buying a dresser, installing a car seat, etc. The day we installed her car seat, I sat in the back seat of the family car we bought last summer and just stared at the empty seat. I thought about the day it would be occupied and how much I wanted to be back there holding her hand. I sighed and walked back in to our empty house.

One day, I couldn’t take it any more. I couldn’t take that hard wooden rocking chair stuffed next to her crib. I couldn’t handle one more beep from that damn monitor. I couldn’t stand to see the slow drip of my milk barely coming out as I was on my 20th minute of pumping – barely keeping up with her needs. It had been over 2 weeks and I still wasn’t able to breastfeed and had only just begun giving her partial feedings by bottle. I was tired. The nurse from our Centering group had a preemie. She told me that I’d reach my limit eventually – I wouldn’t be able to hit that elevator button one more time, or sit in that NICU and pump one more ounce. I’d just be over it. The last week of the year was that point for me. I got sick of the drive to the hospital. I had made it so many times in the last month. I watched the reader board of a school along the route count down the days until winter break, then leave up the reminder to read over the holiday. I had enough.

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Christmas Eve. Shawn had the day off and I had worked enough hours to take off early. We stopped at the hospital before heading to my mom’s house for our annual family gathering. It was going to be a little more low key this year as much of the family had other plans or was out of town. A small gathering was more than enough for us to handle. I sat in the chair, staring at the plastic crib with the Rudolph card pasted to it. I was pumping in silence with Shawn sitting immediately to my left reading his book. I stared at the slow drip of my milk coming out. The one thing only I could do for my child and it was barely enough. I yanked the cups off of my breasts and threw the bottles. I’ll spare you the details – it wasn’t a shining moment for either of us. The nurse came over to see if we were ok behind our “privacy” curtain (because a curtain can only provide so much privacy). Not being able to hide my tears, I told her I was frustrated. She assured me that my baby was getting enough from me – she was only receiving my milk, no more donor milk was needed. She assured me I was doing what was needed. It wasn’t enough, though. The hardest part about leaving my daughter in that hospital day after day wasn’t just being apart. It was believing that she didn’t really need me. She had a whole staff of people to care for her every need. It broke my heart.

Twenty minutes into the trip to my mom’s, after a stifling silence, Shawn and I hashed out what had happened. We were both so tired. I was hormonal – it had only been 17 days since I gave birth. At the root of it all, though, was just sadness. This was supposed to be a joyous day – our first Christmas with our baby, and we were leaving her behind.

Christmas was even mellower than the night before. My mom came down to Tacoma. She and I attended mass while Shawn spent some alone time at the hospital with Laurel. Eighteen days after she was born, we finally got a proper family photo.

familyphotos

The next week went by without much more drama. My hopes of her coming home before the New Year were diminishing quickly as there was no sign of the feeding tube coming out. At this point I decided I better brace myself for a longer stay than I had hoped.

Parents are invited to attend the morning rounds with the doctors, nurses and specialists who take care of the babies in the NICU. When your baby is up, they call you in to attend and ask any questions you may have at that time. We tried our best to be there as often as we could, made more difficult by the fact that they didn’t always start on time. Sometimes they would start an hour, two, or even three or four hours after “normal.” Just depended on the day.

December 31st – New Year’s Eve. I was alone that morning. Shawn was off at work and expected to be home at a reasonable hour since the families he worked with were making their own plans for the last day of the year. I wore my sadness on my sleeve that morning. I had gotten up from the last fall, brushed myself off, and continued on with the race…only to stumble again. I was tired. I was done. I wanted my baby to come home and I wanted to know why she wasn’t yet. Why hadn’t they removed the tube yet? What was stopping them? She was strong enough – I could feel it. I sheepishly entered the room as they began conversation about her progress. To all of our surprise, she went from taking 29% of her feedings orally to over 90% in one day. The final obstacle was almost conquered. My hopes were sky high. The doctor turned to me and said, “do you have anything questions?” The only one I could think of was, “so, when can she come home?” It was a question I was asked every time I spoke to a friend or relative these days. I always had the same answer: “well, she has to complete these three things…” That routine was getting old and I wanted answers. The doctor told me it could be anywhere from 2 days to 2 weeks. It’s hard to say. Her uptick in oral feedings could be a fluke. In my mind, all I could think was, Can’t we at least TRY to take the tube out?? But I had my answer. Or, rather, I didn’t.

nye

Smiles despite the sadness in my heart

The doctor made her visits after rounds. She came over as I was pumping. I already felt extra vulnerable that day, but it was amplified when she said to me, point blank: “You look sad today.” That was all it took. I didn’t take it as prying or rude. She was concerned. I didn’t get the answer I wanted, and she knew it. She sat down to talk to me for a few minutes. I could understand why they were cautiously optimistic. It didn’t help the longing in my heart to start 2016 off with our baby at home.

Shawn and I planned a date night at home – a little picnic of meats and cheeses, as well as some good beer for him and a small bottle of sparkling wine for me. We cleansed ourselves from another hard day of saying goodbye with some vinyls, good food, and conversation outside of our usual topic of the hospital. I was in the kitchen cleaning up when I noticed a missed call on my phone. Shawn’s phone rang next, but we just missed it. The hospital was trying to get a hold of us. It’s hard to explain the sinking feeling one feels when you see a call from the hospital. It felt like the other shoe was about to drop. I had waited for this call – hoping it woud never come – and there it was. I started to panic. Something was wrong, I knew it. I told Shawn he had to call back. I couldn’t handle whatever it was they had to tell us. As tears started to well up, I had a million different scenarios playing in my head, none of them good.

Shawn was smiling as he spoke to Laurel’s nurse. There was an excitement in his voice that neither of us had had for weeks. He hung up, smiled at me, and said the best thing I could have imagined: they were going to take the feeding tube out and see how she did. If all went well, we could be taking her home that weekend. As in, the day after tomorrow.

Tears started flowing down my face immediately – this time from joy. What a way to ring in the New Year! That night, we toasted to our family, which would finally be complete soon.

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Seeing Laurel for the first time since birth without a feeding tube

The next day we headed into the hospital as usual, but with a lighter step. I brought my cooler bag full of milk for the refrigerator. I was pumping during rounds, but they left the door open so I could hear since no other families were there that morning. Shawn attended and I could hear the updates from all her specialists. Then finally there was some conversation I couldn’t hear and they asked, “How does that sound mama?” I told them I couldn’t hear. Then those magical words were crystal clear: “Do you want to take your baby home today?” Uh, yeah… The same doctor who told me it could be 2 days or 2 weeks just the day before was the one to discharge Laurel. My little girl showed everyone just how strong she could be.

Preemie babies have to sit in their car seats for 90 minutes while on monitors without an episode of low heart rate or oxygen saturation before going home. It’s called the car seat test. Although she had never had breathing problems, I hesitated to get too excited until it was over. Of course, she passed with flying colors.

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We weren’t ready. At. All. I mean, emotionally we were ready. But in practice, we were NOT ready. We thought we’d have at least one more day to get things set up at the house. We didn’t even have a changing table. It was a mad rush to get the house somewhat clean, buy the supplies we needed, and warm up the house above the 65 degrees we usually kept it at so it was ready for her homecoming. But first we needed food. We stopped by a local restaurant for a quick bite to eat. We both sat there in disbelief this was all happening. This certainly wasn’t what we thought taking her home would look like, but it was happening and that’s all that mattered.

carseat

She looked so little in her car seat

On January 1st, the day we brought her home, Laurel weighed only 4 lbs. 9 oz. She was barely out of her preemie clothes, but all her newborn clothes were too big. She had one fleece pajama outfit that we rolled up the sleeves – the label proudly stating, “My First Halloween.” Our Christmas tree and lights were still up. The best present we could imagine was on her way home, in her car seat, holding my finger.

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Starting the drive home, away from that hospital, felt like the beginning of something big. We were nervous and a little unsure of ourselves, but it was right. It was finally all right.

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{ 1 comment… read it below or add one }

Jenny May 19, 2016 at 8:38 pm

Man, that brings back memories. I remember with both boys it was always one step (milestone) forward and two back. It’s such slow progress. I always, always feel for parents that have to go through the NICU experience – and especially those who have to go through it SO much longer than we did!

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