Our NICU Journey

our-nicu-journey

It was our first night as a family and at 4 a.m., the nurses were doing their check in on our little girl. In my sleepy fog, I watched as they checked her out. Then one nurse leaned over to me and whispered, “We need to take her to the nursery to run a couple more tests. It is completely normal. We will be back shortly.”

I nodded and trusted that everything was ok. She seemed ok. While she was four weeks early, a “late term preemie,” but the doctors said she was healthy and that late term preemies rarely have complications. She was grunting a bit, but I didn’t know normal noises from otherwise. I was a first time mom. She was struggling to latch, but I read over and over how normal that was. So I watched as they rolled her out of the room and my heavy eyes shut for a bit.

A half hour later, I awoke and realized she wasn’t there. They hadn’t brought her back yet. I knew then that something wasn’t right. I woke up my husband who tried his best to reassure me. And, then the nurses opened the door and all I could see was the incubator they were rolling our baby girl in. She left in her hospital grade bassinet and came back in this contraption. My eyes filled up. I couldn’t even hold her. The nurses had to take her up to the NICU, they said. She was having trouble breathing. We could come up in a couple of hours after the morning staff change and meet with the doctors to learn more.

It was the longest two hours waiting for the ok to head up to the NICU. We had no idea what was happening yet.

Each day in the NICU was long, but a blessing. She was progressively getting better, though it wasn’t without a few setbacks. There was a possible infection with water in her lungs, so they gave her antibiotics. She got jaundice, so they placed her under the phototherapy lamp for a couple of days. Breastmilk was not an option for her right away, so they gave her sugar water while I pumped every two to three hours to maintain my supply, even through the night, wishing so much to be able to breastfeed her. She lost a significant amount of weight and had trouble regulating her temperature. All the machines she was attached to were scary. Hearing every signal and fearing the worst when one beeped too much or stopped beeping at all.

On day three, I was finally given permission to hold my baby. It was the most beautiful moment. She was tiny, but her big blue eyes opened wide enough to look at me with the most serious face (a look she still has to this day), looking at me skeptically, unsure of everything. I wanted the moment to last forever, but our time was limited and the beeping started and I had to place her back in her bassinet.

That same day, she was allowed to have some of my expressed breastmilk. I watched with pride as she was provided the liquid gold I had made for her through the feeding tubes.

We learned to celebrate the wins. We were thankful for the amazing NICU nurses we had that cared for our baby girl as if she was their own and cared about us, never laughing at our constant questions.

Five days after she was admitted into the NICU, she had been pricked so many times, the nurses were unable to find a good location to relocate her IV. They brought in a specialist and she, too, could not find a good location. They had tried her arms, legs, head…she was pricked everywhere. It was heartbreaking, but she was taking it all like a champ, barely crying with each poke. They called in the doctor who examined her and he agreed that it would not be a good idea to try to relocate the IV. As confusing as that sounded to us, he assured us this could be a good thing. He told us that was recovering well and that there was no more water in her lungs. They stopped giving her antibiotics and monitored her for the next 24 hrs.

She did very well and the next night we were granted permission to stay the night with her in a special room where she would sleep in a bassinet next to our bed. The room was across the hall from the NICU, just in case.

The next morning, after a final round of tests, talks with the nurses and doctors about what to expect and next steps, we prepared for discharge. Our beautiful, brave and strong baby girl overcame the worst and was granted permission to come with us. We were overwhelmed with joy and fear, but hopeful. The fight doesn’t end after discharge.

She had a few more doctor appointments than the usual well checks. We had to weighed her a few days a week for several weeks. There was a need for extra iron in her diet and she had to be force fed around the clock. We spent many sleepless nights waking her up every three hours to feed her for two months until she got back to her birth weight.

Keeping a sleepy baby awake is no easy task, cold, wet towels, tickling the feet, undressing her and redressing her, changing her diaper, we tried everything. And, then we got the news that she weighed enough to feed her on demand. She has continued to grow and develop, though she is still on the smaller side. At 10 months, she is perfect and we are thankful for every moment we have with her. Every cuddle, every smile and laugh. Every milestone met.

I look back on all of this as I am writing and we have much to be thankful for. We were only in the NICU for a week. Less than they originally thought and much less than some of the stories I heard from fellow NICU parents. The NICU journey is not an easy one, whether you are there for one day or three or more months. The words, “we have to take your baby to the NICU” are words no parent ever wants to hear. Walking into that large room with so many babies, of all sizes and needs, with parents hoping for the best, fearing the worst, is the scariest experience.

Celebrate the wins and remember you are not alone.

 

 

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