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  • Writer's pictureStephanie Gaur

The Birth Story (part 2): Life in the NICU

Brooklynn remained in the NICU for 6 days. This is nothing compared to what many NICU families endure and I am so grateful for that– and at the same time, every minute of those 6 days felt like an eternity. On my first night home without Brooklynn, I packed a NICU go-bag, filled with some essentials– snacks, tissues, medicine, notebook and pen, a blanket, and pumping supplies. Determined to build my milk supply, I set my alarm for every two hours and woke up, bleary-eyed, to pump in the middle of the night.


The next morning I woke early and called the NICU nurse line to check how Brooklynn did through the night. Eager to see her, I left for the hospital with the sunrise. For the next several days, I lived off of pretzels, Kind bars, and hospital coffee. We learned the times that doctors usually made their rounds and made every effort to be sitting bed-side by the time they got there. I kept a binder in my handy go-bag to keep notes about what the doctors were saying and tests that were run. Most of the medical jargon went over our heads and the doctors spoke very quickly. We scribbled down all of the key words we were able to catch. When the doctors finally moved on to their next patient, we looked to Brooklynn’s nurses to help “translate”. They would explain the medical terminology and explain her next steps. They talked us through procedures and what to expect. Her nurse team was incredible– there are really no words to express their undying patience, compassion, and professionalism. The NICU is filled with scared, confused, hormonal parents; babies are crying all night and need round-the-clock care. When I say that NICU nurses are God’s hands and feet, it is an understatement. I am eternally indebted to them.


The Tests

During her NICU stay, Brooklynn underwent several procedures and tests. They needed to get imaging of her brain out of the womb to get a clearer picture of what was going on. She had her first rapid MRI at 1 day old followed by a full MRI a few days later. For the full MRI she had to stay completely still which meant putting our few-day-old baby girl under anesthesia. She also had a 24 EEG to monitor brain activity and to check for seizures. This involves dozens of electrodes being affixed to the head and covered in a sock cap. It also meant that I wasn’t able to nurse or hold her for that 24 hour period. This is probably not such a big deal, but the hormones raging through my body, my lack of rest, and fear coursing through my veins made this unbearable.

The Results

Following her EEG, we were called into a conference room with her neonatal neurologist to discuss the results. As we walked into the sterile room, we were instructed to sit on the far side of the wooden conference table. The doctor sat down in the swivel chair opposite us, looked us in the eyes and uttered her first words to us.

“This is bad. This is really, really bad.”

My body went into defense mode. My heart pounding in my ears, I only registered bits and pieces of what she said next.


“...sharp spikes…. indicates likely seizure activity…this isn’t good."


When she was done speaking, I stood up on shaky legs, thanked her with glassy eyes, and walked out to the waiting room to deliver the message to my parents. That night I began to mourn the life that we had anticipated for our child and for our family.


A day later, we met with her neurosurgeon to review her MRI results. I braced myself for another meeting like we just had, but it was nothing like I expected. He flashed a warm smile and congratulated us on the birth of our beautiful girl. He commented that he loved her name and told us about his own two children. He shepherded us to a nearby computer and showed us images of her brain, explaining what the black, white, and gray blobs meant. His coat draped across his arm. Clearly he was about to head home, but he spent time with us to answer all of our questions without rushing us. Before he left, he gave us some advice that I still think about often.

“Treat her like you would any other child.”

Hearing this brought a renewed sense of hope for Brooklynn’s future.


Ride the Wave

If there is one thing I can say about this entire journey, it is that we are constantly riding the waves. There are high-highs followed by devastatingly low-lows. We have learned that we need to take it one day, one hour, at a time and remember that Brooklynn was created perfectly.


Here is an excerpt from a prayer I scribbled in her NICU notebook as I sat at her crib-side:

“Father, I pray for full and complete healing of Brooklynn’s brain. I know that You are abundantly able and I trust that You have a plan and design for Brooklynn’s life. I place all of her health and care in Your hands and I choose to fully trust in Your plan for her, even if you choose not to heal her. I praise You because You are good all the time. My joy comes from You and not from my circumstances. Amen.”


Make a Difference

If you feel so inclined, please consider sending a donation to the Maria Fareri Children’s Hospital. The NICU nurses, doctors, and support staff were truly wonderful. They were Brooklynn’s cheerleaders when we couldn’t be there. The nurses were our liaison between us and the doctors when we didn’t understand things. They encouraged us and loved our little girl. I will be forever grateful to these wonderful people.


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jennifer
jennifer
20 feb 2022

This is beautiful. I'm so happy there was better news following that first neurologist. ❤️

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