CREATING A NICU ROUTINE — FALESHA A. JOHNSON

I tried my best those first few weeks to cope with my postpartum depression, grieve the motherhood journey I felt I had lost, and handle this new lifestyle of being a NICU mom. The pace of the hospital and the introduction of new doctors daily was overwhelming, and this is how weeks went.

My days started with pumping at midnight, 4:00 am, 7:00 am, 10:00 am then I would shower, eat breakfast on the go, and head to the hospital. Rome and I were able to visit together for the first six weeks of her life. When we did, we would sit there, cramped her 100 sq ft room trying to love on our daughter, and take in all of her medical needs. NICU life was a rollercoaster; each day, we did not know which ride we were getting on. The constants changes made it hard for me to work on my mental. The 10 hours days quickly wore Rome and I out, and if we were going to handle what was in front of us, we would need to find a routine to bring some normalcy to our new life. Before I could get to that point, I had to learn how things worked. We didn’t quite get an onboarding session for being in the NICU. Which we needed, we would get pieces of information from one doctor or social worker, and then the next week it would be a new face. Consistency is very rare in any hospital, so each day we walked in, and we learned something new.

Our first step was understanding who was who! We had so many doctors coming into her room daily that we lost count. Each doctor had their job, the resident gave us an update on cares, but we quickly learned that they weren’t the ones to make changes to her care plan, that was the attending doctor. Then you have the doctors that handle her surgeries. Caliyah’s team is under the Craniofacial team, which means she has an ENT ( Ear, Nose, and Throat) doctor, neurosurgeon, plastic surgeon, ophthalmology, audiology, pulmonology, genetics counseling, physical therapist, and an evolving door of pediatricians. Just to give you a glimpse of this life, those are only the teams; each team has 5+ doctors! It got to the point where I had a notebook to write down names and their medical focus. One pediatrician even gave me a handout with headshots; she was so thoughtful. She saw me struggling with the new faces and gave me a resource to take one thing off my plate.

After weeks of notes, my notebook was full, and I quickly learned the complex needs of my little one. We waited the first two weeks for Caliyah’s genetic testing to return so we could fully understand what strand of Pfeiffer Syndrome she had. When the results came in, our doctor sat us down and shared that Caliyah not only had PS, but she had a rare strand of it, called W290C. This strand comes with its unique complications, such as severe craniosynostosis, hydrocephalus, the fusion of various joints, and body anomalies. The doctor told us that this strand previously had poor results, mainly because they didn’t have much research on it. I remember the doctor advising us not to google this strand because it would only stress us out. He went on to let us know that over the last five years, they’ve improved their surgeries timelines and now find great results on kids with W290c. When people ask what type (Type I, Type II, Type III) she has, understand that she has a hybrid of them, and for that reason, our doctors don’t put her in a typical box. He shared that his work was highly sought after and that he travels across the country to consult on kids like Caliyah. No matter how many obstacles were thrown our way, we kept getting signs that things would be okay. The fact that Caliyah had this rare syndrome, but in all the places in the world, she was in the best hospital for her syndrome was a miracle on its own.

Our doctor went on to share the surgeries Caliyah would need in her first two years of life. She would need three skull surgeries, two of them would take strips of bone out to allow her brain room to grow and release the pressure to limit the build-up of excess fluid. One was for a VP shunt that would place a device in her brain to drain the excess cerebrospinal fluid from her brain to the abdominal cavity. Her body, unlike others, was not naturally adsorbing the fluid; instead, it was sitting on her brain, which is called hydrocephalus. She would need a most likely need for a tracheostomy surgery to allow her to breathe comfortably. The list goes on; the complexity of her needs was so overwhelming. My baby having to go under so many times seemed too unbearable but little did I know it would soon become the norm for Rome and I. Before we could start all her surgeries, Caliyah needed to get bigger, 3.0 kilos to be exact, which was 7lbs. She was born at 6 lbs 3oz, and it felt like it took forever to get those 13oz on her.

One of the things that brought me peace was reading to Caliyah. It was our special bonding moment and it made forget about all the hospital madness.

As we waited for her to gain weight, we threw ourselves into her cares, and we slowly got a routine started. Caring for Caliyah is what gradually allowed hospital life to be bearable. This is what allowed me to feel like a mom. We started skin to skin on day two of Caliyah’s life, and we continued it for weeks. We both rotated each day with two hours of holding, and it was the best part of our days. Whenever she needed a diaper changed, we jumped to the opportunity, never been so excited to change a dirty diaper, but it allowed us to connect with her. One day I started to read her a book, and it quickly became our thing, and every day after that, we did. Caliyah would be so locked on the pictures and me; it was such a special bonding moment for us. One visit would bring a visit from the resident to get her daily vitals and progress; we would see our nurse in her room 5+ times, and then to wrap it up a visit from her craniofacial pediatrician to give us an update on her long term needs. After her cares, doctor visits, reading, kangaroo time, it would easily be 3:00 pm, and we would try to hit the road before work traffic hit. Many days we just couldn’t bear to leave so we would be there until 6:00 pm and home by 7:00 pm. I started to take a day or two throughout the week and stay home to rest, reset, and clear my head. My self-care those days looked more like just getting 8hrs of sleep, making sure I was eating three meals a day and trying not to miss a pumping session. It might sound simple, but eating and sleeping, things that we should automatically do were not high on my priority list. Well, little did I know that I would need that energy as one of the hardest weeks to date of hospital life was approaching.