Giving birth to Max and his extended critical care was our first time experiencing the healthcare system as patients. Emotions aside, it was fascinating to observe the healthcare system from that proximity because it gave us insight into what so many people deal with every day of their lives. We are blessed to be in good health, and for our families to be in good health. Before being hospitalized, I had been inside of a hospital patient room a total of 3 or 4 times in my entire life. My husband sees the inside of a hospital every day, but as a doctor. I had no idea what to expect from the hospital experience as the person being admitted, and every new intervention that first night felt like total sensory overload: blood pressure monitoring every 30 min, fetal heart monitoring for Max while he was still inside, three blown IV lines, steroid shots, blood draws, a catheter (which was the worst part by far)…. I felt like the subject of a science experiment. So much felt out of my control, and it felt like everything was happening TO me. My primary take away from our first 24 hours was: a hospital is no place to be, and certainly no place to die. I couldn’t wrap my head around why some people – including my husband – choose to work in such a setting every day.
A plan for care eventually started to form: try to keep Max inside until I reached 34 weeks, or one more week from the time I was admitted, at which point he’d be better off because major developmental milestones are achieved at 34 weeks like breathing and swallowing. Like any well-intentioned plan, that plan changed when I stopped responding to blood pressure medication and it became more risky for me to stay pregnant than it would be for Max to be born. That’s how we ended up with an emergency c-section at 33 weeks and 3 days pregnant.
Throughout all of the shifting plans, it was fascinating to watch the coordination of so many healthcare workers working together – or attempting to, at least – to provide care. A NICU nurse came down to speak to us about what to expect from Max’s NICU stay a day or so before he was born. After the c-section, a lactation consultant was sent to me to teach me how to pump. A social worker was sent to help us understand how to get Max on our insurance, and to know what signs to look out for with postpartum depression. A patient advocate from our insurance company called to walk us through our benefits and explain how the service approvals worked. All of this occurred while I was still being rounded on daily by various doctors and cared for around the clock by various nurses. The longer I spent in the hospital, the more I started to feel… lucky.
Lucky that we have health insurance that provides us access to this level of care. Lucky that we live in a place with adequate hospital facilities. Lucky that our employers allowed us the time we needed to focus on our family. Lucky that our parents could afford to fly to us within 24 hours of being hospitalized. Lucky we were treated with the conscious and subconscious respect that white privilege yields. Lucky to have inside knowledge of how the healthcare system works by way of many family members who are physicians and nurses. Lucky to have the instincts to know when to push back or ask more questions or acknowledge when we don’t know what we don’t know.
Most importantly, we were lucky to have Nurse Bobbie who was especially invested in Max’s care. While all of the nurses in the NICU were excellent, Bobbie took it upon herself to keep an extra eye on Max even when she wasn’t assigned to his service. When his prolonged swallowing challenges stalled, she went out of her way to talk to the speech pathologists about trying a different kind of slow-flow bottle nipple. When she noticed that Max refused certain bottles with milk that had been frozen and then thawed, she had us scald the milk ahead of time which breaks down the lipase, an enzyme that can make it taste bitter to some babies (of course my son is a picky eater – what a diva, Max!). When she felt like a ball was being dropped on Max’s care team or communication was lagging, she was a go-between for all of his providers to try to get the bottle-feeding-show on the road. If it weren’t for her sense of investment, initiative, and advocacy, who knows how long it would have taken Max to finally get released; he might still be in there learning how to bottle feed.
That’s why it was especially meaningful that Nurse Bobbie was the one who walked us through the discharge process when Max was finally deemed fit for life outside of the NICU. She helped us pack up all of his supplies and freebies from the hospital, printed off a 3-inch stack of discharge paperwork, and sat us down in a conference room to walk us through the key things we needed to know for caring for Max at home: how to detect a fever, why we should never fall asleep while feeding him, why we should never let him sleep in our bed, how to know when we need to take a break and care for ourselves. Over the course of our 40 days in the NICU and countless encounters with Bobbie, her final words of advice stand out to me the most:
“You already know exactly how to care for Max – you know what to do.
Trust your instincts.
… you will feel a level of exhaustion you never thought possible,
and sleep will never be the same again”.
After providing hours of care and going above and beyond to advocate for Max, this was the best gift Bobbie could have given us. She validated our experience as parents, and made us feel like our journey into parenthood, though different than we expected, was just as legitimate as any family who got to take their baby home right away. She reminded us with her words of wisdom that we do know what to do – that while Max had been in the hospital up until then, at home with us was exactly the best place for him to be.
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