Unrealistic expectations
By the time Caleb was ready to come home from the NICU I felt completely prepared to care for him. After 4 weeks practicing his care in the NICU under the supervision of his nurses, I was appropriately confident. In this sense, having medical knowledge and training definitely helped me. I knew what questions to ask and what to be prepared for. I was ready to take my baby home and be a full time caregiver. However, I had no idea how unprepared I was to take him home and be a mother.
In order to bring Caleb home, we had to demonstrate proficiency in all of his care. This included bottle feeding him in a certain position at a slow pace to prevent aspiration, tube feeding him using a feeding pump, fortifying his breast milk with extra calories, administering medications via his feeding tube, replacing his feeding tube if and when it came out, checking his blood sugar twice a day, and being prepared for emergency administration of glucose gel and glucagon if needed for hypoglycemia. I had all the instructions written out, color coded, with emergency contact numbers highlighted and a daily schedule mapped out. I didn’t realize it at the time, but my brain was in healthcare provider mode. I was thinking about Caleb as a patient I needed to take care of.
Everything changed the second we got home and walked in the door with him. I realized how unprepared I was for the mental and emotional load that would come along with being a mother to a baby with medical needs. I learned how to place his NG tube and check that it was in the correct position because I had to in order to take my baby home. Doing this while he was in the NICU was one thing, but doing it by myself at home in his nursery was quite another. I would play music loudly to try and drown out the thoughts in my head about how traumatic it was to have to put a tube up my baby’s nose, down to his stomach while he gagged.
Doing heel sticks to check his blood sugar was one of the worst things I had to do at home. Trying to squeeze enough blood out of the tiny prick to get a reading, knowing that if I didn’t get enough blood this time then I was going to have to stick him again, was so stressful. The feeling of complete failure when I didn’t get enough blood and had to stick him again. His poor bruised little feet.
Nothing prepared me for this. The soul crushing feeling when his tube came out and I knew I would have to place it again within just a few hours. I placed his NG tube over 40 times in the 4 months that he was home with it. It never got easier. I never got used to it. But, I did it.
I wish that someone had acknowledged that this was a lot for a new parent to take responsibility for. Taking home a newborn with a toddler sibling at home is challenging as is. Mom has to physically heal postpartum. Dad takes minimal time off work, saving it to take later after mom goes back. Tot needs extra attention. No one is sleeping. Now add in managing a feeding tube, follow-up appointments, a glucometer, and medications. The expectations are extraordinarily high for new parents managing a baby with medical challenges, and as medical providers I don’t think we stop and recognize that enough.
So Mama, this is not going to be easy. You will get through it. And when you look back, you will have no idea how you did it. There’s magic in being a medical mama, something no one else can see or understand that gets you through it. I like to think of the other mamas who have walked in my shoes and made it to the other side lifting me up on this journey.
