Fear of Leaving the NICU

April 20, 2016

My second son was born with a long list of medical complications and special needs that sent him to the NICU the night we was born. He became so sick that he was transferred from his delivery hospital to the NICU of our local Children’s hospital. He wasn’t discharged until he was two months old.

The days leading up to his discharge were more difficult for me than the length of his stay. I was scared to take him home.

Up to that point, we had witnessed him needing to be resuscitated three times. We had helped him recover through a difficult surgery. And we were in the beginning stages of adding several specialists to his care plan in attempt to understand his compromised body systems–in the NICU the specialists came to round on him rather than us having to haul ourselves to their offices and clinics.

NICU life was hard, especially because I had another son at home and my time was torn between the two. But as much as it was hard, it felt safer for my baby to be inpatient. Taking him home terrified me. I felt completely incapable in case of another emergency. I even asked one of the neonatologists if my baby could come back to the NICU (instead of going to the floor or PICU) if things didn’t work out so well at home. I was completely serious.

At that point he told me, “We aren’t going to send him home until you’re ready.”

Now if that were true, my son would probably still be in the NICU almost three years later, because I’m such a scaredy cat. To his credit the neonatologist and his team did formulate a plan and provided me with resources to help make the transition to life at home much less scary.

Here are some of the things that helped me tremendously in going home with my baby:

The nurses trained me on how to use my son’s home medical equipment. 

Many preemies and babies born with special needs go home from the NICU with medical equipment such as feeding tubes, suction equipment, and/or oxygen. Make sure you are trained in using the equipment your child needs at home. For me this meant the nurses trained me on how to use a feeding pump. First they showed me how. Then they let me do it myself, while they were right there to guide me through the process. They also provided me with handouts on all my son’s equipment so that I could refer to it later.

The NICU case manager gave me a list of follow-up information.

Often when you leave the NICU that isn’t the end of the medical care required for your baby. Make sure you know which doctors you need to follow-up with and when. The case manager of our NICU gave me a list of all my son’s specialists, their contact information, and when I needed to make a follow-up appointment. She also noted if an appointment was already scheduled so that I wouldn’t miss it. It was useful for me to have all of the information for my son’s many doctors all in one place.

The social worker gave me some resources for community support.

For many parents your baby’s medical team in the NICU also becomes a support team. It’s hard to leave those people behind and go home. The NICU social worker gave me some information on finding support groups within our community. They were parent groups, advocacy groups, and also information on state and federal services available to help with my son’s specific needs. This served as a starting place for my research of supporting his, and my, many needs.

The palliative care team talked me through worse case scenarios.

As much as it is exciting to take your new baby home from the hospital, it comes with fears not typically held my families who haven’t been side tracked by a NICU stay. Since I had witnessed my son unexpectedly go into respiratory distress, I feared that he would do it at home when I was alone caring for him or while I was sleeping. Our palliative care doctor wrote a letter which I sent to the police chief, fire chief, head of EMS, and the county medical examiner. The letter notified the first responders of the severity of our son’s medical condition in case there was an emergency at home, and even if my worst fear happened and he passed away at home. Since bringing my son home, we have needed to call EMS a handful of times, but fortunately our son has come through every emergency episode well. As hard as those conversations were with the palliative care team, it was helpful for me to feel prepared.

fear of leaving the NICU

Then, when it was finally time to say good-bye to our NICU family, they said, “Call if you have any questions,” and “Come back and visit.”

We did both.

Going home was scary but we did it. I can even say we did it well because we were equipped to handle whatever happened once we got home. You will be too. Wait until everyone agrees – medical staff and you – that it’s the right time. Ask all the questions you can think of and get all the resources in place.