Coping with Prematurity After the NICU

Tips for parents transitioning home from the NICU.

Interview with Jeff Stimpson and Jill Stimpson by Allison Martin

What was the hardest change during the transition home from the hospital?

Finding ourselves overwhelmed with a demanding medical schedule: visits, medications, handling oxygen (and later the feeding pump). Jill wishes we had demanded 24-hour nursing the first week he was home. We didn't understand all the medications. We found ourselves not knowing as much as we needed to about oxygen. Our first hospital just cut us loose in December of 1998. Our second hospital, six months later, didn't send us home until they'd lined up all his medications on a table and made us go over the daily dosages, one by one. And THAT hospital was operating in the middle of the blackout!

Was it easy to find the help you needed in raising your child, and answering your questions?

It got easier as Alex got older and less medically intensive. Early Intervention had kicked in, and we usually had some therapists around. Jill found that Alex's first speech therapist was not particularly helpful, and was evasive in answering questions about communication and speech. In retrospect, we think that therapist must have felt Alex was a very poor communicator, and she should have referred him for more services for early signs of autism. But our special educator was terrific. Helpful and encouraging (without being false), and he taught Alex many things. His opinions continued to be critical right up to kindergarten, when he referred Alex to a class and teacher he happened to know and who he thought was right for Alex.

Our families weren't much help. Jill's mother was very ill and tired; Jeff's family lives far away. When Alex was about 3, we found a support group for parents of medically fragile (and often delayed) children and that was a help. We wish we'd found it, and others like it, earlier.

What advice would you have for parents of preemies?

Don't just trust your doctors. Find doctors you trust.

Find a helpful community - support group of other parents, helpful therapists and special educators, sympathetic family members, when possible - and use them. We wish we'd thanked our helpful therapists earlier and more generously. Jill recalls being "so out of it" that it didn't occur to her to give Barnes & Noble gift certificates at Christmas for a couple of years, but then we tried to make up for it (especially to the special education guy, who remains very special to us).

If you're feeling overwhelmed and frightened, reach out. Lean on doctors when possible and service coordinators. Insist on respite (medically trained, if necessary). Take time out to recharge. All the old tired advice (take a walk, or a nap; see a movie; go shopping) is true! If your baby comes home from the hospital and requires medical upkeep, it's vital to stay alert. If you're not getting enough rest, demand that service coordinators and doctors get you the help you need. Medical orders can be written for nursing; service coordinators can arrange for respite.

Jeff Stimpson is the father of a preemie, who is eventually diagnosed as autistic. He has written several humorous and touching books about his son.