by Parijat Deshpande

I will never forget the day my son came home from the NICU. It was a Monday, the day after his due date, and all we were waiting for was one last great blood test. At 10am, the nurse called. “He’s ready for you to come get him.” I will never forget those words and how they sounded.

After 109 days in the hospital, we were bringing our son home!

Preparing for Homecoming

From the first day your baby was admitted to the NICU, you were probably counting down the days until discharge. You couldn’t wait to get out of the hospital and never look back! I definitely remember feeling that way!

However, as discharge day approaches, you may find yourself feeling overwhelmed. You may notice unexpected feelings of anxiety and fear when you think of leaving the familiarity and constant vigilance of the NICU. You may wonder, “Can I actually do this at home by myself?”

You are certainly not alone in feeling this way.

There are several things you can do prior to discharge that will ensure a smooth transition from the hospital to bringing your preemie home.

1. Plan a consultation. Schedule a meeting with your preemie’s entire medical care team prior to discharge. Make sure that you have a clear understanding of past and current medical diagnoses as well as what monitors and medications your baby will go home with. Review with the team which specialists your baby will have to follow up with after-discharge and have a clear plan of how soon after discharge these appointments should be scheduled. If it will help, ask for this discharge plan in writing from the NICU team.

2. Find the best pediatrician for your family. Not every pediatrician has experience with preterm infants. Interview pediatricians in your area to find one who is experienced in treating patients like your preemie. Ask them how many patients of your child’s gestational age and with your child’s medical complications they see every year. Also, find out if they have a referral network with specialists your baby will need. Most importantly, make sure they are supportive of your parenting style and that you feel comfortable with them.

3. Prepare your friends and family. After waiting for days, weeks or months to bring your baby home, your friends and family will be excited for you! However, a preemie’s homecoming requires a few considerations. Primarily, preemies, especially those with chronic lung disease and those who go home on oxygen, have weaker lungs than non-preemie babies. ((Dana Wechsler Linden, Emma Trenti Paroli, and Mia Wechsler Doron, Preemies (New York: Simon & Schuster, 2010), 384.)) Thus, they should not be exposed to sick people, smoke, aerosol sprays or paint fumes. Also, preemies can become overstimulated more quickly than full-term babies so you may want to hold off on throwing a big homecoming party and instead have a couple of healthy visitors at a time to meet your new bundle of joy at home.

4. Build your confidence. As your time in the NICU comes to an end, become intimately involved in all parts of the baby’s care in the hospital. Ask the nurses if you can do all of the cares including giving medications, changing, feeding, and managing the monitors and equipment that you will go home with. You should also schedule a CPR class a few days prior to discharge. This will help you build confidence that you can handle an emergency at home should it arise.

5. Write it down. Between doctors’ appointments, therapy appointments and medication schedules you may find your head spinning. Stay on top of your baby’s care by creating a binder or an electronic record to keep notes after each appointment, chart when you have given medications or offered treatments.

6. Expect to miss the NICU. Yes, I really mean that! While you were in the NICU, you may have been imagining the day your baby could finally be home with you. But you may not have been imagining the tremendous responsibility and stress that comes with caring for a baby with continuing medical needs at home. You may miss having the round-the-clock source of information or the relief knowing that medical professionals also had an eye on your baby at all times. In addition, you may miss the social aspect of the NICU, speaking with nurses, doctors and other preemie parents with whom you had become familiar. Missing the NICU and wishing you could go back for support is completely normal!

7. Know the signs of PTSD. For many parents, experiencing a preterm birth and having their baby in the NICU can be stressful enough to develop symptoms of post-traumatic stress disorder (PTSD). Flashbacks, avoidance of places, people or things that remind you of that scary time or waking up in the middle of the night from a nightmare are common experiences for most preemie parents. If those symptoms become pervasive and affect your daily routine or your ability to sleep or impact your mood, you may be experiencing PTSD. If you think this is happening, please seek the help of a mental health professional.

8. Don’t forget you. After spending time in the NICU, bringing home a small baby with medical complications can be exhausting. With appointments and medications to keep track of, on top of the normal fatigue from having a newborn at home, preemie parents can get burned out very quickly. Take turns with your partner to care for your baby while you take a break. Get some fresh air, take a long bath or meet up with a friend. You are not being selfish. You are being a good parent by re-energizing yourself to care for your new baby.

9. Trust your instinct. Despite all of the medical professionals who were involved in your baby’s life until this point, you have been the one constant by your baby’s side since the day s/he was born. You know your baby more than you think so trust yourself that you already know a few of your baby’s cues and that you will know what to do if something happens. Also, the hospital will not discharge the baby until they feel the baby is ready to go home and the parents are ready to take the baby home!

10. Give yourself permission to feel however you feel. It is ok if homecoming is not a blissfully happy moment filled only with joy. You have been holding on to anxiety leading up to this day and imagining a life caring for your baby all by yourself can bring up even more nerves. Additionally, once you are home and you settle into your new life, it is common to feel a wide range of emotions that you may not have let yourself feel in the NICU. Emotions such as guilt, sadness, anger, frustration, fear and grief are all very common feelings for preemie parents after the baby comes home. Reach out to other preemie parents or a professional to help you cope with the mix of emotions.

You can do this!

Homecoming day is an amazing day for you and your family. Taking time to prepare for this new phase of parenting at home can ease that transition on yourself, your baby and other family members. Remember that you are all learning so allow time for everyone to adjust having the baby at home. Rest assured that you are also building a new team of medical support for your baby and there are many resources available to connect with other preemie parents or professionals to guide you as you settle into life as a family at home.