By: Cristina Moreno, Penfield Children’s Center

The birth of your child and coming home from the hospital are supposed to be some of the happiest moments of your life. After spending months doing your best to create the perfect space for your baby, both in utero and at home, the possibility of not being able to take your child with you after you leave the hospital is the furthest thing from your mind. Although there are situations in which you know in advance that your pregnancy is high risk or that there are other factors that may increase the likelihood of your child needing to spend some time in the Neonatal Intensive Care Unit (NICU), a NICU stay often comes as a surprise to most parents and can be very stressful, especially if there were no warning signs. Learning that your child will have to remain in the hospital for an extended stay can be heartbreaking, and there will be no shortage of questions and concerns. Parenting itself is full of challenges, but being the parent of a child who is in the NICU feels like a daily battle between your desire to have your child at home and your knowledge that they are receiving the special care that they need, even if it is away from you.

I am the mother of a child who spent his first month in the NICU, so I am no stranger to the roller coaster ride of emotions that comes with having to go home while your child stays in the care of others. After starting to feel unwell early in my third trimester, I was found to have a condition which required me to give birth much earlier than expected. Although my son was developing normally and nowhere near ready to be born, there was no possible way I would be able to carry him to term and he was born three days after I was admitted to the hospital at 30 weeks.  While in the hospital before he was born, we were primed with loads of information that was at times comforting and at times terrifying. We were told what his chances of survival were, the possibility of intubation if he was not able to breathe on his own, and the possible developmental risks with having a child born so prematurely.

When the time came for me to go home, I felt guilty that I had to leave him behind and felt it was my fault for not being able to keep him safe. I spent the first few weeks driving back and forth from the hospital, arriving early in the morning and leaving late in the afternoon, sometimes even returning at night. With time, the days began to fall into a routine and I became comfortable with the nurses who cared for him. They knew what time I would arrive and that I always called in the middle of the night to check on how he was doing. I was ecstatic the first time we were told he might be going home soon. He had made great progress in the NICU and it seemed that he would be ready to go home at 35 weeks! However, with the excitement also came some anxiety. All of the time I had spent with him had been with the help and supervision of nurses. Here he had monitors that would let us know if he stopped breathing or if he was too cold, here he was weighed daily so we knew he was growing, but at home we would be alone to take care of the most precious and fragile being I had ever held. The NICU staff was very supportive and answered all of our questions, and I asked a lot of questions. I asked questions about anything and everything, from my biggest worries to the smallest details. The nurses never made me feel like I was a nuisance, even if every morning I would arrive with a new list of things I wanted to ask.

The days before coming home were busier than usual. My son needed a lot of different exams to be sure that he would be ready to leave, and we had to participate in several trainings to be sure that we would be able to care for him. Our first two months at home were very intense; we kept ourselves in almost complete isolation to be sure that he would not get sick, we documented every feeding, and we were so nervous that he would stop breathing in his sleep, so either my husband or I would be awake every hour of the day and night.  It felt like we called the NICU several times a day to ask about whether different things we observed were normal. It took some time, but now we feel comfortable going on outings, actually getting some sleep, and just being a regular family.

Spending time in the NICU is emotionally wearing, and the worries continue long after you go home. The NICU staff will tell you everything you need to know and will make sure you have your child’s first appointment scheduled with their pediatrician before leaving.  Take comfort in knowing that if the doctors are letting your child go home it is because they are ready, but be sure to ask any questions that you may have so that you can feel ready too. Here are a few that you may want to consider asking:

• Will my child need to have any tests done before going home? (Premature babies may receive a variety of tests depending on how early they were born. Common tests include eye exams, hearing tests and car seat tests to see how they tolerate spending time in a seated position.)

• What trainings do I need to complete before taking my baby home? (While their children are in the NICU, parents will learn how to give medications, take their temperature, and take care of their general hygiene, but before being discharged, they are often required to learn infant CPR and practice using any assistive devices their child may need such as feeding tubes, heart or respiratory monitors, oxygen, etc.)

• Will my child have or need any special equipment when we go home?

• What is his/her feeding schedule? How much and how often should I expect my child to eat?

• Will my child need fortified milk if they are exclusively breastfeeding? If so, how much? (Fortified milk is when a supplemental powder is added to breast milk to increase the calorie count and nutrients).

• Is there a number I can call to get in touch with a lactation consultant if we are having trouble with breastfeeding?

• Will they be going home with any medications? If so, what is the dosage and schedule? Do I mix it with their feeding or give it by itself? Where do I get their medications?

• How can I keep my child safe from getting sick? Is it ok to take him around other people?

• Is my child more susceptible to any illnesses or infections? What can I do to keep them safe?

• What is an appropriate range for my child’s temperature? When should I call their doctor?

• What vaccine schedule should my child follow? Are there additional immunizations they will need other than those typically given?

• What can I expect their breathing to sound like now? If it is irregular, how long can I expect that to continue?

• When should I schedule my child’s first appointment with his/her pediatrician?

• Are there any special pediatricians that you recommend for babies that have been in the NICU, or do they all receive the same training?

• Who should I call after my child has been discharged if we have a question or concern, the NICU or the pediatrician’s office?

• Will my child need any follow-up care other than their pediatrician? (This may include specialists, visiting nurses or therapists, or follow-up visits to the NICU to check their development as they get older.)

Being the parent of a child in the NICU can be scary, but knowing what questions to ask can help lessen the anxiety of bringing your baby home.

What steps have you taken to help manage your emotions when caring for a child in the NICU?