By: Cristina Moreno, Penfield Children’s Center

As I mentioned in my earlier post, the time that my son spent in the NICU was very emotional in many different ways. There were days that I felt overjoyed to hear the progress he was making, like the day he was able to eat without having to use a feeding tube for the first time, and other times when I felt completely helpless and unable to protect him, such as the days we had to wait and see whether he would be able to handle being outside of the incubator. Although it was a normal part of the process and we were told to expect that he might have to spend more time in his incubator if he was unable to regulate his own temperature, the possibility of coming out and then going back in felt like we were taking steps backwards and made our discharge date feel like it was drifting further away.

Although each family’s experience is unique, there are some feelings and concerns that many NICU parents share, particularly the worries about how others will interact with the baby once they get home, or whether they will feel offended if they are asked to follow special rules. I became very emotional when I was told of all of the people who wanted to visit the baby, not because I did not appreciate their enthusiasm and concern, but because I knew how vulnerable my child was and it was suddenly very overwhelming to think about the potential risks that could occur from something as simple as a visit from well-meaning family member or friend. We limited who could visit while our son was in the hospital and asked most people to wait until he was at home, but knowing that some people did not fully understand why we were being so cautious only added to the stress. These are some of the things I wish people knew about having a child who just came home from the NICU in order to make the early days at home a little easier on the parents:

Think before you visit. Before you decide to stop by, consider if you have been feeling even the slightest bit unwell. While some sneezes or a little cough may not seem like much to worry about, a baby who has been in the NICU will likely have a compromised or immature immune system, and what may seem like a common cold to you and me may send them right back to the hospital. Also, please consider visiting another day if there is no one available to stay home with your children. On top of the fact that kids are more likely to be carrying germs because of school or day care, they may not be old enough to understand that they should not touch the baby’s hands or face. It can also be dangerous if the baby has special equipment or monitors that young children might trip on or want to play with.

Please call before you stop by. It is always courteous to let parents know ahead of time that you would like to stop in for a visit. While people do not expect new parents to have a spotless house or look their best all of the time, it is still nice to give them the opportunity to freshen up a little. It would also be a good idea to ask the parents whether they would prefer if you did not ring the doorbell to avoid startling a sleeping baby. My son was used to a feeding and sleep schedule from when he was in the NICU and any interruptions in his sleep would make him fussy for hours after. Eventually he grew out of needing such a strict schedule, but the routine was very important for him at the beginning, so it was much easier if I could let people know when he would likely be awake so that they could come for a visit then.

Know that there is a reason parents are a little overprotective. Again, the risk of our child being hospitalized if he caught a cold or flu was very real, so one of the first things we bought when we knew our son would be coming home was a giant bottle of hand sanitizer. While he was in the NICU, we would wash our hands before each visit and after diaper changes, and use hand sanitizer often throughout. My hands looked like they belonged to a 90 year old woman by the time he left the hospital. NICU parents do their best every day to make sure their babies do not get sick, sometimes that even means holding back from giving them kisses or getting too close if they are not feeling well themselves. Do not be offended if you are asked to wash your hands, use hand sanitizer, or refrain from putting your face too close to the baby, there will be plenty of time for that later. The smell and chemicals in tobacco smoke can also be very aggravating for babies, especially those who have been in the NICU, so please do not step out to smoke during your visit because it can be carried back in through your clothes.

Understand that we might miss birthdays, holidays, or other special events for a while. We had our holiday plans all figured out and ready, that was until my son was born in November two months earlier than expected. That year we missed our usual Thanksgiving because the baby was in the NICU and considered staying home for Christmas as well since he had only left the hospital the week before. We have been fortunate in the sense that our son has developed very well, but we still spent most of the winter and spring at home and avoided taking him out in public. Some children that have spent time in the NICU may need to stay home and away from groups of people for many months, so be understanding and know that the family would be there if they could.

Finally, also remember that the parents may have been waiting weeks or even months to be able to hold their child and spend time as a family. Be considerate of their desire to have their child close and be patient if they do not immediately offer to let you hold them, you will get your fill of baby smell soon enough.

How have you shown support to a parent whose child was in the NICU? If you are the parent of a child or children who were in the NICU, what would you like others to consider when they visit?

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