Having a preterm baby or a sick baby in the ICU Nursery can be very overwhelming. It takes a minute to process that your baby is here…and even longer to process what questions and answers might help you he most. There are so many people, so many machines, lots of information, lots of noises and one tiny baby. Thought it may not feel like it ..you are the parent …and you are part of the medical team and you can advocate for your baby. Here are a few questions that might be helpful.. and hopefully provide light for the journey.

1. What are you most concerned about today for my baby? It seems like such a simple and obvious question but parents and physicians are often concerned about two very different things. Parents have often heard lots of scary numbers prior to the delivery of their baby…and they continue to wonder is my baby going to live? It’s helpful to ask those questions. Similarly, sometimes the medical team in efforts to protect families may not always clearly demonstrate to the family what the main concern is for the baby today…in this moment and that information can be invaluable for families.

2. What medications is my baby receiving? And Why? When premature babies are born…it’s often a life-threatening emergency. Many forms are signed. Many conditions explained it can be a blur. But once the dust settles…if the dust settles the treatment plan often changes. You may know what medicines your baby is receiving but what are the side effects of those medications? How long does the medical team expect the baby to be on those medications?

3. When can I hold my baby? Often and unfortunately premature babies are too sick, too small and have too much equipment to be held initially and this is understandable, as the main goal of the medical team is to the medical care of the infant. However, I do believe that more often than note, babies can be held….and often babies do fine…sometimes better than expected. I also think that at times the power of human touch…the power of parent to bond with their infant is really a rite of parenthood and we forget the days turn into weeks and the weeks turn into months and a mother or father has not been able to hold their child. Each case scenario must be weighed carefully but ask…and ask again. The answer may be no today but it may be yes tomorrow. These moments are priceless… and therapeutic for baby and especially parents. It can be frightening to hold a 1 pound baby but parents you can do it and your NICU staff will help you.

4. If this treatment does not work what are our other options? Premature babies can become very sick very quickly. The field has grown tremendously even in the last 5 years we are saving babies that we would not have been able to save 10 years ago. We are doing surgeries while infants are still in the womb. We are breastfeeding earlier. Parents are sometimes able to live in the NICU. We are putting less babies on the respiratory. All very exciting but even our best equipment our best medicines will at times fall short. If your baby is sick or becomes very unstable after being stable a having been stable, ask your physician or practitioner if there are other options. Often other options are not shared initially because they may be too risky or they may be too overwhelming for parents but alternatively often parents believe we offered everything when we may be able to offer more or they may believe we can offer more when in fact we have offered all we can. These are difficult conversations…but they are the basis for informed decision making and necessary for parents to be the best advocates.

5. Do you anticipate any long-term complications from this illness? Being able to survive the NICU is only a part of the battle. Many premature babies will go on to experience problems with lung disease requiring oxygen, problems with vision including blindness, problems with growth, problems with feeding and problems with over all developmental delay…even big preemies. Fortunately, there are many services in place to assist families with navigating the journey after leaving the neonatal intensive care unit. It is important to be aware of possible long-term complications so that in the event these problems arise a plan can be in place to make sure the child achieves his best potential.