Life After the NICU
How to continue helping NICU parents after baby comes home
by Kerrie McLouglin
You’d think that once a family got home with their neonatal intensive care unit (NICU) baby they would be home free, right? After all, their baby isn’t hooked up to multiple monitors, doesn’t have IVs sticking out of every part of its body, and the parents don’t have to travel to and from the hospital every day anymore. So why do the parents still seem so stressed out? Read on to find out about some special challenges of and how to take care of these special parents and babies.
Depending on how long their baby was in the NICU and how much care was involved, parents are now 100% responsible for their baby’s care. This may involve dealing with oxygen equipment, feeding tubes, medicines and more. This might mean the parents have to intricately plan any outings, and they may get cabin fever. The mother is dealing with healing and hormones from giving birth, and now she has more stressors, like how to keep track of all the post-NICU instructions, as well as dealing with everything at home. Other stressors include older children, chores, meals, visitors, follow-up medical visits, how to pay all the medical bills, the possibility of returning to work, etc.
Parents of NICU babies have come close to experiencing the death of a child, one of the most difficult things a person can go through, so being sensitive to that fact can go a long way with the parents. Dr. Kristie McNealy, mother of a preemie, shared on her blog KristieMcNealy.com, “In between and long after our respiratory issues improved, there were other x-rays, scans and procedures to deal with, development to monitor, and sensory issues to help her deal with. There seemed like there was always something to worry about, and that was something people on the outside of our family didn’t understand very well. After all, she looked healthy, and people didn’t get much past evaluating her in terms of how well she had caught up in growth before determining that I was both over protective and at least a little neurotic.”
Regarding the sensitivity of mothers specifically, Dr. Shawn Willson, Director of Women’s Mental Health at Overland Park Regional Medical Center and CEO of The Purple Door says, “Having your child in the NICU is nothing less than terrifying. Parents are thrown into a state of ‘survival’ which pushes the gas pedal for adrenaline … this adrenaline usually continues in about 35% of the parents once they leave the NICU but often goes unappreciated. This continued adrenaline impairs the parent and is referenced clinically as a diagnosis of Acute Stress Disorder (2 days to 4 weeks) or Post Traumatic Stress Disorder (PTSD) (greater than three months).” Of course it is imperative that a mother seek professional help if she finds herself experiencing this.
Jennifer G. of Dallas, Texas, shares her personal experience that she hopes will help friends and family members of NICU parents try to understand: “When our son was born 10 weeks early … we were beyond scared. He was our first child, so we had no benchmark to compare to the situation at hand. More importantly none of our family or friends had a benchmark for a premature child versus a ‘normal child’ so they just didn’t understand our new reality. Most people felt we were constantly overreacting to simple things like hand washing, covering coughs, or asking people not to bring their young children to the hospital or our house when we got home. That never stopped me from standing my ground though because those same people did not sit in a large NICU unit with 10 tiny baby beds, where newborns were tied to hundreds of wires, monitors, breathing apparatus, and more. They did not rock their baby as they listened to the monitor down the way screech a warning, then be shuffled out of the unit while the nurses dealt with a child who would not see the start of another day.”
Jennifer also shares something she likes to call ‘support fatigue’. “Everyone is quick to come to your aid, to bring meals, to call and check on you, etc., but when your issue lasts longer than a funeral and typical ‘mourning period’ (about a week) or birth and ‘adjustment period’ (again, about one week), it’s easy to be forgotten. It’s not that anyone has stopped loving you and your family, but their priorities have to be with their own family. Their own life has to go on .…”
If you’d like to help these NICU families, keep the help, comfort meals and other forms of support coming as much as you can. Just as when the baby was in the NICU, keep the Care Calendar active and make sure as many people as possible know about it. Offer to watch the baby while the parents run out for a cup of coffee. Expect them to give you many instructions for Baby’s care; just don’t expect them to be gone long!
Treat a new NICU Mom very carefully. We all know having a baby takes a toll on life, sleep, body, mind and more, so having been through a NICU experience is like post-childbirth on Red Bull! Don’t be offended if the parents ask you not to visit yet or to wash your hands right after coming into their home. They have just been through a life-changing experience and certainly don’t want to return to the NICU because someone with a cold gave it to their baby. A listening ear is helpful at this point, as well, and can go a long way toward relieving some of the parents’ stress (yes, dads get stressed, too; they just tend to internalize it).
This article is a follow up to 12 Ways to Support a Friend with a NICU Baby