It can be difficult for people to know what the right things to say or do when a family welcome a baby prematurely. I must admit that before we had William I was pretty clueless about the ins and outs of NICU life and even though I have known of couples who have had a baby pre-term it felt as though if I asked lots of questions I may have seemed as though I was prying and I didn’t want to offend by asking the wrong thing. Now I have been in those shoes I know what a scary, lonely time it can be and for me, I found talking helped. I think we can all be a little too polite at times and perhaps if we spoke about situations a little more we could all offer and receive more help and support.
So, what does a family with a baby in NICU need and how can you provide that support?
Messages and Phone Calls
Sitting in NICU all day with few people to talk to and with your mind full of worry can begin to take its toll. Receiving text messages provides a little light relief from the seriousness of the situation. Ask the person how they are doing, how the baby is, provide some reassurance and let them know you are there for them. If they don’t want to talk at that moment you may not get a reply but please remember that every day is different and don’t take the radio silence as that they don’t want to hear from you again, they will want to. Time feels very different in there, it can be like living in limbo and answering a text may go straight out of someone’s mind. Just the fact that you make contact will help immensely.
If they need to offload just let them. Listen to their concerns, to the stories and the information and take it in. They may not require anything back but just a friendly ear to take the time to hear them.
“I really appreciated friends who listened but didn’t try to ‘fix’ things.”
Be a Shoulder to Cry On
Be that person that they can go to for a cry or a cuddle. When the emotions build up it can come out in one huge crying session and having somebody there to comfort you can mean a lot.
“I was so grateful to my one friend who tried not to silver line everything for me. Instead of telling me ‘it will be ok’ she instead empathised with me. Having someone validate my feelings and allow me to ask those ‘what if?’ questions allowed me to deal with my son’s brain damage a lot more effectively.”
Bring NICU Essentials
In my view, the essentials for any parent spending a lot of time in the NICU are hand cream, bottles of water, snacks, sweets, lip balm, a notebook, tissues and anything else that your family member/friend may enjoy or benefit from. Take into account that the ward is always very warm, the days can feel very long, it is emotional and draining and they will have to leave to buy refreshments.
Bring Them Meals
Just as you would offer to help when a new baby comes home please do offer this help even though the baby is in the hospital. Or don’t even offer it, just turn up and surprise them with a batch of meals which can be frozen for the week. With so much time spent at the hospital, juggling other duties in life, taking care of other children, meals can go out the window. I know we were grabbing takeaways some nights and I wanted quick meals so I could get back up to the hospital. It may seem like a little thing but it can mean so much during difficult times.
“My brother in law turned up on our doorstep one Sunday afternoon with 2 meals for us. He completely surprised us and it was such a lovely gesture. It meant that we could just relax a little more and spend more time as a family rather than thinking about what food we had in, what to make and taking the time to cook it.”
Help With Other Children
If the family already have other children they may find it tough to balance their needs with those of the new baby’s. Daily life still needs to go on, children still need to attend school, nursery, clubs etc. and by offering to help with childcare, dropping them off/collecting them you will be taking a load off for the parents.
“I was so grateful to my parents for taking over with our three children when our youngest was in neonatal. It took the pressure off me wanting to tear myself in two and I could be with our son where he needed me.”
“Currently being in this situation with my preemie twins in NICU, I would love any offer of help whatsoever. The first couple of days my parents were visiting so helped out a bit with our other children, but once they returned home (they live the other side of the country), we’ve been on our own & literally couldn’t manage without our teenage daughter helping us out so much, which feels really unfair on her but we literally have no choice.”
Help With Pets
Some families may have pets at home who also need some care and looking after. Offering up your time to feed a cat, budgie, hamster or walking the dog will mean that the parents won’t have to return from the hospital to do so.
Cleaning and Washing
The housework is the last thing on their priority list and chores do begin to mount up. Again, the offer would probably be greatly received and will lighten the load by taking less important issues off of their minds.
Not all hospitals will be local to the family and not all will offer free parking. Both of which can mount up unforeseen costs not to mention the tiredness the parents will be feeling from the trips. Our hospital is only 5 minutes from us but the small trips back and forth became draining especially on the more emotional days. If someone can drop them off and pick them up it may help them both physically and financially.
“My twins were born by emergency C-section at 32 weeks. My friends and family were fantastic chauffeurs once I was home without my boys, making sure I was with them every day & giving me some company and sanity”
A premature or poorly newborn is very different to a healthy full-term newborn. The unit will have rules about touch, visits and illnesses. In our case the unit only allowed one of us to touch William during the first few days, after that and until he left it was only myself, my husband and our first son who were permitted. It can be very tough when the baby makes progress and is out of the incubator but premature babies can find touch very difficult due to their sensitive skin. They also need to sleep and rest as much as they can in order for them to grow and passing them around family members for cuddles will actually inhibit their progress.
The unit was also strict on visiting times, one hour at lunch and one hour at tea times. This had to be with one of the parents and only 2 at a time at the bedside. Anyone who had been ill in any way could not visit for 48 hours after the illness had passed. These rules are there for the safety of all the babies in the neonatal ward and you will find that these are the same in most hospitals. If visiting isn’t allowed this has to be accepted for whatever reason there may be. Don’t question them on this, don’t take offence if you cannot visit and don’t turn up hoping you will be able to bend the rules. The parents still need the support but the baby’s health is what needs to come first.
“Having had two prem babies- one very prem and sadly who isn’t with us now we were unfortunately not supported very well by friends and family.
However, the nurses were amazing and were always really welcoming and used to help occupy our eldest daughter who at the time of her brother being born had just turned 5. Second time around there our hospital limited visiting to parents only and so at weekends we had to take it in turns! ”
Understanding of what medical procedures are taking place will also show that you are supporting the family. NICU can be full of scary and upsetting moments from the moment the baby enters it, from breathing machines to cannulas being inserted, monitors binging, medicines being administered and so much more. If you can grasp what is going on and why from the parents you can provide the support they need at that time.
“Please don’t think a feeding tube is ‘convenient’ or that ‘it gives you chance to recover whilst the nurses look after her”
Some families will require time and space to process what is happening, even more so if they receive bad news. As I said above, do make contact but if they say they need some quiet time to just be a family and take everything in just accept that this is what they need for the time being. But always be ready waiting in the wings for when they need that shoulder to cry on again.
“My son was born at 28wks and to be honest the best thing that people did for us was to give us that space we needed. Of course, family came to visit him but some days we would have a break from going up (nurses advice) and family just let us have that space and time to just get things sorted.”
It is a time that could go on for weeks or even months and the emotional strains can really affect those involved. Having a group of close family and friends to help can make a world of difference.