I get a lot of messages from friends and family of people who have been thrust into the world of premature birth asking how they can support the ones they love and what to buy as welcome to the world gifts. The truth is the situation for the parents is alien, frightening, uncertain and isolating and so support from the people they love is paramount. However, it has got me thinking about what would have made life a little easier for us four years ago and what would have helped us to know people were there. Hopefully this list helps.
- Regular messages
I know it must be very difficult for those surrounding parents of preemies and in all honesty you won’t ever be able to fully understand no matter how much you try or want to but, never stop communicating. Don’t think that because you can’t understand or you feel unable to help that there is no point. The most important thing for parents living through NICU is to feel that they haven’t been abandoned, that people want to know how their child is progressing, how they are feeling and that the situation isn’t awkward. It doesn’t matter if you don’t know what to say, simply messaging to check in, to offer your support and love or to listen when the parents need to vent will mean more than you know.
- Don’t ask when they will come home
The only things not to ask are questions the parents will have no answers to. So much surrounding premature birth is uncertain and to be faced with answering the same questions you have no control over again and again is draining and painful. The main things not to ask are; “when will baby come home? When will they feed without a tube? When can you hold them? Will they be OK? Will there be any long term issues?” The answers to all of these questions are as unknown to the parents as they are to you and having to say “we don’t know, we aren’t sure, we won’t know for a long time” is a reminder of the lack of control that they really don’t need.
- Offer transport to and from hospital
Often parents can be restricted on how often they can visit their child due to the practicalities of getting to and from the hospital, either due to distance, other children, no transport or the inability to drive following a c-section. Being apart from your child is torture, having to walk out day after day and leave them is devastating so if you are able to step in and provide transport to or from the hospital this would provide a fantastic lifeline and support to your loved one.
- Cook hot meals
Living in and out of the hospital isn’t healthy for anyone, you spend hours on end at the side of your child, missing hot meal after hot meal whilst also trying to express and often recovering from major. Find out when your loved ones will be home and pop round with home cooked meals, they will be so very gratefully received. Also divide lasagne, curries, stews, pasta dishes into small meal for one trays which can be frozen and then taken to the hospital, they will be a welcome break from either no food or cold sandwiches.
- Offer childcare
If you are able to and your loved ones would be happy for you to do so, offer to look after their other children so that they are able to visit their newborn together or just more often. Logistics when you are spending weeks and even months split between running a home and caring for older children whilst also adapting to life as a preemie parent, worrying about the health of your baby every second you are away from them is stressful, anything practical you can do to help will be remembered for a very long time and is the best way to show you are truly there.
- A journal
When your baby is busy growing big and strong in an incubator you spend hour upon hour sat beside them, writing and tracking their progress can be a lifesaving outlet. A simple journal which allows your loved one to get their thoughts and fears out of them and onto paper, to write down the dates and times small milestones were met, the first only an NICU parent would understand and the little things which help them get through another day, is a wonderful gift.
- Preemie milestone cards
As a preemie parent you feel that you miss out on so much, you miss out on skin to skin with your baby at birth, the first weeks or months being their entire world safe at home, cuddles are delayed, their first bath, feeding them, so much is missed or delayed and you feel detached from what feels like everyone else and what a ‘normal’ newborn experience is. There are now Preemie Milestone Cards which allow preemie parents to mark the unique milestones a premature baby achieves including coming off oxygen support, stopping needing NG tube feeds, reaching 2lbs, 3lbs etc. The usual baby milestone cards are not appropriate for preemies so the new ones which are dedicated to them are wonderful, they allow parents to feel involved, able to track and celebrate massive achievements and milestones and a little less alienated.
Blankets, blankets and more blankets. For the first few days or weeks the baby will probably only wear a nappy and may be under lights to help with jaundice, however as they grow and become stronger they will go into clothes but maintaining their temperature will be a challenge for a long time. Even once home our 31 weekers required layer upon layer of blankets to remain warm and settled.
- Cot nests and swaddling blankets
Preemies are notoriously unsettled and noisy sleepers. Once home it can be difficult to get the baby settled and they will startle easily during the night, baby nests and swaddling blankets are a great way to help make the baby feel secure and ease their feeling of being exposed in this big alien world.
- Don’t touch badges
Once out of hospital the world can be a dangerous place for a preemie, even those born at later gestational ages can struggle with weaker lungs and immune systems making common germs potentially life threatening. People naturally want to coo over newborns, especially tiny ones and they often don’t understand that the germs on their hands can harm the baby, to help prevent awkward conversations with strangers and to protect premature babies in the big wide world, there are now business who sell ‘Stop Don’t Touch’ badges for car seats and prams.
- Preemie birth cards
The wonderful Print My Smile have designed a range of congratulations cards dedicated to preemie parents. No baby feet or mother cuddling babies, just lovely messages and designs which are appropriate for parents who are living life separated from their newborn unsure of when it will end.
- Preemie baby clothes and nappies
Finally all parents love receiving outfits for their newborn and why would preemie parents be any different. Perhaps don’t give these when baby is just born but instead once you know they have been allowed to start wearing clothes. Many of the big retailers do preemie sizes now including Next and Tesco, you are best to order online though as sizes in store are limited. Also, you can never have enough nappies, especially if your loved one has had multiples, get stocking up on those micro preemie and preemie nappies, the practical gifts are always the best.