*trigger warning* World Prematurity Day 2017
This Friday the 17th November 2017 is the annual “World Prematurity Day” where parents, family members and community members honour the tiny babies born too early. 15 million babies are born preterm and more than a million die as a result worldwide each year (WHO statistics). Some babies go on to make a full recovery, some have special needs and disabilities and some pass away. A baby born before “term”, or an EDD (estimated due date) of 38weeks’ gestation is referred to as premature or a preemie baby.
Neonatal Intensive Care Units
I like to use World Prematurity day to reflect on how lucky most of us are in this day and age to have access to modern medicine, pediatrics and other amazing people who care for preemie babies. Children born too early or ill are usually cared for in a NICU (neonatal intensive care), also known as SCBU (special care baby unit). In the United Kingdom, we have the NHS available and it doesn’t cost anything. In the US, families are often financially devastated by the cost of NICU care. In developing countries there might be little or no special care available*
We have always offered parents of the babies who don’t get to go home a piece of keepsake jewellery, free of charge. This is our pro bono work and you can read more about it here in our Pro Bono Baby Loss Jewellery page, which has information about preserving a little umbilical cord or placenta after your baby is born.
Today I want to tell you a little bit about Ayla’s stay in NICU, give you some ideas on creating a NICU keepsake of your own and also how you can help other families with little ones who were born prematurely.
Ayla’s Birth and NICU Stay
I’ll write Ayla’s full birth story some day and you can read about our breastfeeding journey here, but after a four day induction, ten hour labour and emergency caesarean they handed my large, pink, gorgeous baby to me in theatre while they were still operating on me. When you have a caesarean you feel like you’re tilted back and it was very surreal. Coupled with all the drugs in my system I felt disorientated but I knew something wasn’t right. Our baby wasn’t breathing properly and I felt a strong urge to pass her to a doctor; I shouted to everyone that was around me to take her and look at her. The pediatricians were fantastic and passed what they could to our midwife who kept reassuring me. I had The Viking holding my hand as tears streamed down onto the pillow and the anesthetist kept me awake. I remember feeling dizzy, which happened during Bastian’s caesarean too, and nauseous.
The room Ayla was born in
My whole world was collapsing as the seconds dragged on. She was whisked away to NICU and her daddy went with them. He came back half an hour later with some photos for me to look at, while I was trying to express a little colostrum. I’d been expressing antenatally, on specialist advice (you can read my blog about antenatal milk expression here), but I was so upset I didn’t get anything much. They had lots of syringes of my colostrum for her in the milk room. I’ll do a separate post about our breastfeeding journey in hospital as it’s very long.
Her father went back to see her a few hours later and got to give her a cuddle and have their photo taken together. It was beautiful and I was so jealous but something wasn’t right with me because I was in agony, more than I thought was right. I think the midwives thought I was stretching the truth a bit but the next day I passed out in the parents’ lounge in NICU and every time I wanted to visit her I’d have to wait for my meal or medicine or something and one time I got there just after she had been given formula, without my consent. The four days she was in intensive care were the worst of my life so I can’t imagine how it must be for parents there with premature babies. Ayla was the biggest baby there by far, at 8lb 6oz or 3.79kg and my chubby little fighter was strong and intrigued by the outside world.
The pediatrician told us we had to give her formula because I wasn’t responding to the pump; I had had a breast reduction, which you can read about here, and was stressed and ill myself. My poorly child was too big and strong to be eligible for milk from the bank. I don’t begrudge more fragile babies the milk, but I wish the milk bank had such a big supply that it was available for all babies who need it. I’ll do another post on formal versus informal milk sharing soon, too.
Premature Baby Keepsakes
You can keep small keepsakes in a memory box or a shadow frame with bits of white tack, along with a photo or poem perhaps
The first keepsake that nearly every parent treasures is their baby’s hospital bracelet, and sometimes their own too. I have learnt that the pen these are written with can fade in sunlight so if you keep it, I’d recommend wrapping the written part in ribbon and tying a little bow. The machine printed ones might be ok without.
Teddy Bear Monitors
We kept monitors, plasters, NG tubing, basically anything that was disposable. I must admit to rescuing a little foot splint because I didn’t mind that it had a little of my baby’s blood on it.
I even saved her first nappy (ok, not one she wore, just one from that pack). We wanted to use cloth but I had no way to wash them and we were already fighting with the pediatricians about Ayla’s feeding. I’ve heard that some NICU wards allow cloth nappies; if you know about this please let me know in the comments below! We kept her first outfit, which she was allowed on day 5 on a lower dependency room and it was lovely to see her dressed (even if it was a bit tight, she needed 0-3mo).
I didn’t think about keeping Ayla’s cord but when it came off I didn’t want to throw that away either. I still have a tiny bit left but I wear it in my ring every day. It’s part of the reason I started this company. When a baby’s cord drops off after a week or two, it’s dry enough to snip a bit off and use to make jewellery or other art and keepsakes. However, if your baby is early or is born sleeping you might want to ask a midwife to help you save some placenta or umbilical cord fresh. On my pro bono baby loss keepsake page I have instructions for this. Please freeze or pack in salt, because if you let them use formaldehyde it becomes too dangerous for a keepsake artist to handle and dehydrate. If in doubt, contact a local placenta encapsulation specialist who may be able to help.
Lock of Hair
If your baby has lots of hair you can keep a little tied with some cotton.
If you can think of any other ideas please let me know and I will add them to the list. Was your baby early? If you’d like to share your story please email me directly on firstname.lastname@example.org
*In 2016 I visited Makunduchi Hospital in Tanzania to bring some neonatal medical equipment and early baby clothes, and wondered how they support premature infants there or indeed more rural areas of the country. I’m hoping to travel through Kenya and western Tanzania next month (December 2017) to begin setting up a menstrual care programme and part of my research will be about post partum bleeding care. Please follow Project Kidogo on Facebook to find out more. We aren’t actively fundraising until I can find out more about the needs of the teens there but at some point we will be needing people who are good at sewing
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