The Reality of the NICU Journey
Four and a half years ago, I found out I was pregnant. This was the second time, I had to have surgery 2 months before as I lost the baby but my body didn’t miscarry. It wasn’t initially joyous, I was so scared of another miscarriage. But, I saw a heartbeat at 8 weeks, I saw a tiny, healthy baby at 12 weeks, and everything looked perfect at 21 weeks.
Shortly after however that 21 week check, I started to feel unwell. “All normal” I was told. I mean, I had been really sick until 20 weeks, but this was different. I was suddenly in a crazy amount of pain in my upper abdomen and right shoulder. I went to the maternity unit where I had crazy high blood pressure, high amounts of protein in my urine, signs of liver failure and my platelets were dropping. I was surrounded by doctors, given steroids to help baby’s lungs and blue lighted by ambulance to another hospital. See, I was only 26 weeks pregnant that day. Not many hospitals can look after a baby that small.
I was so scared. So overwhelmed. I didn’t want them to deliver my baby. It was too soon. Lots of doctors told me that that was what needed to happen. I had severe pre-eclampsia and something called HELLP syndrome. If they left me much longer, both baby and I would die. My baby kept kicking me, letting me know they were in there, still OK.
Then, a doctor from the neonatal intensive care unit came to see me. He explained what they would do, the survival rates, what we should expect over the next few days, weeks, months… And I signed the consent and off we went to theatre to have a caesarean section. There were so many people in theatre, the NICU team was 4 people, 2 doctors and 2 nurses.
Daddy Elliott was allowed in there, they said he could tell me whether baby was a boy or girl, the surprise we were going to be having sooner than planned.
I heard my baby cry.
What a sound… a fighter…
I got a sneak peek of him as they whisked him off to the unit. I was stitched up, moved into recovery, a lady brought me a card. “Congratulations on the birth of your boy, 17th March 2016, 628g (1lb6oz)”. It had his photo.
I was moved to high dependency for the night and Daddy Elliott was allowed to go see him to take a few surreal photos of a seemingly impossibly tiny baby in a plastic box.
I sobbed and sobbed. I had no idea what had happened, what had gone wrong? why us?
I was wheeled to NICU the next day. There was my boy. Tubes, wires, machines, beeping… All keeping him alive. I learned the handwashing routine, how to raise the incubator up and down, I learned about ‘positive touch’… And there we were. The start of a whole trimester, 3 months, with my baby in a box, not in me.
Without NICU, I wouldn’t have my cheeky, funny, wonderful little boy. I never knew it existed until I needed it.
Having a baby in NICU is a test for a family, whether it is 1 day or 100+ days. It isn’t just premature babies that require neonatal care. It isn’t part of the plan.
We had a long stay – 79 days to be precise. But, as well as other preemie parents, we met people there with their term babies who needed help too. I learned that later the gestation doesn’t necessarily mean an easier hospital stay. There were later gestation babies who had a rougher time than Master Elliott.
NICU taught me to be patient (unlike Master Elliott with chocolate cake), it brought out strength I didn’t know I had and I learned not to sweat the small stuff. All valuable lessons for a lifetime of motherhood I am so lucky and grateful to experience thanks to amazing doctors and nurses in NICU.
Kangaroo Care – aka ‘Skin to Skin’
So much research has shown that skin to skin contact between baby and mum (or dad or siblings) helps to:
- Stabilise the baby’s heart rate.
- Improve a (more regular) breathing pattern.
- Improve oxygen saturation levels (an indicator of how well oxygen is being delivered to all the infant’s organs and tissues)
- Gain in sleep time.
- More rapid weight gain.
- Decrease crying
- It also helps with bonding.
I first got to cuddle Master Elliott when he was 12 days old. The feeling was indescribable.
Milk for a Preemie
Breastmilk, especially for the very early babies is so important for their immature digestive system. A condition called necrotising enterocolitis (NEC) is a big risk for premature babies. But, I am sure you can appreciate that the situations around the births of premature babies are not the best way for mum to initiate breastmilk production. I myself was too poorly to start expressing until the day after Master Elliott was born. Thankfully, with the support of the infant feeding team, I was able to express enough and donate 7 litres to another NICU. Expressing is very time consuming and not as efficient as a baby at building supply. Some mums find they cannot sustain their supply using a pump. However, for some, it can be done long term to provide milk for their baby, 15 months in my case since my baby didn’t want to feed from me!
Where mum cannot provide breastmilk for whatever reason, baby may qualify for donor. Donor milk is tested and pasteurised and the donor is screened prior to the milk bank accepting the donation. It is very safe. Formula is used as a last resort as it increases the risk of NEC, but it is certainly there if needed.
The Reality of the NICU Journey
I think one of the things preemie parents struggle with is the (possibly well meaning) comment of “but he/she is OK now though”.
Prematurity, for a lot of families, doesn’t suddenly end when you leave NICU. At the very least, there are follow ups with the neonatologist and physio to ensure development is on track and any delay is caught early and supported. Many severely premature babies, like Master Elliott, come home with oxygen as being at home is less risk than being in hospital infection wise. Many babies struggle with feeding so may come home with a feeding tube or even get fitted with a permanent feeding tube into the stomach.
These are just a couple of common examples. I guess what I want people to understand is that leaving NICU is just another milestone in the preemie journey. The effects of prematurity can be fairly short term for some, or lifelong for others. We were in the lucky group – home oxygen for 2 months, bottle fed on demand, generally followed his due date for development, very small for his age (but slowly catching up) , metabolic bone disease and chronic lung disease (both of which we don’t really struggle with anymore).
Don’t compare babies, they are all on their own journey.
Allanah Elliot is a mum and owner of ‘Little Elliotts’ World’ where she makes amazing handmade, reusable products aimed to be waste reducing and sustainable.