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Our NICU experience

Updated: May 12, 2020

Hi I'm Rachel, mum to Ellie!

Here's our story

Ellie was born pre term at only 33 weeks gestation. This was due to severe Preeclampsia and many other complications that resorted in my liver and kidneys starting to fail. I was placed in the high dependency ward. It was a terrifying time. I was lucky enough to have a natural birth although very restricted by wires and monitors. I was unable to drink or eat during the several days before and during childbirth due to associated health risks. It was a straight forward start to giving birth, very ‘normal’ and quite relaxed. Then things turned bad quickly. I was unable to have any pain relief and if that wasn’t bad enough the Doctors and Midwives couldn’t find the babies heartbeat for over 7 minutes. I remember the room filling with an army of professionals. If my dignity hadn’t gone out the window already, it certainly had by then. My Partner found it all too much and retreated into the en suit for the remainder of the birth. Against all odds Ellie came screaming into the world after just 4 hours. She weighed just 4lb 4 oz. It was hard not being able to hold her as she was rushed straight to the Neonatal Unit.

I couldn’t see Ellie for the first week of her life due to my high infection markers and that made the whole NICU environment more daunting to start. There are nurses everywhere, private screens and lots of beeping machines. When you get time to pause and take in everything around you, you realise just how many other poorly little babies there are. The unit is separated into two parts. There is the NICU (Neonatal Intensive Care Unit) which is where most Pre-term babies born at 23 weeks+ begin their journeys. There is also The high dependency unit which is the nursery your preemie will spend most of their time in to develop before discharge. When I first lay eyes on My beautiful Ellie she was led in an incubator under an UV light. She was the size of a hand at most. I remember a sense of guilt washing over me. She looked so vulnerable in her tiny pre- term nappy that was far too big and covered most of her tummy. She had wires everywhere and her arm was placed in a splint. It was terrifying to see but mainly as it was all unknown to me. This is the most important time in the NICU journey to ask questions. No questions are stupid. When you learn what the purpose of each machine is, it becomes far less scary. Most pre-term babies will have a splint on their arm or leg. There is nothing wrong with either limb, it is only there to keep the wires in place and stop the little ones pulling any of the lines out. Every baby will also have a tag around their tiny little ankles. This is a safety component and sends a horribly loud alarm out across the NICU if anyone tries to ‘steal’ the baby. In Ellies case the alarm was set off several times as she wouldn’t keep still and managed to wriggle it off her ankle. She was a proper jail bird trying to escape. The incubators are also a worry at first. ‘Why is my baby in one of those and not a crib’ I asked. In most cases babies will start their life inside the incubator. As babies are unable to maintain their own temperatures, the incubators keep them warm and in Ellies case, enabled them to use an UV light to manage her bilirubin levels which cause jaundice. After a few days she was transferred to the Nursery. The nursery can be slightly more intrusive of privacy as its shared normally with around 4 or 5 other babies. I found myself staring at the numbers on Ellies machine and jumping with every beep. At this point it’s so important to remember they are just monitors. The only thing to do when panic or doubt sets in, is look at your baby. Ignore the numbers and trust in the medical professionals to monitor the machines. The nursery is the most encouraging part of all, as you are in close proximity to other mums and dads and can support one another. I developed many strong friendships during this time, and we stay in contact still. Your other friends and family may have never experienced this situation before and therefore will find it hard to relate. This is why it is essential to seek the support off the other NICU families, even after being discharged home. It is also important to take part in your babies ‘cares’ which are done every 3 to 4 hours. It can be nerving to change them when they are so fragile but the more it's done the more ‘normal’ it will become. Don’t be afraid to ask the nurses for help. They are not their to judge. If you haven’t changed a nappy before, just be honest, you wont be alone. I found that after leaving the NICU Ellie had settled into a 3 hourly routine which made getting back into normality easier. One of the most important things to remember is that ‘its your baby’. It sounds stupid really, but it can be hard to not associate the nurses with having some sort of say over your babies. I remember asking ‘can I hold her’ like I needed permission. You Don’t. Its your baby in or out of hospital.

Breast Milk is another hot topic in the NICU Unit. There is so much pressure to ensure your baby has the volumes they need. You need to remember your baby wasn’t meant to arrive yet and your body is still on catch up. The more you stress about it the less milk you will produce. Eat and drink plenty. Most units will have a breastfeeding room, nicknamed ‘the milking parlour’ for obvious reasons. Remember your babies ‘sucking’ reflex doesn’t activate until around 36 weeks so try and be patient with them. Even with the help of the breastfeeding nurse in the unit, Ellie refused the breast point blank. I had to rely on pumping breast milk for the first 4 months of her life. The NICU have machines available to use whilst your there. Some may even lend out machines after discharge. If you are in a position to purchase your own they range from a manual pump around £20 or an electric pump starting from around £100. I would recommend the Ardo double breast pump. Its simple to use and easy to buy replacement parts for. This is also the brand that most hospitals use. Breast Milk in the unit is referred to as almost ‘liquid gold’. Don’t feel embarrassed if you have to use donor milk to begin with. It is only milk, and its so important for the pre-term babies immunity. If this is not your preferred method, don’t feel pressurised. There are so many formulas that the nurses can try with your baby. I met a ex inpatient of the NICU, a lovely 8 year old girl who was born at just 23 weeks. She was funny and very active. It goes to show how wrong the abortion age range is set at. How incredibly strong and resilient children are. And most of all, how miracles do happen. After 4 weeks we were able to take Ellie home.

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