Here's Emma And Marco’s Story
It never crossed my mind that we would have to leave our baby behind in NICU. Our son, Marco was born at full-term and all our scans throughout pregnancy were positive.
Initially, we thought he would only stay in NICU for a few days until his blood sugar levels were regulated, but he ended up staying in hospital for six weeks due to him having hyperinsulinism and developing other complications.
During this time, we drove every day to the hospital, meaning that we had to juggle childcare for my daughter. My partner spent his precious paternity leave at Marco’s cot side and had to have extra time off work.
We Settled Into A Routine But It Was Emotionally Draining
We were just about coping as we got into a routine but at times it was emotionally draining. I found it particularly helpful to go home a few hours earlier than my partner to have a break from the hospital environment.
It was important to have some normality - a shower, a decent meal or just to unwind in front of the TV, otherwise, I think I would have crumbled completely. It was important to also leave Marco’s room during the day, to get away from the constant beeps of the machines.
On two separate occasions when things took a turn for the worse, Marco was transported to Addenbrookes which was a long way from our home.
Luckily, we already had overnight bags packed ready in the car, as we had been taking advantage of the family room at our local hospital on the odd night Marco was declining. We were prepared to stay away from home.
Support From Family And Friends Was Vital
We had lots of support from our family and friends. It was lovely to know everyone was thinking of us, but we weren’t afraid to ignore calls and messages as sometimes we just needed some quiet time.
We each set up a family WhatsApp group so we could update family members quickly - this helped to cut down on unnecessary phone calls and we could spend more time cuddling Marco.
Having lots of skin-to-skin helped me to bond with Marco as I wasn’t allowed to breastfeed.
There were times when I got upset as I didn’t feel like a proper mum to Marco. I wasn’t cuddling him in the early hours or dressing him and I felt useless when I couldn’t wind him as well as the nurses.
My partner kept reminding me that the nurses had years of experience and that it felt like I was a first-time mum again as there is a ten-year age gap between Marco and my daughter.
I would go home crying thinking I was useless, and that Marco wouldn’t know who his mum was. I soon learnt that I shouldn’t be in competition with the nurses but take advantage of their expertise to make me into an even better mum for Marco.
We Didn’t Want To Miss Any Of His Milestones
With Marco being full-term and therefore older than the other babies on the unit, he needed more stimulation. The nurses put up a mobile on his cot and let us take in his bouncer, books and toys for him.
We also asked to give him baths once his cannulas and wires were out. We didn’t want to miss or forget any of his milestones such as his first bath, so we made sure we took lots of photos and videos.
I also found it very helpful to keep a diary - I wanted to record everything so I could tell Marco when he is older about all the trouble he caused! Without knowing at the time, I think it helped me to process what was going on.
Unfortunately, we didn’t receive any mental health or emotional support, however we formed good relationships with the nurses, which meant that we weren’t afraid to ask questions and have a good cry to them!
We Asked So Many Questions And I’m Glad We Did
We asked so many questions and we’re glad we did because it meant we had a good understanding of Marco’s condition. We soon learnt what each beep meant along with all the numbers. I’m glad we asked questions and weren’t afraid to say if we didn’t understand.
By having things explained to us again we were able to feel more in control (even if it is a situation you cannot have any control over) and we didn’t panic at every single beep anymore.
I tried to bottle up my emotions, but I soon realised it was exhausting and so having a cry and a moan helped. We were offered some counselling however we turned it down as we had the attitude of ‘we will be alright.’ In hindsight I think it would have helped as it has taken a long time to come to terms with our ordeal.
Parents shouldn’t be afraid to talk. I have only just now found the Bliss website and I think if I had found it sooner, it would have definitely helped me to realise I wasn’t alone.
Our local hospital was so small that at times Marco was the only baby in the unit, and it felt that we were the only unlucky ones in the whole world.
This coupled with the uncertainty of what was going to happen and when and if we were ever going to get to go home caused me a lot of frustration.
After lots of ‘one step forward and two steps back,’ we made it home and can finally enjoy Marco without beeping machines and wires, loud crying, smelly nappies and all.
Help And Support Is Available For Those Affected
The trained volunteers at Bliss are on hand to help you and are there to support families whose little ones need neonatal care, no matter the reason for their stay, or how long they are there for.
Support can be given in person or remotely, via the Bliss email and virtual support services. Please get in touch at hello@bliss.org.uk for support and information via email or video call. More information is available here.
You can also read our tips for parents of babies born full term but sick.
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