Guest List: Life on The Neonatal Intensive Care Unit

There is nothing worse than having a poorly kid. So stressful and heartbreaking and often frustrating because all you want to do is help them and often thats not an option. These are my feelings when one of mine has picked a bug up from playgroup or school.  I can’t fathom how intensely distressing it must be when your brand new baby is poorly….

Here Vicki Cockerill aka @vicki_nicu_mum tells us about those early days keeping vigil beside an incubator in NICU

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• I think it dawned on me when I was moved off the main ward into a side room on my own. The incubator was taken out, after all It wasn’t needed.

• My baby who was born 12 hours previously wasn’t next to me like he should have been, he was in the Neonatal Intensive Care Unit fighting for his life.

• Where I should have been waking up and caring for my baby I was being wheeled down the corridor to see him bursting out of his incubator (he was 8.12lbs and 4 times the size of the preemie babies in there) laying covered in wires, with alarms going off and having someone pump oxygen into him.

• This was all too much, I fainted and had to be taken back to my room.

• We were then visited by the consultant to explain that my son had a congenital heart defect called Tetralogy of Fallot. This meant there were 4 structural abnormalities wrong. He would need surgery before 1 year of age or he would die.

• Every day for 7 days I walked past the mothers with their perfectly healthy babies and felt sick to my stomach. Why was this happening to us? I had to quickly learn about the day to day running of the NICU and spent 90% of my time there.

• I walked through the ward with my head hung low with an empty car seat. I was going home without my baby.

• The double doors, the constant hand sanitising, knowing what times the Doctors did their rounds all became second nature to me.

• We were not allowed to feed Elijah until around day 4, we begun to take over some of his cares; nappy changes, cleaning his face etc. things that we should have been doing automatically and that you take for granted were now massive milestones.

• Resentment that others who we knew were having their babies and coming out of hospital on the same day took over and I sunk into a pit of depression. I was angry and the guilt that this was my fault was consuming. Our days went by meeting with Doctors, more tests and making polite small talk with the other NICU parents.

• You spend your whole day physically craving the Doctors to come over and tell you those magic words, ‘You can go home’. Each day that passes when you do not hear them sets you back further and further.

• When you do go home, you suddenly panic, you becoming borderline obsessive checking on the baby. You can still hear the machines beeping, and most will think now you are home it is the end of the story. It isn’t.

• There are the flashbacks you have at night, the Doctor’s visits and consultant appointments. It is being visited at home by the outreach team. NICU does not just end when you are home, it is with you for the rest of your life.

• You become aware that the smallest thing such as a cold could land you with another hospital admission.

• You fear the day they start nursery for the germs they could pick up.

• Every winter season is a battle with everyone in the family getting flu jabs.  

• You worry if they will be okay when they start school, you remain fiercely protective of them.

• If you have more children you become convinced it will happen again.

• That they will take your baby and you will be a NICU mum once more.

• We have just celebrated Elijah’s third birthday with his brand-new baby brother Harlow but it is bittersweet.

• Every birthday you are transported straight back to the best and worst day of your life.

• Once you become a NICU mum, you are one for life, as much as we want to say we have a normal life we don’t.  

• We carry the worry on our shoulders every day.

• It took me a long time to come to terms with being a NICU mum, it takes one smell, one noise and you are instantly back there again. However, it takes one smile, one laugh one new milestone from your child and it disappears again. And somewhere down the line you will feel like you can hope again, not live in constant fear and enjoy them.

• You can move on from NICU life but you cannot forget it.

• You are now part of a lifelong club with millions of other parents, but it was one you didn’t ask to be part of. That is the reality of being a NICU mum.