“Josie came home with five medications...this was such a stressful time.” – Liz’s Story

Finding out my partner and I were expecting a little girl was such a special experience for us but going into spontaneous labour at 23 weeks wasn’t something that I imagined would happen.

Josie arrived at 23+6 days in 2019, living the NICU bubble brought so many highs, lows and varying emotions and also a strength I didn’t realise was within me.  Josie spent 137 days in NICU across three hospitals, experiencing many procedures and three operations all at such a young age.

In the first few days and weeks we took each day as it came, spending each day with her, listening to the doctors and watching her grow and handle the many procedures with amazing strength and fight.

Each day we would watch the nurses give Josie varying medications, most of which we didn’t know what they were for to begin with. In time we began to develop more of an understanding and confidence to administer the medication ourselves.  The nurses would draw up the medication, have it checked with another nurse before asking us to put down the NG tube.  

Some medications would also be put through her IV, more so the TPN which was all the nutrients she needed to help her grow strong when she wasn’t feeding.  At one week old, the NG perforated Josie’s bowel, resulting in her needing an operation. We were moved to another hospital via emergency transfer to have the operation.  

As Josie was nearing discharge we were shown how to draw medication up and give to her. The nurses were great in encouraging us to try and stick to similar times at home, not to mix some medications together or administer on their own. More often than not medication was placed in a small amount of milk to help it digest better.

Josie came home with five medications, the hospital gave us a small amount and a prescription for her GP who would then arrange repeat medications. This was such a stressful time and being discharged was an anxious time for myself. That constant support from nurses and doctors was no longer available, although it was a milestone we had been waiting for so long, it also brought other emotions.

The medication Josie was discharged with did not last very long, we thought the GP would ensure the medications would be available to us quickly. Josie required the following medications, Dalavit, folic acid, Sytron (iron) and a diuretic for her heart.  Josie’s heart duct did not close before discharge as most do. Due to this she was given this medication to support this and remained under cardiology. At three years old, she had an operation to close this.

I found during NICU writing information down helped me massively. I recorded the nurses who looked after her, decisions made by the doctors, any milestones she met like moving from CPAP to low-flow oxygen, and when her ROP examinations took place. When we got home I made a medication diary and started recording when and what medication I gave Josie. I would also include her feeds as well so I could keep track on how much she had taken across the day. I found this helpful, kept me focused making sure I didn’t miss any medication. Having a diary provided during NICU and supporting in the transition home is something I would have used.    

Read more about the PADDINGToN Study here.