I started bleeding when I was 22 weeks pregnant and went into hospital - three weeks later Isabel was born.
Because she arrived so early she has a catalogue of serious conditions including cerebral palsy, and epilepsy and severe brain damage – over half her brain is missing. She is tube fed and needs constant access to oxygen to keep her alive.
Isabel had to have most of her bowel removed and it now can’t absorb enough nutrients to keep her bones strong so she has brittle bone disease.
We found out when she fell ill and we took her to hospital. She had 13 fractures and we ended up staying in hospital for 6 months. It was a terrible shock and a real blow to receive yet more bad news.
Isabel is in constant pain and needs morphine four times a day. She gets seriously poorly often and quickly - she’s is extremely life-limited. She spent the first six months of her life in neonatal intensive care which was it was a really difficult time.
When she finally came home Isabel cried for 23-hours-a-day. That was tough; we couldn’t sleep because we had to watch her in case she needed oxygen or started choking.
She is permanently attached to a machine that measures her oxygen levels and we have to carry a canister of oxygen with us because she needs it very often, several times an hour. I couldn’t take Isabel anywhere on my own because it was too dangerous for me to drive; someone needs to monitor her at all times, not to mention the equipment we have to take.
Then Nurse Lisa from Julia’s House started visiting us at home. These sits were lifesavers. We could spend time with my other daughter Chloe, who’s seven or have a date night with my husband, Andrew, it was amazing. To be honest, I am not sure our marriage would have survived those months without the support of Julia’s House. The strain on our relationship was immense. It’s hard for any new parents, but when your baby is so seriously ill, it’s overwhelming.
After eight months at home, Isabel ended up back in hospital, but this time Julia’s House were there to help, which meant a huge amount to me during these months. It was difficult and distressing to leave her but I couldn’t sit beside her bed 24/7. I had Chloe to think about.
Because Isabel was so ill, in a constant life and death situation, Chloe had been side-lined and passed to family members, but the support from Julia’s House meant that I could spend some precious time with her.
Despite being so poorly, Isabel is a content little girl. She loves cuddles with her family and Julia’s House nurses and she has a very sophisticated taste in music; she loves Mozart and opera!
Julia’s House was the only support I had during the first eight months of Isabel’s life and made such a difference to the whole family. Julia’s House were there for us and just wonderful in our time of need.
Anyone thinking of becoming a paediatric nurse of changing jobs should not be put off by the idea that Julia’s House is a scary place. Coping with the death of a child is the part of the job everyone focuses on and yet there is so, so much more to being a Julia’s House nurse.
“I am not sure our marriage would have survived those months without the support of Julia’s House. The strain on our relationship was immense. It’s hard for any new parents, but when your baby is so seriously ill, it’s overwhelming.”