Lister Neonatal Unit Families Group
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  • Home
  • The Big Build
    • 12 HOUR CYCLE-ATHON
    • CHORAL CONCERT AT ST MARYS
  • Neonatal Stories
    • Babies born before 27 weeks
    • Babies born at 27 - 30 weeks
    • Babies born at 31 - 36 weeks
    • Babies born at term
  • Fundraising
    • Previous fundraisers
    • Rowathon 2017
    • Celebration Mural >
      • Order a print of the mural
      • How donations help
  • Blog
  • About Us
  • Support
  • Contact Us

Leo
Born at 29 weeks

Leo’s Story

At 29 weeks our little miracle Leo came into this world weighing 915g, less than a bag of sugar. Although initially he seemed to be doing well that soon changed, and he went purple and had to be quickly put on ventilation. That initial moment you go in to see your tiny baby in this plastic box, covered in tubes and wires with machines beeping constantly...you are totally overwhelmed, lost and don’t know how to feel or what to think. 

The one thing you’re told in the NICU is ‘this is a rollercoaster’...and boy is that true! Some days you have massive highs, then others massive lows. There were times we thought Leo wouldn’t make it or he wouldn’t be the take home baby we had longed for after years of infertility. We saw some awful things and cried a lot, but we also smiled and laughed a lot too. Leo went from the ventilator, to MPAP, to CPAP, Vapotherm and then oxygen. He had weight gain issues, several blood transfusions, several jaundice issues, PDA as well as a few other problems. Every journey is different with every baby's individual issues and struggles, but what I found in the torturous 3 months it took to get Leo home, is the support from the staff and other parents is amazing. 

When Leo was about ready to come home we were told he would be home on oxygen, initially something that panicked us and we almost didn’t want him home, for fear of having to have this huge responsibility of keeping your child alive and well with tubes and machines yourself, with not nurses or doctors on hand. We got some great advice and spoke to other parents recently home on oxygen which helped us greatly. The day we bought Leo home was so surreal, it was a really tough few months after that adjusting to the ‘real world’ and our new life, after being ‘institutionalised’ for many months, however we got there! Now he is the happiest, sweetest little boy who is 14 months actual, 11 months corrected and we cannot even believe how far he, and we have come. He is no longer on oxygen, his PDA is almost closed and he is like any other normal 1 year old (albeit still very small!). Some babies have longer lasting issues and some come out fairly unscathed, however either way you will have some amazing, happy times and these strong fighters will warm your heart every day! 

The Lister Neonatal Families Group fundraises as part of East & North Herts Hospitals Charity
Registered charity in England and Wales no. 1053338


Hours

M-F: 9am - 5pm

Email

listerneonatalfamiliesgroup@gmail.com