Welcome

xcsNothing can quite prepare you for parenthood, but for parents of premature babies the planning and expectation of a new arrival is dramatically interrupted.

When my first son was born 10 weeks early we were thrown into a world of micro-nappies, beeping machines, breathing tubes, feeding tubes, expressing pumps, portholes, picc lines and rigorous hand washing.

As an occupational therapist in the NHS I had worked in a large neonatal intensive care unit; I was used to handling tiny babies, their tubes, lines and machines, but as a parent I was lost in a bizarre medical world where we would wait day after day to hold our baby.

Whether you are a parent, healthcare professional or know someone with a premature baby, I hope you find this site useful and I invite you to support us to;

  • Raise awareness and understanding around premature birth
  • Campaign for better follow-up care and more support for parents following their NICU stay
  • Campaign to extend maternity leave and statuary maternity pay for parents of premature babies

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16 thoughts on “Welcome

  1. Belinda Shorney

    hi this site is great – our little chap was born not prem but poorly and reading this resonates with me much – the bleeping and tubes and not holding him – just aching to take him in our arms . Hardest 2 weeks of my life . Thanks to Derby NICU and the amazing staff he is now a beautiful 18 month old toddler . We owe Derby hospital everything – Oli is just a miracle . Your site helped me to understand what we had been through and share it as unless you have lived it – no one truly understands x

    Liked by 1 person

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  2. Claire Welsh

    Just been reading your blog & it’s so reassuring to know that a lot of the thoughts & feelings I had whilst baby was in special are common amoungst prem baby mums! Hated my thought train at times but now know it’s not just me!

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  3. Bernadette Armstrong

    My twins were born at 26 weeks, one at 730 grams and the other 550 grams, sadly the small one fell asleep with the angels, the other one is now 15 and ft5 4′, and wonderful.

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  4. ijemack77

    Ah. Our baby girl was born at 27 weeks in January. 9 weeks in hospital with a lot of worry and uncertainty. She came home on oxygen and is still on oxygen now .
    It’s a world we never contemplated. A situation that never crossed our minds. I’m still reeling from the shock. My husband was on a zero hour contract so could not stop working because we needed his wage. I’m shocked that my friend who had a prem baby nearly 30 years ago went through the same situation we are facing with regard to work. The law needs to accommodate parents with premature babies.

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  5. Mairead

    I has two girls born at 26 weeks. My first daughter passed away at 11 days old. My second daughter spent 16 weeks in Nicu. We she came home we had lots of medical appointments medication etc. My daughter developed a condition due to misdiagnosed heart condition. The pda was not closed and she develops pulmonary hypertension. My daughter passed away at 23 months old. This time was precious.

    I lost my job during this time. It was impossible to return.

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  6. Liz

    Thanks for your site. It helps me understand more about what my parents went through whilst I fought against the odds. I came into this world at 28 weeks weighing 910 grams. Minutes old I was whisked into a waiting ambulance & christened whilst being police escorted across Liverpool.

    For my 18th Birthday, I was lucky enough to visit the NICU where I’d spent my first 6 months and meet/thank some of the remaining staff who’d fought tooth and nail for me.

    I’ll be 40 next year … Not telling you how much I weigh now, but it’s significantly more!

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  7. Z McKenzie

    I came across this site because I was looking to fight regarding maternity leave for parents of pre term babies. I had out son 10 weeks early with no warning and he was in ICU for 6 weeks. Thankfully he is a healthy 20 month old bouncy boy now.

    My maternity leave just came and went, when we got our son home he was having to be fed every 3 hours then to 4 hours. Meaning I got little or no sleep ( I didn’t expect my husband to get up with him when he worked 11 hours a day). By the time I returned back to work which was part time I was totally exhausted and hadn’t had a very pleasurable time to bond with our son.

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    1. Catriona Ogilvy Post author

      Have you signed our petition to extend leave for parents of babies born too soon? We have over 13,000 signatures now!
      Please do sign and share it and help us to make this important change x
      https://www.change.org/p/the-rt-hon-sajid-javid-mp-secretary-of-state-for-business-innovation-and-skills-extend-maternity-leave-for-mothers-of-premature-babies?recruiter=332532147&utm_source=share_petition&utm_medium=email&utm_campaign=share_email_responsive

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  8. Angie

    From one preemie mommy to another, I extend my love to you all!
    We lost our first born son back in March of 2009 due to what they suspect was IC (incompetent cervix). He was born at almost 22 weeks, lived a little over an hour then gained his angel wings. Hardest thing I’ve ever been thru in my life.
    Second son was born 2 months preemie at 31 weeks, 4 days in March of 2011. He weighed 4 lbs, 5 oz so he was a good weight for his age. He did amazingly well tho. Had a NICU stay of about 2 weeks total. And is now a very healthy, talkative 5 year old & you’d never know he was a preemie.
    Third son was actually full term! All the way to 40 weeks & had to be induced! Wasn’t an easy pregnancy tho. Cervix & placenta problems. Had to do 2 months of bedrest with him. He was born February 11 of this year weighing 6 lbs, 10.5 oz. I think I shocked a lot of ppl including myself with how far I had went in the pregnancy because of my history.
    I was shocked with my body but am thankful that I held up to make it to term!

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  9. Charlene

    Thank you for your article. My son was born at 33 weeks and was sent home at 35 weeks with no NICU follow up. He cried for the next 4 months and after a merry go round of visits to health professionals we never did get to the bottom of what was wrong with him- he just eventually stopped crying. He was diagnosed with failure to thrive and did not talk until 3. I had PND and even now 6 years down the track I panic when I hear a baby cry- I thought it might be PTSD but was unsure. Your article has helped me to know that I am not alone

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  10. sarah

    This is fantastic. As a mum of 2 micro preemies. A 25 weeker 500g and a 26 weeker 820g and a 35 weeker i think this is a great idea. I felt so lost when my babies were born. This helped me feel better and i know im not alone x

    Liked by 1 person

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  11. rubyaa

    Good Morning! I will be the mother of triplets , two girls and one boy , I’m 24 weeks , I need things for baby . if someone can help me ,donate something I will be very grateful! I m live in London , Plaistow . Thanks . Rubia

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  12. Leanne Haughton

    Lovely I love these stickers…. My baby boy was born at 29weeks and I feel some health care workers forget this xx what a brilliant idea xx

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  13. Marci

    My daughter was born at 23 weeks and 5 days. She weighed 500 grams and was 11 inches. She dropped to just over 12 ounces at her first surgery. She spent 5 1/2 months in the NICU and came with O2, feeding tube and every monitor one could think of.
    Today… She is 14, in the 8th grade, a little on the short side but proud of it! She has mild Cerebral Palsy and ADHD. I am so grateful for websites like this one. The support from other preemie families was the best support I could have ever had! It made the days tolerable and hopeful that my daughter would have another.

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