Saturday, 22 August 2009

The Happiest of Happy Birthdays

Next Saturday is my littlest's 1st birthday, and as any parent knows, all the birthdays are a time of celebration of the life that you brought into this world.

But in our house, Edward's first birthday will be just that little bit more special than normal.

was born 11 weeks early, making him very premature indeed. He weighed just 3 pounds, 6 ounces at birth, and Ed likened our son, on his first viewing of him to a see through pigeon. I was in recovery when Ed went down to the Neonatal unit, and he was gone for what felt like ages, but was probably about half an hour, and when he came back he was white with shock. He since only recently told me that he had had to go outside the hospital before coming back to where I was as he was crying so hard and didn't want to upset or frighten me. And Ed doesn't cry very often.

I was taken up to singularly the worst possible place after the birth-th
e Maternity ward. I was then left over night from 10pm until 8am the next morning. The bed I was given had no call button, so the whole night I lay, unable to move, and worried sick for my son. I asked at 11pm what was happening, but was told they didn't know, and when I asked for a picture of him, as he had been taken straight from theatre to the Neonatal ward and I hadn't even got the slightest of glances, but the promised picture didn't materialise.

The though
ts going through my head were unimaginable. I started to believe that he had died, and that maybe they were waiting to tell me when Ed got back to the hospital in the morning.

At 8am, the breakfast trolley came r
ound, and the three other mums and their babies started mingling with each other. I began to feel like the weird mum as I had no baby beside me in a crib. Apart from the odd glance, no one said anything, until the mum opposite came and asked if I would like her magazines, and asked if I was alright. She then went and told the nurses off for not getting me a picture of the baby!

Some 14 hours after the birth, someone f
inally got me a Polaroid,
all be i
t a blurry one, but the relief I felt at seeing my son was overwhelming.

Here it is on the right, the first picture
of Edward.

When Ed came in, he looked like he hadn't slept in a week, and told me he just couldn't get his head around how small and ill our child looked. Chrissy was 8 pounds 6 at birth, a big fat lump of healthy full term baby, and Ed had been there at her planned section, and was the first to hold her. So to miss the birth of Edward and then to be faced with a child who looked nothing like a baby that was full of health must have shocked him to the core.

16 hours after Edward's birth, and only after Ed had pinched a wheelchair and lifted me in it did w
e get to see our son together. All the way down to the ward in the lift, Ed kept warning me how frail he was, how ill he looked.

Nothing prepares a parent for a neonatal unit-the smells, the heat, the lights and beeps and machinery everywhere. The other parents all smile dull smiles at each other, in a warped camaraderie of shared worry and

And then, Edwards nurse, Penny, a lovely woman, showed me to the little corner that had be
come my sons first home.

Ed was right-he looked red, and was still covered in a downy hair, that in places made him look like he had a moustache. I was told how well
he was doing, that he was breathing on his own, that he was a good weight. I held his hand through the glass of the incubator , and wondered at how tiny this little boy was.

Days turned to weeks. The hardest point was going home 4 days after the birth, but leaving my boy behind. It didn't feel natural.

Everyday I would get the bus and make the 45 minute journey to the hospital, and everyday I would sit on that bus never know
ing what state my son would be in.

Of course, this had
an effect on all of us. Chrissy was a mere 16 months old, and we had just moved into a new house too. Suddenly, Mummy was out from early in the morning until just before her dinner time, and so our normally happy and iindependent girl changed over night into a clingy and often fractious child. Ed and I were physically and mentally drained, cooking meals in the early days that neither of us wanted to eat, and the new house remained untouched and half unpacked if that.

Overtime we got more used to the sit
uation. But Edward, rather than continuing to get better, got worse over a weekend when he was nearly two months old, and had to be placed on oxygen. The tests our son had would frighten the toughest of adults- tests for Meningitis, tests for heart defects, tests for lung defects, tests, tests and more tests. His poor hands and feet began to resemble pin cushions with the cannula's that were fed into them.

And for months this was all we saw- our so
n, hooked up to machines, not getting better but not getting worse. His Doctor, Dr Jones, was honest when we asked what we dreaded. If it continued that Edward was reliant on oxygen, then he may not live.

I think I can liken that moment
to being run over by a bus, but this really only scratches the surface of the devastation I felt. What made it all the more real was that two days later, another parents twin daughter died suddenly and without warning, and with it the whole suspended animation of us parents was shattered.

Finally we were given a diagnosis. Edward had Chronic Lung disease, meaning the lungs have not developed properly (for more on this go to

He was placed on a new kind of ventilation called a VapourTherm. This was so new that the hospital had to borrow one from Oxford to use it for our child.

And slowly he began
to improve.

At 3 months, he started having a tiny thimbleful of milk
through a bottle. A momentous occasion as some premature babies struggle to develop a sucking motion due to being fed via a tube in their nose, but Edward, continuing the fine tradition of guzzling Deegan Babies took to it immediately. He would, however, take an hour to drink a mere 25ml of formula milk. And more often than not would take another hour to bring the smallest of wind back up.

By the end of November, things were looking up
. He had his eyes and ears tested, and they passed with flying colours, as did, more importantly, his heart.

Then came the ultimate- we were given a date for his homecoming. I spent a week in the unit with him to get me used to looking after his needs full time without the help of the nurses.

Oxygen was plugged into our house, as Edward would have to have oxygen at home too, which baffled Chrissy-her face was as if what the hell is that big noisy thing over there?

And even better, just days before he came home, he went a whole 3 days with no oxygen support at all. So the oxygen was only needed at night as a precaution when he came home.

On the 2nd of December, we brought our son home, and for the first time, his sister, aunts, uncles and cousins could get a proper look at the new(ish) arrival.

Christmas that year was amazing-I'm mad on Christmas, and get more excited than your average 8 year old, but this year was even better. We had a huge tree, a huge dinner and a huge celebration. And for a baby of 4 months, only meant to be
1 and a bit months, he had rather too many presents!

Edward continued to improve, and finally at 5 months was signed off his oxygen. At 8 months his drugs, a daily occurrence since birth, where also deemed unnecessary.

Chrissy went from slightly mistrusting of her brother to falling head over heels for him, and now that he is crawling they are thick as thieves.

Edward is now a happy, smiley boy, always ready to give you a cheeky grin. I recently took him in to see his old friends, the nurses, and the only reason they knew who it was in the buggy was because the recognised me. He has no sign of how small and ill he once was. He can crawl and babble with the best of his peers and loves food to the point where if Chrissy leaves something within his reach, he'll pinch it!

So when our son turns 1 next Saturday, I think we shall have the biggest Cheshire cat grins ever. And no one could blame us, could they?

So Happy Birthday to my little boy, my precious little fighter, Mummy says "I love you" x


  1. Oh Claire. What an amazing story. I wasn't prepared for that. If I'd known what a bumpy start he had I would have saved this post for tomorrow (I've just put my slap on for a night out and now I need to re-do my eyes). Is he out of the woods now? Happy Birthday precious Edward xxx

  2. Yeah he's fine now-he'll always have Chronic Lung Disease and in winter we have to keep a very close eye on him, but he's doing so well, meeting all his milestones, and you honestly wouldn't know how ill he had been.

    Sorry about your make up, I possibly should add a warning that this blog may cause damage to your mascara!

    Have a lovely evening x

  3. I have just spent the last five minutes crying reding your post!! Before I had kids I was never this weepy, but since then you just know (or at least guess) the terrible pain other parent go thorough when you imagine it happening to you and your family. Well done for being so brave and congratulations for having such a wonderful one year old! x x x

  4. Thanks so much for your kind words x

  5. What an emotional read, my eyes aren't very dry either! It must seem like such an achievement to have Edward reaching his first birthday. I'm sorry to hear about his lung disease, do you get medical help and support with that? Lovely to read that he's otherwise doing really well. I hope he has a great birthday!

    I'm 24 weeks pregnant - and to think you had him when you were only 5 weeks further on from me! What an ordeal.

  6. We do get support-in the shape of our health visitor and the nurse we had when Edward first came home, Donna, who we can always ring whenever we're not sure of something.

    Good luck with your pregnancy-I really hope I haven't scared you that yours will be like mine! My daughter had to be coaxed out at 9 months she was so comfy!

  7. Happy Birthday Edward, you are a strong little man and you are loved very much.

  8. Thanks Pippa-the amount of kisses he's been getting he's a very smiley boy indeed! I'm printing out this blog and comments to show him when he's older.

  9. Claire,

    Thanks for your comment on my blog re: the boycott against Scotland. My son is half-Scottish and I come from a line of Stewarts so this effort hits home with me as well. Hopefully, as one commenter said, this will pass quickly and never really take off.

  10. I sure hope so! I'm from Ramsays and Hamiltons and my Dad was born in Leith. I used to visit the east side all the time as a youngster, loved the fringe and am hoping to take my kids up soon too. And I could never ban Shortbread!

  11. Happy birthday!

    I had two prems and know exactly how you feel. It took me a long time to internalise what happened, and I don't think I have totally yet.

  12. What a moving post, thank you so much for sharing Edward's story. My 2 were both full term so I can't imagine how that time must have been for you.
    Hope he had a happy birthday xx

  13. Wow - you brought back so many memories of our time in NICU although it was much shorter than yours. I'm glad you son is doing well and HAPPY BIRTHDAY to him!


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