honkeyplonk: Pleeeeeaaaaassseee drink up

Thursday 17 December 2009

Pleeeeeaaaaassseee drink up

Dear Hope,
Please please please drink up your bottle. It's not ok for it to take over 3 hours to get a 2oz bottle down you. I know you've never been fond of the bottle, but baby, it's just 2oz. And it's important. It's got your medicines in it.
It's never been an easy task, but it's never been this hard. The last few days have been a nightmare. It's only once a day baby. Please. Daddy's tired. Mummy's worried.
didn't you hear what they said today?if u don't start drinking, you'll have to have another ng tube. We don't want that.
Love Mummy
X x x x x x x x x x x x x x z x x xx xxxx

1 comment:

Anonymous19 December 2009 at 04:10
She can probably taste the meds now, and is also clever enough to realise that she has a choice and prefers Mummy-milk!
I really hope that she does not have to have the tube fitted again. I know it sounds a bit mean, but if she gets hungry/thirsty enough first, then I reckon she will take the meds milk.
Good luck and fingers crossed.
BTW I was under GOSH till I turned 16 and I cannot say a bad word about it. Loved it there - loved everyone there. Am also happy to meet you up there anytime! Seriously.
Much love to you all especially during this horrible month.
Rachel xxxx
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To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope?
We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy.
Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love!

Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).