A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Wednesday, 7 October 2009
This time 2 years ago I was excited about the next day. It was our 20 week scan with Sam. I couldn't wait to find out whether we were having a boy or girl, but hoped secretly for a boy. I was so naive. It never crossed my mind there could be something so wrong. On the 8th of October 07, we found out we were having a boy. But that his chances of surviving were less than 50%. we named him Sam which means 'against the odds' and 'God has heard'. We drove away from the hospital and Leona lewis' new release 'bleeding love' played on the car radio. Sam's song. We had it at his funeral. On the 9th of October we were at the john radcliffe hospital for the first time. The first of many! On this day we were told Sam's chance of survival was about 30%. I had an amniocentesis . Sam's chances went down to 5% later. We fought. He fought. For 16 hours. My lil soldier. I miss him every second of the day :0(
On the 8th October 08, we found ourselves at the all too familiar Oxford hospital. Our baby girl, who just weeks before had been discharged from this hospital with an all clear had been referred back here because of enlarged ventricles. Another amniocentesis.
This year, we have declined the john radcliffe's invitation for the 8th and 9th of October. This was when they were going to admit her for the biopsies. Spooky hey?
Well, get this... Max who plays football all over the country now... Has an away match this weekend. Any guesses where? Oxford! Of course :0$
Hope's ear infection seems to have cleared up. We have been blessed with a few days of bliss. A happy, smiley noisy beautiful alert little girl. Today hasn't been as good. Hope hasn't been as happy and has had some nasty seizures. One so bad, packed her bag for the hospital, whilst considering dialling for an ambulance. After 45 minutes it passed. But she's had some more nasty ones so I've upped her meds this evening. She's now on 100mg per day of vigabatrin.
Tomorrow we have a busy one! That's an understatement! We are watching Max's assembly at 9, a check up on Hope's ear at 10. KoalAs at 12-2:30. Max has training from 4:30-7:30. Hopefully I won't get a chance to think too much about the 8th October. Hopefully we will avoid the john Radcliffe. Well, all hospitals for that matter.
So, that's 2 years of our run of not such good luck. Hopefully things will start working out for us?
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 ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.