A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Wednesday, 13 April 2011
Please pee plonkey!!!
Everything's gone as well As it could go. We've been well looked after, and Hope was even supplied with some fibre optic lights to play with. We had a slight hiccup in the beginning as Hope started coughing and sneezing just as the doctor came to see her. Then the doctor was then considering postponing the tests until she was better. But as I said to her, since November-ish I think, Hope seems to have come down with various viruses and infections one on top of another, so getting another appointment that coincided with a 100% well Honkey, may be tricky! After a thorough going over of Hope, she said she was reluctant to use the planned iv sedative that would have kept her asleep, but also carried a greater risk of respiratory depression, and would only use an oral sedative that wouldn't completely knock her out, but just make her a bit drousy. I did go With her for her last lumbar puncture, but kind of assumed I'd not be able to here. The nurse asked if we wanted to go in with her, or offered the services of a play worker to comfort hope. As awful as they are to witness, I felt that the least we could do was to be there to comfort her.
Though she'd woken by the time of the procedure, she was still drousy, she gave a little fight as they tried to get her into position, and cried a bit as they took the spinal fluid, it was far less traumatic than her previous lumbar puncture. After that, 2 doctors and 2 nurses spent over an hour trying to take blood. Hope was fairly patient with them all pricking her trying to get the good veins. They took FOURTEEN vials of blood!
After that we went back to the ward. Hope had her vigabatrin in some custard (5 hours late due to fasting for the sedation). They were pleased with her recovery and that she was again alert and had eaten and not been sick. So as soon as she pees, we are free to go. They'd put something in her nappy when we first arrived to catch a sample of urine. It's still dry! We've been here since ten. We have been sat just waiting for her to pee for a couple of hours now. We keep checking and hoping... C'mon Honkey.... Please just PEE!!!!!
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.