A story of, for and about Hope. Our princess Honkey Plonk- Hope Olivia. One very special lil lady, who brings so much joy!
Friday, 8 April 2011
On the mend??
Today we had to go back in for a review and to have Hope's blood gases checked. It was hoped that her lactate would have come down again, then we'd all sigh a breath of relief that she was on the mend. Unfortunately it was still 3.8. Therefore the SHO (senior house officer) doctor couldn't discharge her. She had to consult with the registrar, who in turn passed the decision making onto The consultant. All this meaning what could have been a quick In and out visit, was getting longer, and was looking scarily like we werent going to escape. After examining Hope, she agreed we could come home. Though she's still very sleepy, we've had a couple of moments of awakeness and even some smiles. She's not eating or drinking hardly. When we went in this morning, she'd had her morning medicine yogurt (that's just what we give her her cocktail of medicines in), that was hard work to get down her, but is not optional! Then a couple of chocolate buttons whilst Dolly was doing her ballet exam.
We came home late afternoon; hoping she'd now be hungry, I made her an egg Mayo sarni, which she gagged on and spat out, so figured I'd temp her with a milkybar dessert. She wouldn't even eat that!! We even fought to get calpol into her, nevermind anything to drink which is a struggle at the best of times. Within an hour of being home, even Chris said he thought she'd be better off in the hospital, and I was thinking that he may be right. Hope then slept and slept and slept. I made up a big batch of her favourite butternut squash and pear soup, in the hope that we can try to get some fluids plus something nutritious into her over the coming poorly days. I went out for a run (I've missed that this last week) and was so relieved to come home to a Daddy who was very pleased that he'd managed to get her to eat some. I was seriously considering (and I haven't quite ruled out) taking her back in tomorrow for iv fluids, but hopefully this is a step in the right direction.
On a less positive note... Her Nappies have been dry all day and night ( it's now 11pm) except for one wet one at 11am, so fluids may still be needed. Her mito disorder means that dehydration is a big no no, and the lactate being high makes this even more crucial.
So just hoping really she keeps taking these teensy steps in the right direction, and that we manage to avoid the children's unit for the rest of the weekend.
The consultant did say to bring her back if she's consuming less than 25% of her normal diet. I think we are just on the border now thanks to the soup. For what reason I do not know, since they can't seem to lower it, she said she'd like to repeat the blood gases next week. But I explained that we are due at the John Radcliffe next week anyway for all sorts of tests, which will include bloods of all sorts... And a lumbar puncture :"( trying very hard to put that to the back of my mind for now
Thanks for all the get well messages. I've passed them all on to her honkness
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.