The truth about Hope (originally written 8th June 09)

(excuse the lack of capital letters. i am typing 1 handed; hope is in the other arm feeding)

ok, so when i say 'the truth', it's not because i haven't been telling the truth in the previous updates, but i suppose for the first 3 months or so, things were going so well; we were sticking our fingers up to the doctors who had predicted the worst, she was proving them wrong, my own little miracle!however, more recently, it's becoming clear that things aren't quite as well as they should be. i'll include the recent overview from the health visitor because i do think this sums things up quite well. then i'll fill you in on the last 24 hours, and the hospital appointment today.

report to Hope's consultant by health visitor:Hope has been visited at home by the health visiting team weekly since birth. the nursery nurse has taught mum baby massage which Hope and mum both enjoy.

CHILD GROWTH:weight has been measured weekly and is following a line just below the 0.4 th per centile. The most recent weight is 4.310 kg ( that's 9lbs 8oz) on 01.06.09. Hope is having mainly breast milk and 10oz of Infatrini (high cal -meant to give her a boost) in 24 hours.length is 57cm and on the 2nd per centile.Head circumference has been measured weekly as requested and for the last 4 weeks has dropped off the 0.4 th per centile. i am concerned that the anterior fontanelle appears to be small and almost closed; i am unable to palpate the posterior fontanelle.

VISION: Hope's vision and eye contact are causing a concern to me and her parents. i am concerned that her eye contact and ability to follow has worsened in the last few weeks. mum reports that she has witnessed side to side nystagmus most days. i am concerned this may be a symptom of her underlying neurological problem. as her vision has appeared to have worsened her parents would like an assessment by an opthalmologist and or neurologist.

GENERAL DEVELOPMENT: Hope's head control is weak for her age and she has a preference for the left side. she appears to have a full range of movement in her neck and no obvious torticollis. she is able to lift her head momentarily when lying prone but is not able to move her head from side to side (well actually she does sometimes).Hope will grab objects when they touch her hands. She puts her hands to her face.Hope is able to roll over from her front to her back by flipping herself over. she initially disliked being placed on her stomach but now seems more settled in this position.

SUMMARY: Hope is a delightful little baby who is growing slowly but consistently and seems satisfied after feeds.In my opinion she is now showing signs of generalised delay and main areas of concern include her vision problems and static head circumference measurements.

:O(that really came as a blow when i read the report. although i already knew it all, seeing it all in black and white, it seemed so...i dunno...sad? i was upset. chris just didn't get it. i shouldn't expect a man to understand. he said 'are u just upset because she's not perfect like jordan and max? we knew she'd have problems..' to which i replied, 'she IS perfect!' and she is. she always will be. hope is hope, and she's just adorable. but i do worry for her. surely that's allowed. right?

anyway, i fully admit to being completely over protective. i wont leave her- at all. even in the car, i'll sit in the back so i can keep an eye on her (it's that or i'm constantly getting the kids to check her which; bless them, they do). i guess, i've always had in the back of my mind that i needed to be there incase something happened, or she had a seizure. well, it breaks my heart to say, she has. she's had a few :O(last night, her lil arms both shot up in the air like she was doing the dance from micheal jackson's thriller video. her beautiful blue eyes shot up into her head and were flickering at a hundred miles an hour. it only lasted a few seconds, but about a minute later, happened again. i knew it was a seizure :O( i came downstairs and typed infantile seizue into youtube. my fears were confirmed. this morning Hope and i were in bed, thinking about getting up (as you do). she was full of smiles and happiness. they got her again. this time probably about 10 times in as many minutes. fortunately they don't seem to distress her at all, and she was smiling inbetween them.

after i'd dropped jordan and max at school, i was pushing hope home in her pram, and i could see it was happening again.we already had an appointment today to see her consultant. good job really, i'd have taken her to a+e otherwise.today, at 19 weeks and 5 days, she weighs 9lbs 14oz. her consultant, like me is obviously concerned. he's going to arrange for an EEG asap. that should be within a week he said. in the meantime, i am to keep a diary of anymore seizues, to try and capture on video, and he's arranged for us to have open access to the children's unit; which basically means, if they get worse, become stronger or more frequent, then i can take her straight to children's unit rather than mess around with a+e. he said they could get worse, or disappear. let's hope it's the latter! her consultant is arranging for her to see an opthalmologist, and to have another cranial ultrasound. today we had to go and have lots of blood taken for various tests. my head is spinning!i know this isn't what you all wanted to hear. but i also know that you'd all want to know. please don't feel sorry for us; we will be fine. please don't be disappointed that she isn't that miracle baby. BECAUSE SHE IS! She, along with the other kids, make me so happy; happier than i ever though possible after lil Sam died.