I suppose I should start be explaining how we got for there to here. So early apologies, I promise not all my posts will be as long or as lacking in funny as this one. After all it’s been 4 and half years since our family life began so before you can understand where we are now I guess you might need to know what’s happened already.
Jacob was born 4 and a half years ago in a prolonged and complicated labour that involved syntocinon (induction/augmentation drugs), epidurals and forceps. It was a far cry from the home water birth we’d planned, my waters broke early and a number of issues meant I was in hospital for over 24 hours before they finally decided there was room for me to be induced. Anyway, eventually after around 16 hours Jacob arrived, hoiked out after getting stuck under my right hip (ouchy). He was blueish, noisy and promptly pooed on my tummy but was pronounced fine and dandy by the midwife apart from his slightly wonky toes.
Sent packing the next day from the over busy ward, we were only too glad to be out of there. Over the next few days things became more difficult. Jacob was very sleepy and it was impossible to get him to breastfeed. I called in all possible points of help, only to be reassured that it would take time to get going. But five days roll by and a check is made, “he’s lost too much weight, in you go to hospital”. He remains hard to feed and special SCBU nurses are brought in with more bottle teats than you would imagine existed to try to get him to feed. Eventually after several days, he’s pronounced “fine” and we a re-released to go home, confidence dashed, to try to maintain the 3 hourly alarm clock monitored breastfeed and top up feed regime established in hospital.
Time goes on, things settle down but we still worry. We notice that Jacob has unequal pupils in dim light, one pupil expands more than the other; he is slow to raise his head when placed on his tummy; he is slow to sit unsupported and when he can (9 months) he remains prone to suddenly losing balance and falling backwards like a felled tree; he doesn’t babble but makes plenty of noise; the list goes on and on. We become more and more concerned and yet all our pleas for help fall on deaf ears, we are “overanxious new parents” in the eyes of our health visitor; our early experiences have made me “an overly worried Mum” and I need to “relax and enjoy my baby”, even a GP when asked about my son’s constantly open mouth tells us “he just likes it like that” and “he does look bit gormless, doesn’t he?”. Even now those last three make me almost say “grrrr” out loud. Finally when Jacob is 11 months old I by-pass our patronising health visitor and on the prompting of a friends Mum (who is also a speech therapist) I take Jacob to a GP and list all the things I’m concerned about. He listens, he too has young children, he sees what I’m saying and agrees to a referral to a community paediatrician.
The next chapter involves being told that our son is “just a late developer, not to worry, we’ll check him again but all will be fine; we’ll refer to speech and language for his feeding problems but basically don’t worry”. But I. Can’t. Stop. Something isn’t right, and I know it, call it mother’s instinct, I just KNOW it. I spend all day, every day doing developmental activities with Jacob, I read books, I pick brains of friends and family, I spend every evening researching things I can do to help him, Googling symptoms and worrying. It is exhausting.
And then, in January 2010 I find I am pregnant again, planned but happened more quickly than we thought it would! Time goes on and at 18 months Jacob is still on the late side of normal development, according to his paediatrician despite not walking. He is referred for a blood test for muscular dystrophy. Thankfully the result is negative.
We wait 15 months for our Speech Therapy feeding referral by which time we have got through the difficult period on our own and although Jacob is still behind in his tolerance of lumpy food, he is now eating and gaining weight well. We are discharged.
In October 2010 Jacob’s little brother Harry is born and the birth experience could not be more different. Harry is born with a kidney abnormality called hydronephrosis, we had learnt that he had this at his 20 week scan. He is checked after birth and it is pronounced not as bad as expected, he starts daily antibiotics. I spend the first few days on an enormous high and then the next week crying and looking for things wrong with him. I don’t find any and he soon shows me that he is developing well. Finally we see Jacob’s paediatrician again and suddenly he has global developmental delay, she agrees to refer him here, there and everywhere. It is too late we are moving. After waiting and waiting we are offered services that we can’t take up. It is massively disappointing and frustrating.
Jacob aged about 2
We move, not once but twice and in early 2011 and end up in Cornwall. A new start, a new hopeful start and straight away things begin to fall into place. I explain the situation and services appear as if by magic, speech therapists and physios visit us at home; we are referred to portage and meet a new community paediatrician who immediately refers Jacob for further investigations.
Harry not longer after moving to Cornwall
We move forward have blood tests and chromosome analysis but still no one knows what is causing Jacob’s difficulties. Harry has scans and appointments for his kidney which remains stable but not improved. I have major surgery to remove a benign tumour. Jacob goes to preschool and then to a wonderful Child Development Centre nursery. Life goes on, this is our new ordinary. Jacob is a one off, so far he doesn’t fit into a box but our life as a family goes on as we try to give our boys the best childhood, full of adventure and fun. An ordinary family life, or perhaps just one off ordinary.
oneoffordinary 