So I am officially probably the worst blogger around. I so very often sit down to update the blog, but something will happen to distract me - a baby will cry, a child will fight, the phone will ring etc etc. I'll try and remember everything that has happened over the last month or so.
A couple of weeks ago we had a 'big' appointment at the Child Development Centre with a consultant doctor, medical student, health visitor, occupational therapist and physiotherapist all assessing the babies to identify where any extra help is needed and if there are any 'red flags' to keep an eye on with regards to neurological conditions such as cerebral palsy. The babies were little stars during the appointment and although they weren't rolling or grabbing for toys or anything, no-one saw anything specific to be concerned about at this stage. This is such fantastic news as cerebral palsy continues to be our main concern for the future.
1 in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness.
50% of premature babies born before the 26th week of gestation are disabled, a quarter severely so.
Of children born before 26 weeks' gestation, results in 241 of the surviving children at six years (early school age) indicate a high level of disability as follows:
22% severe disability (defined as cerebral palsy but not walking, low cognitive scores, blindness, profound deafness)
24% moderate disability (defined as cerebral palsy but walking, IQ/cognitive scores in the special needs range, lesser degree of visual or hearing impairment)
34% mild disability (defined as low IQ/cognitive score, squint, requiring glasses)
20% no problems
We were shown some positions to encourage the babies to bring their hands together which we have been doing daily and there has been a huge improvement. Both babies are now reaching for toys. Joe has slightly better co-ordination and is less stiff in his arms and hands so finds it easier to grab things but Harry tries valiantly to sweep at anything waved over him. We have also been encouraged to put the babies down to play more often on their tummies. Tummy play is a dangerous activity with so many heavy-footed older siblings tramping around but we have given it a go, and again have seen big improvements in head and neck control, particularly with Joe. Joe is now able to lift his head and shoulders for a short time while laying on his tummy, whereas before he would just lay down and move his head from side-to-side. Harry isn't quite as good but improving all the time.
Today both babies had hip scans which were clear. The ladies scanning them couldn't believe how placid and calm Joe and Harry were. Neither of them made a murmour through the whole appointment even when they were being man-handled into various positions as the lady scanning was just learning what to do.
An on-going concern at the moment is Joe's weight-gain, or lack of it. He is currently tipping the scales at 12lb 8oz, which is a loss of 1oz from 2 weeks ago. He just doesn't seem to have an appetite. He'll suck his bottle with gusto for 20 minutes, for us to remove it from his mouth and see he has only taken 2oz. He doesn't seem hungry and with a lot of patience and encouragement we can usually get him to take 4oz per feed but that is still amounting to around only 16oz a day or less. Upon advice from the health visitor we are stopping his solid food for a few days to see if it increases his desire for milk, but I won't be holding my breath. Watch this space.
Porky Harry is 13lbs 9oz. They are physically very different in almost every way but are both absolutely amazing, wonderful, happy babies. Everyone comments on how lovely they are and I have to say I agree. They really are the best.