xmas stars

xmas stars

Saturday, 10 December 2011

where to start ?

Where do i start ? well i guess at the beginning back in Feb 2009 i was at a really happy place in my life i had 4 beautiful very healthy and happy children and a wonderful hubby then came the shock of the yr i was pregnant due 2nd Oct 09 how could this happen i was happy with how things were  life was going well and then bang it took me months to come to terms but slowly i did in till at 30 weeks i went into prem labour lucky it stopped so bk to enjoying the summer hols with the kids in till 24th Aug arrives and my waters break no this cant b happening Ive 6 weeks left so down the hospital we go scan shows baby OK but no water left round it a few hours later it all began a night i will never forget with pains coming along fast they discover baby's heart beat drop low a few times and then pick bk up the night of pain just seemed to go on and on with my hubby and mother in law by my side i struggled with the pain and kept fighting i remember saying to hubby if the baby's a boy Ive a feeling he wont b healthy but if its a girl she will b fine then it starts i need to push the heads there and then its gone what was going on all i remember was the pain finally after this happened a few more times there was no going bk i was pushing and the head arrives "stop pushing" shouts the midwife but i cant then my mother in law grabs my hand and looks at me stop or your baby will die i look at her Ive never seen tears like that in her eyes before and that's when i knew i had to try and stop after lots of pain and drama our gorgeous baby boy is born the cord had been wrapped around his neck twice but he was out doctors grabbed him and ran out the room go i shout at hubby go with him your mums with me i will be fine she wraps her arms around me for what seems like forever and then comes a noise i will never forget a very weak cry hes OK the doctors bring him back in long enough for a very quick cuddle and kiss and up to  the special care unit he went he spent 2 days in a incubator and then a further 8 days in hospital trying to feed and put on weight he was so tiny he didn't wake for feeds and struggled to feed he also failed his newborn hearing test saying they had no responses in one ear i remember sitting in hospital looking at all the other baby's thinking why wont he look at me when hes feeding i even remember saying to one of the other mums on the ward i cant wait till he gives me that intense look newborns give there mums when feeding finally we were allowed home and our baby Thomas became known as tiny tom at birth he was 4lb2oz but due to lack of feeding he feel below this by the time he reached 14 days old he had managed to pull himself bk up to 14lbs a few days after being home i got the 1st big hit i had a phone call asking me to take tiny tom to the children's ward as something had shown up on his heel prick test after a lot of waiting around we met a lovely consultant who told me tiny tom had congenital hypothyroidism and he would have to take a tablet everyday of his life and have regular blood tests so we went home a few days later he began being projectile sick we went to the g.ps who sent us straight bk to the children's ward after a week of tests and not being able to keep his feeds down he was diagnosed with pyloric stenois and had to be blue lighted to a different hospital for a op on his tummy after the op we went home a few days later with his weight then dropping to 3lbs due to being ill and then starved before the op back at home we continued to note different things that didn't seem right he was still not feeding , there was no eye contact ,he seemed to have no knowledge of his older 4 boys and sisters running around him -and believe me they are not quite , he just seemed to lay curled up in a ball leaning to one side we noticed his right pupil did not react to light and was smaller than the left and that his eyes seemed to dance his left ear was also misshaped and he seemed a grey colour all the time and he was as floppy as a rag doll also he had a high pitched cry he had his ear retested and it was confirmed he has severe loss in the left ear we contuied to fight and point all these things out many people told us it was because he was prem and he would catch up but in my heart i knew different we saw a physio in the Nov who referred Tommy for a scan on his hips thinking he had clicky hips but no it turned out he had hyper mobile joints we saw many docs and he had many tests in the Dec he was taken ill in hospital with bronchitis then finally in Jan he smiled his 1st beautiful extra special smile and began to give some eye contact he slowly put on weight Feb he reached 8lb and could fit into newborn clothes at last Tommy struggled with clearing the secretions in his throat and went blue a number of time but no one seemed bothered but after fight for help he got hyoscine patch's  by the time Tommy reached 1st birthday he rolled for the 1st time and got his 1st tooth but we still had no answers to why he had all these problems in Sept 2010 it was discover Tommy had hypertrophic cardiomynophy (thickness to the valves of the heart) yet more daily meds or him to take by now he was on thyroxine 1x day for thyroid , hyocine patches for his secretion's , senna and lac for his constipation but we just seemed to roll along with it all how are life's had changed in a year the winter of 2010 brought many admissions to the children's ward with constant chest infections by Dec Tommy sat for the 1st time which was great but we noticed he was starting to have lots of sensory issues with different things - wheres it all going to end , a new yr a new start ha not in are world in may 2011 Tommy was very ill with pneumonia but slowly recoved and seemed to bloom as the summer began he began to walk with support for his 2nd birthday and in November took his 1st steps unaided Tommy's a fighter and will keep fighting though all life throws at him many people don't understand Tommy and all his problems and think in time he will be like all his brothers and sisters and that it was due to his bad start in life that his development was behind but we know its much more than that he has lots of complex needs and also a few dyamorphic features for now Tommy's whats known as a beautiful swan (syndrome without a name) but we will fight for whats best for him and what he needs in his life thanks to the people who has supported us through the past 2 years and who have believed with us and not told us in not so many words that we don't know what we are talking about ,thank you to my mum who has been there helping us every step of the way and lastly thank you to my mother in law who helped keep Tommy alive that horrible night i know you are now watching him from above and will always protect him and thank you to my 4 children i couldn't ask for better and i love you all so much and to my hubby who's stood by me and helped me to fight every step i love you and to Tommy i love you and no matter how hard life gets you've taught me so much

1 comment:

  1. Well done on your first post! It was really interesting to read how you got to where you are now. Tommy has been through a lot, as have you all, and he is clearly a little fighter. He is lucky to have such a good, strong, kind mother like you who cares for him so well and fights his corner every step of the way. It sounds like you have a wonderful family too.

    Sometimes it is the well meant comments that can be even more hurtful, almost like they are questioning your knowledge of your son as if you don't know him better than anyone, as if you want something to be wrong with him! Try not to let them upset you. You know Tommy best!

    Looking forward to reading more from you. :) Xx