Well Caja was not prem - full term, but born by an emergency c section.
I had pre eclampsia so was in hospital 2 weeks before the birth, but after the birth was thought to have been full eclampsia but it had not been realized in time to stop the problems at the birth
and I had hemorrhaged for at least 6 hours while in labour. I was told afterwards that both of us were not far from death because it was not realized until the last minute how ill we both were. Caja’s heart stopped in the womb several times before they were able to locate an anesthetist - it was about 3 in the morning and there were no anesthetists in the hospital to put me under and it was too much of an emergency for an epidural.
She was full term but just so tiny - she fitted into my hand - But while she seemed relatively Ok - I was iller than she at that time - due to her size she had to go to SCBU and I did not see her for three days as I was too ill too - I was on drips and had drains in my stomach where I had hemorrhaged and was so weak .
During this time she was fed by nose tube as she refused to bottle feed at all!
Although of course because she was full term ( or so they thought I personally was never sure) she was not as tiny as your prem babies ...Hunny and Ubu
But she was very small for a full term baby and did not grow as they thought she should so at 10 months Caja was only 10Ibs and she really was very ill
So had to go back into hospital yet again - at 10 months - where they put her lack of growth and weight gain down to me!!!!
And tried to 'prove' it by making her gain weight in hospital.
Yet I had spend almost every waking hour for the last 10 months trying to feed her properly. Never a minute went by without my trying to think of ways I could get her to feed, get her to eat solid food and not just the breast. The only thing she would ever eat apart for the breast was plain vanilla ice cream!!
Actually she lost weight in hospital as she was breast fed and would not take anything else except ice cream!!!
And although they banned me from visiting her in the hospital for 4 days in order to establish the bottle and solid food she would not take either so eventually they capitulated and let me come in twice a day to breast feed her ( I had to travel a 30 mile round trip twice a day for 2 weeks to breast feed her and still she lost weight!! She just would not accept any other food so they admitted defeat and let her go home with me again after 3 traumatic weeks when it was suggested she go in care as they may be able to do a better job!!!
She came out of hospital weighing less than when she went in!!!
In a way a bit like Hunnys situation with Jamie, but at a later stage.
This was a terrible time as Barry and I were loving doting parents and the last thing we wanted or needed was our one and only baby to be put in foster care!!!!!!
Anyway its a long story - as it continued for several years more although for the most part I just managed at home and kept away from hospitals and SS etc as they had never done either me or Caja any good that I could see....
I am not negative in general about theses services - it is as I say a long story some of which I have told and much I have not
And basically for me I did not get the help and support I needed to cope with a very small and sickly baby who just did not thrieve. Because once it was decided that it was down to me in some way - it was never decided why i.e. social, personal or practical inadequacy was all suggested at different points - they were not able to look further than me as the cause for many months - even years.
Yet at that point in my life, other than what was going on with Caja, despite PNI I was functioning well, I did not drink or smoke , I was working, running a smallholding and was chairperson of my local village association and active in the community – but I still could not get my daughter to eat properly or gain weight as she should – and I so loved that tiny bundle and feared she would die- and no one was helping me . It was a very frightening time for me as Barry was away for over 6 months so I was completely on my own most of the time!
Eventually the worst of the nightmare ended when Caja was about 18 months when it was decided that I was not an ‘inadequate mother ' in any way but that they still could not understand the cause of her smallness and lack of weight gain!
( yes during that time - birth to after her hospital stay at 10 months - I was described as 'possibly' inadequate and such in notes that I still have, yet here I was a youth worker and teacher working with young parents and babies much of the time - how could it be that I did not understand how to care for my own baby)
I then made a complaint to the hospital for the treatment I received at the birth ( lack of care) originally that I won and a further complaint to social services - both through the ombudsman - which was upheld and I got an apology ( this apology never really mended the hurt I felt at the damaging assumptions that had been made about my ability to care for my own baby!!!.
I then just kept my head down and looked after Caja as well as I could and did my best to keep away from hospitals, doctors and social services.
But eventually if was found that she had a heart problem!!!
That 'might?' have been the main problem all along..............
- But not until she was over 4 and at school.
It was the school nurse who first noticed her very bad heart murmur at a routine school check. She frightened me to death by ringing me as an emergency, at work ,to check that I knew all about it and that Caja was having treatment for it as it was not in her school notes that she had a heart problem - and of course I did not know she had anything wrong with her heart and so she was not having treatment for it at all!!
As despite her being in hospital many times from 0 years to 3 and had been seen by many doctors including consultant pediatricians NO ONE had ever mention to me that she had anything wrong with her heart that could explain her smallness !!!! Nor was it in any notes that I have ever seen!!
All I can assume is that because they thought it was me, i.e. inadequate mothering' no one ever looked for any other cause??
Anyway she was referred to the Bristol heart team, worryingly at a time that babies were dieing there under the surgeons knife and she was a patient of theirs for about 18 months two years but it was decided eventually not to operate.
Her smallness was then thought to be - as far as anyone can tell ( as at 18 she is still the size of an average 12 to 13 years old i.e. clothes size 6 and 4ft 11) .....
...That she has a heart valve that has a hole in it but it is not functioning badly enough to warrant and operation i.e. she did/does have a very pronounced heart murmur, is very small and gets tired quickly but at about 7 it was decided that enough oxygenated blood is getting round her body not to take any further action....
And this is how it has remained.
And while on the one hand I was pleased they never operated on it on the other I never really accepted that they should not.
I was told by one doctor that she was small because she was lucky and her body had always limited itself in size to the size her heart could cope with and then as she grew the hole closed up due to her heart getting larger (but this has always puzzled me because she still at 7 had a very pronounced heart murmur which I thought would have gone if her heart was functioning OK enough now...
To be honest for all my understanding of bodies and how we function - I have never really understood this thing with Caja's heart - perhaps because it was all explained to me when I was too distressed to take it in and now they just do not seem to be worried .
She has had check ups at her doctors a few times since, but they never seem to think her heart is an issue - maybe it is not. If so why did I go through the hell I went through when she was a bay, why was I frightened so badly, why did she have to see the Bristol heart team??
So many questions are still unanswered!!
But I still worry even though she is 18 because she is just so tiny compared to others her age and also looks so pale and is always tired.
So Caja and I are now in the process of trying to get her notes so we can read them ourselves.
I could kick myself for not doing this before as I really do not understand what was exactly wrong with her heart, if she still has any problem, or why this meant she was so small all her life and continues to be so - I also worry still about her tiredness and paleness ( she does have a blue tinge to her skin at times.( or perhaps this is my paranoia /my imagination??)
As you can see Ubu your question has opened a whole can of worms for me as my daughter is now one month off 18 and i still have nightmares of those first 4 years caring for a very underweight, sickly baby who never slept through the night , had no energy, went blue when we tried to make her walk as a toddler , would not feed or later eat anything but breast milk until she was about 3,with absolutely no explanation I ever understood - except to be told until her heart vale was found to have a problem ....
That it was somehow my fault she was underweight and small !!
If I had had an explanation - or even ever had an explanation and support for looking after an unwell baby I think things for me would have been very different for me .
And basically I have never had that explanation and while Caja is OK, healthy in that she does not get too many bugs or anything, she continues to worry me as she is so small and pale and lacks the sort of energy I feel a thriving 18 year old should.
For me caring for and worrying about a 'sick baby' has lasted Caja's whole lifetime so far.
It has affected my life drastically and maybe hers in that my attitude towards her has always been so stressed/tense with this worry, which often unfortunately has come out in tenseness irritation with her at times.
VeriteeXX