Monday, January 31, 2005

The view of premature babies

So tiny, tender and precious, a preemie is a beautiful sight to behold! Her petite, delicate features hint at the beauty and promise of the young girl she will become. Imagine the hours you'll spend cuddling and loving this lifelike collectible preemie doll!
Now, you can shower this tiny infant with all the love in your heart with this collectible
preemie doll.

The Reality is very different.

Baby shown:-

Michael born at 24 weeks and 5 days, weighing 889 gms and 11" long.

Not held/touched until he was 8 weeks old, unless it was by the Dr's or Nurses, sticking needles etc into him. Had a large notice above his tray which stated "MINIMAL HANDLING" viewed mainly through a plastic bag

Hours spent crying??? perhaps a better question would be how many hours were you not crying!

Did I love him??.............. No, Why???............... because I was too frightened too. Want me to be really honest, he was the scariest thing I've ever seen, the machines, the wires, the tubes, the noise, and in amongst all this was my baby. Nothing on earth prepares you for this, certainly not the above "preemie doll" which looks like it has more fat on it that my 36 weeker

Number of times we were told he was going to die within the first month,...............I lost count, future what future, you live from minuite to minuite, hour to hour...........

Monday Blues

The kids are all in school at the moment, and it is quiet, I slept most of yesterday, and have to confess to feeling really depressed at the moment. Every so often life really gets on top of me, and I withdraw. I spent most of yesterday sleeping, I don't know if it's exhaustion, or what it is, but I really can't face it. It was not a good weekend all in all.

This morning while the house was empty I decided I was going to try to tidy up, I've done some of it, but want me to be honest I really can't be bothered.

It all gets to me like this occasionally, I cope for a while, and then something happens that throws a spanner in my works, and it all grinds to a halt. I get fed up of walking around with a plastic smile on my face, pretending everything in my life is wonderful. I guess it will be like this for a little while, and then things will pick up for a while, and I'll start to handle things better again.

Saturday, January 29, 2005

The Mistress is Back

How does nightmare on the M25 grab you??
The mistress has returned, "Daddy Bike" as Michael refers to her. "The Mistress" is my name for it, as I am a Motto-Guzzi widow.
This heap can do no wrong, 3 weeks ago, it was disappearing out of the street, on the back of an AA van, because parts of it's suspension had fallen off....this is an 18 month old bike, that has been looked after and treated well and with respect. It has not been thrashed, nor has it an excessive amount of mileage on it. Fortunatly the suspension fell apart on the drive and not on the motorway or I, well I dread to think.........
This is not the only thing that has gone wrong with it in the 18 months that DH has owned this bike, and let's just say I am not happy, I'm not impressed.
But as I said she can do no this morning we bundled the kids into the car, and drove them what felt like half way across the country to collect her. DH couldn't wait to get her back, I think he's felt like he has an arm missing or something, so has been like a bear with a sore head without her.
The trip there wasn't too bad...........apart from the odd request for a toilet stop, and the odd bickering it was ok
The trip home was a nightmare........................the kids fought and argued all the way home, Michael has worked out how to flip J's seat backwards and forwards using the small lever on the back of his seat. So J would suddenly find himself squashed or laid flat out having his hair pulled. On several occasions Michael turned on F, too, so I had all of them screaming and yelling at each other, with lots of tears and shouting, and there wasn't a damn thing I could do about it. You cannot stop on the M25!!
It was damp and wet, not the safest journey I've ever is moments like this that remind me why I like to go by myself without all the kids, and it is moments like this that remind me why I'm looking for respite for Michael. By the time we got home I was ready to burst I'd had about as much as I could stomach for one day.
Three screaming kids in the back of a Galaxy.............not my idea of fun!!!

Friday, January 28, 2005

A bit more research

Premature boys have smaller brains

US scientists believe they have discovered why boys born too early struggle more with schooling in later life than premature baby girls. Doctors have known premature baby boys fare worse than premature baby girls and that both have smaller brains than babies born at the normal time.

Now a team at Stanford University have found specific brain areas are much smaller in preterm baby boys. Their findings appear in the journal Pediatrics.

Compared with girls, premature boys tend to struggle more with speech and language and can have a harder time at school as a result. Dr Allan Reiss and colleagues were interested to find out whether there might be a physical reason that could explain this difference.

They looked at the brains of 96 eight-year-old children, 65 of whom had been born prematurely. Magnetic resonance imaging scans showed the children who had been born prematurely had smaller brains than the other children, as would be expected from previous study findings. The volumes of both grey and white brain matter, the two forms that the brain is made of, were reduced in the premature group.

However, when the researchers divided this group's scans by gender they found a difference that has not been shown before.

Gender difference

The preterm girls had similar volumes of white matter to the girls born at the usual time. But the preterm boys had much smaller volumes of white matter. These reduced volumes were in areas of the brain that are responsible for things that reading, language, emotion and behaviour.

Dr Reiss said: "This is a remarkable finding. "In males, the temporal lobe and the deep cerebral region of the brain are preferentially affected. "This is very interesting because it turns out that individuals who are born preterm often have particular problems in language-based areas, and the temporal lobe is one of the seats of language. "Researchers have hypothesised that white matter might be preferentially affected, but sex-based differences have never been clearly shown until now," he said.

Dr Reiss hopes in the future it might be possible to protect premature babies' brains against this volume difference. "We should try to figure out a way to stimulate white matter growth in the brain of a preterm baby or develop a partially protective agent," he said.

Dr Paul Fearon from the Institute of Psychiatry, who has carried out similar brain volume studies in adults who have been born prematurely, said the findings were very interesting. His research, also published in the latest edition of Pediatrics, found such adults had smaller brain volumes than adults who had been born at the normal time as babies.

He did not find a gender difference. But he said there were various explanations why that might be and he thought Dr Reiss' conclusions were plausible.

Important findings

It could be that by the time one reaches adolescence and early adulthood that changes have been compensated for perhaps. "During adolescence the brain undergoes a massive transformation and a lot of the brain cells that are there in childhood tend to get pruned away.

"So although the findings of both studies seem slightly at odds there are potential explanations for it," he said. "This study is a further important step in the direction of linking what specific parts of the brain are affected and perhaps in the future might point to ways of either preventing those brain insults or even treating them after they have happened," he said

A spokesman from BLISS said: "It's extremely positive that the study has been able to pinpoint exactly what area of the brain is affected. "This is of particular importance for boys as it may help identify later school needs," he said.

Haloscan commenting and trackback have been added to this blog.

Wednesday, January 26, 2005

more research

I think this answers that last question, about which area's of brain are affected
Between 5% and 15% of babies born prematurely later display major spastic motor deficits suggesting cerebral palsy. “Even more concerning is that between 25% and 50% of these infants will exhibit a broad range of developmental disabilities,” emphasized Terrie E. Inder, MD. Dr. Inder is a visiting scientist at Children’s Hospital in Boston and an Associate Professor at the University of Melbourne in Australia.

Suspecting that premature infants might have brain structure alterations relative to healthy term infants, Dr. Inder and colleagues used an advanced form of magnetic resonance imaging (MRI) to compare the two groups’ brain structures. “Based on previous neuropathologic and conventional data, we anticipated finding alterations principally in white matter structures,” Dr. Inder said. What she and her group discovered, however, was that the most striking differences between premature and term infants were in cortical gray matter, she related in her presentation at the 31st Annual Meeting of the Child Neurology Society.

I've been doing some research

Into brain formation in premature infants, why do I torture myself like this???

Premature Infants Have Smaller Brains; Do They Normalize Over Time?
ARLINGTON, Va., March 12, 2003 –

The brains of premature infants are smaller than those of full-term babies, even when measured at the same developmental stage after birth, according to recent studies of brain images at Harvard Medical School and Brigham and Woman’s Hospital.
A number of recent studies have associated educational disadvantages with low birth weight, a hallmark of premature delivery. This deficiency continues into adulthood.
One surprising report that came out in 2000 showed that newborns weighing less than 5.5 pounds are nearly four times more likely to drop out of high school by age 19 than siblings born in the normal weight range. The study did not examine physiological differences.

Simon Warfield, Ph.D., assistant professor of radiology at Harvard University, is studying the physiology using one of the largest databases of magnetic resonance images (MRI) of the brains of both preterm and full-term infants.
“We found that infants with certain brain injuries have a thinner cortex than those of healthy individuals,” Warfield says. “This suggests that preemies are not just delayed compared with healthy infants, but that there are significant structural differences. I don’t know if infants will be able to make up for these.”

Warfield, however, has found that smaller brain size and other structural abnormalities in the brains of preemies may, in fact, persist. “Nobody has really had a look at the brains of infants before,” he says. “Doing MRIs on premature infants is rare.”

With a 2001 Biomedical Engineering Research Grant from the foundation, Warfield combined 285 three-dimensional volumetric MRI images taken since 1994 at Brigham and Women’s Hospital with 20 images from Children’s Hospital in Boston, 70 from Christ Church Hospital in New Zealand, and 106 from Royal Women’s Hospital in Melbourne, Australia. His group standardized the images and placed them in a database that is being used to create a complete model of infant brain development.

“There is no significant data on the normal pattern of structural brain development. We’re building a database on a whole range of ages from 28 to 42 weeks to assess how much brain tissue is present and what is typical,” Warfield says. “The most important characteristic is that this will be quantitative. We won’t be relying on interpretations of behavior to assess development. It will be an objective measure that will tell us about the brain.”

Warfield’s research has already contributed to improvements in care for preterm infants. His work was cited in the American Academy of Pediatrics’ warning to doctors in 2001 about using dexamethasone, a commonly prescribed treatment for lung problems in preterm newborns. The drug eases irritation caused by treating underdeveloped lungs with a mechanical ventilator and a breathing tube. But Warfield and others cited the potential for serious side effects from dexamethasone. They found that the drug treatment was associated with a 30-percent reduction in brain size on MRI scans.

“Now we’re curious what parts of the brain are affected. What areas of the brain are smaller than they should be?” he asks.

Contact:Simon Warfield, Harvard UniversityFrank Blanchard, The Whitaker Foundation


I was supposed to be going to a coffee morning at school this morning, but it didn't happen, N. is home from school sick, so I've spent the morning trying to get hold of the Dr's.

Have requested and sorted a copy of the MRI, have to send the money off, and hopefully we should be able to collect it soon.

Lots of washing to do today!! DH is on night-shift this week - ucky!!

Tuesday, January 25, 2005

The MRI Day

MRI Day has finally arrived, didn't sleep very well last night worrying about how things were going to go today. My biggest dread, Michael having to have a general anaesthetic, and ending up back on 02. Michael thinks he's going to the Dentist, his dentist is at GOS, and no matter how hard we tried to explain, he still thinks we're going to the Dentist.

We were at the station for 8.20 this morning, we have been on a train so many times with Michael before with no problems, he loves the train, this morning, no...he threw a tantrum, too many people at that time of the morning for him I think....the train that arrived was the wrong colour, it was purple, he was expecting Thomas the Tank Engine. So we were almost nervous wrecks before we'd even got on the train.

But once on, he was fine, spent the trip to London, looking out of the window.
When we arrived in London, it is a fairly short walk to GOSH, finding the ward was another matter, ok who left me in charge of the map!!
But when we did eventually get to the right place having been through 3 different wards all starting with the same name, we found the day ward! We still managed to be early!!
At 10.30 Michael was taken for an EEG, they attached electrodes or "Dots" as Michael called them all over his face, and then passed a small electrical current through his eyebrows to make him blink. Can't say he was overly impressed particularly when the small electric current wasn't so small!!
Once they'd done this the probe was changed for a very fine needle, which was placed in the skin, just under his chin, and again an electric current passed into the muscle, the volume was turned up on the machine, and you could hear the noise being made by Michael's muscles.
Not a happy boy!!
But I have to say it was all over and done pretty quick, and Michael was convinced that this was the dentist he was seeing, who was looking at his chin!
Once this was done, it was back to the ward, we weren't given any idea as to how that had gone, the Consultant needed to study the results before he could then discuss them with the Neurologist. So I can't say if they were ok or not, although he did say something to his collegue about no movement at F2, what ever that means!!
When we got back to the ward we were down in the playroom, Michael was a little star, he found a blow up shark, and was doing impressions, have you seen Finding Nemo??? There is a shark in there called Bruce, the first thing he says is "hello, names Bruce."
One of the Nurses was Australian, I think she thought it was hysterical, watching Michael running around with a blow up shark, repeating "Hello, names Bruce".
The MRI didn't happen until 3pm, by this time DH and I were both convinced that there was no way we were going to be bringing Michael home tonight, not after a general, takes him too long to get over them. Whilst down in MRI I jokingly asked for a copy of the MRI, and much to my amazement was told that we could have a copy, for a small donation. Turns out you need to have permission from the Consultant too, but will order a copy tomorrow.
Anyway, Michael was back on the ward by 4pm....I think perhaps we were sedated as opposed to a general.
He's got over it too quickly.

Monday, January 24, 2005

A visit to the Community Paed

I need to explain this, when Michael was dx'd with Autism, it was suggested that we have J. assessed too. He has various speech and developmental issues that at the time we put down to Michael having been born early and all the interaction and time he'd missed out on. Wishful thinking on our part I think.

Anyway, at the time we were questioning the possibility of him too, being Autistic, high functioning, or perhaps Dyspraxic. J. is a toe-walker, he is clumsy, he falls continuously, he gets very easily distracted, for example he will go off to get a pair of socks, and by the time he's out the room he's side-tracked by something else, you'll frequently find him upstairs playing, he's forgotten what he went for. J. is unable to sit still. seriously he cannot do it, you can put him in the middle of the floor with nothing around him, and time him, within 10 seconds his hands are moving, then he'll get a fit of the giggles and you've lost him.

He struggles with pencil control, I guess they would call it "fine motor skills" buttons etc are a problem to him too, and I'm dreading having to seriously teach him how to tie his shoelaces!! He has it all "up-top" as they say, he is a bright kid, he loves Maths, and is really good at it, his reading is excellent, but struggles to put things down on paper.

The new thing with education around here seems to be that kids learn joined up hand writing from the word go. BIG PROBLEM. When your like J. and struggling to get to grips with pencil control, forming the individual letters is a big enough issue without having to join them up. Who thinks up these silly ideas??????

He's been seeing a Physio and an OT, for about 8 months now, he has inserts for his shoes, and also brace type things to sleep in at night, no I can't remember the proper name for them!!

Anyway, before Christmas he had a fit, a really scary fit, took him almost 30 -45 minuites before he became semi-aware of anything going on around him. We'd called an ambulance who, arrived as he was going into what I called the trace stage, he sat rubbing a spoon on the table and smacking his lips! Long story short, the Dr's at the hospital decided it was a febrile convulsion - am I allowed to say how unconvinced I am??? J. is basically too old for febrile convulsions and this just doesn't fit what I saw with my own eyes that night. For two days afterwards, J. did very little other than sleep, so I rang and asked for an appt to see the Community Paediatirican with him.

So today was our appointment............we discussed what had happened before Christmas, and I questioned the falling that J. does, because sometimes he seems to just fall over nothing, it's almost as if his legs give way from under him. Whilst we were away over the weekend he managed to walk/fall into a wall, left him with a nasty bruise on his head. I mentioned this, and J. showed her his bruise! So we now have a diary to keep of any falling incidents, and apparent staring into space, difficulty in gaining his attention etc.

We also looked at the origional concerns around fine and gross motor skills and his speech, J. has been discharged from speech therapy, so that's ok. But still see's the OT, PT. The PT has mentioned to me muscle weakness - or hypotonia in his midriff, but made no mention of it in the report that she'd written.....(make me out to be a liar why don't you??) She did however mention difficulties that she'd had with J.'s concentration. Which led to a conversation about his inability to sit still, his wandering thoughts and the difficulties that we experience with him.

Long story short, the Paed is looking at ADHD, or ADD, she asked lots of questions and then gave me a questionaire to fill in. I have to say, that I was answering yes to almost everything.

My experience of ADD/ADHD kids is very different from the one I have at home. The kids I came across in my work, tended to be kids who were difficult to control, J. just doesn't fit that. Maybe it's an attention thing rather than a hyperactive thing, although I guess the inability to sit still would fit, but he's not totally hyper. Although you wouldn't have believed it looking at him whilst we were in there, he didn't settle to anything, kept interupting conversations, and finally settled on a big yellow ball to throw himself off!!......................I'm confused!!

The Community Paed also did a through examination of him, when she came to look in his mouth, she asked if he has frequent ENT issues, which he doesn't, but it turns out J. has two tubes in his throat, don't ask which tubes, because I need to go back to her on this, I was still reeling from all the other stuff. But apparently this is fairly unusual, so she's going to discuss it with the ENT people, especially as then J. had a nose bleed while we were in there.

She said she would write to his school to discuss how he is in class, and see us again in 3 months time, when she'll look at prescribing meds. I don't want my child on Ritalin, the side-effects are too risky, I am not happy to have my child on a class A drug.

So I'm looking for safe alternatives at the moment. Wish me luck

We've had a busy weekend

I know I've been pretty quiet for a few days, the reason being is I've not actually been here, I took J. to his grandma's for the weekend, some R&R time for me, and for him too. Away from the strain of it all.

The other kids need a break from time to time as much as I do.

We had a lovely time, we wandered round a couple of shops on the Saturday, looking for new shoes for J. appears we may get a couple of weeks wear out of his current ones, so we then went to Wilkinson's and stocked up on paper and pens.

Then we went to have lunch in a fish and chip shop, the food was wonderful, even better for not having had to cook it myself, J. can be a picky eater, he doesn't like potato's very much, isn't that keen on meat either, but polished his plate, and finished with ice-cream and a big smile.

When we'd eaten, we got in the car and drove to Ludborough to the Lincolnshire Wolds Railway
My dad is heavily involved as is my nephew, when we got there they were laying track. But it was nice up there, and J. enoyed wandering round the steam trains, and would like to go every weekend.

Unfortunatly it's too far from where we live.......sometimes I think it would be nice to move back up that way to be nearer my family.........but then I spent most of my childhood not being able to wait to get out of there. So I'm realistic enough to know I would never settle, and DH certainly wouldn't.

We did look into moving a few years back, when I was pregnant with the youngest, put our house on the market, sold it and found a fabulous 4 bedroom house with potential, just down the road from my Mum. Had the whole selling process not taken so long I probably would have moved, but the details on the house we were buying took so long, and it got so close to little one's due-date that I got cold feet, call it hormones call it what you wish, but I couldn't go through with it. So we backed out.

Looking back, I loved the house, if only we could afford something like that here, but I'm not sure any of us would really have settled, DH would have stayed here, until he could get a transfer, and policing round there is very different. From what I hear from my Mum the whole area is going down-hill and fast. It's violent, lots of trouble on a Saturday night etc, jobs are in short supply, there is very little for the young ones to do, unless you count the beach, which is ok, until they get too old for sandcastle's.

Ok so I may sound like a right snob, but to be honest I think the kids probably have a better future, 30 miles outside of London, than 200 miles away. It isn't perfect around here, I'm not pretending it is, and there are some less than nice people who live around here, but it is very different here than in my home town, and given a choice between the two........I think we'll stick to here.

It is lovely to go back and visit, and we love spending time up there in the summer, far more for the kids to do with the beach etc, but I lay awake at night up there. My Mum has been burgled more times than I care to think about, I've had car windows put in up there, they didn't take anything, just put the window in. At least here I can sleep at night without worrying.

Wednesday, January 19, 2005

All is quiet................

My children are all at school, and the house seems eerily quiet, do you think I'll ever get used to it???? I have so much I should be doing!! I have a pile of washing, ironing etc, all the usual boring housework stuff!!

So what has happened since I started my blog??

Michael came home with a note in his school book saying he had hurt himself at school yesterday, apparently he fell of a bike, he told us he banged his nose, and to be honest he does look slightly dark around the eyes and across the nose....but the next comment in his book also explained that, apparently he was sick a couple of times at lunch time, bringing back phlegm, which is usually a sign of a deterioration in his chest. School also said he wasn't himself, apparently he's not we'll have to keep an eye on that. Have suggested that they put his fluids down his tube, so if he's not taking it orally at least he's getting something!!

It was haircut day yesterday, never a pretty sight. Michael hates having his haircut, but it had got so long that it was just short of being long enough for hair bands, I dread haircuts, Michael screams and wails and fights, kicking and lashing out, then he starts vomitting...............he get's himself so worked up it is heartbreaking.........but it is one of those things that has to be done.

To be honest I don't know how else we can do it without him getting upset, we have tried everything that we can think of from bribery, to distraction, to cutting a little bit at a time, the hairdresser has sat in the sand-pit with him before now. We've tried using clippers, thinking that at least it would be longer between hair-cuts, but that was horrendous, would never do that again.

So the hairdresser just get's on with it. As soon as it's all done, the tears stop and he's fine. Which leaves us wondering what all the fuss was about!!!

But he had a bath and then we baked Bob the Builder cakes, which brought a smile to his face.

He's like this with G-Peg changes too, as soon as the Community Nurses walk through the door he's hysterical. Why do we put our kids through these things????

Monday, January 17, 2005


Michael at 3 days old
Michael now

Welcome to my Blog

I've set this blog up as a continuation of the website, there is too much going on in our lives to fit it all on one page of the website so I thought a Blog would give those who are interested the chance to learn more.

If you haven't visited Michael's website you won't be aware of the background history, I would recommend you read the website

It will let you know where we are, where we've been and how we got here!!

Let me introduce my family.

Me - Preemie Mum, in Human resources, the next generation.

DH - Preemie Dad, a Police Officer.

Son number one, N. is now 13 years old.

Son number two, J. is now 6 years old.

Son number three, and our preemie, Michael, is now 5 years old

And last but not least the baby of the family

Is our Daughter F. who is now 3 years old.

Welcome to our lives