Part 5…

We were stuck in hospital for months I spent all day and night with t with H in tow
He was such a hungry baby that the nurses used to feed him baby rice so I’d have a bit of respite from constantly feeding him.
One day I asked the registrar looking after t to check back through his notes and see if he’s had any brain bleeds as GOS has raised a concern over this and concerns for his development. She came back to me a day later saying there was nothing to worry about and he hadn’t had any brain bleeds. Thats ok then.

It was niggling at me though, he was just over 18 months old and he wasn’t rolling, he wasn’t sitting, he didn’t know where his feet were and he only says ah ah ahhhh. He wasn’t doing what H was already and t is a year older!

T was discharged at the end of summer on oxygen, we had oxygen at home and a bloody heavy little cylinder to go out and about with.
I eventually found out out about the brain haemorrhages by requesting sight of his notes, (which has to be agreed by two drs-thankfully they did agree) I found a page within ten mins of flicking

through that stated 3 ultrasounds taken on the neonatal unit from the 19th of january 1997 picked up 3 separate brain haemorrhages in 3 different areas….

I arranged an appt with the consultant who flicked through, found the same page and announced “well I think that conclusively proves he has cerebral palsy. I’ll book you into clinic for his next chest check up in 3 months. Bye”

stunned. cried. lots.

Had to tell husband. He was angry.

I complained to the trust because we weren’t told when he had the haemorrhages.
I had to buy a copy of his notes and I wanted to see what else they’d written.
like:~ ‘concerned mother is pregnant again situation will have to be watched‘   (why? )
‘no contact with parent all shift‘   (hello? I was there all day everyday!?…. )
‘concerned that access to the home will be difficult, GP arranged to call unannounced‘   (wtf? oh this is because I called the drs at the hospital ‘a bunch of incompetent half wits. hey ho.’)

Anyway, apparently they can withhold telling a parent certain details if they think they won’t cope with that information. And there’s lies the get out clause.

So t has chronic lung disease and likes to go blue and stop breathing, has a global development delay,is doubly incontinent, has reflux and on top of all that now has cerebral palsy. We find out from further appointments with specialists that he has spastic quadriplegia. He’ll never walk. his speech and language difficulties are probably to do with that also (although now we know that is because he is also moderately autistic but apparently that can have still been due to the brain injury)

loads more appts at a hospital of whom i’m uber distrusting now!
He had to have an op for his reflux, the surgeon mucked it up. To cut a long story short, she over tightened the entrance to the stomach so little, if any, food could be swallowed. She put the gastrostomy button and fixing balloon in the way of the outlet of his stomach so it couldn’t empty (one nuclear test showed seriously delayed emptying 6 hours for 20 ml radioactive stuff). He lost so much weight, we eventually got referred to GOS again where the amazing and lovely Prof Spitz sorted him out (and said he’d been butchered)
After that we had ops for tonsils, botox for his legs then major surgery at guys to release tendons in his hips, he’s had 4 operations for buried penis the recent one working a treat! and next on the list are his ankles and toes.
He was recently diagnosed as autistic but I must say the tests they use are not compatible for a disabled child with limited movement and severe special needs. They concluded he was of low intelligence according to their test conducted over two hours. I don’t care what they say, he’s certainly not unintelligent and is far from stupid!
So we will continue to be in and out of hospital, the slightest cold can propel us in there rather sharply.

H has his own problems as he became type 1 insulin dependant diabetic at the age of 4.
And when he had his tonsils out he haemorrhaged. 3 times. He’s had a ketone acidosis twice and passed out because of hypoglycaemia twice. They like to keep me busy I think
here’s my favourite pic of H with his lion (that he’s still got and he still cuddles when he’s not feeling well)

Now, I need a babysitter for one night in May. Any takers?

High..

Laura AWNTYM tagged me for the favourite song meme… and this is it

‘High’ by the lighthouse family.

I can’t listen to it though, the opening verse just sets me off.

” When you’re close to tears remember, Someday it’ll all be over[...]“

It was released at some point in the beginning of 1998 when t was very very ill in Great Ormond street hospital. It was a song that made me feel like there was hope, there was light at the end of the tunnel and hopefully what he’s going through will all be over soon and he’ll be fine. I’ve never got stupid over a song before but that one does do something and I wish it wouldn’t I do hate getting all unnecessary. I’m not even keen on the band singing it (I’m a ‘take that’ girl, and boyzone…and westlife… I said that out loud didn’t I.. Ahem!!)

So that’s my favourite song and why

Now to tag twitterchickenchums…..

mumsmuddyveg

Spicycauldron

Afaircoop

Seren9

what’s your favourite song and why!?

Part 4…

There we were in Great Ormond Street children’s hospital, with t in Paediatric intensive care and a newborn in tow. We spent the night in what could only be described as a cupboard. It didn’t matter though, we weren’t going to get any sleep anyway, although H would actually start sleeping from 8pm to 8am from 3 weeks old. The following Morning we were given accommodation by the sick children’s trust  in rainbow house, a home from home.http://www.sickchildrenstrust.org/documents/RainbowHouseweb.pdf

T was worsening and the nitric wasn’t having the required effect. They had him in an induced coma and had paralysed him. They were ‘pouring’ surfactant in him (repeatedly telling me its £400 a little vial) physios were trying to loosen the stuff on his chest. We went on for a week with absolutely no improvement, he was still hypoxic in 100% oxygen they wouldn’t tell us his chances because they ‘couldn’t call it’. They did sweat tests to check for cystic fibrosis, lumbar puncture  and a barrage of other tests I can’t even remember, all drew a blank, he had bronchiolitis and pneumonia but  there was no underlying cause for its severity except the chronic lung disease from prematurity.T was moved to a side room where we were told to spend time with him as it didn’t look good, say goodbye. They let me bring the baby into the room and I would lay H next to t, it seemed to calm him, it’s debatable whether t actually knew he was there or not. We had a further week of this ‘limbo land’ waiting for him to die or get better, it hung in the balance and there was nothing I could do.

A consultant decided to take a long shot and take him off the ventilator and put him on a machine called an oscillator. This is a machine that gave him 300 shallow breaths per minute and is less damaging to the lungs than a normal ventilator. It corrects hypoxia and it did manage to saturate his blood with oxygen,  he was on this machine for 2 weeks and he was improving. It was bizarre just watching his chest vibrate instead of fall and rise with the normal breathing pattern.

It was during this time that he had his first reaction to one of the new antibiotics they were trying to clear up the pneumonia. They’d tried a few but none seemed to be fighting the infection. So IV erythromycin was given. Well that was a BAD idea. He had an anaphylactic reaction to it, swelling/rash etc. It was the right place to have such a reaction though because he was already intubated. I guess I’m glad he had that reaction there instead of at home!

Once t was taken off the oscillator he went back on the normal ventilator, he was taken out of his coma/paralysis and stabilised. Then he was gradually weaned off it over a fortnight, he was still gravely ill but well enough to be moved back to the intensive care unit back home. So we returned that morning. Feeling that he was in safe hands, we didn’t follow t to the hospital, we went home to catch up on some much-needed sleep/bathe/ chill out with the baby before going back to the hospital in the evening- What a mistake that was.

On arrival at the hospital we were stunned not to find t on ICU which is where the drs at GOS had expressed he needed to remain for at least another two weeks, no, we find t on a general ward. Worse, we find him with no iv’s in, no oxygen and looking blue and struggling to breathe. The F1  (first year) doctor who received t that morning had decided to take him off everything. The consultant was called (I won’t lie, I was hysterical and screaming at the nurses while rigging up oxygen for him myself because the nurses had been instructed not to give him any!) Consultant arrives, takes one look at t and rushes him upstairs to ITU amid apology after apology.

Back to square one. Morons!

That evening we are back on route to Great Ormond street, where we go back to PICU (who were really not impressed with our local hospital) and to cut a very long story short we had to go through the whole ventilation/oscillation/ say goodbye/get better scenario again.

This time GOS decided to get him fully stable and not dependant on PICU before discharging us back to the care of our local children’s hospital-we were there for 3 months. It was during this time I was quizzed over whether he’d had any brain haemorrhages while on neonatal intensive care.  Of course I hadn’t been informed that he’d had any so I just said no. They thought he may have cerebral palsy but said if he had no brain damage from the birth then it probably was just development delay. We were on a general ward for our last months stay at GOS and although t was on oxygen he was so much better.

Back to the local hospital. On a general ward, where now when we went on the ward the junior doctors and nurses would all disappear! I’m scary…

..to be continued

Haiti

I received this email from my friend and am posting it on my blog as I want to encourage everyone to donate and spread the word for shelterbox.org. These contain stuff that is needed in Haiti, basic but essential, and colouring bits and pieces for children. Collectively we have already raised enough for two boxes, let’s see if we can make four!

From englishmum….

A group of my fellow bloggers and I have got together and created a JustGiving page entitled:

http://www.justgiving.com/Bloggers-For-Haiti

We are going to try and rally as many bloggers as possible to create a blog post on Monday (or before if you’re that keen!) about the wonderful Shelterbox.org and encourage as many of their readers, commenters, friends and family to donate. We’d love to be responsible for lots of Shelterboxes making their way to Haiti.

So let’s do it! Please please donate to shelterbox. We have, even my boys have pledged their pocket money. X

part 3

To summarise, t had quite a few problems due to his prematurity.The worst being chronic lung disease (broncho-pulmonary dysplasia). Gastro-intestinal reflux, bilateral inguinal hernia and global development delay.
Christmas day 97 however, started well, T who had just turned 1year old, opened some presents with help. He loved the wrapping paper and was playing in it. Baby H was only 2 weeks old and either slept thorough most of it, was screaming or was attached to my boob!
T went down for his nap at 12, he was fine when I put him down to sleep. When he woke up at 4 it was a different matter. He felt too warm, I took his temp and it was 38*, I rang the out of hours dr service and they said they could see him at the surgery at 6 and to give him 2.5ml calpol and try and keep him cool, ringing back if he deteriorated.
Which he did. rapidly. Within half an hour he was just really sleepy and he seemed to be working too hard to breathe, he had developed a tracheal tug and was using his intercostal mustles to breathe. He was projectile vomiting his feed. Rang the dr back and we went to the surgery. Dr said it was viral and to take him home and not worry, he’d be fine. I wasn’t convinced.
We went home and he didn’t improve, his temperature hit 41* and he had a febrile convulsion so we rushed him to the children’s hospital.
To cut a long story short, that night we ended up in intensive care. He was ventilated and on oxygen, his little body was working so hard. The team decided to paralyse and put him in a drug induced coma to let his body rest. Tests revealed he had rsv – bronchiolitis and pneumonia. We had an anxious couple of days of ‘no change’ in his condition. Harry was looked after by my dad who every 45 mins would bring him back to the hospital so I could breast feed him then take him away again.
Then new years eve t’s blood gases wouldn’t settle and he showed signs that he wasn’t getting enough oxygen even though he was in 100% oxygen. we were told the only option was to give him nitric which would enable the gas exchange to work better, but no one was trained at that hospital to do it. Without it he would die, we had to hope that great ormond street hospital had a bed in their PICU.
T was transferred to GOSH that day in an ambulance with a peadiatric crash team of 6, there was no room for one of us in the ambulance because the space was needed for the specialists. He arrived at GOSH just after we did at around 7pm.
He was such a poorly boy and we only got to see him briefly, late that evening, the doctors assessment was that he was gravely ill and he didn’t like his chances so we should sit with him for a while. Problem was i had a newborn and he wasn’t allowed on the actual unit because of the risk of infection to him. We took turns but H being such a hungry baby (on the boob for 45 mins off for 10, scream the place down, then back on) meant it was quite difficult. Added to this t seemed distressed if his dad was there talking to him and calm if I was there- which is what the drs wanted! so I was torn between the two. The hospital found us a side room to stay in that night as no accommodation could be arranged that late. we were there with just the clothes we came in a changing bag for baby and the Moses basket. It was the worst new year I’d ever had.

Part 2…

So t was very poorly. The consultant paediatrician said he was not likely to survive the first 24 hours, but he did.
He had a hole in his heart, his kidneys weren’t functioning properly and his lungs were very immature and kept collapsing. We were told the next 48 hours would be crucial. I had to visit  the neonatal baby unit in my bed as I was still so unwell. I couldn’t cope with it though, I just wailed.  I wasn’t allowed to touch him because I had ended up with a massive cold sore from the traumatic experience. Nothing prepares you for seeing your baby in such a desperate situation.

Machines were beeping and there were lines all over the place, in his leg, arms and neck.  He was on a ventilator in 80% O2  and repeatedly given surfactant. He was being fed intravenously and was receiving blood transfusions for days at a time. He was under the UV lamp for jaundice but his skin was so paper-thin you could see through it. He was sooo small. I had the most overwhelming desire to smell him, I don’t know why…Poor baby wasn’t due til the beginning of April and here we were in mid December. I remember it was snowing outside and inside my boy was struggling for life.

Over the next few days he gradually stabilised only to get an infection that took us back to square one. I used to spend my days sitting by his incubator cutting down the smallest nappies you could buy and fixing them with tape to make miniature ones! we did all his nappy changing, mouth care and tube feeds, I even sterilised my little finger so he could suck it….

The pressure from the ventilator caused a massive bilateral inguinal hernia, they went down to his knees and would need surgery further down the line. His hole in the heart was repaired with drug treatment, thankfully. His blood gases and temperature kept going all over the place and he was regularly dosed up with courses of antibiotics like gentomycin. We had nearly two months of this two steps forward one step back routine. Instead of planning for the future we just took each day as it came.

on the 19th january he had an ultrasound on his brain which revealed three separate brain haemorrhages (we were not informed of these til he was 18 months old though!)

When he was well enough to tolerate milk I found it impossible to express milk (I now know I wasn’t getting the ‘let down reflex’ but at the time I felt like I was useless) so he went on sma and got 2mls every hour vis a nasogastric tube

He was also weaned off the ventilator and put on to a cpap machine, it gave him a piggy nose. He constantly had bradycardic episodes while ’sleeping’ and was still oxygen dependant.

I got my first cuddle with him when he was 8 weeks old.

Around 12 weeks we graduated to nursery 2. This was a good step because if they thought your baby was going to die you’d stay in nursery 1. Both are intensive care nurseries but nursery 1 has more space to fit 12 people round an incubator for emergency critical care and nursery 2 was for stable critical care.

One parent we became friends with had her baby boy two weeks before us, and he moved to nursery 2 with us. He’d been a lot more poorly that t, requiring ops on his heart, lung and bowel. It was such a big day for her and baby, she was so excited!!  A week later I overheard the dr on rounds say he had gone into heart failure and would be moving back into nursery 1. My heart broke for her. She never got to take him home, he died in her arms a few days later.

T was still oxygen dependant, but was tolerating food and putting on weight. When your baby reached a kilo it was tradition to make a chocolate ‘kilo’ cake for the staff, I made a chocolate fudge cake but, when weighed, it was more than a kilo (I think they only complain if it’s less than a kilo) T had a major reflux problem but his feeds were made with a thickening agent to minimise it. The steroids he had been on since birth onwards made him look like a chipmunk but I actually began to feel like we might get him home after all. His hernia by now were mahoosive!

As the instances of bradycardia lessened we moved on to nursery 3. We were on the home stretch! I also fell pregnant with my second baby at this point although I didn’t know it at the time lol

Nursery 3 was great! we had 4 weeks there and I got to hold him when I wanted too, I got to feed him, with a bottle!!! and I got to dress him up in mothercare premmie clothes (which were still way too big) and do all the normal looking after baby things and I could just cuddle him. It was when he got his first proper bath too!

We had him christened in the hospital chapel with one of his nurses and we had two christening cakes one for us and we gave the unit a chocolate christening cake.  He was still on oxygen and half a million different drugs when we were eventually discharged but wahooo!

I had him home for 3 whole days before he went back into hospital for his bilateral inguinal hernia repair. He was in itu for 4 days after because he couldn’t be bothered to breathe (boys are lazy) but it seemed to work. We were home a week after that but then the hernia re-occured a month or so after and so he was operated on again in june. From July to december things were pretty quiet.

I gave birth to H on 7 December 1997 after a fairly stress free full term pregnancy (I didn’t even realise I was pregnant til I was over 12 weeks gone) he was a natural birth, no pain killers, no tens machine (took it off!! irritating as hell) and after 7 hours of labour I had a healthy bouncy 8lb 3oz baby boy. T wasn’t keen on this noisy creature though and would shoot it evil glares. H was breastfed and I finally understood why it hadn’t worked before when I tried to express milk for t and I also realised the let down reflex hurts!

I enjoyed having a nearly one year old and a newborn even though they did look almost the same size. I had no idea that on Christmas day the world was going to be turned upside down.

My First Pregnancy

I fell pregnant while a student nurse at Guys & St Thomas .Twas the most inconvenient time to fall pregnant (while using the depo provera jab) but hey, these things happen for a reason.Probably.
The Preganancy itself was not a good one. I was terribly sick, I didn’t just have morning sickness, I had morning noon and night sickness. The loo was where you’d find me. heaving and retching.  Loo hugging’s not a particularly glamorous look.
I didn’t drink any alcohol, I didn’t eat the ‘wrong’ stuff I’ve never smoked and stayed away from people that did. I did it by the book.
At 12 weeks I had the first scan and he looked like a little jelly baby! Then I had the triple test. As most mums will know, this test looks for Downs syndrome and spina bifida etc. Being 20 years old I was told it was highly unlikely I’d have any problems.
Then I had the phone call.
” hello this is xxx your midwife. I’m ringing to tell you the result of your triple test. Now I don’t want you to be alarmed …*me instantly alarmed*… but your test showed a likely hood of your baby having downs syndrome to be 1 in 20 and your baby having spina bifida as 1 in 10…Are you ok? * silence* I’ve booked you in with your consultant tomorrow morning at the hospital at 9am where we can discuss your options. try not to worry.” CLICK
Husband and I duly turned up to the meeting where I was strongly advised to have an amniocentecis. This was arranged and at the point of having the amnio I was 16 weeks pregnant.

It was bloody horrible. My husband sat behind me with his hands over my eyes, I don’t ‘do’ needles- especially not 12 inch ones!  during this it was noted that my placenta was ‘jelly like’ but no one knew if that would carry any implications but the consultant liked the way  it rippled if he tapped my tummy…. I was then left to go home ….and worry.
My results came through at around 20 weeks so I phoned the hospital and was told  the baby did not have downs or spina bifida and that they could also tell me the sex-if I wanted to know. hell yeah! it’s a boy!
My blood pressure had been fine so far during the pregnancy, low as usual 100/60. I had no protein in my urine and I thought all our hurdles were over.
I started getting the odd horrific headache in the evening but it never lasted long. I relayed all this to my midwife on the 18th december, and everything was fine.
I felt funny during the afternoon and instead of Dad taking me home where I would have been alone, he insisted on taking me to quiz night. One minute I was fine and within half an hour my ankles had disappeared,so I put them up. Then I couldn’t see and that headache was back. dad took me to his house to call the dr out. By the time we got home my eyes were bloodshot and I had a raging nosebleed. I said to my dad I thought I might have pre eclampsia, that I need to go to hospital. He drove me there and the rest is a bit of a whirlwind of memories.
I was first seen in a and e, where after checking my obs and reflexes everywhere with a hammer I was rushed upstairs to the delivery suite.
Blood pressure was 250/170 = not good

pulse was 130 =not good

clonus =not good

baby 26 weeks =not good

4++++ of protein in urine= not good
Next I know I’m in a dark room to avoid causing more fits (I thought I was cold) I had cannula’s and lines put in and drugs syringed in quickly, steroids for baby, stuff to stop me fitting/stuff to lower bp. Each one could be felt courseing through my veins, it felt like molten metal.
After another set of Obs (I’d given up paying attention by now) I was told baby had to come out now or I would die within the hour. I said wait for my husband to arrive. I don’t do melodramatics. Then they forcefully insisted.
Luckily Husband arrived and helped me sign consent form. The paediatric team popped up to say that it was very likely the baby would die due to how early he is and he only has a 10% chance of survival. Then they said that it would be better for the baby if I was not under general for the C section. I said sod off, I’m not being awake to watch my baby die…
I was in theatre at 0254 and the baby was out by 0305  thursday the 19th december 1996 weighing 701g.

I was on ITU for 2 days before going back to a room on the ward. I was not at all well.
Baby was not at all well. And so began a very long road on the neonatal baby unit, with lots of lows and the odd high. We saw babies die and we saw heartbroken parents.
I’ll write a bit more about our journey through nicu next time. I think that’s enough for today!

T, two days old

oooopps!

It’s been almost a month since I updated and i’ve been meaning to but not had time til now so I thought I should write something!
Busy month again re Dad’s stuff and hospital appt’s with T. Nuff about that though it’s boring!
Christmas Shopping/presents went well. Children were delighted with their ipod nano’s, itunes cards and audiobooks/music etc.
T has bought comedy dvd’s with his christmas money, the entire set of red dwarf, bottom, and now he has the fawlty towers dvd’s, john cleese makes him laugh til he can barely breath so not sure how wise that is…
H bought half of waterstones with his christmas/birthday money. His new years resolution is to read 9 books a month and get 4 books for reward. If he reads ten he gets 5.
I’m loving his book choices too, Stig of the dump, of mice and men, the silver sword, the hobbit, lord of the flies… the list goes on and it’s positively yummy, if you can call a book list yummy. However, this particular child gets excited when he gets a new book, sniffs it and exclaims “mmmmm I love that new book smell…” so I guess it could be yummy! I still think Robert Rankin’s ‘ the hollow chocolate bunnies of the apocalypse’ will go straight over his head but hey ho, Bloody fantastically funny and entertaining nevertheless..

This brings me on to Lush, well the ‘fantastic’ bit does. Had a plethora of lush goodies for christmas, My house smells like a lush shop and my snow fairy perfume makes me smell like candy floss and jelly beans. superb! A bit miffed that the order I placed on the 31/12 hasn’t materialised yet (with my freebies) but I guess that has a lot to do with the snow.

Which brings me on to chickens! who really aren’t keen on the white stuff! Although they must be happyish cos they are still laying and still jump on me when I go to let them out/feed/water/demuck them in the morning, I think they’re hoping I might magically sprinkle mealworms at them (cos sometimes I do which is probably why all 7 of them jump all over me). Quails have been moved to a cosy corner in the shed because it’s too cold for them outside, mainly because they are stupid and just stand in the cold rather than getting in the warm nest boxes. cute but not clever.

Bit like the dog, who is loving the snow!! haven’t managed to get a decent pic of him yet. I think we need a bit more snow ;o)

a quickie….

Again it’s been a busy week with no sign of slowing up.
To be honest I’ll be glad once all this circus dance currently being played out regarding Dad’s death stops.
Seriously! it stops me sleeping, focussing on how he died results in my mind replaying events over and over and over again. My brain feels like it’s churning those horrid memories, ‘what if’s’ , ’should haves’, ‘could haves’ and ‘why didn’t i’s’ round and round like an industrial tumble dryer. I can’t make sense of any of it any more because when I think I have, another ‘but if’ rears its ugly head. I feel at fault. I’m not but I feel it. And being gagged until the inquest makes it even more difficult because I still can’t spill my guts and get it all out. I can’t put it all to bed.
oh and the xmas decorations are all up….I know it’s a crappy tree but my heart’s just not in it this year…bah humbug lol

that's as good as it gets this year.

some pooch pics

just because…

blue at sea side (had to carry him over shingle...)

blue being all girly

 

 

blue being a tart

big nose!!