Blood tests and a super hero

Did you read my recent post about going to the doctors?

Well today surpassed all of that pride I have felt over recent trips. Today Will had a blood test as part of his genetic testing to try and find out what it is (if anything) that has caused his hearing loss and if it will affect future children of ours.

This is his shirt, and I can tell you that the badge does not do my wee boy justice.

We went in and Will was placed on my lap with a cushion on his. The nurses rolled up both his sleeves and chose his left inner elbow to take the blood from. We discussed anaesthetic but because of his eczema the cream would have taken an hour to take effect and I didn't want to hang around that long, so we went without. Eeeeeeeeeeeeekkkk.

There was a 'play expert' with bubbles and a finger puppet kitten to distract him - he was having none of it.

Will watched the needle go in to his little arm, watched the skin around it turn red and fiery and watched the vial fill up with his own blood.

He made not a peep. He had no dummy, no snacks, no distraction, and there wasn't a tear in sight.

The staff were astounded.

And then, AND THEN, when they had removed the needle and put the plaster over the hole, he offered them his other arm to do the same to that.

I am pretty sure that gives him super hero status, in his Mummy's eyes at least.

Diagnosis Day

It was over a year ago now and I have not talked about the day William was diagnosed as deaf since the day itself. To anyone. It was, easily, the worst day of my life. And, as you may have read here, I have had some pretty tough days.

It was his fifth hearing test. We had had four inconclusive tests because the baby has to be asleep for the entirety of the testing which can take up to an hour. If you have had children you probably know that young babies do not sleep on demand and are easily woken, especially if you put 5 of these around their skull when they are already asleep.

And, despite people around us having their babies pass their hearing tests whilst awake but breastfeeding or being cradled into stillness, we were constantly reassured by the health professionals that our baby probably wasn't deaf, he just needed to be asleep for the testing to work.

So, on test 5, he managed to stay asleep. When he awoke, the audiologist was very quiet.
Shaun said to him "Did you get it?"
He said "It doesn't look good".
I said nothing
My head said "What the FUCK does that even mean????? Is he deaf or not deaf???? I don't want to know how it LOOKS, I want to know how it IS"

In time the audiologist told us that William had moderate hearing loss in his right ear and severe to profound hearing loss in his left. They are not able to test to the highest level of sounds in babies, lest they damage the hearing (the irony is not lost on me) so we won't really know about his left ear until he is older. For now he will wear hearing aids on both ears. If he turns out to be profoundly deaf in his left there will be no point in a hearing aid on that ear.

My world had literally stopped turning. My heart had broken into more than a million pieces. I have never felt grief or sorrow or pain or guilt like it. I kept him close to me and sobbed 'I'm sorry, I'm sorry' over and over again. My poor baby.

I was told I needed to take him to hospital to have blood tests taken. I did not need an appointment, I just had to rock up and they would do it. No time to waste, I thought, I'll go now. This was one of my poorer life decisions.

It took me an hour to get to the hospital.

Blood tests at the hospital are on a ticket system. You take a ticket, you wait, they call your number off you go. I waited for an hour and a half. William did a poo. A poo that went all the way up his back, requiring a change of clothes. I couldn't fit my buggy in the toilet to get to the change table. By the time I had got in and changed him completely, we had missed our turn.

I went up to the curtains and pleaded, begged, that I didn't have to take a new ticket, that they would fit me in. The looked at me and said 'you or the baby?' I nodded 'the baby', the response 'we don't take blood from babies'.

I sobbed. Standing in the middle of a crowded hospital I sobbed and sobbed until I couldn't breathe. My baby was deaf and I didn't know why. All I knew was that it was my fault and that by not getting these blood tests I was failing him, again.

I found a reception desk and begged them to help me, to tell me where to go, to give me an appointment, to make the day easier. They sent me to paediatrics.

Paediatrics are obviously used to hysterical mothers because they knew how to look after me, to calm me down, to make it better. There was another long wait and eventually they took blood samples from the back of Wills hand and we left, still crying.

I got home at 5.30 that evening. Our hearing test appointment had been at 9am.

That was the longest day of my life.

The next few days, weeks maybe months even, I remember crying a lot. Sitting on the floor and crying. I remember thinking I would never get up.

It breaks my heart to think of how impossible that day was but it mends it to think of how far we've come. It's been a battle of course but we have a beautiful, smart, engaging little boy who runs and signs and talks and communicates and laughs and who loves life and who makes me so glad I did get off that floor and carry on because he is so very, very worth it.

My Miscarriage

I am writing this post in conjunction with the Mumsnet campaign for better miscarriage care.

I found out I was pregnant when I was about 5 weeks. It was unexpected, I had only had one period since having my first baby 8 months earlier. I was sick and tired, more so than I remembered being with my first.

The nausea was unbearable most days until about 7 weeks and then it subsided but I still felt tired. At 9.5 weeks we flew to NZ, I felt very nauseous all through the flight but put it down to stress of travelling that far and with a 9 month old baby. We arrived on the Saturday, on the Monday I went to the bathroom and there was a spot of blood.

We went to a local GP who assured me that because I had carried one baby to full term this was probably just spotting and very unlikely to be a miscarriage. The doctor asked me if I had any pain, if it was cramp like. I lied and said no, I was not ready to lose this baby, not here, not so far from home. They took some blood to measure my pregnancy hormone levels and sent me on my way. If it was to miscarry, they said, it would just progress like a period and be over in a week.

I didn't have any bleeding for the rest of the Monday or the Tuesday. On the Wednesday I went to the bathroom and there it was. Blood. Lots of it. Like a heavy period. I was losing the baby. The emotions were impossible. I was devastated and we were on holiday. We still had to meet people, see people, socialise. I still had to be a Mum to my little boy a million miles from my home, my Mum, my friends.

And then the pain started. It was excruciating. It was contractions. I am so grateful I had already had a baby and could understand what the pain was. I felt like I was in labour as my body tried to expel the fetus. On the Thursday we were supposed to fly from Wellington to Auckland but the pain was so very, very unbearable that I went back to the doctors. This was not progressing like an ordinary period. The bleeding was heavier than any period I had ever had and the pain was only comparable to labour.

The doctors wouldn't see me and so I went to the hospital. They felt my tummy and examined my cervix. Because I was between 9 and 10 weeks pregnant there was a high chance that the pregnancy was ectopic. There was a chance the embryo was rupturing in my fallopian tube. There was a chance that I would have to be operated on. There was a chance that I would have to have my fallopian tube removed. There would be a chance that I wouldn't be able to have any more children. They put me on a morphine drip to numb the physical pain.

I was sent in an ambulance to a bigger hospital where they could do more tests. I had an emergency ultrasound. There was a fetus. It was in my womb, where it was supposed to be. There would be no operation, no irreversible damage. The baby was just 6 weeks gestation. No heartbeat. But that could be because it was just too small to see one. There was hope. Except I knew that there wasn't. I had lost too much blood, been in too much pain, no good was to come from this.

They took another blood sample to compare my pregnancy hormone levels with the one taken a few days earlier at the doctors. We went out for lunch.

We went back to the hospital to be delivered the inevitable news. The baby was dead. It's heart had stopped beating at 6 weeks gestation. It had been dead inside me for 4 weeks, a month. I had no idea. They call it a missed miscarriage.

I took a full 10 days for the bleeding to stop, I was prescribed super strength codeine for the pain. On about the 5th day the codeine didn't touch the pain, I could barely walk. But we had people to visit. I was in my partners God Mother's house. I went to the bathroom and my sanitary pad was saturated after only an hour or so. I sat on the toilet and had an overwhelming urge to push. There was a plop. There it was, my fetus. In the toilet. It was the fanciest bathroom I had ever been in. I came out and went to the beach, telling no-one what had just happened.

After that day the bleeding and pain eased and eventually stopped. The heartache has neither eased nor stopped and I doubt it ever will.

For me the worst thing was being so far from home and my family. I cannot fault the care I was given.

People band around the word miscarriage like it's something simple. I always thought it was just a late period, especially miscarrying before 12 weeks. For me it was like labour but with no happy ending. People need to be made more aware of the intensity of the pain, both physical and emotional that comes with miscarrying.

Please, read the Mumsnet campaign for better miscarriage care and support it. It is something that so many women will go through and we need to make sure that support for both the physical and emotional pain is both available and appropriate.

I mean, seriously?!

I am going to start a 'series' (get me!) about things that happen that make me think 'I meeeeaaaan, seriously?!'

I mean, seriously?! Thought 1.

Our Government are trying to save money because of the mass of debt they have managed to build up. Fair enough but someone should probably tell them about St Ann's Hospital in North London.

I receive a letter in the post telling me William is due for a revue appointment with a number to call. I call said number and explain the letter to the receptionist.
She says: 'I'll send you an appointment in the post'
Me: 'Can you tell me when it is for?'
Her: 'No, you'll receive a letter in the post'
Me: 'And if I can't make that appointment?'
Her: 'Call back and we'll send you another appointment'
Me: 'Right'
Me (in my head): thatisthemoststupidstystemihaveeverheardofwhatareyouanidiothowdoesthatevenmakesenseyouarewastingsomuchofmyprecioustimeandyou'veruinedmydaybymakingmemad

So, just so you are clear, the NHS, in their job culling, hospital closing down, cost cutting ways have approved a system where
a) a letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
b) I call them. COSTS - my phone bill
c) another letter is sent out COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs
d) I probably can't make that appointment what with all the other appointments, speech therapy, sign language lessons, teacher of the deaf lessons, playgroups, swimming etc, so I make another call COSTS - my phone bill
e) yet another letter is sent out. COSTS - paper, ink, energy from PC, energy from printer, labour costs, postage costs

I mean, seriously?

Why not call me, offer an appointment and we can discuss and conclude right then and there? Fools.