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Friday 7 December 2012

Epilogue

It's been a long time since I last posted on this blog and I don't know how many people still read here but I thought it was about time I updated so that people aren't left wondering what happened to me.  We finally had a baby girl in July after another hyperemesis gravidarum pregnancy during which I spent most of eight months in bed.  (I have a hyperemesis gravidarum blog on which I attempted to record the pregnancy but it is rather sparse as I was mostly too ill.)  Little Girl is absolutely delighted to finally have a baby sister and we are so thankful for the blessing of another child.  Although I will leave this blog up, I feel like it is part of a different chapter of my life - the one before two years containing 17 months of pregnancy (over four pregnancies) and 12 months of hyperemesis gravidarum (over two of those) but only one baby - so I will no longer be blogging here.  I do however intend to continue my hyperemesis blog.

While I am posting I also want to thank Clare (who blogs at Battlements of Rubies) and Elena (who blogs at My Domestic Church) for all the times that they have posted about the loss of their babies.  They are two Christian women who I admire greatly and my memories of things that they have said in the past have helped me far more than they know since last April.

Tuesday 19 April 2011

Isabella's Story

"To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance."

We found out at a routine scan at 21 weeks that Isabella had died. I had wondered when I had a very early scan (due to hospital admission for hyperemesis) and they told me I definitely wasn't as far on as I thought whether there was something wrong as I knew for sure my dates were right but I half dismissed it on the basis that if I had hyperemesis everything must be okay and half didn't care since I was so ill. I wanted to ask about it but nobody ever discussed the scan with me and it was hard enough trying to get anyone to take how ill I was seriously so it was way down the list of priorities. Later I on in my pregnancy I became half convinced that I would go to the 20 week scan (mine was at 21 weeks because they said I wasn't as far on as I thought) and find out the baby had died. I was so worried about it at one point that I read quite a bit online about what sort of treatment options the hospital was likely to offer in such a circumstance.

On the day of the scan I seriously considered cancelling it. I hadn't felt movements for a few days but since I'd first felt them at 15 weeks I had sometimes gone a full week without feeling anything. I knew fairly soon after the scan started that there was something wrong. Instead of clicking away taking measurements, the ultrasonographer seemed to keep trying to get a better view. She did a femur length measurement and then asked me if I'd previously had small babies. After a little bit more time looking, she told us that she was sending us to have a scan with someone else on a different machine because she couldn't find a heartbeat. I was glad that unlike my eight week miscarriage, she spoke to us both and we were given a private room to wait rather than having to sit in the public waiting room.

After the second scan we had to wait for a while to see a doctor. He ran through the treatment options (which boiled down to induction or waiting to go into labour), talked a little bit about the option of having a post mortem and answered the few questions we had been able to think of in the short time. I asked if they had any information leaflets they could give us and they gave us an appointment to go back later that week to discuss things after we'd had time for the news to sink in.

When we got home I was disappointed to discover that I hadn't really been given any useful information. All but one thing was about post mortems and the one thing that wasn't was a printout about miscarriage treatment options which said it expired in 2004. It was actually about earlier miscarriages anyway as it included the option of surgical management which I had been told wasn't an option at the late stage I was at. I felt frustrated that despite their response to my complaint after my early miscarriage last year women are still not being given proper information about the practical aspects of what happens, what to do afterwards etc.

Searching online I was able to find some of the information I wanted but this was not without its downfalls. I found the Miscarriage Association website to be helpful to a limited extent but the SANDS website to be much more helpful. When searching for "late missed miscarriage" I would find websites stating that up to 20 weeks is a miscarriage and beyond 20 weeks is a stillbirth but in the UK legally if your baby dies before birth prior to 24 weeks, it is "just" a miscarriage. This was completely different both physically and emotionally to what happened at eight weeks and the term "miscarriage" to me does not communicate it accurately.

When we went back for my "appointment" they didn't seem to know why we'd come. Even though I'd said I wanted to opt for expectant management, they seemed to think I'd come because I wanted to be induced and we had to wait almost an hour for the on call doctor to come and speak to us. We did get some of our questions answered but it seemed to be very difficult to obtain any information about arranging for a burial. We were then sent away without another appointment and told to phone the PAU and come in when I was in labour. (I actually had no intention of going in until after the birth but we hadn't told them that.)

The following day I had contractions and thought that it was going to happen but after I went to bed, they gradually became less frequent and by the following afternoon had gone completely and nothing happened for just over a week.

On the Sunday morning I felt slightly achy in a period pain kind of way but only very faintly. We went to church and had planned to go for a drive and sit in the car somewhere nice to eat our lunch afterwards but my husband was tired so we ate at home and he lay down for a half hour rest to see if he would feel up to a drive later on. I decided I might as well lie down too and after lying down for a few minutes I felt so sleepy that I told him I wasn't bothered about going for a drive after all.

A couple of hours later I woke up feeling a bit more achy and when I turned onto my side it was fluctuating rather than constant. I wondered if it might happen that night or the following day and since I was due a bath to wash my hair, I thought it would be a good idea to do so before dinner. I started running the bath and sorting out a towel and clothes etc. Meanwhile my husband decided to get up to make the dinner and he brought me a cup of tea. I had a few sips and then decided to go to the toilet and get undressed to get in the bath so I put it down on the window ledge.

At that point, my waters broke and I somehow managed to get myself onto the toilet so that it went mostly down the toilet or was soaked into my sanitary pad (or on my hands). Fortunately my husband was only just on his way back downstairs so heard me shout to him to come and help and came back up. I told him I wanted to get in the bath so he needed to help me get cleaned up and get my clothes off as I had blood stained waters on me. We'd more or less got sorted out when I suddenly realised she was being born so I said, "She's being born." He asked me what I wanted to do and I said I didn't want her to be born on the toilet so under my instruction, he grabbed an old towel to put on the floor which I kneeled on and she was born into my hands at eight minutes past four. The cord was too short to put her down easily so he cut the cord and I cleaned her up a little bit. I laid her on a muslin and my husband took a few photos of her while I waited for the placenta to come out. After the placenta has come out, I wrapped Isabella up in the muslin and went in the bath while my husband tidied everything up and laid Isabella in a box we had prepared. After my bath we took photos of Isabella being held by each of us.

All this time (maybe 25 minutes in total) Little Girl had been happily (and loudly) reading about Noah's Ark to her toys in the downstairs hall and hadn't noticed or been troubled by our disappearing. Since she had expressed a desire a number of times to see Isabella, we had decided that as long as we felt she looked okay, we would let her see her once we had wrapped her up with just her face showing. (I had been worried that with having been dead for a while she might not be okay to see so I was relieved she was okay.) We went downstairs and told her and asked if she still wanted to see Isabella. We showed her a photo first before showing her and she held her on her knee. She wrapped up a teddy bear she had as a present for Isabella and then unwrapped it for her and showed it to her (and showed her a few of her own toys too).

We had dinner and then got packed up to go to the hospital. The PAU was closed because it was the weekend so we had to phone the labour ward instead who told us to go them when we got there. Annoyingly they seem to be incapable of reading your notes so I had to explain everything to the first midwife who was dealing with me. Both she and the next midwife (we arrived just before shift changeover) seemed to find it odd that I hadn't had time to get to hospital but everything happened so quickly that if I hadn't been in the bathroom already I wouldn't even have made it there. I was very glad we'd planned for it to be at home as it meant we were prepared when it did and it gave us space and privacy and time with Isabella after she was born which I don't think we would have had in hospital. We were also able to take much nicer photos than the ones the hospital took. After having various checks, blood tests and swabs, I was discharged about three hours after we arrived.

In many ways, the timing couldn't have been better. It happened on a Sunday which I was glad about. My husband was not only home but happened to be close enough to actually hear me when I called him as if he hadn't, he wouldn't have been there for the actual birth. He also had the day off the following day which meant he didn't have to either go to work or phone customers to cancel. We were able to sleep in the following day and I actually slept better than I had in the previous two weeks.

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong."

Wednesday 16 March 2011

Hyperemesis Gravidarum

In case anyone is wondering what happened to me, due to hyperemesis gravidarum I am unlikely to be posting between now and August.

Friday 19 November 2010

Pro-lifers You Can Make a Difference Now!

Whilst I find the whole concept of using an internet poll to decide whether to have an abortion abhorrent, I feel I must urge everyone possible to vote for this baby to live:

http://www.birthornot.com/

You will need to copy and paste the link as I don't want a live link which would track back here.

I'm tempted to write more but since I am extremely angry I shall restrain myself - I think the site speaks for itself.

Tuesday 9 November 2010

Until We Meet

(To my unborn children)

Loved and lost…
…so brief a spell on earth

A candle flickering briefly in the darkness

You touched my womb but a moment
My heart forever

No bump
No birth
No baby

Did I imagine you?
O happy dream!
Joyous Summer!
Now Winter comes
I feel the cold.

Did you know before you left me?
Did you hear my voice
my heart?
Did you feel pain?

I miss you.

You never saw the sun or moon
Never knew the joy of spring
You never saw your big sister
Or knew the joy of love and laughter

But one day I will come to join you
Will you know your mother's face?
God chose to take you straight to heaven
To spare you from the pains of earth

For unto everything is a season
A time to be born and a time to die
You never knew grief and mourning
Never had a need to cry

I won't forget you precious babies… take good care
until we meet.

Friday 27 August 2010

Horse Boy Camps Worldwild - One Family's Experience

This is a guest post written by my friend. Having worked with children with autism myself I am appalled at the treatment of her family for what I would consider to be fairly "normal" and not particularly extreme autistic behaviour.

My uncle saw an article in the newspaper promoting the Horse Boy Camps and offered to send us there if we were interested as I have a 13 year old Autistic son.

It was terribly expensive, £1200 for 5 nights b&b - but finding somewhere able to cater for people with autism is incredibly hard, so that's the price you have to pay.

I read Rupert Issacsons book with interest, and we were able to book to go to the camp in Scotland running 24th to 29th July.

We arrived after a 7 hour journey on Saturday and a summary of our trip is here below;

From the booking it was a little disorganised, but they were in the process of one leader, Rhoda McGovern, leaving and a new one, Gillian Naysmith, starting so we thought that was just a minor blip.

We arrived at Ardlamont House on Saturday evening, a beautiful huge stately type house with attached cottages. We thought we were in a cottage, but we'd been told wrongly by Rhoda, and were in two rooms as the main house. Again, a bit disorganised but not a problem.

The house was beautiful, but not at all child or autism friendly with knickknacks all over - but the house owners were also apparently experienced in dealing with autistic children and adults, so obviously knew what to expect if they're opening their house to them.

Then we find out it's not b&b, but self catering. We'd brought other meals but not breakfast stuff and the nearest shops were 30 miles away including a ferry crossing. The other families complained and after the 'organisers' having some chats with the owners, they decided they would provide breakfast after all.

My party was myself, my severely autistic son Joe 13, my daughters Olivia 9 and Violet 18 months old. My Mum also came with us as my partner was unable to get the time off work. Gillian was there with her partner, her 9 year old daughter and her 6 year old autistic son. Another family had a 5 year old autistic son and a 2 year old daughter, and there was a lady with her 3 year old autistic son.

Saturday night the volunteers took Joe and Olivia and some other children up to the stables to meet the horses. We had some dinner and a lovely nights sleep.

Sunday we had a lovely cooked breakfast - Joe was a little unsettled and a little bangy but no where near as bangy has he could have been.

After breakfast we went up to the stables, and had horse and carriage rides around the estate. Joe observed the horses as I expected, but was quite happy with the volunteers watching what was going on - a lovely morning.

After breaking for lunch, we went back to the stables to ride down to the beach. Joe again observed, getting a little closer to the horses but not too close. Olivia & I got to ride down to the beach, then once at the beach everyone took turns riding. A couple of the little ones got onto horses, Joe and the 5yo boy again observed.
After a while Joe took me over to one of the horses and stroked it, which I thought was a breakthrough and I thought after a few days he might actually get onto one. Olivia & Violet were having a brilliant time getting to ride and play on the beach with plenty of people about to play with/help with Joseph so I could play with her.

Then we had some free time. We sat in the garden of the main house playing with the dogs and chatting, again a lovely afternoon.

Joe was quite happy outside in the garden and I went in to make a cuppa and start dinner while some of the volunteers stayed outside with Joe. Then Olivia came running in, Joe had smacked and broken a little pain of glass in a window. I went out to see what had happened and one of the paid staff, Karen Thursfield, said he was sitting there, very calm and chilled, when he got up and ran at the window.

It turns out (Olivia & a volunteer, Charley later told me) that this woman claims to be a 'healer' and when everyone else but her had gone inside, sat close to Joe and started waving her hands around his head/body & chanting, he'd jumped up and ran away distressed! He doesn't like strange people in his personal space and doesn't have the ability to tell them.

He was quite distressed after this but again, not as bad as he could have been, and calmed down and came in to eat dinner with us.

After dinner, the Gillian & Karen came into the kitchen where me & mum were doing our dishes. They said that they'd had a meeting and suggested we leave as this 'situation' isn't helping Joe as he is very unsettled. I said it's day one, he's autistic which means he doesn't like change to routine but for 95% of the day he'd been perfect. They said that they'd spoken to the Rupert Isaacson, and he'd also suggested we leave.

I was absolutely raging and told the organiser exactly what I thought of her and the organisation. I told her they were aware of Joes age when I booked, and if they only welcome younger easily managed autiistic children they should have said.

Interestingly, they've since changed their website. When we booked it was "open to all families who have children on the autistic spectrum'. Now it is for children on the autistic spectrum aged 2-12.

I mentioned a full refund and she said I could discuss getting a partial refund.

Not just because he's my boy, but in total honesty the other autistic children were a lot worse behaved than Joe, but they were all small enough to be picked up and taken to their rooms out of sight.

Mum suggested to them that maybe we're being sent home because they're worried seeing a 13yo autistic boy is worrying the other parents because they're seeing what they face in the future.

Two of the volunteers were absolutely devastated by the treatment we received.

One of them, Charley, was an absolute star. She was only 24, but works with autistic adolescents in Manchester. She was absolutely brilliant with Joe and you could see she was the only person there with any real experience. She'd told the organisers that they were being ridiculous and that she'd dealt with much worse behaviour than Joe was displaying but the organiser told her she'd been desensitised due to her job - an absolute insult to her and to my family.

Since we've returned, we've been passed from person to person with nobody taking any responsibility. The partial refund seems to have been forgotten. We're £1200 out of pocket and my children will be going back to school next week with only sad memories of the summer holidays.

I'd hate for any other family to experience similar treatment.

Be aware, these Horse Boy Camps are only suitable for you if your child is the 'right' type of autistic, and under 5' and 5 stone so you can hide them away when they're being 'autistic'.

Monday 2 August 2010

My Web Wanderings (weekly)


Posted from Diigo. The rest of my favorite links are here.

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