Thursday, 13 September 2012

When is the stork coming?

William's speach is coming on so well. We can sit and have little chats and most of the time they are very light hearted or really quite abstract and amusing.

William has been really into Disney films these past few months, and one of his favourites is Dumbo. We watched this when I was pregnant with Harry and I used to get emotional watching Dumbo's mother being carted off away from her baby, I never realised how that feeling of separation could be so painful.

Anyway, we used to talk about the baby animals being delivered by Mr Stork and that had happened with Harry... Mr Stork had delivered a baby to Mummy's tummy, and we had to wait until he was ready to come out. William and I talk a lot about how we miss Harry and how he was such a poorly baby, and how he is looking down on his big brother, with the angels, up in the sky. We also talk about how Mummy still wants for William to have another brother, or a sister. I jokingly said to William "oh I wonder if Mr Stork has bought us another baby William?" during the obsessive two-week-wait period of my last cycle. We talked about William's role with a new baby and he was excited, just as he was when we were expecting Harry.

The subject changed, I made lunch and when I was clearing away, William was stood in the patio doors looking up to the sky. "Mr Stork? Oh, Mr Stork?! Over here Mr Stork!" William was calling up to the seagulls flying over our house. Oh dear, how will I explain this one? I told William we will have to wait and see if Mr Stork will come.

I was talking to my bereavement counsellor about my obsession with getting pregnant again, and how I worry that it is all I seem to think about. She said, maybe the soul of your next baby is looking at you, and thinking Mummy you're not ready for me yet. But when you are, I will be there. I feel ready now, and perhaps for the past few weeks I haven't been. I am such a control freak, that all this "leaving it to chance" business is a bit too much for me!

Before I had William I had been diagnosed with Polycystic Ovaries (PCOS). It was a shock to find out we were pregnant when I had been told by my consultant "you will struggle to conceive naturally". We hadn't been very careful and when I was two weeks late I thought my PCOS medication would need adjusting. But no, I had somehow got pregnant. It was a shock, we had not been together long, and were weeks into an engagement. But now, we wouldn't be without our little Will, and he truly has been my saviour throughout this dark time. He helps keep my mind busy, and makes me smile a lot.

When we lost Harry and the consultant said to me, when you are ready I'm sure you will have no problems conceiving again, I kept thinking about my old consultant's words about struggling to conceive naturally. And now, every month I am obsessing about ovulation, and period due dates but what if my PCOS is back? What if I have a problem that I didn't have before? I don't want to just "wait and see"...

Sadly, another month of trying and all the hopes and prayers for another pregnancy were shattered one morning this week when I woke up and realised I had my visit from Aunt Flo. Crushed and back to feeling empty again... When William was asking about Mr Stork later that day, I explained to him that Mr Stork is on holiday, and hopefully he will come and see us when he gets back. The start of another cycle begins, and let's hope this is our next chance...

(I have put myself back on my metformin mediciation for this cycle to see if it makes a difference...)

Friday, 7 September 2012

Not just a big old whinge bag...

I mentioned in my last post that I had written a complaint letter to the hospital and had a meeting with the hospital as a result.

I had not planned to write a letter initially, as I felt that everything that happened was "just one of those things". It wasn't until I explained to a lady I see for bereavement counselling what had happened to me and as a result, to Harry that she felt that things were not done as they should've been and that I should write a letter of complaint to bring these issues to the attention of those who need to know.

We spent a long time, discussing the minute by minute events and created a document outlining the facts of the day, and how it all made me feel. Once we had completed this document, I wrote a list of all the things that I felt were sub-standard, and the actions that I felt were appropriate to remedy those failings.

I bravely emailled this massive work of art to the hospital and waited for a response. I used to work at the Westcountry Ambulance Service Complaints Department so I had a good idea of what to expect, a holding letter initially, followed by an investigation into the areas raised and then a "I hope you find this to your satisfaction" quote thrown in towards the end. It was to my surprise, that I received a phone call on the next working day from the Senior Midwife at the hospital, who wanted a meeting to discuss my letter. A meeting? Wow. We never offered meetings to anyone who complained at the ambulance service. At least not before we had sent out any kind of explanations.

I accepted her offer of a meeting and went along prepared for a bit of a fight. I felt like I was doing this for Harry's sake, and to save the lives of other babies who may experience the things I did. I was nervous waiting for her to come down to the foyer to meet me, but when she did, she immediately put me at ease. Unfortunately, her office was right in the pre and post-natal ward where I spent a good deal of time in my pregnancy and it all felt rather bizarre being back there again.

Anyway, we talked about the areas where I felt midwives and doctors had become complacent during my many visits to the hospital complaining of a bleed, and how on earth during the five scans I had that the insertion of my cord was not spotted, about the incredibly rude attitude of one of the doctors that saw me, about the fact that some key facts were not recorded in my notes, about how no one seemed to read my notes at all and how I was left for four hours with no idea I was bleeding.

I really, truly expected her to say that the staff were always acting within guidelines and it was all in my head, making a fuss. I had let out a massive rant onto paper. I was just a big old whinge bag.  But, no! I was right, things needed to change, people needed to be reminded of the policies and procedures in place and some policies need to be reviewed as a result of my case. I already knew that the hospital were undertaking an investigation into what happened and have been working with the lady who is heading up the investigation, giving her my account of what happened and also providing her with many questions surrounding my care. The lady I met with at the hospital is quite involved in this investigation, and told me that the issues raised in my complaint will be included in the investigation, as action points to learn from. This investigation is going to be presented to me by way of a report, followed up with a meeting with the hospital staff to run through it with me and make sure I completely understand what they are saying. The lady I met with said to me "when you read this document, it may be quite a shock". I asked her what she meant. She told me "there are going to be a lot of things that need to be learnt from, things that should've been done differently, and this is a learning process for us, to improve our services". That stuck with me when I headed back to my car. "a lot of things that need to be learnt from, things that should've been done differently" how am I going to feel when I read this report? I think I am going to feel angry.... it feels like a catalogue of failings that have cost me my son. The saddest thing is though, that what has happened, has happened. It cannot be changed. I have lost my son and there is nothing that any remedial action can resolve. All I can do is try to help others to not have to endure this pain... The report is due at the end of October. I will keep you informed.

The Concept of Time

Tomorrow, it will be three months since I gave birth to my baby Harry. Three months? It feels very strange. Three months...

If Harry had been the healthy, happy baby that he should have been had vasa praevia not been the cruel condition that it is, he would be reaching many milestones by now. He would be smiling now, rolling over, maybe even sleeping through the night (not so, if he would've been anything like his older brother!!).

In some ways, three months feels like no time at all. People will say to me "well, it has only been three months" when they feel I am expecting too much of myself. They tell me it is still very fresh and raw.

In other ways, three months feels like a lifetime. A lot can happen in three months... Let me summarise my three months: I was induced, expecting my beautiful baby boy, and after suffering a horrendous bleed was given an emergency c-section to deliver Harry, who was born limp and lifeless. After being resussitated he was given intensive care on the NNU. Everyone in our families met Harry and we said goodbye to him 26 hours later. Then, I had to endure the painful recovery from the c-section, plan and organise a funeral for my son, I set up Harry's Trust and account to receive the thousands of pounds that were donated, my mum cared for William and I, and then we returned home. I tried to get my life "back to normal". We held the Trust's first event, the sponsored walk in Exmouth and received some lovely articles in the press. I had my hospital debrief, which sparked a campaign for change within the NHS. Then we had the Fete, then I wrote my very long letter of complaint to the hospital. I met with the lovely SNUG group and had a balloon release. This week I have met with the hospital (I will write a separate blog about that) and now am involved with the screening process change for Vasa Praevia. Amongst all that, I have managed to lose over two stone, have taken up yoga, raised over £5,000 for charity, organise a black tie event, (try to) potty train my toddler and keep a home and marriage together, with another funeral, a wedding and an MOT thrown in. Wow. I have been busy. And that is probably why three months feels like a lifetime. Because I have been filling my time. Even though I have been doing so much, just managing to get through each day is an achievement to me now. I have managed to keep it together for another day, I am surviving and I am coping.

As I have mentioned before, seeing baby boys is very hard for me. It started off by seeing newborns, it would be very hard for me. Now, it is any baby boy that looks like he would be the same age as Harry would be. I saw a dear little boy in a shopping trolley a few weeks ago. I smiled at him, and to my surprise, he smiled back. Then, I go and burst into tears. Oh dear. I think the granny pushing the trolley must have thought what a strange woman... but to be quite frank, I don't care anymore. I'm past that now. I am now very comfortable talking about what happened with Harry and how I feel. I am also very comfortable with the fact that I might burst into tears, at any moment, for what might seem like a ridiculous reason to anyone else. I am ok with that. I can quite quickly compose myself. Sometimes, I am reminded that I am missing Harry and that will make me tearful, and I don't expect that to ever change. What has changed though, is my attitude about how I feel about being tearful.

Even though I often think of what Harry should be doing now, I always think of him as my newborn baby boy. The baby I held in my arms for that short time. He is my Peter Pan child. The boy that will never grow up.

Three months on Harry..... I still love you just as much, and miss you dreadfully. You were my special little boy and will always be remembered with such love, by so many. I hope you are playing nicely up there Harry, and pray I will see you again. xxx