I know it has been a while since I last blogged and I was not sure I was even going to write again as it is not really making any difference to anything and I am probably just boring and depressing whoever might actually still be reading these.
I know I originally started this whole blog to tell the story of my journey struggling to conceive our so longed for baby number 4 but this has now become entwined with the loss of my mother as well as the losses of 2 precious babies this year alone.
November was always going to be an awful month as the 18th would/should have been my poor mum's 65th birthday, with my dad's 65th birthday only a few days later, closely followed by the long awaited and dreaded appointment for Bailey's post mortem results.
Mum's birthday was on a Sunday so I had arranged for us all to drive (well hubby drove bless him) all the way to Somerset where my severely mentally disabled brother lives in a wonderful care home. It was the first time I had seen my brother since our mum died at the end of August, I could not help bursting into tears as we arrived at the house after the 2 and a half hour drive there. My brother bless him just kept staring at dad, he, mum and my younger brother had spent the week in Somerset the week before she died so I can imagine as much as we cannot really know how much he actually understands, it was clear he noticed something was different.
With the help of two of my brother's carers we drove to the seaside, we had some of mums ashes with us and as the tide was out we had to walk quite a way to get to the sea to scatter some. It is hard to describe that moment, but we all scattered some, including my three boys who chose to take part (I would never have pushed them to) more amazingly even my special big brother came over to me as I was holding the container and then copied what he saw me doing, but he was so gentle and kept coming over to scatter some more into the sea. It was a precious moment.
I had bought some sky lanterns intending to send one up for mum and another for Bailey but despite trying for a long time (which my brother was unbelievably patient with) they did not light, probably due to the wind, I was so disappointed.
I then started writing Bailey's name in the sand as I have started collecting photos of his name written on various beaches. I wrote messages to mum too saying happy birthday and then the boys all started to join in too which was a lovely moment as was the moment my dad helped me finish my sand message to mum after I hurt my back.
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After my brother's carers took him back to the house as he had had enough by then the rest of us went for a walk along the seafront, dad and my younger brother clearly had lots of memories from their holidays there with mum, I felt like an outsider once again which was horrible and I felt bad as the day was meant to be about mum.
I only had one memory of mum there, from a weekend we had all spent together a year ago.
The boys found the day very emotional and are really missing their nanny.
A few days later it was dads birthday, another very hard day as dad was not interested in marking it at all, but I still wanted to make the day about him so we cooked him (and my younger brother of course) dinner, the boys got him a present and a card and I got him a card and will be taking him to see one of his favorite Irish groups next year.
We also went for a drink with him and my brother that evening which dad loved, he did get emotional as it was their local pub and the lovely landlady sent over a bottle of fizz for him which he did try to refuse until I said we should raise glass to mum and him for both their birthdays.
Next month would be their 41st wedding anniversary, another hard time.
This week we finally had the hospital appointment we have been waiting over 10 weeks for, since the day Bailey was born and before really)
We arrived at the hospital about 20 minutes or so early for our 10.30am appointment with my gynae consultant. We were quickly ushered into yet another quiet room after we explained what our appointment was for. I could not stop shaking and thought I might have another panic attack as I had had one earlier in the week, but somehow I did not this time.
The consultant was someone I have known for years, I was worried as she had a tendency to be a bit of a joker, but she was lovely. She started off trying to ask me how I was but quickly realised I was not able to talk about myself so went straight into Bailey's post mortem results, which was a good thing as I had not been able to take my eyes off the report sat on top of my folder on the table in front of her/
Her first words were like being hit in the chest by a football, she said "He measured as about 14 weeks" She explained that although this is not totally accurate as they just measured him and went by a graph of average sizes she gently explained the report said there were "changes and signs" on his body that showed he had been dead a while before he was born. She did say that being in the warmth of my body would have sped these things up so he was probably closer to 15 weeks.
That might not sound major considering I had believed/hoped he had been closer to 16 weeks, but the thing is if he was 15 weeks it means he died the same kind of time as my mum, so I made that awful 6 hour journey home from what should have been our family holiday even more alone that I already was.
It means I did put my mums hand on a baby I had already lost yet was still carrying, it means I imagined feeling Bailey move inside me the week I was here caring for my distraught dad and my brother while planning my mums funeral myself and it means the day I had to phone the hospital without my husbands hand to hold to get the final CVS chromosome test results and discover we were having another little boy, he was already an angel.
She went on to talk about how massively swollen our baby boys tummy had been and that this was due to his bladder being so enlarged as it had never been able to empty even a drop due to a valve, I listened then asked if the valve had not been working normally and that was when she explained exactly how poorly Bailey had been, because you see there should NOT be ANY valve there at all, so this was an abnormality had had from the start.
She explained this meant as he had developed this while still so little he had NEVER had a chance and would never have survived much longer than he did.
This was especially hard to hear as we had been given some hope by the specialists we had been referred to.
So Bailey DID have megacystis which means the enlarged bladder, this can be caused by minor blockages that can sometimes clear themselves or be operated on in bigger babies, but Bailey's megacystis was not caused by this, he had a condition called PUV- posterior urethral valve.
This had also caused damage to his little kidneys as the urine in his bladder was flowing back up the tubes to his kidneys as the bladder was so full and was not able to empty at all.
I have asked for a copy of the report to be sent to me to read properly.
I was touched my auntie (mum's sister) text me to see how the appointment went, it is a particularly difficult subject for her so it always means so much that she genuinely cared and wanted to know.
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