Bedside manner

Throughout our journey we have encountered examples of good and bad care, sadly we’ve had more of the latter. There have been several occcasions where we felt like we were on a conveyer belt, people just hurrying us along to the next person. There were a few who took the time to look us in the eye and feel what we were feeling.. sadly our consultant is not one of them. Recently we had a meeting with her where we asked to try different options to see if they might help – everyone of them was shot down. Now, thats not nessecarily bad care if it truly wont help, but it was like talking to a brick wall ‘no, i dont see the point’ etc, the same thing could have been said with a much kinder manner – especially given what we’ve been through. My (nearly)Wife is the brains of the outfit and asked her GP to transfer us to Tommys. This is a charity clinic which specialises in this kind of thing, and we had our first meeting with them this week. Well, what im confused out it is how our consultant shot down several things they offered off the bat! One came with a disclaimer ‘it may not help, but it wont do any harm’ – actually it will help, because it will let us think WE ARE DOING SOMETHING. After this we met one of the Tommys nurses who was so lovely, she listened to out story and took the time to emphasise. Its been three weeks since we saw our consultant, they were asked to send us our results from any tests and weve had and nothing has arrived yet, its been just over three days since tommys and theyve already arranged a second appointment! 

I guess what frustrates me is that you can be as clinically skilled as you want, but if you cant show empathy for this kind of thing then no amount of skill is going to help.

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Fathers today.

Today is a bit of a mixed bag, ive got two big positives and two big sad thoughts.

On the good side, its fathers day. This makes me happy because my dad is still around for it. Now im a 30 something but my dad (actual biological father) is in his 90’s. The fact that he’s here is a really good thing.

Secondly, its now exactly 5 montha until i get to marry the most amazing woman i’ve ever met. Definate cause for celebration.

On the other end of things, its fathers day and im a dad without his little girl. Over the past few weeks it started to weigh heavier on me, though thats due to the next thing – we are now longer without our little girl than we were with her. Its really difficult to describe how that feels other than ‘sad’. I just want answers, but its still going to be a long time until we get them.

Even so: happy fathers day to all the dads who have & have not got thier little ones to hold today.

11 weeks and counting

The roll of normality continues with its highs and lows. Just over a week ago it was my birthday. I got quite upset in the morning.. sadness that our little girl wasnt there.

We also got our results back and learnt the reg who was there for the birth screwed up. In our meeting the consultant started to say ‘in situations like these its really important we do genetic testing’ ‘what do you mean? We know we didnt send a sample of lilys skin but the placenta was’… Turns out it wasnt. When she was born they went through the testing opttions, we couldnt stand the idea of a full post-mortem so decided on observations only for her but said they can do what they like with the placenta. When it came to the form the genetic testing box was crossed out, we double checked ‘they will do the placenta, right?’ ‘ absolutely, they always do’. So that was a lie. With only external observation they cant confirm what it was, though they strongly suspect triploidy – what we also think it was. 

As for the future, the consultant cant find any reason we cant have a baby. The way she put it was ‘theres a dice with many sides, we just dont know how many’. So its good theres nothing stopping us getting there but we dont have a quick fix to assure us. One good thing though is that we will have a very closely monitord pregnancy last time – meaning we dont have to visit the ward we hate .. yay!

6 weeks.

6 weeks now.. and still 4 weeks until we get any results. We colected Lilys ashes about a week and a half ago.. i was surprised there are any. Now we need to think about what we do with them if we do anything. For now they are safe in the beautiful little container we choose. Its a testament to the person who organised the service that we got this one. We only saw it breifly and said it would be nice if there were any ashes. Then we are collecting them in that container. It has an image of a sunset on it which is very pretty. Im not sure what we will do aith the ashes, i expect we will hold on to them for quite some time as once you make that choice you cant go back. We were thinking of scattering them overseas but the rules are far tighter than in the uk.

I also had my first big day of lots of people asking about it. It was ok if a bit uncomfortable at times. Though one convo was quite in depth and i could feel myself welling up. 

Also i only recently saw the pics my partner took. Our baby had a really cute little face. Her pics also captured more of a tiny smile on her little lips. That has helped me find a bit more peace. 

Family and other peoples babies

The loss of our little one has resulted in the first time ive really felt frustrated with my close family.its an issue that really stems from how people are afraid to talk about loss. If someone close to you has lost someone, dont be afraid to talk to them. They probably wont want to talk about what they are going through, but may appreciate having a normal conversation. You can rest assured that even though they can hold a normal conversation they are still hurting inside, but that conversation will help them not feel so isolated. ‘Well, if i need to talk they know im here’.. really? Dealing with loss evaporates your want to do anything let alone feel like you want to reach out. It took so much for me to go speak to someone about how i was feeling when i hit a bad low, i essentially had to force myself to do that. If you care about someone talk to them, dont leave them in silence. Unfortunately i now feel a divide that ive not felt before, im sure it will heal over time. And maybe im being a dick as there is no book on how these things should go, but seriously just reach out to them.

Also i felt my first pangs of jelousy this week. Two people i know have had babies. They are both wonderful people and amazing parents – as they both already have kids. This is where it comes in, a feeling of being pissed off with life – others are having a second kid and life cant seem to let us have one?!? Its a horrible way to feel. Im not a believer in deities but it really feels like life is being a cunt.

i miss my little girl so much. Shes always in our hearts, but she should also be in our arms.

You’re always with us, so its not really goodbye.

On wednesday we visited the people handling Lilys service. We went to drop off a tiny bunny teddy and some photos we had writte messages on. We took them through to a small room where she was in her small sealed casket. As soon as i saw it i broke down into tears. The box was beatiful with her full name/birthday and a message saying ‘always loved’ on a plaque on top. It was really moving how dignified she had been treated. We spoke to her for quite some time, reading out the messages we had written on the back of the photos. Whilst i cried for a while, afterwards i started to feel some sense of peace. It was also nice to say ‘see you tomorrow’ and not goodbye again.

for the first time when we got home i was able to look at some things, which had previously made me cry, and smile.. it was a big change to start to feel peace. It had also been great to be near our little girl after so many weeks.

yesterday was the day of the service. Shortly before the car arrived to take us to the crematorium i was feeling very nervous..as if she was watching, a huge sun beam started to shine through the lounge window lighting up the house. It made me feel a lot better. When the car arrived i got in and sat next to ger casket and started to cry. I got to carry her in whilst my partner carried flowers for her. We walked in listening to ‘Birdy – wings’. We stood at the stop of the chappel with her casket just crying for most of the song. Then we brought those with us close (her mom and my closest friend) and did some small readings. I spoke about how we wanted to remember her with a smile and about how much she had made us giggle in her ultrasounds by being so silly. I read one of the last parts of ‘the little prince’ which talks about remembering. After this we asked to be alone with her casket. We spoke to her more and started to cry… then another sun beam came through the windows and shone right on her casket. Again, it was ger there with us! We exited the chappel listening to ‘mumford and sons – after the storm’, crying more tears.

when we got home i agaun started to feel a sense of peace. Not long after we arrived, our rememerance trinkets arrived (a necklaces for my OH and bracelet for me), they had her little hand and footprints in them. Our promise is to keep her memory as something that makes us smile and gives us hope as we move forwards in life. This time it didnt really feel like goodbye, as, to be honest, she is always here in our hearts.