I forgot to mention about my 16 week “marker scan” the other week – it went well. We saw a registrar who did the scan from top to toe first, then the consultant came in and gave the Bean a once over too. All the organs, limbs and vital structures looked normal, so we left feeling delighted that our little sprog at least looks healthy!! What a relief. I don’t doubt that if this Bean has Down’s syndrome, it would remain undetected on scans as Seren did. We are not concerned about a diagnosis of Down’s syndrome though – it was the other life threatening chromosomal abnormalities that I wanted to check for, and most of those are identifiable during these types of scans… now we just have to wait for the official 20 week anomaly scan on the 21st November. The baby will be bigger, and it will be easier to spot if anything is structurally wrong.
I will also be seeing a consultant at the end of November to discuss the fact that I don’t appear to be able to go into labour. I was induced with both the girls (Seren was 2 weeks overdue) and the fact that I suffered from a PPH (postpartum hemorrhage) after Seren was born due to retained placenta. I lost a lot of blood, had to be taken in to theatre and was on the cusp of needing a blood transfusion, but luckily I recovered well with the help of iron medication. I have been reading up on PPH and now (thanks to the internet) am terrified that it will happen again. I went so overdue with Seren that I am sure the placenta wasn’t working properly. I had no amniotic fluid left and Seren’s cord stump fell off 24 hours after she was born. I will mention all this to the consultant, but I will also listen to what he has to say. My midwife thinks I just cook my babies longer and suggests I should be allowed to go very overdue again this time – I am not so sure.
Anyway, with my expanding waistline comes “Jo Public Opinions”… Seren has always attracted a lot of attention when we go out. Mostly, I have to say this has been alright; a mixture of curiosity and gentle questioning from complete strangers (aka Jo Public). People are interested in Seren and the fact that she has Down’s syndrome. I get sympathy and pity from people (which I HATE!) and also the standard comment of “they are very loving” or “she will be a great companion to you” or “she will bring you a lot of joy” – which just makes me want to scream: OH SHUT UP!! Occasionally I get someone who wants to give Seren a cuddle – just because she has Down’s syndrome. I find this hugely offensive and intend to teach Seren how to slap, spit in eyes and if at all possible, pull out huge chunks of hair. Ok, I am joking, but you get my point? Seren is hair pulling at the minute anyway, and the last woman who tried to cuddle Seren was left squealing as she tried to release Seren’s vice-like grip on her over-coiffed hair!! I stood back and smiled… “not conforming to the “loving” stereoptype now is she?” I said pleasantly.
Last week was an all time low for stupid comments. A conversation with a complete stranger in Sainsbury’s (this is not uncommon) lead to me explaining that yes, we had a good idea Seren would have Down’s syndrome from a pregnancy blood test, but we had refused further testing. She then replied “well I doubt you will be so cavalier at refusing testing this time will you?” I was HORRIFIED, and rendered momentarily speechless. I muttered something about refusing testing again this time and loving my baby regardless of any genetic differences it might have and then I left. I couldn’t believe what I had heard and that she would say something like that infront of Seren. I know Seren can’t understand, but I felt so terribly sad for her. Clearly this woman didn’t believe Seren deserved to be born and that we had played Russian Roulette with our decisions and lost – and that is not how it is for us at all. We didn’t have the tests because we would NEVER, EVER, EVER consider terminating a pregnancy because of a diagnosis of Down’s syndrome. I felt like I had failed to convey this message to this woman – I hadn’t said my bit properly and she has gone away thinking that Seren’s existance was a mistake. Not so lady… Seren is here because we want her to be here. She deserves to be here! We loved our children from the moment of conception… in our family, unconditional love is just that; unconditional.
Sadly, an aquaintance also upset me this week – again questioning me on my choices not to have further testing, she commented “well if you don’t know then the choice to terminate isn’t there is it?”… I felt utterly deflated. No, she was missing the point completely. Our choice not to have further testing is because we would not terminate. Never, ever…. I feel like a stuck record sometimes, but I wonder if my views on life and my unconditional love for my children is somehow different to everyone elses? Why do people look at me like I am completely demented? I can only assume that everyone who thinks Matt and I are “cavalier” in choosing not to have further testing also don’t believe Seren deserves to be here. It’s a sobering thought.
Anyway, other than these minor blips caused by stupid comments, we have had some major progress from Seren!! She managed to climb the whole flight of stairs the other week!! It was great because I had only ever seen her do one or two steps (we practice every day) but then Matt came in and told me she had done the whole lot! I didn’t believe him of course, so he took her and plonked her at the bottom of the stairs and sure enough, off she went. I was so pleased for Matt – he works so hard he misses almost all of her “firsts”. The fact that she saved this one for him was really special. Seren has to work so much harder at all the physical milestones. She has hypotonia (low muscle tone) and hypermobility of her joints. She is 16 months old now and the fact that she has figured out the coordination for the stairs is huge! She has even started “bear crawling” on her hands and feet (legs straight, bum in the air) which is a pre-walking skill. I notice and celebrate every single little achievement with Seren and it makes me feel so sad that I never appreciated Ava’s milestones like this. With Ava, I expected her to hit milestone after milestone and they came and went with such alarming speed that as soon as we noticed one, it was swiftly followed by another and another and another, we never got time to relish in her achievements like we do Seren’s. As such, I have made a mental note to lavish more praise on Ava’s accomplishments, no matter how small. I try and notice them more, appreciate her more. I think Seren is definitely making me a better, more patient, more caring and certainly more complimentary parent to Ava.
Seren is also picking up with her Makaton (a basic sign language to help her communicate with us). She can now sign: biscuit, more, finished, duck, dog, drink, eat, brush and a couple of others I am forgetting I am sure. She currently does most of them when prompted rather than when she wants something to eat or drink (for example) so I am hoping she will soon be able to tell us when she is hungry or thirsty.
Matt has put his back out… he is currently home and really suffering with pain. He was prescribed some pretty strong pain medication but it has made him really sick. He is in bed and totally out of it. I took him for an MRI scan yesterday so we are hoping the results will show what the cause of his problems are so that he can receive the correct treatment. Its horrible seeing him suffer and I really hope he recovers soon.
Right, well that’s all for now! I meant to say, if you have anything you would like to say to me or any one of the other families who are blogging on FoD, just email through the “contact us” on the website. Please address the message to the person / family you wish to communicate with and I will pass it on. If there is any one topic you would like my opinions on, then please also feel free to get in touch! I am always looking for inspiration on what to write about x