Final Scan…

7th September 2021

Ok big update for Amber I had my final scan today, feeling pretty sad about it as I’ve grown to love seeing her bumping around on screen and I feel like she is safe and happy where she is right now. Any problems she has aren’t an issue so much at the moment as she’s supported by my body so honestly I’m feeling terrified and tears are my constant companion at the moment as I’m trying to face what is to come.I have an induction date… Tuesday 14th September so only a few days to go and it’s all happening far too quickly now. I’ll be in hospital the evening before for assessment.I’ve opted for steroid injections to help support her lungs and breathing at birth as I’m only going to be 37 weeks when they induce… this pregnancy has been a balancing act of trying to make good choices that are hopefully best for Amber and myself. I’ve had to make some of the hardest decisions and I can only pray they give a happy result.. it has been coded a high risk birth and we still are uncertain and undecided on monitoring or if I should opt for a c section… something I want to avoid at all costs really, especially in case we have to transfer to Aberdeen hospital. (We are hoping Aberdeen may not have to happen.. Martin McCaffrey the US trisomy expert neonatologist called me last week and he believes that on the basis of Ambers scans we might be lucky and she may not have oesophageal atresia… no guarantees of course)The steroids I’ve discovered are pretty painful and I’m back to Raigmore again tomorrow for the second dose and a final appointment with my paediatrician… a new choice is I’ve now requested intubation at birth if needed. Something I was originally going to avoid on the basis of her diagnosis but because of some positives in scans and because of my endless research into Trisomy 18 I now believe she has a reasonable chance of life (how long for is unknown) and I want to ensure she is fully assessed and not judged simply on the basis of her diagnosis. Martin McCaffrey also told me if she makes it past 1 month we have a 40% chance of survival past her 1st birthday.. I realise that must sound horrific to you all but I have gone through this pregnancy believing she only had a 5-10% chance of this so I’m clinging to hope.. it is all I have at this point.So to Ambers scan.. my fluid levels has gone up high this week … not great but hopefully will cause no problems. Her heartbeat is strong! Cord flow good and her weight… has gone up!! My baby girl is now estimated at 5lbs3oz which is INCREDIBLE for a Trisomy 18 baby!! Just over a whole lb more than last week! (that’s bigger than mum said said my sister Wendy was!! ) And.. I don’t know how much to read into this but Ambers hand was OPEN! To explain the excitement of this you need to understand that Trisomy 18 babies usually have clenched fists as Amber has had at all her scans so far.. this is a signifier of neurological/brain issues … so for her hand to be open is maybe a good sign?? I’ll be speaking to my paediatrician tomorrow and asking her opinion So to all of you please whatever you believe please send prayers or healing.. I am grateful for all.If you message me this week and I don’t respond (I will try) please understand I’m trying to find some calm and peace in between the fear and crying and I honestly feel at breaking point right now. I am utterly overwhelmed and have fears and worries I never dreamt existed. I still have hospital appointments, a hospice visit (dreading it) and other birth related stuff to do and I literally only started my maternity leave last Friday so I’m exhausted with terrible insomnia just to add to the mix and only a few days to find some sanity in the chaos.My next big update will no doubt be from the hospital.. My next Amber photos will be of my baby girl and I know she’s going to be just beautiful Photos from today Ambers tiny open hand and face and also a gorgeous photo of the wee jacket and bonnet my mum has knitted for Amber.. ready to pack in my hospital bag