o0oCharlieo0o
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Well my baby girl is 4 weeks old now so this post is long overdue but unfortunately it's been an awful rocky road so far!! We was under fetal medicine with her pregnancy because she was very small due to her placenta and cord not working properly she only had 1 artery in her cord and she had suspected coarctation of the aorta, on the Monday 24th April (34 weeks exactly) we had a scan and was told all looked great she had actually grown really well and weighed 4lb 5oz apparently, the femur length kept coming up too short so they had kept re measuring (about 8 times) until they got the size they wanted (they measured further than where bone was) so they decided rather than booking the c section for 36 weeks we would push it as far as we could and keep her in as long as possible which was fantastic news! Went back on the Friday 28th April for our next scan and I told them her movements hadn't been great the last couple of days, turns out the blood flow had dramatically changed and she needed out asap! So they scheduled me for a c section the very next morning, so 29th April at 34+5 I was taken to theatre to have my baby, I was terrified, iv never had a c section and always dreaded having to have one, Cassidy was born at 10:40am weighing a tiny 3lb 15oz, I didn't get to see her they had to run off and resuscitate her, they then called my husband away with them while I was being stitched and he came back looking shocked, turns out our baby girl ha she a cleft palate, under shot jaw and two fingers missing on her right hand, but also on the right wrist she had a large ball of fluid and flesh hanging on a thread of flesh just attached to her wrist, how they never saw it on the scans especially as we had so many I don't know, he showed me a couple of photos of her he had taken her little limbs looked too small to me I said she almost looked like she had a form of dwarfism, I didn't get to see my baby girl for what felt like forever because I had to wait for movement in my legs, iv nevertheless tried anything so much in my life as much as I kept trying to get my legs to move, I wanted to be with her so badly, eventually I got to go see her in her little incubator Andy she looked so vulnerable and tiny I was petrified, I got to see her for all of 5 minutes before she was whisked away to a different hospital in London without me, I was heartbroken she had to leave me and didn't understand why they couldn't have just removed my catheter and drip And let me go with her, my husband went with her I didn't want her to be alone, she had to go because of the suspected coarctation of the aorta they needed to do an echo to check, she had to have a blood transfusion on the way in the ambulance as her blood was low, when she had her echo it turned out she didn't have coarctation of the aorta after all!!!!! I was so pleased, she had a small hole but they kept an eye because she was premature apparently that's normal and would close up on its own. But the hospital wanted to keep her with them because of her other issues they were well equipped to help her, so I was stuck in one hospital while she was in another, I sobbed every time my husband told me he had changed her bum or washed her hair etc, I got transferred to her on 1st may and finally got my cuddle it was wonderful, we was told that our baby girl showed signs of a genetic syndrome in her looks, we couldn't see it ourselves until looking at the other preemie babies, a geneticist come round to see us and had a look at Cassidy, she then sat us down and told us she is 100% sure Cassidy has a genetic syndrome, she shows a lot of features, we asked her if she had any idea what syndrome it could be and she told us yes she believes she has Cornelia de Lange syndrome, it's rare, that evening I sobbed for hours however not for myself, for her, you always want the most 'normal' life for your children and we are now unsure of how 'normal' it will be for her, but all I know is she is adored and always will be and we will do anything and everything we can for our beautiful baby girl! We have to wait on results we have been told it can take 5 months! However I got a phonecall the other day to confirm my address as the geneticist is writing to us, I asked them was the results in already and she just replied 'I'm not allowed to tell you anything it will all be in the letter'
We realised the ball of fluid was causing Cassidy pain every time she moved her arm the fluid bag swung and pulled on her wrist, so plastic surgery removed it for her, when she was all stable and repeat appointments were set we were all transferred back to our local hospital (11days) when back at our local hospital we were met with the feeding and cleft palate team who set up for cassidy to have oral feeds from a dr browns specialised bottle, unfortunately though her co ordination with her suck swallow breathe was all out of sync and she is a dangerous feeder so we started at 1 bottle a day for 5 minutes but only if she was awake enough, so feeding orally will be a slow slow process, she also has no gag reflex which is dangerous too. Well on Monday ethe 22nd may we got to bring our beautiful tiny girl home! She has To still have her feeding tube and we are trained in feeding her etc plus we have direct access to area that deals with such things in the hospital and phone numbers for community team to come round. So we have had our little lady home for over a week now and it still lovely, she is just wonderful! Every day I'm checking the post waiting for that letter from genetics terrified to read what it says, I think once I know for sure I can get on with it but waiting is hell! I think that's everything but no doubt I've missed out some important stuff lol
We realised the ball of fluid was causing Cassidy pain every time she moved her arm the fluid bag swung and pulled on her wrist, so plastic surgery removed it for her, when she was all stable and repeat appointments were set we were all transferred back to our local hospital (11days) when back at our local hospital we were met with the feeding and cleft palate team who set up for cassidy to have oral feeds from a dr browns specialised bottle, unfortunately though her co ordination with her suck swallow breathe was all out of sync and she is a dangerous feeder so we started at 1 bottle a day for 5 minutes but only if she was awake enough, so feeding orally will be a slow slow process, she also has no gag reflex which is dangerous too. Well on Monday ethe 22nd may we got to bring our beautiful tiny girl home! She has To still have her feeding tube and we are trained in feeding her etc plus we have direct access to area that deals with such things in the hospital and phone numbers for community team to come round. So we have had our little lady home for over a week now and it still lovely, she is just wonderful! Every day I'm checking the post waiting for that letter from genetics terrified to read what it says, I think once I know for sure I can get on with it but waiting is hell! I think that's everything but no doubt I've missed out some important stuff lol
I'm so sorry you've had to go through such a hard time, hopefully things will continue to improve. I hope that letter arrives asap, it's horrible you're being made to wait like this!
