I haven't updated my blog for a while as we have been so busy with the run up to Christmas and the house move...the whole time I have been getting bigger and bigger. The GTT test results were clear so I don't have diabetes...which was great news given that it was nearly Christmas! The actual test wasn't great, I forgot to take Lucozade with me as I'd been advised to by friends but I thought I'd be fine drinking the glucose drink, which I was initially. Then in the waiting room, where I'd been sent to sit for 2 hours, I felt like I'd drunk 50 espressos...not a great look sweating and twitching in the corner like a right weirdo, ended up on the verge of telling a nurse I really did not feel normal but after running my wrists under the cold tap for ages I started to feel better. Had a few growth scans along the way which show baby is on the large side and fluid at a more acceptable level(some good news!)...and most recently an echocardiogram with Dr Miller on the 22nd December. Apparently I'm echogenic...I'll take that as a compliment! It meant he got a really clear view of baby's heart and was able to confirm that it's not going to be a straightforward switch of the arteries locations, the aorta is just too thin and they really need the pulmonary and aorta to be the same size to do that part of the 're-plumbing' process. So it looks like they will deal with the hypoplastic aortic arch first and then decide what to do from there.
Christmas has been lovely so far, it's like the calm before the storm, we're all so excited to meet our baby but at the same time only too aware it's not going to be easy. The house move is all completed, there's just some unpacking left to do now. Grace has a new school to start in Jan and hopefully a new gym too. I have another scan booked for the 28th December and then I guess we wait for 'the letter' to tell us c-section itinerary and times!
Hi Heidi, My name is Jamie, I live in Maryland, USA, and my precious 22 month old daughter, Madeleine, was born with the EXACT same heart defects as those your baby has been diagnosed with: DORV, VSD, TGA, and Coarctation on the aorta. The good news: Madeleine is doing great! She is a phenomenal, spunky almost two year old who lights up a room with her smile. The rough news: we had a very rocky road our first two months. We also found out about our baby's heart defects during an ultrasound around 20 weeks pregnant. I can so relate to your feelings of depression, fear, anxiety, and anger: Why me? What did I do wrong?, etc.....I tried my hardest to get over that. A friend I had never met, but been hooked up with as her baby boy had also been born with DORV gave some of the best advice I'd gotten: "Remember that you are giving birth to a baby, not a heart defect". Words to remember. Our Madeleine is a beautiful toddler, and to look at her, one would never know all she's been through. I had the same worries in thinking is there a syndrome or something that she also had....genetic testing after she was born determined she is 'chromosomally normal'. I have LOTS of details and story to share if you're interested. Please know that many others have gone through what you're about to face. Science and the surgeons can do AMAZING things. Hang in there. Contact me at: jamielynne76@gmail.com if you'd like to chat more. Good luck. --jamie
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