Roz was there already so we didn't have any time to wait - the Ulster always leave us hanging around for a while before our appointments. Unfortunately, there was no improvement on the fluid surrounding Hallie's organs and the Hygroma is still very large, but Roz did say that she didn't think the fluid had gotten any worse. She just looked the same as the week before.
All of the scans we've had recently have been solely focused on Hallie's organs, just brief glimpses of her little heart ticking away and the fluid in her abdomen, but today, Roz took the time to show us a bigger picture of our girl and it was absolutely lovely to see her. She was lying on her back, opening and closing her little lips as if she was blowing bubbles or chatting away to herself! We could see her swallowing. We watched as she brought her little hands up to her face and even put her chubby little fist into her mouth. Proper baby stuff. It was mind blowing and I was crying my eyes out - mostly because she looked so happy and adorable, but also because it was incredibly sad to see her look so perfectly normal when we know that she isn't. For a minute, it was almost like having a normal, happy scan. Roz let us watch her for a good while and she babbled at her on the screen just as I imagine she would do with any other happy baby scan and it was the most wonderful thing. Of course, the one day that I leave my phone in the car is the day that I'm told that we're free to take videos and photos of her if we like! Hopefully we'll get the chance to again.
We listened to her heart which is still beating at a perfectly strong and normal rate. She's doing really well in there considering the high levels of fluid but as we know, the fluid is stopping her lungs from developing properly. Hallie is doing well because I am breathing for her - the problem is that if her lungs aren't developed, she won't be able to breathe on her own when she's born. If Hallie carries on as she is, she could survive to term but when she is delivered, she won't survive. The miracle would be that the fluid in her abdomen would resolve and her organs would have a chance to grow, but as she is, they're far too underdeveloped for her to breathe on her own.
If Hallie holds on for a few more weeks, at around 28 weeks we will be referred to the Neo Natal unit in the Ulster to discuss and make decisions on post-birth management. The options will basically be, for me to deliver and have her placed on my chest and us to be left alone with her, allowing her to pass away peacefully with us. They would supply her with any pain relief or oxygen she requires, but it's inevitable that she won't live outside of my body for very long. The other option is for us to give birth in the Royal where they will whisk her away from us as soon as she's born and they'll put her on a ventilator. This would be to prolong her life long enough for us to see her and spend some time with her but we would eventually have to make the decision to turn the machine off and it would be unlikely that we'll get to hold her while she's still alive. Prolonging the inevitable, in other words.
The fact that Hallie has Mosaic Turner Syndrome is not even a worry any more - had the Hydrops not existed, she would be absolutely fine. That's the cruel truth. Unless the fluid resolves, Hallie won't stand a chance and it's highly unlikely that it will resolve. Roz has never seen it resolve before. We still believe that we're doing the right thing in giving Hallie the best chance though, we have no regrets about our decision and no matter what happens to her, we will always know we did our best for her. She's a little warrior and we are so, so proud.
We have a meeting with our Consultant back at the Ulster next week, so will get a more detailed analysis of her situation but for today we're clinging to the happy image of our beautiful baby girl we saw on the screen today. Our little ray of sunshine amongst the dark clouds.
All of the scans we've had recently have been solely focused on Hallie's organs, just brief glimpses of her little heart ticking away and the fluid in her abdomen, but today, Roz took the time to show us a bigger picture of our girl and it was absolutely lovely to see her. She was lying on her back, opening and closing her little lips as if she was blowing bubbles or chatting away to herself! We could see her swallowing. We watched as she brought her little hands up to her face and even put her chubby little fist into her mouth. Proper baby stuff. It was mind blowing and I was crying my eyes out - mostly because she looked so happy and adorable, but also because it was incredibly sad to see her look so perfectly normal when we know that she isn't. For a minute, it was almost like having a normal, happy scan. Roz let us watch her for a good while and she babbled at her on the screen just as I imagine she would do with any other happy baby scan and it was the most wonderful thing. Of course, the one day that I leave my phone in the car is the day that I'm told that we're free to take videos and photos of her if we like! Hopefully we'll get the chance to again.
We listened to her heart which is still beating at a perfectly strong and normal rate. She's doing really well in there considering the high levels of fluid but as we know, the fluid is stopping her lungs from developing properly. Hallie is doing well because I am breathing for her - the problem is that if her lungs aren't developed, she won't be able to breathe on her own when she's born. If Hallie carries on as she is, she could survive to term but when she is delivered, she won't survive. The miracle would be that the fluid in her abdomen would resolve and her organs would have a chance to grow, but as she is, they're far too underdeveloped for her to breathe on her own.
If Hallie holds on for a few more weeks, at around 28 weeks we will be referred to the Neo Natal unit in the Ulster to discuss and make decisions on post-birth management. The options will basically be, for me to deliver and have her placed on my chest and us to be left alone with her, allowing her to pass away peacefully with us. They would supply her with any pain relief or oxygen she requires, but it's inevitable that she won't live outside of my body for very long. The other option is for us to give birth in the Royal where they will whisk her away from us as soon as she's born and they'll put her on a ventilator. This would be to prolong her life long enough for us to see her and spend some time with her but we would eventually have to make the decision to turn the machine off and it would be unlikely that we'll get to hold her while she's still alive. Prolonging the inevitable, in other words.
The fact that Hallie has Mosaic Turner Syndrome is not even a worry any more - had the Hydrops not existed, she would be absolutely fine. That's the cruel truth. Unless the fluid resolves, Hallie won't stand a chance and it's highly unlikely that it will resolve. Roz has never seen it resolve before. We still believe that we're doing the right thing in giving Hallie the best chance though, we have no regrets about our decision and no matter what happens to her, we will always know we did our best for her. She's a little warrior and we are so, so proud.
We have a meeting with our Consultant back at the Ulster next week, so will get a more detailed analysis of her situation but for today we're clinging to the happy image of our beautiful baby girl we saw on the screen today. Our little ray of sunshine amongst the dark clouds.
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