Frankie
Well-Known Member
That is the names of our twins to be, due on Valentines Day.
Sometimes when you hear something you tell yourself for days this has to be a cruel joke, just how can this happen? Never fully able to wrap your mind about what is being said to you.
Blake has a heart defect we have known about for a few months now, his condition remains the same and should as long as my daughter is carrying them. He has a echo on his heart every 3 weeks to make sure there are no further complications. Last Monday they did the echo on Riley, they found something and did more testing on Friday and again today, my daughter lives at the doctor offices. They have only done one other echo on Riley before, just cause. We got the news today, her vessels are not hooked up to the right chambers and is not mixing her blood correctly for oxygen purposes. They had not found it before as it is progressive, it has just now progressed enough for them to see. The chances of this happening is SO out there, the doctor himself ordered the tests again and sat in on them while being conducted. The tests were gone over by a specialist who deals in multiples, another who deals in pediatric cardio, along with both of their Heads of Departments. They are all at Columbia. They all were there for my daughters appointment today to answer all her questions. She is so taken back she really didn't ask a whole lot and they saw that, so they just offered all the info she should know.
The babies conditions are the same, as in vessel wiring, but yet different. We know Riley has the vessels to rewire, Blake is missing the one to a lower chamber. If Riley continues to get worst, as in a slowed heart rate, they will go get her, putting Blake at risk as he needs to weigh 6 pounds to get through his surgery that is a much, much higher risk.
My daughter and her husband have been through TONS of genetic testing, there is no reason genetically why this should happen. Some of the doctors told her they have never seen this in Fraternal Twins and can not explain it, another doctor told them they would have a better chance of winning the lottery 7 times before having this happen. They are sure, even the doctors told her I wish I were wrong and I wanted to be wrong, but they had to let her know.
They will have an Echo again in 2 weeks, after that it will be every week until they arrive. Blake, they are watching for a back up of fluid in his chest, Riley, for a slowed heartrate and blood flow in the correct direction. Columbia is considered the premier hospital when it comes to multiples, pediatric cardio,,,somewhere, some how I am hoping these highly educated physicians considered the best in their field, are wrong.
Riley will have surgery immediately, she will go from my daughter to a machine to surgery in less than 4 hours, Blake will be delivered, be put on medicine to keep a valve open and have surgery within 48 hours.
Someone tell me this is a dream, so much to take in. Just how can this be happening, you can't even make up this much crap.
Gosh I've gone on so much, sorry.
I am just asking for all the good thoughts and prayers for these two babies and my daughter and her husband.
Thank you and thanks for allowing me to get it out, that's hard when it seems so unreal.
Sometimes when you hear something you tell yourself for days this has to be a cruel joke, just how can this happen? Never fully able to wrap your mind about what is being said to you.
Blake has a heart defect we have known about for a few months now, his condition remains the same and should as long as my daughter is carrying them. He has a echo on his heart every 3 weeks to make sure there are no further complications. Last Monday they did the echo on Riley, they found something and did more testing on Friday and again today, my daughter lives at the doctor offices. They have only done one other echo on Riley before, just cause. We got the news today, her vessels are not hooked up to the right chambers and is not mixing her blood correctly for oxygen purposes. They had not found it before as it is progressive, it has just now progressed enough for them to see. The chances of this happening is SO out there, the doctor himself ordered the tests again and sat in on them while being conducted. The tests were gone over by a specialist who deals in multiples, another who deals in pediatric cardio, along with both of their Heads of Departments. They are all at Columbia. They all were there for my daughters appointment today to answer all her questions. She is so taken back she really didn't ask a whole lot and they saw that, so they just offered all the info she should know.
The babies conditions are the same, as in vessel wiring, but yet different. We know Riley has the vessels to rewire, Blake is missing the one to a lower chamber. If Riley continues to get worst, as in a slowed heart rate, they will go get her, putting Blake at risk as he needs to weigh 6 pounds to get through his surgery that is a much, much higher risk.
My daughter and her husband have been through TONS of genetic testing, there is no reason genetically why this should happen. Some of the doctors told her they have never seen this in Fraternal Twins and can not explain it, another doctor told them they would have a better chance of winning the lottery 7 times before having this happen. They are sure, even the doctors told her I wish I were wrong and I wanted to be wrong, but they had to let her know.
They will have an Echo again in 2 weeks, after that it will be every week until they arrive. Blake, they are watching for a back up of fluid in his chest, Riley, for a slowed heartrate and blood flow in the correct direction. Columbia is considered the premier hospital when it comes to multiples, pediatric cardio,,,somewhere, some how I am hoping these highly educated physicians considered the best in their field, are wrong.
Riley will have surgery immediately, she will go from my daughter to a machine to surgery in less than 4 hours, Blake will be delivered, be put on medicine to keep a valve open and have surgery within 48 hours.
Someone tell me this is a dream, so much to take in. Just how can this be happening, you can't even make up this much crap.
Gosh I've gone on so much, sorry.
I am just asking for all the good thoughts and prayers for these two babies and my daughter and her husband.
Thank you and thanks for allowing me to get it out, that's hard when it seems so unreal.
