Our Baby A is VERY sick...
Posted by Kaycie and Charley at 4/19/2007 9:35 PM and is filed under uncategorized 
So, I'm not sure where to begin right now....
I had my Remicade for my Crohn's this morning. It went well. I had my appointment with the High Risk OB (Dr. Turnquest) in the afternoon for my cervical check and they did an ultrasound (u/s) too. They just got in a brand new 3D/4D machine. It is AMAZING and shows wonderful pictures. They were able to get a beautiful picture of baby A's spine. He is lying right on top my cervix, so we could see the detail of his ribs, spine, and all via the transvaginal u/s wand.
The u/s tech and the training tech that was there to train on the machine. They were playing on the machine and spent quite a bit of time. At some point they used some "code words" and went and got the doctor. Because it was a brand new machine, we figured it was part of training purposes. It partially was and partially wasn't. They are very discreet while doing the u/s until they finish. They tried very hard to get their genitals, but neither would show us anything. The doctor sat me up, told me to get dressed and that we have something serious we need to discuss. I didn't think much of it and she told the nurse to get my vitals before we went to talk. We had noticed Baby A's belly looked really large, but they said that's normal, so we thought nothing of it. They saw 3 vessels in Baby B's cord and only 2 vessels in Baby A's cord, again, we thought nothing of it. When she said what she did, and I walked down to get weighed, I looked at Charley & my mom and said.. "Something's wrong with his cord." I was right....
Baby B looks fine and healthy, but Baby A has a very serious problem. The u/s shows what is called a posterior urethral valve. Meaning, he cannot get urine out of his bladder and into his amniotic sac to have fluid around him. Essentially, his bladder is backing up and distending his belly. We call him a "he" because if this is truly what is going on, it only occurs in males. He has a 20% risk that he has other chromosomal abnormalities and 80% that the only problem he has is the urethral valve. Either way, they are deadly. We will have an amniocentesis next Friday at 10am. This will clarify if he has any chromosomal abnormalities, such as trisomy 13 or 18, that are deadly anyway, therefore making the decision as to whether we should proceed with further procedures. This will also clarify if he is a boy. We will have preliminary results back immediately and exact results back 3 days later. If he solely has only the posterior urethral valve, then they will HAVE to do prenatal surgery and we will have to weigh the risks of all of this to the other twin. If it's just the defect, then we will be headed to Cincinnati for the surgery the following Friday. We must catch this soon, as if the condition continues to worsen, it will not allow his lungs to develop and we could lose him. If we don't catch it soon enough and he does survive, his kidney's could be permanently damaged and he would need a kidney transplant upon birth.
Right now, we're doing as good as we can. I broke down after walking out of the office. I held it together in front of the doctor, I'm not sure how. Our OB feels awful, but she recommends the amnio and then the surgery in Cincinnati if no other defects. All I can think about is my sick little boy. Charley is beyond devastation. He's so torn and I've only seen him cry once before, and that was when his grandmother passed away. He cried today. We haven't had a real chance to talk, we're both still digesting the information. We both quietly agreed to the amnio and that we would do surgery if it meant saving our little boy. I'm not mad at myself...not mad at anyone else... I'm almost numb to bad news anymore. Part of me is calm and part of me is torn. I still have this other healthy baby in there to worry about.. I think I'm more scared of the amnio and the prenatal surgery. I don't want to hurt our other baby, but I'm desperate to save our little boy. He has been our little flipper, our strong looking baby.
My parents were headed to Vega Sunday, but my mom can't/won't be away from me when they do that amnio test. So, she might cancel their trip and lose their money..they are not sure what to do yet, but we're going to sleep on it and figure that out tomorrow.
For now, all I ask is for your prayers. Charley & I will find a way to find the strength to get through this, but our baby boy needs all the prayers in the world. We need him to defy the odds and be perfectly healthy, besides his urethra defect...and then we need him and his sibling to stay strong so that we can have doctors fix the problem and save our baby boy's life.
I had my Remicade for my Crohn's this morning. It went well. I had my appointment with the High Risk OB (Dr. Turnquest) in the afternoon for my cervical check and they did an ultrasound (u/s) too. They just got in a brand new 3D/4D machine. It is AMAZING and shows wonderful pictures. They were able to get a beautiful picture of baby A's spine. He is lying right on top my cervix, so we could see the detail of his ribs, spine, and all via the transvaginal u/s wand.
The u/s tech and the training tech that was there to train on the machine. They were playing on the machine and spent quite a bit of time. At some point they used some "code words" and went and got the doctor. Because it was a brand new machine, we figured it was part of training purposes. It partially was and partially wasn't. They are very discreet while doing the u/s until they finish. They tried very hard to get their genitals, but neither would show us anything. The doctor sat me up, told me to get dressed and that we have something serious we need to discuss. I didn't think much of it and she told the nurse to get my vitals before we went to talk. We had noticed Baby A's belly looked really large, but they said that's normal, so we thought nothing of it. They saw 3 vessels in Baby B's cord and only 2 vessels in Baby A's cord, again, we thought nothing of it. When she said what she did, and I walked down to get weighed, I looked at Charley & my mom and said.. "Something's wrong with his cord." I was right....
Baby B looks fine and healthy, but Baby A has a very serious problem. The u/s shows what is called a posterior urethral valve. Meaning, he cannot get urine out of his bladder and into his amniotic sac to have fluid around him. Essentially, his bladder is backing up and distending his belly. We call him a "he" because if this is truly what is going on, it only occurs in males. He has a 20% risk that he has other chromosomal abnormalities and 80% that the only problem he has is the urethral valve. Either way, they are deadly. We will have an amniocentesis next Friday at 10am. This will clarify if he has any chromosomal abnormalities, such as trisomy 13 or 18, that are deadly anyway, therefore making the decision as to whether we should proceed with further procedures. This will also clarify if he is a boy. We will have preliminary results back immediately and exact results back 3 days later. If he solely has only the posterior urethral valve, then they will HAVE to do prenatal surgery and we will have to weigh the risks of all of this to the other twin. If it's just the defect, then we will be headed to Cincinnati for the surgery the following Friday. We must catch this soon, as if the condition continues to worsen, it will not allow his lungs to develop and we could lose him. If we don't catch it soon enough and he does survive, his kidney's could be permanently damaged and he would need a kidney transplant upon birth.
Right now, we're doing as good as we can. I broke down after walking out of the office. I held it together in front of the doctor, I'm not sure how. Our OB feels awful, but she recommends the amnio and then the surgery in Cincinnati if no other defects. All I can think about is my sick little boy. Charley is beyond devastation. He's so torn and I've only seen him cry once before, and that was when his grandmother passed away. He cried today. We haven't had a real chance to talk, we're both still digesting the information. We both quietly agreed to the amnio and that we would do surgery if it meant saving our little boy. I'm not mad at myself...not mad at anyone else... I'm almost numb to bad news anymore. Part of me is calm and part of me is torn. I still have this other healthy baby in there to worry about.. I think I'm more scared of the amnio and the prenatal surgery. I don't want to hurt our other baby, but I'm desperate to save our little boy. He has been our little flipper, our strong looking baby.
My parents were headed to Vega Sunday, but my mom can't/won't be away from me when they do that amnio test. So, she might cancel their trip and lose their money..they are not sure what to do yet, but we're going to sleep on it and figure that out tomorrow.
For now, all I ask is for your prayers. Charley & I will find a way to find the strength to get through this, but our baby boy needs all the prayers in the world. We need him to defy the odds and be perfectly healthy, besides his urethra defect...and then we need him and his sibling to stay strong so that we can have doctors fix the problem and save our baby boy's life.
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