Trailing thoughts....
Posted by Kaycie and Charley at 5/17/2007 1:35 PM and is filed under uncategorized 
I keep posting because it's keeping me sane... Charley & I are just so very stuck on what to do. I think we're waiting for God to smack us on the head with a decision. I wish He would...
So, here are my most recent thoughts...
After getting frustrated with people saying Reagan is a "healthy" baby, I spent a good 10 minutes crying in the bathroom at work. Reagan is NOT healthy, but she DOES have NORMAL chromosomes, which basically means she does NOT have Down's syndrome or Trisomy disorders, all of which would mean they would refuse surgery. So, since we found out her chromosomes are normal, we found out we are ELIGIBLE for fetal surgery. There are SO many things that can go wrong if we even attempt surgery. Mainly, the shunt WILL NOT last. Estimations are anywhere from 1 day to 4 weeks. Her fluid levels have not maintained properly, so having low fluid will likely cause serious problems such as pulmonary hypoplasia (lung immaturity to where she cannot breathe on her own..maybe ever), kidney failure, Potter's face (flattened face), severe club feet, etc. Those are VERY serious things to consider. If Reagan was our only baby, repeat surgeries would be necessarily to maintain her fluid levels and shunts and get her to an age where delivery was safe and they could easily do the surgery necessary to ease the ureter and ureterocele. There is no telling the damage that is already done or the damage that could continue to be done until she is born. We could go through all this and still lose her. Fetal surgery is NOT a cure, it is a HOPE and a CHANCE to give her life, but she could easily have complications along the way and after birth.
So, I finally composed myself, ate some lunch, talked to Charley and still didn't know what to say or think nor did he. Then as I sat here.. something began to creepingly overwhelm me and tell me "It's okay to be scared." A week ago I was ready to do this, but I told myself.. "Think on all this first!" A few things stick in my mind lately.. those being:
1) A complete stranger told me the other day after she got a brief scenario of what was going on that she felt compelled to tell me that "God formed those babies in your womb and I don't believe for one second he is ready to take them." I was overwhelmed with emotion. Like God sent that person my way at that time to tell me that.
2) During our consult with Dr. Q, he just "happened" to tell me a story of a woman pregnant with triplets who had 1 baby with an obstruction like our baby. He told her they couldn't do anything with the baby because she was already incredibly high-risk with triplets. Well, we WERE pregnant with triplets. We STILL have 3 sacs in my belly, but the 3rd is so tiny and small and no heartbeat or yolk sac. And, my thought was.. "Maybe God took my 3rd baby because he knew the greatest fetal surgeon in the world wouldn't do this surgery if there were 3 in there."
3) Following the bladder tap, I had NO contractions. Granted, it was only a 22 gauge needle and I think they use a 13 gauge for this surgery, much larger, but I did get stuck 3 times through the placenta. And, not only that, when we went for a check-up u/s on Tuesday, the tech made sure to mention to me she saw NO "streaking" which would mean blood vessels in Reagan's placenta were damaged while doing the procedure. And, my cervix was still firm and closed. And, the Reagan went from no fluid to an almost 2cm fluid pocket.. and once again we saw our girls head to head.. telling each other a secret.. We're they trying to tell us something?
4) They call Dr. Q the baby whisperer...and when he sat down to do the u/s himself.. he looked at the screen and was looking for something and instantly found it and said "Oh, see, already like this baby."
A concern that sticks in my head is Dr. Q keeps reminding me that we can "stop at any time." Almost as like an opt out.. why would he tell me that?
So, here are my most recent thoughts...
After getting frustrated with people saying Reagan is a "healthy" baby, I spent a good 10 minutes crying in the bathroom at work. Reagan is NOT healthy, but she DOES have NORMAL chromosomes, which basically means she does NOT have Down's syndrome or Trisomy disorders, all of which would mean they would refuse surgery. So, since we found out her chromosomes are normal, we found out we are ELIGIBLE for fetal surgery. There are SO many things that can go wrong if we even attempt surgery. Mainly, the shunt WILL NOT last. Estimations are anywhere from 1 day to 4 weeks. Her fluid levels have not maintained properly, so having low fluid will likely cause serious problems such as pulmonary hypoplasia (lung immaturity to where she cannot breathe on her own..maybe ever), kidney failure, Potter's face (flattened face), severe club feet, etc. Those are VERY serious things to consider. If Reagan was our only baby, repeat surgeries would be necessarily to maintain her fluid levels and shunts and get her to an age where delivery was safe and they could easily do the surgery necessary to ease the ureter and ureterocele. There is no telling the damage that is already done or the damage that could continue to be done until she is born. We could go through all this and still lose her. Fetal surgery is NOT a cure, it is a HOPE and a CHANCE to give her life, but she could easily have complications along the way and after birth.
So, I finally composed myself, ate some lunch, talked to Charley and still didn't know what to say or think nor did he. Then as I sat here.. something began to creepingly overwhelm me and tell me "It's okay to be scared." A week ago I was ready to do this, but I told myself.. "Think on all this first!" A few things stick in my mind lately.. those being:
1) A complete stranger told me the other day after she got a brief scenario of what was going on that she felt compelled to tell me that "God formed those babies in your womb and I don't believe for one second he is ready to take them." I was overwhelmed with emotion. Like God sent that person my way at that time to tell me that.
2) During our consult with Dr. Q, he just "happened" to tell me a story of a woman pregnant with triplets who had 1 baby with an obstruction like our baby. He told her they couldn't do anything with the baby because she was already incredibly high-risk with triplets. Well, we WERE pregnant with triplets. We STILL have 3 sacs in my belly, but the 3rd is so tiny and small and no heartbeat or yolk sac. And, my thought was.. "Maybe God took my 3rd baby because he knew the greatest fetal surgeon in the world wouldn't do this surgery if there were 3 in there."
3) Following the bladder tap, I had NO contractions. Granted, it was only a 22 gauge needle and I think they use a 13 gauge for this surgery, much larger, but I did get stuck 3 times through the placenta. And, not only that, when we went for a check-up u/s on Tuesday, the tech made sure to mention to me she saw NO "streaking" which would mean blood vessels in Reagan's placenta were damaged while doing the procedure. And, my cervix was still firm and closed. And, the Reagan went from no fluid to an almost 2cm fluid pocket.. and once again we saw our girls head to head.. telling each other a secret.. We're they trying to tell us something?
4) They call Dr. Q the baby whisperer...and when he sat down to do the u/s himself.. he looked at the screen and was looking for something and instantly found it and said "Oh, see, already like this baby."
A concern that sticks in my head is Dr. Q keeps reminding me that we can "stop at any time." Almost as like an opt out.. why would he tell me that?
Just step back, breath and ask God to give you His direction. Look in your heart not your head...that's where His answer is.
I wish I could do something to help you but I don't have any answers. I just pray that you and Charley will be at peace and both girls will be safe.
Reply to this
Kaycie- I admire your courage...I am at the beginning of ttc yet again and have been following your story. I continue to keep you and your precious girls in my daily thoughts. I know you and Charley have a lot to think about, and I know that you have surgery scheduled- but I wanted to reply to this post due to the comment from Dr. Q that you are concerned about. I believe that he has told you this so that you know that whatever decision you make it is ok, you can change your mind, there is no easy choice with any of this- as you said surgery is not a cure, it is a hope at a chance- please know that you will continue to be supported no matter what happens or what choices you have to make- I know that they seem overwhelming, because they are difficult- but in the end it is out of our hands, do what your heart tells you- don't feel pressured by everyone else- and please remember that many people are thinking of you and your family- again, keeping you in my thoughts. Take Care.
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Kaycie, you continue to write whatever you need to write. I look at the blog everyday hoping to see an update from you. When I don't see an entry for a couple of days I get concern. I wish there was something I could do to make this all go away,but I can't. There is a song by the Issach family that called, Your's and Mine" it is wonderful.There are several lines in it that remind me of you. But the chourus talks about taking away the rain and replacing it with sunshine, taking your place, but since no one can do that then "Let's make this battle yours and mine" I am right beside you and praying for you daily. If you need me just call. Love you all. Elma
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