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Old 01-21-2012, 09:51 AM   #1
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our u/s

I'm sorry for going MIA, and apologize in advance for the length of this post.
I can't promise to be around as much or posting as much as I have been, but I will do the best I can.

we had our routine 20wk u/s on wednesday. i was 20wk1d. things seemed... all right during the u/s (as much as i knew, they tell you *nothing* at radiology), but about an hour later dh got a call at home (home with levi, i was still in town running a few errands) from our dr's office asking me to come in asap. :/
i went in right away. dr showed me the u/s report (and gave me a copy to bring home). it was horrible news.

bug measured small - 18wk4d average, abdomen smallest at 17wk, other measurements around 19wk. thorax and abdomen small. ribs short. heart on the wrong side (right side of body). kidneys and bladder present. limbs in a strange position and no movement of any through the (hour+ long) u/s.
the radiologist's impression was that bug has short-rib thoracic dysplasia, dextrocardia, absent limb movement. he recommended going to fetal assessment in the city.
while the heart issue may or may not be bad, with the other things present it was not looking good. thoracic dysplasia, no matter how you look at it, is lethal. almost all babies will die in utero. those who are born alive will not be able to breathe. ventilation doesn't help, as the lungs don't develop.
we were broken. without hope. i think in a way we started grieving right then, started saying goodbye to this wee babe.

wednesday night was horrible for us. many tears. just clinging to each other. trying to make it through caring for the older kids. calling our parents to tell them the news, getting prayers sent up all over the country for our little bug.
thursday we got a call to set up an appt for that afternoon at 3pm (which there was no way we could make, with needing to coordinate things for the kids), we got an appt for friday (yesterday) at 2pm. our friend said she would stay home to watch our kids, in fact 3 of her own kids stayed home from school to stay with our kids.

we didn't talk hardly at all from wednesday to our appt on friday. felt like walking through water to move, do anything. when not trying to get something done we just clung to each other on the couch, silent but together. we didn't even talk on the way to the city (3hrs). what was there to say. i'm sure dh was praying, i just kept praying to god, talking to the baby, repeating "miracle. we need a miracle." over and over.
i knew there was something going on with bug. i knew there was something wrong. but i prayed just for some hope.

got to the clinic - i was okay until we sat down to wait, there were other pregnant moms there (obviously there would be) and i just started to break down. the receptionist put her arm around me and said she would give us a private room. a nurse and the geneticist came in to sit with us and talk for a bit. then we moved rooms for more u/s.
first thing we saw, and it's very obvious even to us, is that there is definitely something wrong with bug's limbs. the legs are bent at the hips but very straight at the knees, ankles crossed. the arms are held across the chest - think like hugging yourself. the limbs do not move.
the nurse, and then a dr, did more u/s, more measurements. yes, baby is measuring small... though the measurements were a bit different than on wednesday.
the heart is in the right place - left side of body, fully formed and working perfectly kidneys and bladder look good. stomach is present (wasn't mentioned at all in wed's report), though it may be on the right side of the body - but it may not be and even if it is it isn't our main concern.
we asked specifically about the things in the first report, as well as the other markers we found (in a report online) about thoracic dysplasia.
the dr and the geneticist both said THEY SAW NOTHING. nothing that stood out to them, nothing that looked off or wrong to them, nothing that would make them start looking for anything there. NOTHING. the ribs look fine, the chest and abdomen measurements are small... but not as small as the 1st u/s, no cleft palate or lip, brain is fully developed.

WE GOT OUR MIRACLE! we got HOPE.

now we are on the hunt to find the "why" to explain her limb issues. we need to figure out what is causing it so that we can best prepare for birth and what may need to happen right away.
the geneticist started out thinking (based on the report from here) it was a bone issue. but neither of them saw anything wrong with the bones at all. now we are looking at joint or muscle issues.
as we were going through questions, my hand troubles came up - i have had kinda weak hands for a while, cramping up while writing or say using a can opener. i didn't know it could mean anything. but i may have grip myo dystrophy. if i do, i could have passed this to the baby - who obviously has a very severe case, if this is what's going on.
dh and i had blood drawn for a chromosome workup. i had more blood taken for dna - looking for this dystrophy. we will be doing an amniocentesis to get the baby's genetic workup so we can narrow the cause down.

although we never have before, we asked them to tell us gender. we need to know. we need to prepare.
they are pretty sure our bug is a little girl. ♥

her prognosis is not good. we know this. but there's a really good chance she will survive to be born. we will get some time with our baby girl! it may not be long, but we have hope that we will meet her.
if i have this dystrophy and that's what's causing her troubles, she won't be able to breathe when born because the muscles will be too weak. she will be put on a ventilator right away. this poses it's own risks.
if it is a joint issue instead of muscle, it may be a better prognosis.

i know the geneticist is worried that we don't "get it". that we are not worried anymore, that we think everything is a-ok.
we don't.
we know there is something wrong with this baby. we know she may not survive long. we are not even thinking about this baby even coming home with us right now.
but he gave us the hope of time with our baby. and that is everything we prayed for. how can we not be overjoyed.

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Old 01-21-2012, 10:12 AM   #2
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Re: our u/s

Crasher

Hope is amazing! We will be praying
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Old 01-21-2012, 10:19 AM   #3
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Oh Elena, I'm in tears for you reading your update. I'm so thankful that you got a miracle and will be able to meet your baby girl. I will continue praying for you that her medical issues turn out to be something repairable and will allow her to live a long and happy life.

With all the heartache and time it took you to get here, I just can't get my head around how unfair your situation is. I pray that it's a lesson in hope and his ultimate love and that your baby girl is okay.

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Old 01-21-2012, 10:22 AM   #4
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We will be praying for all of you. Sometimes we have no idea why this stuff happens; just believe God is her Creator and He means for good to come out of it. Jesus said, "Let not your hearts be troubled. Trust in God, trust also in me."
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Old 01-21-2012, 10:24 AM   #5
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Re: our u/s

Quote:
Originally Posted by MDever View Post
Crasher

Hope is amazing! We will be praying
Thank you so much - for reading, for crashing, and for praying for our little girl.

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Originally Posted by wordmama View Post
Oh Elena, I'm in tears for you reading your update. I'm so thankful that you got a miracle and will be able to meet your baby girl. I will continue praying for you that her medical issues turn out to be something repairable and will allow her to live a long and happy life.

With all the heartache and time it took you to get here, I just can't get my head around how unfair your situation is. I pray that it's a lesson in hope and his ultimate love and that your baby girl is okay.
Thank you Lucy. (now I'm tearing up again, lol)
DH is praying for her to move - whether it be a big kick or just moving a hand or foot - on the next u/s (we go back on Feb 3rd to the city for the amnio and more u/s and meetings).
I am just gonna keep praying for more miracles. Right now all I can think is "thank you God!". I think He knows what I'm really saying, I just have no words.
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Old 01-21-2012, 10:24 AM   #6
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We will be praying for all of you. Sometimes we have no idea why this stuff happens; just believe God is her Creator and He means for good to come out of it. Jesus said, "Let not your hearts be troubled. Trust in God, trust also in me."
Thank you Hannah
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Old 01-21-2012, 10:36 AM   #7
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Re: our u/s

im soooooo glad the news was better than the first u/s. praying she turns into a wiggle worm and was just being a contrary girl refusing to move God is in control and your child will be perfect♥ FWIW, i know several stories of the u/s and dr's being wrong first hand. The one that sticks out is when i was 16/17/18 i "taught" preschool sunday school, with the bed babies we stayed in contact with the children who moved up and sometimes kept them longer than we were supposed to. So anyways i had one little boy in there who was so precious and smaller than the others so we kept him longer and didnt bump him up until 12 months or so. At that point his mom found out they were expecting a baby girl. But at the 20 week u/s they were told, among other things, that their baby girl had no brain, only fluid. I cant tell you how hard our church prayed. Grace is 6 now and perfectly healthy♥ At the next u/s everything was perfect.
Now I cant say that will happen here. Maybe she does have some bone disorder. Maybe that is how God intends her to be. And if so she will still be perfect♥ I think the amazing thing is you went from almost no hope to knowing she can,and will, be born That in itself is a miracle and im sooooo glad i read to then end bc i almost stopped
Just know we are here if you need to talk or vent or whatever and we are praying.
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Old 01-21-2012, 10:52 AM   #8
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Re: our u/s

Oh, Elena. My heart is overwhelmed. We will be praying for you, for your family, and for this precious little life. Cling to hope and cling to Him.
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Old 01-21-2012, 10:55 AM   #9
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Re: our u/s

I am sorry you are going through this awful rollercoaster ride. I will pray for your little girl and that the doctors can figure out what is going on so you can have some answers. I hope at your next u/s she is wiggling away, what a wonderful miracle that would be. Praying for you!!!
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Old 01-21-2012, 11:24 AM   #10
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Oh Elena, I am so sorry you are going through all of this. I hope the additional testing brings you answers so that you know what to prepare for. I will be praying for a miracle for your baby girl. And praying for strength for you and dh to get through this time.
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