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unfriendly ultrasound results

post #1 of 33
Thread Starter 
AAHHHHHHHHHHHHHHH!!!!!!

Sorry, I just feel like screaming right now. I'm a mix of emotions and don't quite know what I feel. We just got home from an echocardiogram/ultrasound and I did NOT have fun.

Okay, first things first, for those of you who don't know we have been expecting the possibility of some major birth defects from the beginning. This was an unplanned, but certainly wanted, pregnancy and I was not prepared for it. I was on a number of medications, all of which have some really nasty side affects for birth defects. The main concerns were Spina Bifida and heart problems. Well they've been monitering things pretty closely. We've not gone more than 5 weeks between ultrasounds the whole time. I've also been seen regularly (like every 3-4 weeks) in complicated OB (joy of joys). Well at the last ultrasound (4 weeks ago) they said that the brain and spine looked really good (whew!!!) and that the baby looked really healthy. She was measuring within a few days of her due date and weighed 9 oz (I was 18 weeks 4 days). Then they said they had a few minor concerns: they could not find her bladder (they did three ultrasounds with their best tech that lasted a total of over two hours) and she had very predominant labia. They said not to worry, that it is most likely nothing.

Today they said the heart looked great but that they still didn't see a bladder and her labia are even more swollen than before. They don't think she has a bladder, but that if she does it has a hole in it, that its most likely attached to the abdominal wall and that it has a hole in it too. Oh yay! She also has slowed her growth and is down to the 27th percentile (woo hoo), not that that worries me. My other girls are both between 20 and 25 % on their growth charts. They said the fluid levels looked good and that there is urine in her kidneys and that it is draining somehow. They think the swollen labia is being caused by the bladder issue. That the urine is draining in a way its not supposed to and that that is what is causing the swelling. The doctor said this is a highly unusual situation. He has been working Comp OB for 18+ years and has never seen this. He mentioned a few different things that this could mean for the baby, but wouldn't go into much detail about anything as he had not had the time to fully research things. He did stress a few things though. First that we would need to moniter the baby even more closely than before. We will have to do ultrasounds to check the fliud levels at least ever 1-2 weeks, possibly daily or more frequently depending on how things go. I might end up having to stay there for regular ultrasounds (he really stressed this). Secondly, that he have to deliver at that hospital (it's almost 2 hours away) and not the one that's 20 minutes from our house. (We've known we would have to deliver this one at the hospital) Thirdly, that we need to prepare for the possibility of a preterm delivery. He put a lot of emphasis on the fact that their hospital is highly equipped and can easily sustain a baby who is 24+ weeks gestation. It sounded like he was also really trying to drive that in.

So, I don't know what to expect. The baby looked otherwise healthy and normal. Although with the lessened weight gain (she's just over a pound now) and her labia being even more swollen, there could very likely be more complications in store.
post #2 of 33
Ooo, I'm sorry! This must be rough. You're in my prayers. Hugs!

Cara
post #3 of 33
Gosh, wow. I'm so sorry.

Did they say what they're plan of attack once she's born, if indeed all U/Ses are correct and she does not have a bladder?

Heather
post #4 of 33
I'm so sorry. I hope everything is okay.
post #5 of 33
Hugs to you!! I hope everything will turn out OK!

Deb
post #6 of 33
I hope everything turns out fine
*hugs*
post #7 of 33
Keeping you and your babe in my thoughts
post #8 of 33
I am so sorry, i will bethinking of you and your baby.

YOur little girls are so cute!


Kaitlin
post #9 of 33
Thread Starter 
Quote:
Originally Posted by time4another

Did they say what they're plan of attack once she's born, if indeed all U/Ses are correct and she does not have a bladder?
Well, they said there are a few possibilities for what it could be. We won't know exactly what we're facing until she's born. They said if she really doesn't have a bladder there are some experimental surgeries that could be done later in childhood to attempt to reconstruct a bladder, possibly from a piece of intestine. But even that would have no guarantee. The doctor did say that it is more likely that she has a bladder, but that it has a hole in it that allows everything to leak right out. That would be easier to fix. Either way its not life threatening once she's born, just right now.
post #10 of 33

I'm so sorry you are going through this...

The fact that they are telling you it's not life threatening once she is born has to be the most sweetest music to your ears.

For what ever it's worth, my son was born with some urological problems and had to go through reconstructive surgery when he was 6 yrs. old and again when he was 10 yrs. We are lucky to live near Johns Hopkins and the world renowned Brady Institute (has the country's top pediatric urologist-- Dr. Gerheart). They can truly do some amazing things these days and although this is very difficult to go through with a child, I do feel that modern pediatric urology has truly advanced and children with these problems can go on a lead a completely normal life as though nothing was ever wrong.

Blessings to your and your little bean, Caroline
post #11 of 33
You and baby are in my thoughts, mama.
post #12 of 33
Oh, I am so sorry you're having to go through this. I can't imagine the stress and worry you're feeling. You and your family are in my thoughts.
post #13 of 33
Daisysmom, this must be so hard for you. I'm glad you at least got the good news that her heart looks great, and that the bladder issues will not be life-threatening once she is born. Keeping you in my thoughts.

Edited to add link to this article - a successful experiment in growing bladder tissue from a patient's own cells. Thought you might be interested since I'm sure all these possibilities are on your mind.
post #14 of 33
Sending our thoughts and prayers to you and your little one!
post #15 of 33
WOW! I don't know how you feel, but I know how it feels to go in for an ultrasound and hear some really hard things!!! We were told at our 20 wk visit that our little girl might have downs or cycstic fibrosis. We had to see a specialist to do a level 2 ultrasound a wk later. they bascially couldn't tell us much more. They don't know and really won't know what we are facing until we have her!!! My blood came back neg as a carrier for cf, so it's most likely not that. But the reasons they are concerned are b/c there is "brightness" in her heart and "brightness" in her bowel. It's all very subjective, they just know what they typically see these things with in u/s, but they can't tell you anything for sure unless you do an amniocentesis(sp?), and with the 1/200 risk of a miscarriage - we aren't doing that!!!! It was really HARD for me to swallow!!! But I feel like at the same time, I have learned some things about myself! : ( They gave us some "odds", and said they "odds" were in our favor, but we just know we have to trust the Lord because we just might be that ONE in 300!!! And if we are, the Lord's grace will be sufficient for us and our little girl!!!!

Again, I do NOT know what it's like to face what you are facing, but I do know it's so hard to get news that your baby isn't "the "normal" baby you expected"!!!! Just want you to know I'm praying for you and would love for you to keep us updated!!!!
post #16 of 33
Oh mama, I just wanted to let you know that I'm thinking of you, your baby daughter and your entire family. I watched my parents go through various stressful ultrasounds with my brother (he has Down's and is now 17). It was a very difficult time for everyone. I'm sending warm thoughts from north of the border and the hope that you end up with best case scenario results
post #17 of 33
Thread Starter 
Thank you everyone. Your support helps a lot.

Thanks VBMama for the link, that was a really interesting read.

shawndauganda, I am so sorrt you are having this difficult time. I do agree, something like this really shows you what you are made of and what is truely important to you. Hang in there, your odds are much better than mine were from the beginning. That's got to be worth something, right.

I have my next appt in just over a week, however it may be moved up a bit. I'll most likely need to air my thoughts afterwards, so I'll certainly keep you all posted.
post #18 of 33
You and your family will be in my thoughts and I hope the best for you and your baby.
post #19 of 33
Thanks : ) I will be praying for you and look forward to hearing how your appt goes!!! I KNOW it's hard!!!! We just went in for another u/s, and they still see the same things going on but can't tell us anything until our little girl is born.....but she's growing really well, so they say that is a great sign! It's just the waiting and trusting that's hard at times, right?! Definitely thinking about you, and I've shared your situation w/ several other that I know are thinking about you too!!!!
post #20 of 33
Thread Starter 
Well, I had a prenatal appt today and things are looking up a bit. We won't know for certain until the u/s on the 8th, but it looks like she's growing! I measured a week ahead and have gained 6 lbs! I know measurements don't mean a lot, but it does help a bit. We're keeping our fingers crossed that our little one is gaining well. I've increased my fat intake and switched to just whole milk. I want her to have plenty to draw from. I figure it's easier for me to lose weight after birth than it will be for her to gain it.
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