unfriendly ultrasound results - Mothering Forums

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#1 of 33 Old 05-25-2006, 12:35 AM - Thread Starter
 
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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.
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#2 of 33 Old 05-25-2006, 08:14 AM
 
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Ooo, I'm sorry! This must be rough. You're in my prayers. Hugs!

Cara
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#3 of 33 Old 05-25-2006, 08:45 AM
 
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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
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#4 of 33 Old 05-25-2006, 09:59 AM
 
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I'm so sorry. I hope everything is okay.

Mama to DD 06' Partner to Sasa
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#5 of 33 Old 05-25-2006, 11:42 AM
 
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Hugs to you!! I hope everything will turn out OK!

Deb
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#6 of 33 Old 05-25-2006, 04:48 PM
 
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I hope everything turns out fine
*hugs*
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#7 of 33 Old 05-25-2006, 07:34 PM
 
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Keeping you and your babe in my thoughts
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#8 of 33 Old 05-26-2006, 01:40 AM
 
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I am so sorry, i will bethinking of you and your baby.

YOur little girls are so cute!


Kaitlin
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#9 of 33 Old 05-26-2006, 02:44 AM - Thread Starter
 
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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.
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#10 of 33 Old 05-26-2006, 09:28 AM
 
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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
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#11 of 33 Old 05-26-2006, 10:08 AM
 
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You and baby are in my thoughts, mama.

J - Birth doula and *very* grateful mama to bouncy Q, fancy F, and mighty F!

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#12 of 33 Old 05-26-2006, 10:19 AM
 
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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.

Paige, mama to three girls, (10), (8) and (3)
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#13 of 33 Old 05-27-2006, 05:33 PM
 
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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.

Keeping busy with 2 boys & 1 girl ('04, '06, '08)
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#14 of 33 Old 05-30-2006, 02:43 AM
 
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Sending our thoughts and prayers to you and your little one!
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#15 of 33 Old 05-30-2006, 05:10 PM
 
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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!!!!
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#16 of 33 Old 05-30-2006, 05:23 PM
 
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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
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#17 of 33 Old 05-31-2006, 12:16 AM - Thread Starter
 
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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.
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#18 of 33 Old 05-31-2006, 04:14 AM
 
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You and your family will be in my thoughts and I hope the best for you and your baby.
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#19 of 33 Old 06-02-2006, 04:47 PM
 
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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!!!!
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#20 of 33 Old 06-02-2006, 06:01 PM - Thread Starter
 
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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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#21 of 33 Old 06-05-2006, 02:58 AM
 
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Ill keep you & your sweet baby girl in my thoughts & prayers. :

Mama of 2 boys, 5 girls.grouphug.gif

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#22 of 33 Old 06-05-2006, 03:18 AM - Thread Starter
 
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so, as if things weren't annoying enough...I got bit by a spider and now have this huge bullseye on my arm. They think the center is turning neucrotic (sp?). Joy of joys! If it isn't one thing its another...:
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#23 of 33 Old 06-06-2006, 06:52 PM
 
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Oh, Marybeth, you poor thing! When it rains, it pours, as they say. Too bad it poured a spider of all things...

Mimi :yawning: the happy mama of one DD & one DS ; married to my sweetie.
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#24 of 33 Old 06-10-2006, 09:15 PM - Thread Starter
 
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well our week has definitely gotten better! My spider bite is almost gone. And our u/s went much better than expected. At 25 weeks now she weighs 1 lb 8 oz!!! I am so thrilled she's gaining well. And nothing got any worse! this is about the best finding we could have had right now. Things are at a temporary stand still. This should but us a little more time. They now sound very optimistic about us making it past 28 weeks! last time they were unsure if we'd even make it any closer than 26-27. I am grateful to have a bit more time.
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#25 of 33 Old 06-10-2006, 11:05 PM
 
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I'm really happy to hear you had a good update mama! I have been thinking about you and your little family.

If you don't mind my asking, why is it that they think you will go into preterm labour? I thought baby just had bladder/growth issues?

Keep in touch and let us know how things progress!

 Grateful midwife and peaceful mama to three blissfully birthed, amazing children: dd (10)dd (7) and  ds (5).
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#26 of 33 Old 06-11-2006, 01:11 AM
 
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That's good news! Every extra day she stays in means she will be a little stronger for what lies ahead.

Still thinking good thoughts for you and your little one over here.
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#27 of 33 Old 06-11-2006, 01:25 AM
 
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Were any of the things they mentioned to you Potters? My son had that... Classic, though - the other types are survivable.

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#28 of 33 Old 06-11-2006, 11:56 AM - Thread Starter
 
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Quote:
Originally Posted by blissful_maia
If you don't mind my asking, why is it that they think you will go into preterm labour? I thought baby just had bladder/growth issues?
They don't think I will go into preterm labor. The concern is that if the swelling in the genital region gets too much worse it will cause the urine to back up into her kidneys. When that happens she will die if they don't take her early.

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Originally Posted by littleteapot
Were any of the things they mentioned to you Potters?
No, I've never heard of Potters. What is it? I'm sorry about your son.
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#29 of 33 Old 06-11-2006, 12:33 PM - Thread Starter
 
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K, with the exception of a few hours of crying when this first sunk in, I have been doing pretty well. Thursday morning however was a completely different story. I was fine until I had to pack my bag for the hospital, you know, just in case. It just didn't seem fair to have to be ready for the baby to come when I'm only six months along. And that's lunar months, not calendar months. It didn't phase me to pack up my older daughter and send her down to Utah while we figure things out. I wanted to protect her from the situation for as long as possible. It didn't phase me to pack my younger daughter's overnight bag with enough clothing and diapers for 4 days, just in case. But packing my bag (and I had already been putting things in a pile as I came across them over the last few days) really broke me down. I was crying so hard I couldn't see. I didn't know what I was going to do. I couldn't quite pinpoint exactly what I was feeling, but I was definitely feeling a lot of whatever it was. I think it was mostly a feeling of helplessness, suprisingly there was no fear. I had prepared as much as I could in the time I had (I still plan to keep preparing as much as possible) and knew there was nothing more I could do. Not knowing what is going to happen, let alone when and WHY, is very difficult. I have known that this is all in the Lord's hands and that He has a purpose for what is happening. He has made that clear from the beginning. I would never do anything to change His plan, I know this is going to be something that will change me forever. But that doesn't make it easy.

Somehow I made it through the morning and got the things done I needed to get done. Luckily DH got off work an hour early, so we got to leave early. (did I mention this all hapened on his birthday? poor guy) The next morning I stopped by Walmart. While I was meandering through the baby section checking out the preemie stuff (good brands even, and very reasonable prices. Only have the larger preemie sizes though ) I ran into an old youth leader from growing up. She was pregnant too and we got to talking. It turns out that after I moved away to college she got pregnant with her third child and from the beginning there were problems. She spotted weekly for the first tri and at 19 weeks her water broke. She was put on complete bed rest (every time she even moved her feet fluid would gush) for the rest of her pregnancy. She spent most of the rest of her pregnancy in the hospital. Miraculously (sp?) she managed to avoid infection and carry her daughter to 30 weeks. Because of the fluid issue however, the baby's lungs never developed. She managed to live for 6 hours and they were blessed with the oppertunity to hold her before she died. Her two older children didn't get to meet their sister until the next day. The oldest was three and the youngest was 19 months (the same age Zoe is now) and they still talk about the day they met their sister.

I am so glad I ran into her. After talking with her I felt so lucky. I am 25 weeks along and I am in perfect health. I am not limited at all in what I can do right now. I have not yet had to stay at the hospital, I am free to carry on my life as normal. We are well ahead of the game with the baby. Most of the time this problem isn't discovered until birth because VERY FEW u/s techs are even trained to see it. The surgeons have been alerted as to the situation and are already preparing for whichever of the possible outcomes we might be facing. I have really good doctors and a top rated NICU. Even better...Things stayed the same over the last two weeks! I have a little more time to carry my child before she comes into this world. What more could I ask for. Besides, I have been reminded..."Faith is not to have a perfect knowledge of things...". Just because I don't know what my Heavenly Father's plan is or the reasons behind it, doesn't mean I can't have faith. Some things aren't meant to understand at the time. If you understood all the reasons it wouldn't have such a profound influence on you.

Well, thanks for listening (if any of you actually made it all the way through). I guess I really just needed to talk.
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#30 of 33 Old 06-11-2006, 02:27 PM
 
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Quote:
Originally Posted by daisysmom
No, I've never heard of Potters. What is it? I'm sorry about your son.
Potter's is something like five different severities of the same idea. Classic Potter's is bilateral renal agenesis: no kidneys or bladder ever developed in the first place. That one is always fatal (Potter's Type 1), but the other ones are survivable to varying degrees.
I went into preterm labour with my son because apparently no pregnancy with it lasts more than 35 weeks. I know he needed to come out then, though - since 50% are stillborn he would have died if he'd stayed in. Instead he got to come out alive and be with his daddy before he passed peacefully.

I had an unassisted pregnancy, so I didn't "find out" what was wrong, but I knew.

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