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Our complication update, ultrasound this morning *Updated 1st post August 7*


Forum: Due Date Club of November 2014

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  #1  
July 21st, 2014, 08:31 AM
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***Update August 7***

Baby looked the same as Monday today. No changes. Doctor said hopefully we'll see a change from the steroids on Monday when I go in to check her out again.

***Update August 4***

Baby update for the day is, not good news, not bad news. The tumor stayed about the same (slightly bigger measurement of 0.8 from Thursday's 0.7 measurement) Since I'm almost 24 weeks he decided I should have steroid shots. Steroid shots have been shown to reduce the size of these tumors so that's our hope. Doctor's words were that we needed to give the steroid shot in case we need to "do something" (thinking he means if she has to come early because of complications from this or in case she needs fetal surgery) and that we can give her the best chance for good lung development if we can get this thing shrunk down. He didn't like that her heart is still displaced but hopefully if it shrinks more her heart can move where it's supposed to be. So about the same but this doctor is more cautious than the other ones I think so it seems a little more...worrisome, I guess after I see him.



***Update July 31***

I had an ultrasound this morning. Last tumor measurement was 1.2 today it was 0.7!! Great, wonderful, super, awesome, fantastic news. Once these tumors start shrinking they generally don't cause the baby a ton of problems so this is a very promising sign for baby girl. Now the prayer is that it will shrink to nothing so that she doesn't need surgery to remove it after she's born and I would love to see her heart where it's supposed to be instead of smashed over to the right side of her body but we are SO very thankful that things are looking so good. We're still continuing with twice weekly ultrasounds (Mondays and Thursdays) for now but if things keep looking good they won't need to monitor quite as closely.

***Update July 28***

Praising God for good news this morning. The tumor shrunk a little bit. It was back to 1.2 this morning. So our measurements were 1.2, 1.55, and today 1.2. So happy that I bawled like a baby on that table. There's a margin of error...different doctors measuring, irregular shape of the tumor, etc so keeping my emotions in check but celebrating this bit of good news today.



***Update July 24****
We had a follow up u/s today. On Monday the mass measured 1.2 and the doctor didn't expect to see much change as far as growth in that short amount of time but it measured 1.55. So not good news. If it gets to 1.6 by Monday when they recheck it they will probably try steroids to see if it shrinks it. At 1.6 we have to worry about hydrops so we are very close to that number and it makes me sick to even consider. Thanks so much to those who are praying for us, keep it coming.
**********


I had my first follow up ultrasound this morning. They were able to measure the baby's tumor today which they were not able to do last week. There is a formula they use that measures the size of the mass versus the size of the baby. You want that number (CVR) to be under 1.6. Our baby's measurement today was 1.2. This is our baseline so we will know with the next ultrasound whether or not the mass is shrinking, staying the same, or growing. It's bigger than we want it to be but still under the critical level. If it gets to 1.6 she will be at risk for heart failure. Her mass is big enough that they want to see me twice per week to keep a very close eye on how she is doing. Right now there is no sign of heart failure so that is good news. I feel we are getting excellent care and they are watching things very closely so we are blessed in that.
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!

Last edited by jrchubbycheeks; August 7th, 2014 at 12:26 PM.
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  #2  
July 21st, 2014, 09:01 AM
KellJoO's Avatar Mega Super Mommy
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Joy- I am glad that you are still under the critical level. That is a relief. Continued prayers for your little one that things go smoothly and hopefully the mass shrinks on its own and is no concern anymore!

Keep us posted! How often will they check it?
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  #3  
July 21st, 2014, 09:03 AM
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I'm going to be going twice per week. Right now it looks like those days will be Mondays and Thursdays.
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!
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  #4  
July 21st, 2014, 09:11 AM
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Is she a candidate for surgery in-utero?
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  #5  
July 21st, 2014, 09:14 AM
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If it becomes necessary they do sometimes do fetal surgery. We're hoping it doesn't come to that.

The first step if she starts experiencing heart failure is to give me steroids and that shrinks the tumor sometimes, I think I read that has about an 80% success rate.

If that didn't work there is a possibility that they could drain the fluid filled tumor and that could help too.
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!
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  #6  
July 21st, 2014, 12:26 PM
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I'm glad that there are some things they can do to try and shrink the tumor. Hoping you don't have to do surgery and that the tumor will shrink on its own!
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  #7  
July 21st, 2014, 02:09 PM
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Hoping the tumor shrinks on it's own. Glad you're being monitored closely and getting such great care. Keep us updated!
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  #8  
July 21st, 2014, 02:34 PM
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(((HUGS)))...thinking of you and praying the tumor resolves without the need for treatment !
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  #9  
July 21st, 2014, 04:01 PM
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I am so glad you are getting good care!I am happy it's not worse but I am sorry she has to go through this!
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  #10  
July 21st, 2014, 04:18 PM
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I'm happy it's under that critical level, and I'm glad they're keeping such a close eye on things to make sure it doesn't effect her heart.
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  #11  
July 21st, 2014, 04:31 PM
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I am sorry. I hope it does not grow. So if it does do you have a qualified surgery to to the in utero remove? Or will they do it after the baby is born? I am sorry - getting ahead of things.

It sounds like you are happy with the care. I pray you are able to stay strong and the visits don't give you too much stress.


Thank you for the update. I am keeping her and YOU in my thoughts and prayers!!
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  #12  
July 21st, 2014, 08:04 PM
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They won't do anything until the baby is born unless she starts to experience heart failure. From what I understand, and I'm still learning, they could try to go in and put a shunt in the cyst to drain fluid (I think) or perhaps just go in and just drain it. They won't even do this unless it gets too big and is becoming life threatening though because it will be risky. If she does well though, doesn't develop hydrops, they will just let her be and after she's born they usually do surgery within that first year of life and they take out the lobe that has the tumor. Children's lungs continue to develop until 9 years of age so her body will compensate for the portion of her lung that is removed and she will be completely healthy. The scariest time will be from now until the tumor stops growing which usually happens between 23 and 30 weeks with the average being 25 weeks.
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!
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  #13  
July 22nd, 2014, 06:04 AM
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I'm glad you are being watched carefully, prayers for you
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  #14  
July 22nd, 2014, 06:57 AM
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I am praying hard for you and that sweet baby!! Praying that the tumor doesn't just shrink, but that it completely disappears! Thankful for great care
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  #15  
July 22nd, 2014, 07:51 AM
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Lot's of prayers that tumor shrinks on its own!
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  #16  
July 22nd, 2014, 09:44 AM
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Praying for you and your family. It's horrible to know there is something wrong with your baby and there isn't anything you,can do besides wait.
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  #17  
July 22nd, 2014, 01:34 PM
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I've been thinking about you. Thanks for the update. I'm glad they will be monitoring you closely and you have options available to you *just in case*
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  #18  
July 24th, 2014, 09:47 AM
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Bump for update in first post
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!
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  #19  
July 24th, 2014, 02:22 PM
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Sorry to hear it's getting bigger. I hope they can get things under control. T&Ps..
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  #20  
July 28th, 2014, 09:09 AM
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Bump for update in first post
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Joy, wife to Glen, mother to 13 year old Sanura, 10 year old Adrian, 8 year old Nevaeh, 6 year old Lincoln, 1 year old Charlotte, and new addition: Harper Ellen coming around Thanksgiving!
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