Score of 19 with amnio lung mat at 38weeks update DX PRS

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Score of 19 with amnio lung mat at 38weeks update DX PRS

Postby mommyofgirls » Sun Aug 08, 2010 10:50 pm

I'm posting this my DH's cousin. She is pregnant with her second baby. Her first baby she had a full abruption at 32 weeks. They both nearly died. Her son did the preemie roller coaster :cry: and has CP due to lack of oxygen & water on the brain which he may now need a shunt. She got the for sure CP diagnosis by MRI 3 weeks ago. Her son is 2.5 years old now.
She is now 38 weeks pregnant and overjoyed she got this far!!! Her OB wanted to deliver her tomorrow and had ordered an amnio fri to check babies lungs. She got the results and her score was 19 8O No blood, meconium detected and she doesn't have Rh which the dr said could scew the results. Her section is called off and he is baffled and wanted the weekend to get think of a new game plan. Baby would have to be intubated with 19 he said. She is now VERY concerned something is wrong with the baby. She's only 26. Her youngest sister died of Junes Syndrome after 1 week. So she is concerned about this as her sister had lungs the size of nickels. She has had over 5 US's and all have come back normal. After my MC DH and I had genetic counseling for everything found with Junes my DH was a 1:4 since DH and his cousins mother are sisters my risk is much less but nobody really knows there risk until it pops up into the family tree. We were also told that his cousin has a 1:2 (only if her husband is a carrier)of having a child with Junes. Her husband much less as no family history. I guess we will know soon enough. I just didn't know if anyone had any exp with having a low score and positive outcome. Please keep her & her family in your prayers.
Last edited by mommyofgirls on Fri Dec 10, 2010 7:48 am, edited 1 time in total.
Michele: 32 Dh:31
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:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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Postby Lizc0002 » Tue Aug 10, 2010 4:48 am

I have no experience with this, but sending out healing positive vibes toward your cousin and her baby.

Liz
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Postby mommyofgirls » Tue Aug 10, 2010 8:25 pm

Thank-you. I talked to her yesterday & she is scheduled for her section on fri. She is 3cm and losing her plug. This is so dangerous for her. I worry as we are super close. Contractions could cause a rupture. On fri. she will be 39 weeks. So awesome from 32 weeks before. I guess friday is pretty close since it's tues. I still worry. I told her no info on these boards yet.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby mommyofgirls » Sun Aug 15, 2010 8:05 am

I thought I would post an update in case anyone comes along with the same question. This is what I know as of right now. She currently lives in another state where no other family lives so I'm relying on updates from her mom who fly down to be with her. I got group e-mail Friday late at night saying he was born that am and is under the oxygen tent as he may have pneumonia. He has a growth on his ear & they are worried about kidney problems. Apparently the ears & kidneys grow at the same time in the womb. She finally got to see him yesterday evening for the first time and she got to BF him. That is all I know. Please keep them in your prayers.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby Mrs_Lurker » Wed Oct 27, 2010 7:18 pm

I was just wondering if you have any more info about your nephew?
Lily
DD born 3/30/07
DS born 2/3/10 w/ OI type I
M/C 6/29/11 (4wks)
#3 EDD: 10/3/12
Beta @ 13 dpo - 172
3/26/12 (12W5D) - we learned we're having a BOY!!
5/31/12 Yep, he's still a boy. ; P
DS born 9/25/12

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Postby mommyofgirls » Fri Oct 29, 2010 1:50 pm

Hi, thanks for asking about them. Yes, here's the update. So they both came home on day 4. Then 2 days later he developed a fever. She took him to the hospital where the suspected menegitis. After alot of tests it was indeed bacterial menegitis. He was in the hospital for 8 days. Which is really good becuase my BFF's daughter had the same and was in the hospital for 3 weeks. But she was born at 35 weeks so maybe that is why as well? After being home again he has done really well. No other problems breathing. She is really embarrased about the growths on his ears. They are more than tags so it's a little more involved she said to remove them. She hopes she can get them removed before the second week in Decemeber when she comes to visit & family get to see him in person for the first time. I can understand that. I talked to her this week and at his pedi visit they found a few things wrong :( His ear canals are filled with fluid and becuase of the way they are shaped it won't get better. So the pedi said tubes need to be done soon. Also his cry is raspy and the pedi looked down his throat and saw something with the flap(can't really remmeber now what she said sorry) so something is wrong with that. I feel absolutely horrible for her becuase it's always something. She still hasn't told anyone besides me & of course her parents that her oldest has CP. Now her newborn has some small issues so far that we know of. It's just not fair! Her 2.5 yr old needs a shunt placed shortly so I wish she lived closer for more support from all of us.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby Mrs_Lurker » Wed Nov 24, 2010 1:28 am

Thx for updating!

Goodness, what a journey she has been on. I wish I could give her a big hug. I'm happy to hear he's recovered well, and is home with his mama. I'll keep her in prayer.
Lily
DD born 3/30/07
DS born 2/3/10 w/ OI type I
M/C 6/29/11 (4wks)
#3 EDD: 10/3/12
Beta @ 13 dpo - 172
3/26/12 (12W5D) - we learned we're having a BOY!!
5/31/12 Yep, he's still a boy. ; P
DS born 9/25/12

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Postby mommyofgirls » Fri Dec 10, 2010 7:50 am

So at Children's yesterday he was diagnoised with Pierre Robin Syndrome :cry: He has everything but the cleft palate so that is at least good. Keep them in your prayers. My heart breaks for them.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby Mrs_Lurker » Sun Dec 26, 2010 3:42 pm

Were they able to remove the growths from his ears? Are those and his other issues related to the PRS? Has he seen a geneticist for the diagnosis?

I've been thinking about her and praying for answers and guidance. What a confusing road she's on. I would love to hear updates about his progress.
Lily
DD born 3/30/07
DS born 2/3/10 w/ OI type I
M/C 6/29/11 (4wks)
#3 EDD: 10/3/12
Beta @ 13 dpo - 172
3/26/12 (12W5D) - we learned we're having a BOY!!
5/31/12 Yep, he's still a boy. ; P
DS born 9/25/12

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Postby mommyofgirls » Sun Dec 26, 2010 4:18 pm

They came up for Christmas so I got to see them :yay: So nice to see them since it's been a year :( The growths are still there about an 1/2- an inch long. I know some people aren't in tune but it is quite obvious that something is amiss. Breaks my heart. Seriously I want to strangle the darn pediatrician!!!!!!!!!!!!!!!!!!!!!!!!!!! When a baby sleeps their bottom lip is slightly puckered or kindof droops down kwim well his makes a huge intention in from the bottom lip to the chin. His cry is so sad. It's so sad you can barely hear it even when he's wailing. Again very obvious something is wrong. The specialists say that the growths are not symptoms of PRS. Usually ear growths and kidney problems are correlated together since the ears and kidney's grow at the same time inutero. So far no kidney problems have been established. They did an renal us the day after he was born and all looks normal but I think an updated one should be done. All his issues besides the growths so far are PRS related. I hope it stays that way and there are no other surprises. He is pretty cute :D
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby Mrs_Lurker » Sat Mar 19, 2011 12:10 am

Have you seen them since Christmas? Any new updates on the baby? I think of him often, and just wonder how he's growing and progressing.
Lily
DD born 3/30/07
DS born 2/3/10 w/ OI type I
M/C 6/29/11 (4wks)
#3 EDD: 10/3/12
Beta @ 13 dpo - 172
3/26/12 (12W5D) - we learned we're having a BOY!!
5/31/12 Yep, he's still a boy. ; P
DS born 9/25/12

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Postby mommyofgirls » Sat Mar 19, 2011 7:00 am

No, they haven't been up since Christmas. It's a 14 hour drive I think she said. They only come up 2-3 times a year so far since they moved. Things are not good :( He's been in the hospital all week and another surgery is scheduled. They are thinking there might be another syndrome going on as well. They really aren't sure. Under the Dr.'s advisement they went ahead and had a chromosomal test run on him. So they are hoping to get some clear cut answers from it. Since PRS related he has a pretty mild case. He has water on the brain and ventriculomegaly which they were told they don't know how the hypotonia will play out but they hope he can walk without assistance and doesn't develop CP like there older son 8O :( He has a TPT tube in and will be getting a G tube on Monday. He's been aspirating all feeds and apparently has been for some time now. She says the Dr.'s are telling her his condition is very serious. She didn't go into it but said they have alot of important decisions to make this week. I wonder if the decision she is talking about will be to move up here so she can admit him to Hopkins or Children's here? Thankyou for thinking of them. They need all the prayers they can get. Good news is there 3 year old just started a special preschool program and he loves it. Loves getting on the bus :D So cute!What a Godsend! Since she has been by the little one's side at the hospital 24/7.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
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BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby Mrs_Lurker » Tue Nov 15, 2011 3:19 am

Any updates? I know I haven't been on in a bit, but wanted to check in and see how things are progressing with him.

And Congratulations on your new bundle as well!
Lily
DD born 3/30/07
DS born 2/3/10 w/ OI type I
M/C 6/29/11 (4wks)
#3 EDD: 10/3/12
Beta @ 13 dpo - 172
3/26/12 (12W5D) - we learned we're having a BOY!!
5/31/12 Yep, he's still a boy. ; P
DS born 9/25/12

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Postby mommyofgirls » Thu Dec 22, 2011 6:48 pm

Awww thanks. Well now they have taken away the diagnois of PRS. They have took some biopsy's and everything came back negative for a bunch of conditions they thought could be it. Right now they are just calling the syndrome his "name". The Dr.'s said they might never get a true diagnois but will just have to treat the symptoms as they come along. He's 16 months and strictly tube fed has a port and all that. Rolls around everywhere and got fitted for a pacer i think it's called. It's still too big. She said they are thinking he may be around 4yrs when he will be able to walk? IDK how they can figure, assume the time frame. I get to see them on Christmas:) So excited to see her! At the moment he is stable.
Michele: 32 Dh:31
:babyg: 3/16/1997
:babyg: 7/7/2006
:babyg: 1/3/2009
:angel: Angel:1/16/2008 via D&C @ 9.5weeks
Image
BFP:August 10th 2010 9/3 :hb: 131 11/22 :hb: 146
:babyg: My LOVE: Ella is here! April 8th,2011 7lbs 5.8oz
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Postby mjg1127 » Fri Jan 06, 2012 7:46 pm

Wow Michele. I'm just seeing this for the first time. I'm so sorry to hear about what your family is going through. I cannot imagine what stress they must feel. So sad that they can't get a diagnosis. I'll be praying for strength, peace and answers for them. Makes me appreciate my 4 healthy kids even more then I already do.
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:angel:10/1/06 (4weeks) :angel: 3/12/12 (5weeks)
DD - Jan 2006
DD - July 2007
DD - Sept 2008
DS - April 2011
DS - Dec 2012
Unless the Lord decides otherwise...our family is complete. :-)
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