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Old Dec 17th, 2010, 11:06 AM   11
HopefulMi
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Our baby has polycystic kidneys, a recessive disease which means dialysis and a transplant. 30-50% die neonatally but more often from pulmonary hypoplasia, rarely kidney failure. The fetal med doctor seemed to think because our AFI has always been OK until wednesaday (3.6cm then 1cm today), her lungs may have a decent shot but he says he can't be certain. Her chest circumfrence was 50th centile though which may suggest developed lungs.



 
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Old Dec 17th, 2010, 16:01 PM   12
raquel1980
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Hi there, I read your thread yesterday but didn't like to reply until you'd had more news. My story is slightly similar to yours so thought you might like to hear something positive!

At my 20 week scan one of my twins, Hannah, was measuring behind in growth and had low amniotic fluid (Deepest pool was 0.9cm - they can't measure AFI in a twin pregnancy), the consultant told us then we would most likely lose Hannah and even suggested we consider a selective termination to give Hannah's brother, Max, the best chance. We continued with the pregnancy and had regular scans where there continued to be low to no fluid. At 27 weeks my waters broke around Hannah and from then on she had no measurable pockets of fluid. Consultant told us that it was highly unlikely that Hannah's lungs would be developed enough to survive outside the womb but our twins were delivered at 34 weeks and although Hannah is still in hospital 7 weeks later, she is doing amazingly well and is now on just a smigden of oxygen - she is our little miracle baby and should be coming home in the next few days!

I'll be thinking of you hun, try and stay positive and remember that the doctors are not always right! xx



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Old Dec 17th, 2010, 23:19 PM   13
~Krissy~
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As hard as it is, try to stay positive! I know it's easier said than done. The latest news sounds a bit better than the first so I hope this is one of the 1st steps in the right direction.

Thinking of you & your unborn baby!



 
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Old Dec 18th, 2010, 00:56 AM   14
nkbapbt
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I am so sorry you are going through this. My experience is not exactly the same, but it does prove doctors are not always right. My son Lakai was born at 23.4 weeks, they found a Grade IV (bleed on his brain) when they did the standard head ultrasounds they do on preemies. His was bad and on his left side, they told us to expect the worst and removing him from life support was probably the best choice (not only because of the bleed but also because he was so premature and such).

We were told he would be very delayed, a very high chance of cerebral palsy and other disabilities from learning to gross motor to cogitative.

We knew we would never let him go, and we kept pushing for him to live. As the bleed dissolved it left "holes" in his brain, not huge ones..but still there are areas missing. This made his future even grimmer. And we were pushed even harder to let him pass away peacefully.

Fast forward to today...he is just over two actual and 22 months corrected. He is 100% normal, he has never had any delays, has no CP, has no learning issues thus far, he is your typical two year old. Into everything and silly.

He does have a feeding tube but that has nothing to do with his brain bleed.

The doctors wanted us to give up, and had we would have never known and be blessed to be parents to a very amazing little man.

Babies defy the odds every day. There are so many babies in this section that prove that, if not all of the preemies here do.

Please don't give up. Take it each day at a time, and as silly as this sounds...listen to your baby. What I mean by that is, you will know what is right, when it's right. Lakai told me he would be ok by holding my finger tip for the first time since he was born, when I left the meeting where the dr's pushed us to let him die...I knew then he would be ok.

Doctors are not really here to offer hope. We need to find it in our babies, in ourselves and else where.




 
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Old Dec 18th, 2010, 09:47 AM   15
AtomicPink
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Our story is almost identical ^^
We are all behind you hopeful_mi, stay positive, stay strong, we're always here!! Yu've got great support on here!



 
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Old Dec 18th, 2010, 10:18 AM   16
HopefulMi
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Its keeping her lungs good, its rare for babies to die from the actual kidney failure itself. I'm just so tired.

My next appt. is 31st Dec. They are leaving her in as long as possible but I dunno how that will help if she has no fluid. I guess she will be bigger and stronger and my kidneys are currently working for her.

The C-section is giving me nightmares though. She moves a lot but where it once was funny, it just makes me sad and feels weird, as its accentuated due to no fluid.



 
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Old Dec 20th, 2010, 03:02 AM   17
raquel1980
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The fact she's moving around a lot is a great sign hun, the consultants were always surprised at how much Hannah moved despite the lack of fluid. I know what you mean about it feeling weird as well and just making you remember that your precious baby isn't doing so well but keeping her in is the best thing. Are they checking dopplers regularly? And are you having regular CTGs? I was having CTGs every other day from 30 weeks and dopplers/ AFI check once a week and then daily as we neared delivery. Also, have you had the steroids yet?

I was terrified about the c section too but it's genuinely not that bad - you willbe so closely looked and the recovery really isn't too bad as long as you follow advice xx



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Old Dec 20th, 2010, 04:25 AM   18
HopefulMi
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My next appt is new years eve and they do dopplers afi and I had a ctg yesterday at MAU for reduced movements but she was just being naughty. Her kidney measurements at 97th percentile or just bigger and her lungs and throacic measurments are average so her kidneys aren't so huge they are pressing up yet I don't think. I think afi now will be 0 and we haven't had steroids yet as its not a PPROM scenario or pre-eclampsia. Its as and when they think she needs to come out but its her lungs that are the primary issue before the kidney failure.



 
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Old Nov 13th, 2015, 22:44 PM   19
JleStar
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Quote:
Originally Posted by HopefulMi View Post
My next appt is new years eve and they do dopplers afi and I had a ctg yesterday at MAU for reduced movements but she was just being naughty. Her kidney measurements at 97th percentile or just bigger and her lungs and throacic measurments are average so her kidneys aren't so huge they are pressing up yet I don't think. I think afi now will be 0 and we haven't had steroids yet as its not a PPROM scenario or pre-eclampsia. Its as and when they think she needs to come out but its her lungs that are the primary issue before the kidney failure.
what happened? I know this post is old. I am just very curious.



 
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Old Nov 15th, 2015, 10:39 AM   20
misspriss
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Quote:
Originally Posted by JleStar View Post
Quote:
Originally Posted by HopefulMi View Post
My next appt is new years eve and they do dopplers afi and I had a ctg yesterday at MAU for reduced movements but she was just being naughty. Her kidney measurements at 97th percentile or just bigger and her lungs and throacic measurments are average so her kidneys aren't so huge they are pressing up yet I don't think. I think afi now will be 0 and we haven't had steroids yet as its not a PPROM scenario or pre-eclampsia. Its as and when they think she needs to come out but its her lungs that are the primary issue before the kidney failure.
what happened? I know this post is old. I am just very curious.
I'll PM you.



 
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