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little EDr_Stabone - 06:55am Feb 10, 2007 ESTHi Share, I am the mom of Elena, who was born at 33 wks and spent the next 5 in the NICU. Elena was diagnosed at about 8 months with Cerebral Palsy. We are lucky, as she has a mild case of spastic diplegia, and receives excellent theraputic services. She is now 21 months old. Elena wears AFOs, and cannot walk independently (yet!) but does cruise very well. Her vocabulary is quite limited (about 5 words) but we use sign language at home, and her sign vocabulary is 27 signs (and counting). The current push is to get her walking; our therapists said the question isn't whether or not she'll walk independently, but whether she'll do it without devices (such as Loftstrand braces). There is a chance her right side is more affected, as she is noticeably weaker on that leg. She had PVL, I'm not sure what degree; an MRI of her brain showed 'extreme brain damage' to the white matter of her brain. Apparently if someone were to see her scan before meeting her, they wouldn't expect her to be doing well at all, as there isn't much functional white matter. It was discovered after her birth that I had vasa previa (abnormal attachment/structure of the umbilical cord to the placenta) with my pregnancy. I had a PERFECT pregnancy...until 33 wks. My husband and I are now open to having another child, and while no one can be sure how to avoid CP, not having another preemie would be a good start. I am petrified of having another case of vasa previa, but my docs assure me that the chances of that are next to none. I'm sure other parents out there were pretty nervous too about future kids after spending time in the NICU. Any advice?
weerock
- Feb 10, 2007 10:18 am
(#1 Total: 6)
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Mom to Leighton (30 weeks), Emerson (33 weeks), and an angel, Phillip (25 weeks) |
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Welcome to Share.
Congratulations on Elena. It sounds like she's doing very well, and will be walking soon! I'm so glad.
I am certain you are scared to have another child. I lost my first son after his early (25 week) birth. HE lived for 2 days. I was petrified when I was pregnant again - but constant visits to my Dr. for reassurance helped (having a Dr. you know you can count on is HUGE). Leighton was born at 30 weeks, and spent 35 days in the NICU.
I so wanted another baby - leighton deserved a sibling. I decided that my love for her was greater than my fear, so we tried again. So many advances had been made since Leighton..and this pregnancy was spent receiving Progesterone Shots, and getting all sorts of testing done. AND bedrest. It all paid off. While I didn't make it full term, Emerson stayed put until 33 weeks. She spent 11 days in the very same NICU Leighton had been in.
Both of my girls are very healthy today. I know we're lucky. Truly, the decision to try again is a difficult one. It's definitely a leap of faith.
I wish you the very best of luck.
Denise
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2 here 2 in Heaven
- Feb 11, 2007 9:59 pm
(#2 Total: 6)
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Surviving 26 week triplet...2 angels, & a 36 week singleton. |
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Welcome to Share!
It is wonderful to hear that your daughter Elena is doing so well. It sounds like she is a miracle! I LOVE how you said is isn't walking (yet).........it is so encouraging to see a child with special needs who has a wonderful parent standing behind them!!
BEFORE you become pregnant again, I strongly encourage you to meet with a perinatologist (high-risk doctor). While CP may be highly unlikely with a new pregnancy, it would be good to have an expert following you. They would most like develop a plan ahead of time with you, and watch you closer. Best of luck on this decision.
-Shonda
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Dr_Stabone
- Feb 12, 2007 11:19 am
(#3 Total: 6)
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Progesterone shots?
Thanks Shonda, I spoke to my doc and I will have tandem care--both by a high-risk OB and my regular doctor should I get pregnant. He did mention that I would probably be a good candidate for the progesterone shots. Has anyone had these? What are the side effects? And, by chance, has anyone who has had the shots been previously ammenoraic (infrequent periods) prior to pregnancy? Just wondering.
Wow. This is one incredible support group. THANK YOU SHARE!
(also, I posted a picture of E, check it out!)
myfirstcookie
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weerock
- Feb 12, 2007 11:38 am
(#4 Total: 6)
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Mom to Leighton (30 weeks), Emerson (33 weeks), and an angel, Phillip (25 weeks) |
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Oh wow - she's super cute!
Yes, I had progesterone shots with my last pregnancy. Other than being a little "sore" at the injection site (which is in your rear-end!), it wasn't bad. I would recommend switching "sides" each week - and taking your weight off the side the shot is being given in while the shot is being administered!
Much luck to you. I got 3 more weeks out of my last pregnancy...and I really believe the shots were a contributing factor!
Take care,
Denise
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cbparis
- Mar 7, 2007 4:39 pm
(#5 Total: 6)
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Vasa Previa
Hi Dr Stabone, I also had a vasa previa baby. And mine was undiagnosed as well, which cost my Nathan his life. I was terrified to have another baby! But it was the only way to fill our empty aching arms. I made them check me for vasa previa the next time round, even though my doctor had told me it was "statistically impossible" to have it again. I'm glad I made them check for it because as I later found out, you have about the same chance of having it again as you had the first time. It is possible to diagnose vp prenatally. While it has a very high fetal mortality rate if undiagnosed, it has a nearly 100% infant survival rate if diagnosed and properly managed. So, vp was about the only thing I wasn't worried about the next time after having been checked for it. There's more information about diagnosing and managing vasa previa at http://IVPF.org Nate died in 1996 and in 2001 myself and some other vp parents organized the International Vasa Previa Foundation (IVPF). You are welcome to pop in, if you haven't already. I'm so happy that Elena survived undiagnosed vasa previa. But I am heartbroken she has the problems she does. All you have to do is know its there to prevent the deaths and injuries it causes. Cindy Paris, IVPF Co-Founder, Secretary, and Director
Mum to Nathan Elliot Paris ^i^
http://NathanParis.com Visit http://IVPF.org to learn about vasa previa. It only takes a moment to diagnose life...
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Timmy's Mommy
- May 4, 2007 6:39 pm
(#6 Total: 6)
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question
My son was just diagnosed with PVL and CP as well. Can you recommend anything to help? He's 11 months old and he cant sit up alone and is not even close to crawling. Any info would be great.
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