My preemie twitches--very nervous

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

Re : My preemie twitches--very nervous

Postby nhgirl » Tue Aug 17, 2004 09:29 am

Okay, since I posted this I have only seen her twitch once, and by the time I got the camera it stopped. I'm hoping this is a good thing and it's just going away! Fingers crossed! Thanks again for all the input and warm welcomes!

:) Amanda
with DH Greg & baby girl Kate (born 7-23-04, 3 weeks early due to Pre-e)
Kate's page: http://pages.ivillage.com/nhgirl27/index.html
nhgirl
Registered User
 
Posts: 7
Joined: Thu Aug 12, 2004 03:42 pm

Re : My preemie twitches--very nervous

Postby jenn » Tue Aug 17, 2004 09:42 am

Thanks for the update!
Glad to hear things are looking up and up.



Jennie (25)
Shad DH (29)

Jaidyn 1.24.01 (30 wkr)
Severe PE/HELLP
2lb. 12oz.
http://www.babiesonline.com/babies/j/jaid/

Natalia Rosse
Due Thanksgiving day!
11.25.04
Natalia's web page
http://www.babiesonline.com/babies/n/nataliarosse/

jenn
Forum Moderator
 
Posts: 2038
Joined: Tue Jun 17, 2003 01:31 pm

Re : My preemie twitches--very nervous

Postby julie f » Tue Aug 17, 2004 10:31 am

Amanda,

Katharine is just toooooo cute! I love her little picture!

Just wanted to say, Congratulations, Hi and Welcome!

Julie (27)
Zachary James, 7/22/03-7/27/03, born at 26wks - severe pe

Miracle in progress... #2 is due February 2005!!!

Southern California Coordinator
User avatar
julie f
Registered User
 
Posts: 7993
Joined: Thu Aug 07, 2003 11:56 am

Re : My preemie twitches--very nervous

Postby samarasmom » Tue Aug 17, 2004 07:27 pm

Amanda
WHAT A CUTIE YOU HAVE THERE. That pic is sooooo adorable. GIve her a kiss for me.

Sandra 23
elijah 05/06/99
isaiah 03/25/02
samara 07/21/04
samarasmom
Registered User
 
Posts: 560
Joined: Fri Apr 09, 2004 09:37 am

Re : My preemie twitches--very nervous

Postby nhgirl » Fri Aug 20, 2004 08:13 pm

Thanks, we think she's cute, too (we're not partial or anything! lol). :)

Here's an update of our nerve wrenching past two days. Yesterday my mom was over visiting. She's a nurse of almost 30 years. Her first 20 years were in Labor & Delivery, then a couple in the NICU and now she is working in same day surgery. Anyway, Katharine did the twitching while she was there and my mom did not like it at all. I guess she didn't want to get me too excited, but felt like it was seizure-like activity. I told her how the doctors had dismissed it, etc. so she didn't say much but then today called me from work. She talked to a couple pediatricians at her work (one of the best hospitals in the world--Mass General) and they told her we should definitely have her checked. I called my pedi and told them that my mother saw the twitching I was describing and it concerned her, etc. They called back and said "if you hold her arm and it doesn't stop, then you need to take her to the emergency room." Well, nice of them to say that the other 7 times I brought it up! I swear, you learn more off the internet (here, thanks guys!) than from doctors sometimes. So, we went right into Mass General and my baby was taken such good care of. The EEG staff, pediatric neurology, general pediatrics, and some other specialists were all waiting to see her (the frantic grandmother had made the rounds and let them know we were coming--it pays to know people, they all stayed late on a Friday night to wait for us!). So, we went through the entire history with all these doctors (my pregnancy complications, family history, a million questions about the baby, the specific activity, etc). They were way more attentive and not dismissive at all like the other doctors I had brought it up to. So, they did an EEG on her (the poor thing was covered in electrodes and her head was wrapped in gauze but she was content the whole time). They did the test for over an hour and we could hear them all discussing the findings (yes, all these doctors stayed for her!). They are pretty positive what she has is Benign Sleep Myoclonus, which is an abnormal finding (not all babies have it, it does have to do with prematurity) BUT (very good but) it does not cause any problems. It is just a sleep thing they outgrow, and there are a couple types. One type they can have up until 3 or 4 yrs old on and off, the other type is usually gone by 4 months. Here's a link with info: http://www.medterms.com/script/main/art.asp?articlekey=24815

Anyway, what a relief, I really hope that's what it is! It really pays to know people. Not only did they spend all that time with us, but they gave us their email and pager numbers in case we notice anything different, and the neurologist gave me her email so I could send her the video I captured of the baby twitching. Oh, and they called to make sure we got home okay because the ER said they didn't see us leave or something. I couldn't get over it!

So, there's the update. I feel soooooo much better now and hope that it just goes away and nothing about it changes. They are going to do a follow up EEG in a few weeks just to be sure. :)

Thanks for all the support here! You guys are awesome!

:) Amanda
p.s. She weighs 7 lbs 4 oz today at 4 weeks old (which is really like 1 week and she was 5 lbs 3 oz at birth and 4 lbs 14 oz when we left the hospital at 1 week old!!!!!!)

:) Amanda
with DH Greg & baby girl Kate (born 7-23-04, 3 weeks early due to Pre-e)
Kate's page: http://pages.ivillage.com/nhgirl27/index.html
nhgirl
Registered User
 
Posts: 7
Joined: Thu Aug 12, 2004 03:42 pm

Re : My preemie twitches--very nervous

Postby samarasmom » Sat Aug 21, 2004 07:32 pm

Wow I am happy they found a reason for this. Maybe I should have Samara checked. What did they say to do for it. I know about the EEG. When Isaiah was a yr old last Christmas he was in the hospital for 3 days on one of those, he had a brain tumor and lost his reflexes on one side and had uncontrollable twitching on that side caused from the tumor but my doc is thorough and ruled out seizures.

She is growing like a weed. Samara is still 7 pds and was 5 wks early and was 6 12 at birth. YOu must be feeding that little girl MIricle formula. All that love pays off I tell you. Take care of her and I hope all works out for you guys.

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
samarasmom
Registered User
 
Posts: 560
Joined: Fri Apr 09, 2004 09:37 am

Re : My preemie twitches--very nervous

Postby nhgirl » Mon Aug 23, 2004 08:22 am

They said you don't have to do anything for it, she'll outgrow it if that is what it is (and they're 99% sure). I'm still so nervous about that other 1%, but I suppose I will be until it stops.

I'm feeding her breast milk, but from day 1 I supplemented. Until my milk came in (like 4 days postpartum) I gave an ounce of formula after bf'ing. Then I switched to pumping and giving her an ounce or two of breast milk in a bottle after bf'ing. Now I almost exclusively pump and give her 3-4 oz at every feeding every 3 hrs. Does anyone know if that is right and when I am supposed to spread the time between and increase the amount of oz's? She is 1 month old today, and 7lbs 4oz now.

:) Amanda
with DH Greg & baby girl Kate (born 7-23-04, 3 weeks early due to Pre-e)
Kate's page: http://pages.ivillage.com/nhgirl27/index.html
nhgirl
Registered User
 
Posts: 7
Joined: Thu Aug 12, 2004 03:42 pm

Re : My preemie twitches--very nervous

Postby paljane8 » Mon Aug 23, 2004 11:26 am

I am glad you found answers. Knowledge is power! Let us know how she progesses, will you? My Scotty developed night seizures at 4m. They look worse than they are. For some unknown reason Scott's 'hampster falls off the wheel' from time to time :).

Nancy Eastwood
Moderator
paljane8
Registered User
 
Posts: 1416
Joined: Fri Apr 04, 2003 02:17 pm

Re : My preemie twitches--very nervous

Postby samarasmom » Mon Aug 23, 2004 03:41 pm

I am a firm believer as my pediatrician that a child will tell you when they are hungry and how much they want to eat. My old ped tried to tell me I had to feed my oldest every 4 hours and no sooner and to offer 4 oz and he will eventually take it. He never did. He has a smaller stomach than my 2 yr old and he can out eat my 5 yr old. They are different kids and have different needs, you can try to offer more and spread the feedings if she acts like that is what she needs, Start by offering a little more and see if she can hold it down and if she is satisfied longer
Good luck and let me know

Sandra 23
Michael Abron ( fiance)
Elijah Kristopher Michael Abron ( 43 wks no complications) 5/6/99
Isaiah Liam Abron ( 37 wks PE and Preterm labor) 3/25/02
Samara Juliyana Abron ( 35 wks PIH and poss PE ) 7/21/04
samarasmom
Registered User
 
Posts: 560
Joined: Fri Apr 09, 2004 09:37 am

Re : My preemie twitches--very nervous

Postby jenn » Tue Aug 24, 2004 11:56 am

I'm happy to hear you got answers, and good ones at that.
Prayers she outgrows it sooner rather than later.
Lots of love!

Jennie (25)
Shad (29)
Jaidyn (3) @30 wks
Severe PE/HELLP
2lb. 12oz.
http://www.babiesonline.com/babies/j/jaid/

Natalia Rosse
Due: 11.25.04
http://www.babiesonline.com/babies/n/nataliarosse/

http://www.ofoto.com/PhotoView.jsp?collid=182798555105&photoid=588409555105&Ucollid=182798555105&Uphotoid=114209555105&refreshkey=1092871853409
jenn
Forum Moderator
 
Posts: 2038
Joined: Tue Jun 17, 2003 01:31 pm

PreviousNext

Return to Parents of Preemies

Who is online

Users browsing this forum: No registered users and 2 guests

cron