Big Setback

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.
pixie323
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Re : Big Setback

Postby pixie323 » Sat May 24, 2008 11:58 pm

Hi!

So, sorry to hear that Randall is fighting NEC at the moment. We have just been through the fight with it. Isaac developed NEC on day 2, he was placed on antibiotics and made NBM. I expressed and kept my milk supply going. Sadly Isaac had difficulty tolerating the additives that eventually added to his breastmilk to help him grow, so we had 2 more incidents, after the 1st. We were told that they can continue to have NEC scares right up to fullterm. But luckily Isaac is just passed fullterm now and at home.

I know how scary it is and how frustrating it is not be be able to breastfeed, when all you want to do is, do it. Because of all the Isaacs incidents, I wasn't allowed to breastfeed him until 35wks. I use to get so annoyed, as all these new mums would be doing it (eg. 32wkers), but now looking back, they were doing what was best for him and I now have him home, so I'm sooo luck!!

I hope that Randall makes a quick recovery and you can start to nurse him soon. Trust me, it will happen, he just has to get better first!!

Lisa.

katevans
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Re : Big Setback

Postby katevans » Sat May 24, 2008 09:41 am

HI Patty,
Thinking of you and baby Randall. I hope things are looking positive.

pld0804
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Re : Big Setback

Postby pld0804 » Fri May 23, 2008 08:44 pm

Hi Patty - just wanted to let you that I'm thinking about you and Randall. Hope that you're both doing well.

jenn
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Re : Big Setback

Postby jenn » Fri May 23, 2008 05:59 pm

Hey Patty, you've been on mind - hope Randall is making a comeback.
In my thoughts and prayers guys!
Love Jenn

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audrey s.
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Re : Big Setback

Postby audrey s. » Fri May 23, 2008 01:59 am

Any news? Hope things are going a bit easier for Randall!

Still thinking of you both.

ladybug76135
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Re : Big Setback

Postby ladybug76135 » Wed May 21, 2008 10:49 pm

I'm sorry to hear this. We developed NEC after 7 weeks in the NICU. I blame a nurse giving him a formula bottle and/or letting him suck on her finger. While DS got over the initial infection fairly quickly, it took forever, another 7 weeks to get his intestinal motility to return to semi-normal and get him back to nursing. I hope your course is much, much shorter.

Good luck!

amanda
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Re : Big Setback

Postby amanda » Wed May 21, 2008 10:39 am

Oh goodness I am so sorry Patty! I hope that Randall gets better soon!
Just adding to what others have said, we weren't able to nurse until just here recently (2 mos) - dd just couldn't - the flow was too strong but she took to it so quickly and still transitions from bottle to breast every day without a problem!

Until then can you hold Randall? I'm guessing they are letting him take a paci to keep up his sucking - right? If so then maybe holding him in the feeding position with the paci to keep him 'reminded' of the breast might work? It might not but just a thought!

I hope that things go quickly and that he's over his setback ASAP!

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audrey s.
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Re : Big Setback

Postby audrey s. » Tue May 20, 2008 08:43 pm

My DD was 37 weeks and developed this her second day of life. She had emergency surgery (was really quite ill) and they removed her entire colon. She had an ileostomy for six weeks then surgery to re-connect what was left. In the first and second surgeries both, they did note that she had significant scarring in the small bowel, but they didn't have to remove any of it, so she absorbs nutrients just fine. Now she is 13, and 75% for height, 65% for weight, and quite healthy. She has had some immunity issues (mostly skin infections that we can't get rid of) and when she "poops" it can take 45 minutes. But most of her friends/teachers/adults around her have no idea. She did spend seven weeks in the hospital, got home for a day, then returned for another week.

They told me not to bother with nursing, and my milk didn't come in for ten days as I'd been so sick. However, I persisted, and insisted, and she was able to take breast milk starting at four weeks. She then developed an aversion or allergy to the Pregestimil they put her on, and it turned out she was violently allergic to milk products of any kind, which she has subsequently outgrown. We nursed for 18 months (exclusively for 7) and she has done quite, quite well.

Believe me, I know how scary this is, and I wish she hadn't had to have the surgery, but she's an honor student, darn near as big and tall as I am, and has rarely missed a day of school due to illness. We got very, very lucky. Now she was five lbs, so your mileage may vary. If you have any other questions, just PM me (although I don't get on every day) and I'll do my best to answer them! Oh yes, and she's been a vegetarian for four years now!

aggie95mom
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Re : Big Setback

Postby aggie95mom » Tue May 20, 2008 06:30 pm

Hi Patty,

I'm sorry to hear Randall is dealing with NEC. My son, too, went through this around 7 weeks old (he was born at 26 weeks). I know it's so hard to be in a good pattern only to be thrown backwards again, but it's really wonderful the neos figured it out quickly and are able to treat him. So many babies end up getting so sick before NEC is finally diagnosed and needing surgery. I hope Randall heals well and can avoid this. Bowel rest is essential for his recovery. Jacob was off all feeds (was bottle at the time) for 8 days and there were a couple in there that they wouldn't even let me hold him. Thankfully he did recover and they resumed feeding him very slowly.

If you are able, pump while you are not able to nurse. Jacob wasn't nursing at the time, only being bottle fed (very long story), but about two weeks after he was better and a champ at the bottle, we started nursing and he thankfully took to it very well.

jenn
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Re : Big Setback

Postby jenn » Tue May 20, 2008 04:36 pm

Patty,
I too do not have any experience with NEC, but like the others, what to let you know you guys are in my daily thoughts and continued prayers.
Get well soon wishes to Randall!!

Much love, Jenn


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