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.
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heather j
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Re : Big Setback

Postby heather j » Wed May 28, 2008 11:14 pm

Patty, what a great update! And just repeating what's already been said, he's just beautiful in his little blue hat!

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caryn
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Re : Big Setback

Postby caryn » Wed May 28, 2008 09:23 pm

Oh, that sounds so encouraging!

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patty
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Re : Big Setback

Postby patty » Wed May 28, 2008 05:47 pm

Thanks, I love that picture of Randall too! Things are going well today. He has started feeding again and they are even letting him begin straight on the breast, weighing him before and after and then supplementing with expressed milk until he gets his feeds up to the maximum amount I believe they said 38 ml. He actually got 10 ml from his attempt at nursing today. I am so hopeful that all the bad stuff is behind us and that things can only keep improving.

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audrey s.
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Re : Big Setback

Postby audrey s. » Tue May 27, 2008 01:00 pm

He's adorable!

We had no problems whatsoever with the breast-feeding. They need that pacifier while NPO so they don't develop oral aversion (which you sometimes see with kids who've been intubated too long) and to keep developing their sucking muscles. Rebecca never had any trouble getting the latching on even though she'd never done it before.

She was never given fortifier, but they severely limited her breast milk consumption the first couple of weeks that she could eat (she was NPO essentially her entire first three weeks). Then one night she got sick on the Pregestimil (supposedly pre-digested) and I begged and begged to be allowed to give her exclusively breast milk. It worked great. She did have a bit of trouble gaining weight, but by then we'd discovered an extreme milk allergy -- I went totally dairy-free while nursing her for those eighteen months. And she started at a bigger weight than Randall anyway, so the calories were less of an issue, especially as she got TPN the whole time.

Glad to hear Randall didn't need surgery! That's great news! Best wishes to you all...

amanda
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Re : Big Setback

Postby amanda » Tue May 27, 2008 10:01 am

Hi Patty! I just wanted to let you know that Randall's pic is SO cute - I love his little hat! Anna Grace wasn't able to nurse for the first two weeks (except for a couple of times) and took to it like a champ although I had to use a shield for the first couple of tries. She never did have any confusion though and now she switches between breast and bottle very well as a matter of fact she only recently started to nurse exclusively while at home.

We also had a problem with the fortifier - it made her have (sorry TMI here ) diarirea to the point that her little bottom was so red that she had to go without a diaper - once they discontinued it and put her on just BM she did a lot better and finally started to gain weight - go figure!

pixie323
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Re : Big Setback

Postby pixie323 » Tue May 27, 2008 04:23 am

Hi Patty,

I'm so glad to hear that he is getting better. I love your picture of him. He is gorgeous. Don't stress too much about the paci. We ended up giving one to Isaac and he had no problems attaching and breastfeeding. I was always against them, but now I'd happily give him one at time to settle him if I could, but he has a large strawberry birth mark on his lip going all the way down to his gum line, so we are trying to avoid too much friction on it.

With the fortifier, we tried twice to add it to his EBM, with no luck. Each time his tummy would swell, he would go hypothermic, he would vomit++ and go all limp. In the end they added polyjoule to his diet with separate additives (at different times of the day) and he had no other issues. He loved the polyjoule.. I think it is really sweet.

Anyway, best of luck. They will probably want to monitor how much he is consuming and if he tolerating it (which is hard to do when breastfeeding). But the breastfeeding will all eventually happen. Like all the others have said, they will probably only allow you to breastfeed once a day to begin with and then slowly increase the number of sucks.

Please keep us updated!!

Lisa.

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Re : Big Setback

Postby emersons mom » Mon May 26, 2008 11:42 pm

Just wanted to say that is the best pic! he looks so focused on you and happy, a hard feat in the nicu great picture, what a cutie.....chiming in with Kara, our nicu would not allow bf more than once a day and that was when we were in the growing room about to come home, they even sent us home with fortifier! wishing you all the best!

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Re : Big Setback

Postby kara » Mon May 26, 2008 06:00 pm

Hey Patty,

Good to hear Randall is on the mend. The human milk fortifier is made with human breast milk, and is commonly given to these little ones. I think these kiddoos are just at high risk. Our DD used a paci and breastfed just fine, so hopefully that will work for you guys too. Even after she was allowed home we were only allowed to breast feed once a day, and then she had breast milk by bottle the other feeds...too taxing to breast feed all the time. She never got confused. Keeping fingers crossed for you too.
Hope you are getting some rest too. Randall needs a healthy mommy too! Hugs!!

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Re : Big Setback

Postby jenn » Mon May 26, 2008 05:50 pm

Hi five Randall! Great update!

Patty, sending my hugs and thoughts. With a fighting attitude like he has... I know he'll be home and in your arms (hopefully "latched" on to a boo-bah) soon.
All my best!
Jenn

p.s. LOVE THE PIC!!

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patty
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Re : Big Setback

Postby patty » Mon May 26, 2008 03:09 pm

Thanks everyone. Randall's NEC seems to be improving,the x-rays of his belly are now normal and he did not require any surgery. He is on day 8 of the antibiotics and the NPO(nothing by mouth order. They should resume his feeds Wednesday. I am able to hold him now because his chest tube is out and he is breathing on his own. I am still pumping but am very anxious to get him back on the breast though they will probably want to wait a few days to be able to measure what is going in and begin very slowly. He does take a paci though I would not normally use one I have let him have it since it all the comfort he has right now. I am worried about him developing nipple confusion though. Lisa that is interesting about the fortifier because they were adding it to Randall's breastmilk right before he got sick and the chance of NEC is suppose to be reduced if breastmilk is all they are given. I questioned if the fortifier could be the cause as well but they said it had no cow's protein but I am still not comfortable with him having it again. They were also giving him iron and I wondered if that could have been an irritant too. I just can't wait for him to get over this and get to come home. I don't feel like I can relax until he is here with me.


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