my twins

Specialties NICU

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Hi fellow NICU nurses.

I am currently on the other side of the NICU fence. One of my 34 5/7 twins is in the NICU. He was born Nov 12 weighing 1430 grams. I can tell you it truly sucks on the other side. This is twin B, Twin A weighed 2180 grams. I was induced because of twin B's IUGR. This twin also has Pierre Robin sequence, small jaw, short tongue and cleft palate. He has had the lip tongue fusion done and is doing well. Now we are trying bolus feedings and hopefully will soon be introducing a bottle and getting my little guy heading home. I have never seen this sequence before if anyone has any encouraging words they would be very much appreciated!!! He has also had 2 rounds of Indocin and his PDA is still small to moderate, however he has NEVER been symptomatic (desats, bradys), so we are just sitting back and waiting.

:confused:

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I am NICU nurse and I recently took care of a little one that had similar symptoms as you have described. He was a twin and was IUGR. I haven't taken care of him recently but he was born with a small jaw, short tongue that was causing some airway obstruction. He also had some other congenital defects but no cleft palate.

As with most babies that are in the NICU, it is a wait and see game a lot of the times. I wish you and your new babies all the best. Keep us updated on how he was doing.

Heather

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dstout-rn, every Pierre Robin child is different, but most turn out just fine. Some need more corrective surgeries than others. Fortunately, it is a well recognized and defined condition, so your son's MDs don't have to blaze the treatment trail. You might want to join a support group. http://www.pierrerobin.org/ is one or the NICU should have some resources for you.

Best wishes. Please keep us updated.

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HI all....

They are trying to feed my little guy YEA!!!!!!!! He is using the Haberman nipple and doing well with it. He weighs 1.68 grams now and looking cuter everyday.

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Fantastic news about your little guy!!!!

Thanks for the update too!

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Wow

It has been a few years since I posted this. My twins are fine. Twin B had is cleft surgery when he was 10 months old and never looked back. Thanks for all the kind support.

Dana :coollook:

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Thanks for the update! Glad to hear your twins are doing well

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Its great to hear your boys are doing so well. Thanks for the update:)!

The haberman is my fav for cleft palate and other feeding difficulties. It would be nice to hear how you liked/disliked it.

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For what is was able to accomplish it was great. The only problem we had was as he got bigger his mouth didn't grow well enough to allow us to feed him with the larger size. We purchased a "baby food feeder" at Wal Mart, it had a sippy type nipple but was soft so that when he needed to take a breath he learned to bite it so the milk wouldn't come out. However, that made for a good transition for him when his cleft was repaired as most physicians do not want infants using a bottle anymore.

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