New G-tube mom getting no answer from my babys team of Dr.s...What's next???

Michelle - posted on 02/17/2015 ( 4 moms have responded )

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I'm a new mom to twin girls 3mths old and one is still in NICU. She now has a feeding g-tube and is still not sucking or swallowing. Since she isn't swallowing her secretions she also has bradycardias that sometimes go down into the 50s so they will not discharge her. She is now at 7lbs and her sister is at 10lbs. Her team of Drs have ran multiple test and MRI's to airway evaluations and every test come back normal. So far all her genetic testing have came back negative except we are still waiting for results on Cornelia de Lang. My questions is the Drs have done all they can do is what it looks like to me and this week we are having a conference with the team to see whats next. If they can't help then who can is my question? Reaching out as I'm losing my mind on the emotional rollercoaster. Thanks!

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Michelle - posted on 02/18/2015

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We had a conference with her team of Dr.s and they think she just needs time also and with all the research I could possibly do that seems to be what she may need. She actually started to cough to clear her path way so that was a huge step for her. She is still having bradycardia through out the day so they just going to let her be. They wanted to put her on Robinol but I said no way she's been on it before and it does help dry up secretions but she sleeps the whole time and can't get much therapy done. Speech wants to try Vitalstim therapy so we are looking into that. She is such a mystery...

Sarah - posted on 02/18/2015

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You are in a good hospital for sure. She may just need more time to learn to mobilize the secretions. If she is starting to suck and root, that is a good sign. Are you feeling confident about her coming home, what is the plan?

Michelle - posted on 02/17/2015

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Thank you for replying. We are at Dell Children's hospital in Austin. I heard that was the place to be. They pulled them out at 34weeks and 5days. The twin B sis at home is healthy and never had issues she was always taking away from twin A. Twin A who is in NICU now has had speech therapy help her to suck with a pacifier and she is interested she even roots. She does resolve on her own when she has a brady but lately there's been a few times where the nurse has had to help her and that's either by suction or just moving her to get her heart rate back up. They've had to put an oxygen tube down her throat only after anesthesia cause she always has a hard recovery and has turned blue on me 3 times any anesthesia even with gas.

Sarah - posted on 02/17/2015

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My first question is what hospital are your girls being treated? How many weeks gestation were they born? Did the larger twin have sucking/swallowing issues? Does the littler one ever suck? Do her bradycardia events resolve when she is suctioned? How long, if ever was she on a ventilator and how long as she been off?

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