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Aubrey update and a question


Forum: Preemies/NICU

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  #1  
October 16th, 2011, 05:07 AM
AngelaMarie's Avatar Owen's Mommy
Join Date: May 2009
Posts: 3,094
I thought I would post a quick update and ask a question of the other preemie moms. Aubrey is now officially 2 months old. We are still in NICU, no signs of that changing any time soon. On September 23rd Aubrey had heart surgery to put a BT Shunt in. She recovered from surgery quickly but her oxygen saturations never became normal as we were told they would. After a week of this Neo finally ordered an Echo and we found Aubrey's shunt had failed and she had a blood clot in it. It took them a few days to put their heads together and finally took her to cath lab to put a stent in. Since then she has not required any oxygen. However, since the shunt failed and they were concerned about an emergency they intubated her. They tried to extubate her after nine days and she had several episodes of stridor and had to be reintubated. They took her to OR to do a bronch and lasered off scar tissue. She was then successfully extubated.

Since then however on 3 occasions while straining to have a bowel movement she's become limp, mottled, lips turn sheet white, she's cold sweaty and unresponsive. Cardiology believes it's a vagal nerve reaction to straining to poop. She was very constipated from all the morphine.

Here's my question. I'm having a really hard time with the Neonatologist. I have gotten administration involved but it's the weekend and they is no one around to hold them accountable other than me. I have been told numerous times that stool softeners as cardiology suggests and suppositories are not preemie protocol and not hospital protocol. If I could live my life and never hear about protocol again I'd be happy. She has had a few successful bowel movements. The stress of all of this and the way the Reglan was making me feel I had to quit taking it so I have no more breast milk. They started her on Neosure a week ago and she's constantly grunting, very gassy, and literally not sleeping. Yesterday she was awake and fussing and grunting for 12 straight hours. At this point I want them to switch formulas which yesterday I was told no, that I don't have a choice, and she will take Neosure until she's one. Obviously that's not going to happen. Has anyone else had to put their preemie on a different formula and if so which one? I'd like a few suggestions of things to try before I restart this ongoing battle with them. Truthfully we'd transfer hospitals but with all of her health issues and how fantastic the nurses are with her, as well as how well they know her, I don't think we should have to put her through that so I will just have to keep arguing with them. Any suggestions would be appreciated.
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  #2  
October 16th, 2011, 04:34 PM
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jml jml is offline
Ducky's mama
Join Date: Mar 2009
Location: Nova Scotia, Canada
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*hugs* keep hanging in there mama! Declan was getting breastmilk.. but he was fortified with Neosure starting about a week before he came home.. and even that tiny bit of neosure was hard on him.. when my milk supply tanked and my frozen supply ran out i gave him a full bottle of neosure.. and he SCREAMED for 6 hours. I threw the can out that night and gave him the sample pack of Goodstart that I had.. and then began the horrible process of finding just the right formula. We ended up giving him Similac Advance, and that made him the least gassy. we also fed him gripe water multiple times daily to help with the pains...

The hospital's thing with Neosure is that it's fattier than other formulas... When D had a problem with it in the NICU, they brushed it off as reflux, and said that it couldn't possibly be the formula.. as soon as we got him home, I took matter into my own hands and actually stopped fortifying most of his feeds... he still grew.

I would sit down with Aubrey's dietitian and speak with her in depth about your concerns. I'd also speak with all her nurses about it.. There's always bound to be one who will sympathize and help advocate for you and Aubrey!
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  #3  
October 16th, 2011, 08:04 PM
Mega Super Mommy
Join Date: Jul 2007
Location: Grand Rapids Michigan United States
Posts: 2,890
McKenzie was first on solely breast milk with breast milk enhancers. Than when Madison started eating at two months old my supply could not keep up with two. It was more important for Madison to have it. She had a CDH and was on tpn and lipids for two months. McKenzie was on Enfamil Enfacare. She had no problems. She did have reflux and was on Zantac and had rice cereal in her bottles. My supply could not even keep up with Madison so I quit pumping. Also with McKenzie home and Madison still in the NICU I just could not keep up. Madison was on a special blend of breastmilk neosure enfamil, and breast milk enhancers. They were really good at working to help with her major reflux, and many tummy issues. We sadly lost her at 5 months two days old. I would keep trying to talk to them about switching formulas. It is hard but you know what is right for your child. I never had any issues in this regard but had to be an advicate for my girls. HUGS!
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  #4  
October 16th, 2011, 08:55 PM
SarahBethsMommy's Avatar Mega Super Mommy
Join Date: Nov 2007
Posts: 4,847
I'm glad that you say the nurses are great. I'm sure after 2 months you have learned which nurse you like the best. Talk to them. The nurses usually have GREAT pull with the neonatologists.

And why the heck are suppositories not protocol? How weird is THAT? Preemies OFTEN have to have suppositories to help get things moving along. Keep asking about that at least. We give our preemies in our NICU suppositories all the time. We just cut off a tiny little bit to use on the little bitties. If she is vagaling down, they have to do something for her to stop doing that. Keep bugging them. Keep being an advocate. They either will listen to you or transfer you to another hospital that will listen!
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  #5  
October 18th, 2011, 07:46 PM
shannonranee
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nattie had problems with neosure - she was puking it up in the nicu but we had great drs and I just said I wanted her off it and just on straight bm (since I still had enough for her at that time) and they took her off it for a bit and tried it again a few weeks later when she was a little more mature. as far a suppositories our NICU had no problme at all using them if the babies were constipated and sent us home with a whole bif bottle of them. they would try stimulating her with the thermometer first - like would put a ton of lube on it and insert it just a little to see if that helpe - sometimes just something else being there was just enough to get her bowels to move but if that didnt work and she still didnt poop buy the next diaper change they went straight to suppositories. Tehy ont want the babies to get to where they cant poop without stimulation or a suppository but at the same time they dont want the babies straining that hard - esp if they have oxygen problems or heart problems. I would def fight that they need to give her a suppository and let her rest so she can heal instead of straining so hard.
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