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gtube/nissen decisions help!
x26weeker born 3/7/12 2lbs & 2oz 13.19 inches long. Was ruptured from week 20. CH 4months6days/CA 4wk2d adjusted....comfort flo 3liters 50%
INFO about Brennen
Brennen suffers from severe bpd (Bronchopulmonary dyplasia). so far in 126 days in the nicu 3 he has been intubated for 88 days between oscillitory(x2) and convential vent.(x2) Brennen suffered bilateral psedo monis and chryseobacterium and this took a large toll on Brennens lungs. We struggled with this for over a month He eventually met his first near death experiance when his oxygen level stayed at 60% regardless of him being given 100%. He was then put on nitride gas maxed out at a level of 20. Eventually with lots of prayer and love Brennen pulled through and begin to show signs for moving forward.
Then Brennen got hit with a blood clot in his right ventricle in his heart. This caused low blood per fusion to the organs in his body. All organs went into failure and he begun seizing. He seized for 5 days before we could stop them. Potassium level stayed above 9, renal failure, again Brennen was facing death...But againest all odds & doctors he pulled through
We did a MRI. Brennen suffered severe brain damage during this event because of the low per fusion as well as we discovered he suffered from PVL. What long term brain development issues he will have is unknown at this time. & have been advised he will most likely develp some form of CP
Bren also developed stage 3 in one eye for ROP just had vastin (sp) shot in each eye yesterday
Which brings me to his feeds...
Brennen is on 24cal/high protein 55cc
Brennen can PO feed altho he is very inconsistent. Sometimes Brennen will eat 55cc and the next feed nothing...or 2cc...We have attempted this for a few weeks. The doctors want to insert a gtube/nissen so bren can go home and learn how to eat. Also so we can begin therapies. He has been here for 126days so far. I am so torn about the gtube...I feel like I know my son can eat it's just he doesnt have enough energy to finish or even wake to feed. & the nissen they want to do because his lungs is very fragile...we just got moved back to NICU 3 because bren had a unknown reason for respiratory disress and was put on high flo 3 liters 50% oxygen. (beofre canola from the wall .5/5000They are so worried about him aspirating or refluxing and this causing much more severe damage to his lungs therefor they would like to do a nissen...but I am worried about long term effects with the Nissen. We are doing a ph study soon to see if he is refluxing or how bad he is...but they also say gtube can cause reflux ??
Please i would like any ideas or thoughts about gtube/nissen...Types of gtube you have...did you do the nissen? any long term effects... also do you agree doin these procedures to get him home is more beneficial then keepin him here for more months to learn how to eat?
Thank You
26wkr...3/7/12...224am...2lbs 2oz...13.19 inches long...126 NICU 3 (currently still in NICU 3)...Bronchopulmonary Dysplasia...Seizures...Periventricular Leukomalacia...
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Re: gtube/nissen decisions help!
Congrats on your son!
My son is 3 and just got his g-tube. He is severely developmentally delayed (due to genetic syndrome) but can eat by mouth (just not enough). He was born 4 weeks early and spent 1 month in the NICU as a feeder & grower. He was a very good eater for his first year then it waned. The g-tube terrified me, despite everything else that was going on that was the thing that made me feel like a failure. But in hindsight, I almost wish we would have done it sooner. As many g-tube moms will tell you it's a love/hate relationship. The important thing IMO is that the g-tube will allow your son to grow without exerting the energy on feeding. With growth does healing as well. Also, we found that as my son got older getting him his seizure medication by mouth became extremely hard. One of his is extremely bitter and he got to the point where he would make himself throw up. I have no experience with a Nissen. I've heard both sides to the story with it though. You may want to ask over at the feeding tube awareness Facebook page or read their website. It gives lots of helpful info. You won't be taking eating away from our son, ou will just be allowing his body to do what it needs to do without the extra worry of his nutrition.
I don't normally post on this board but another bumpie linked me to this post.
My DD is an ex 26 weeker as well and spent 153 days in the NICU with atleast half of those days on a vent.
Around day 120 or 130 we decided to go with the NISSIN & GTUBE. Like the pp mentioned its a love hate relationship. DD never learned to take a bottle in the NICU and has yet to learn to suck. I won't lie, this past year has been rough but we are starting to see a light at the end of the tunnel.
The Gtube is was got her home, we were able to do ALOT of therapy through Early Intervention. Just with in the last month we have been able to get DD to eat enough food that we could cut back her tube feedings a little when she eats enough.
It was a tough call to make but I am glad we did it.
Some other resources you might was to look at is www.feedingtubeawareness.org
And Feeding Tube Awareness on FB. Good luck with your decision. Feel free to PM me of you want to talk more.
Another lurker here. DS has a GJ tube. It has 2 ports, g to the stomach, j to the intestines. We originally were going to do a regular gtube but his reflux was so bad, the doctors really thought feeding straight into the intestines would be beneficial.
We would have done the nissen had we been able to. DS was a diaphragmatic hernia baby and his stomach was not in the correct spot, nor is it the size they would like to do the procedure.
We chose to do the tube primarily so we could guarantee his nutrition. He was in the NICU for just under 5 months, and is 6 months old now. I feel he has grown and has learned so much more than he ever has in the NICU. Getting him home was the best thing in the world for him. He is not eating by mouth and his doctors are also worried about him aspirating as he as done so before and got pneumonia for a short time. I can't say I would have chosen this route, but that's the cards we are dealt. I hope you find peace with whatever decision you make.
Congratulations on your son. My ds was a 24 weeker. About the time of his due date he started having episodes of severe vomiting. We found out he had pyloric stenosis and when the went in to fix it they found out he had a malrotation of his intestines (they believe that is why he came early). He didn't want to eat at all so we had a gtube put in so we could bring him home. He does not have a nissen.
He is now 21 months old. He still has the gtube and can eat but still throws up 5-10 times a day so he has a feeding aversion. For us the gtube was the right decision. We were all happier with him at home.