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Preemies
Brennen ... Feeds/gtube/nissen decisions
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.
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: Brennen ... Feeds/gtube/nissen decisions
I'm sorry you and your S are going through all this. My D doesn't not have a gtube. However, she was scheduled to have one placed and then at the last minute we cancelled the surgery and decided to give her more time to learn. She did learn. It took her about two weeks past her due date. I was pretty gung-ho for the gtube bc it meant she could come home.
It sounds like your son has a lot of issues that he's dealing with. Personally if I was you I'd go ahead with the gtube/fundo. I do know another 26 weeker and she had a gtube placed after almost 4 1/2 months in the NICU. They were really really holding out hope that she would learn to eat. Reluctantly her parents agreed and now they say the gtube was the best decision! So much less stress over feedings and knowing that they are getting the calories they need. HTH. Good luck with your decision! I know it's a tough one.
I replied to your post on Special needs before I realized you posted here too. But I wish you the best of luck making this decision.
Im sorry you are being faced with these decisions. My micropreemie's issues revolved primarially around lung and feeding issues. It became clear to me that the feeding issues we had were a direct result of her lung issues. She had a lengthy intubation and once she was weaned down to nasal cannula she was using every bit of her energy to maintain her oxygenation.
We discussed home NG tube and g-tube at length with the neos during our last month there. As much as I wanted her home, I was insistent that we give her to 44 weeks adjusted until we discussed home NG use or g-tube. She pulled herself together pretty much overnight at 42w and went home at 42.5w. In the last week - 10 days it also was clear that she really was becoming a baby (rather than a preterm patient) and needed to be home and doing baby things.
If you dont feel ready for the nissen/g-tube is it possible that you could go home with and NG for a few weeks or until you feel like you have exhausted your options?
www.virginiakkent.blogspot.com
Ill be praying for you and Brennen - I dont have any advice for you Im sorry but I can tell you that from reading your post I think if I was in your postition I would opt for the gtube - good luck and keep us posted
I know this must be a really hard decision. I don't have direct experience but here are some stories from other tubie moms on this board that might give you some perspective. I hope a few of them will reply to your questions too. Good luck making these choices!
https://preemiemomblog.blogspot.com/search/label/g-tube
Our precious girl, born at 27 weeks.
I am so sorry for everything you have been through. My son Ethan also had severe BPD and as a result he had a tracheostomy. A severe bronchospasm caused him to go into cardiac arrest and it took them 30 minutes to resucitate him. Because of that episode he has experienced some other challenges and delays. One issues was his ability to eat. He lost some of his suck/swallow coordination and they feared he was aspirating so they insisted that we get a g-tube. We were really hestitant to do it because it meant another surgery, but in the end we decided it was the best thing for him. They discussed doing a Nissen or just a regular g-tube. Ultimately they ended up doing a g-tube because the swallow study and upper gi only showed a small amount of reflux. Now, several months later we are still dealing with a lot of Ethan's reflux issues and I sometimes wonder why they didn't do the Nissen to start with. I am afraid we may end up having to go back in to have that procedure done, but right now my doctor wants to wait and see if he grows out of the reflux. I really hope so, because I just hate the idea of Ethan needing to go back for another surgery after everything he has been through.
I am not sure if this info helps you make any decisions, but I just wanted to let you know I have been through a lot of what you are going through. It's definitely not easy, but you are so strong and you will get through it. Your boy sounds like a fighter just like our Ethan! Ethan is finally home after 250 days in the hospital. He has private nursing care and still faces many medical and developmental challenges, but continues to make progress and amaze us every day. Hang in there Mama! Many prayers for Brennan and your entire family. Xoxo.
If you have any questions or just want to talk, please feel free to msg me and I can send you my email.
My daughter was born at 24w 4d. She was in the hospital for 138 days, she came home after a nissen/g-tube and oxygen. She had the g-tube for 11 months exactly, they required her to eat without it for 3 months before removing it. Her nissen actually slipped and she began aspirating 4 months after the g-tube removal. They redid the nissen without the g-tube and she has been fine ever since. She'll be 3 in November and she eats well, she's still stubborn at times, I don't know how much of that is toddler related. It's a tough decision, you have to decide what's best for your family, for us, it got us home and made our daughter have less pain.
Best of luck to you.