100 days and taking on the NICU?

babybean82 · June 2014

Today marks Liam's 100th day in the NICU, I can't decide how I should feel about that, part of me is excited because the worst is in the past but then I also never expected it to last this long so I am kind of depressed about it too.

DH and I have decided that Liam is going to come home sooner rather than later, he hasn't shown any progress at all when it comes to eating so it's inevitable he will be coming home with a feeding tube. The decision now is which kind, the hospital wants us to do a G tube, because they have never sent a baby home on an NG tube before. However Liam already had one surgery in his short life and the worst part of that was being intubated, extubated and then re intubated.... his body created so much mucus trying to fight off the tube that he had to be suctioned constantly and was constantly having desats and bradys while on the ventilator. The excess mucus also collapsed one of his lungs the first time they tried to extubate him. So with as hard as that was on his little body I don't want to put him through that again just for the convenience of a G tube. We have a big meeting with the Doctors and care team on Tuesday and we are prepared to fight for him to come home on an NG tube, even if it comes down to demanding he be transferred to a hospital that would send him home with an NG.

Has anyone ever had to fight the NICU over an issue like this? if so did you succeed?

Missi576 · June 2014

Fight for the NG. We lost. Alexandria needed the g-tube for a whole week and a half to two weeks before being home kicked her into gear and she hasn't used it since. Now we're stuck with a g-tube irritating her until she has had it for two months so it can completely heal. She had no issues with it, but I hate it with a passion.

punky917 · June 2014

I know exactly how you feel. I honestly thought that DS was doing so well that he would be home by his due date, and it came and went and we were nowhere near coming home. He was discharged a month later on an NG tube. The only reason we were discharged was because he had a cataract in his right eye (result of the ROP surgery) and it had to get taken out by a specialist 5 hours away. They told us that eyesight is developmental and that he would lose it if we didn't take care of it sooner than later.

Anyway, there was only a couple of docs out of the whole team that was pushing for the g tube. I really didn't want to do it and neither did my husband. Deep inside, we didn't feel like he needed it. When I asked why they thought he needed it, the best excuse one of them came up with was, "So you don't have to worry about cleaning up his throw ups." I was furious and knew right then and there that he wasn't going through that surgery. DS had 4 surgeries while in the NICU and none of them went badly, but there was just no way I was going to let them cut through his abdominal muscles so I wouldn't have to clean up after him. They let us take him home on an NG tube and they taught us how to insert it and to make sure it was done correctly. He was on it for 2 months. Luckily, when he was ready to be off, it was about the time that he was starting to really pull it out on a regular basis.

I say fight the g tube for Liam unless there is a major medical reason why he has to have the G tube. I know it is intimidating with doctors and nurses and all the medical jargon they throw at you, but you are his mom and the only voice that he has. I think you have every right to fight for him and voice your opinion. Good luck and keep us updated on how it goes!

Brummy14 · June 2014

Definitely fight for it. DD2 was only 50% PO when she was discharged, but getting home, outside of the stressful NICU environment, moving to on-demand feedings and off of the forced NICU schedule -- she was to 100% PO within 2-3 weeks. We had in-home nurse visits to teach us now to use the NG tube (and the nurses in the NICU had us place one solo more than once prior to discharge), and on-call, round the clock ability to reach someone through the home-care services if we needed help. We never did. GL!

babybean82 · June 2014

So far so good on the decision, the doctors had their weekly meeting this morning and it's not a complete no just an undecided maybe. Tomorrow morning they are going to do a swallow study to make sure he isn't aspirating any food when he refluxes. Then tomorrow afternoon I have a meeting with all of them, it's our hospitals doctors and care team including the OT and also a few of the doctors from the partner hospitals. I am kind of nervous because DH is out of town so it's just me and them but I think I've got this, I know my baby and I know what he needs. Wish me Luck!

Missi576 · June 2014

Good luck! I will say that if you do end up having to get the g-tube it isn't that bad. Definitely wouldn't choose it. I would have had to push for a transfer to not get Alexandria's. The whole hospital system of children's hospitals she was in has an outright no NG tube going home policy. The worst she'll have from this ordeal is a small scar on her belly.

That, of course, is just in case you lose the fight or your tiny one ends up needing it. If you do go home with it, use it as little as possible no matter how convenient so you can move past it imo

Jenrn2203 · June 2014

I would def do a gtube. Our 24 weeker came home with a ng , developed serious reflux causing a oral adversion , the ng caused all of the above. We have the gtube still and working on feeding and I wish I would have listened to the doctors and not stalled. Ng sucks, imagine swallowing with that in your throat plus the epiglottis always stays open due to the ng wnd thats why Refux gets worse with the ng. Do the gtube you won't regret it,it's a quick 20 min procedure and 24 recovery . No matter what tube you choose, dependency of the tube is from oral adversion not the tube itself

babybean82 · June 2014

Well I lost the battle, I am really pissed off because even though I was told they were considering it and that the swallow study they did today was a factor none of that was true. They had already made their decision yesterday and then the doctors didn't even come to the meeting, just a nurse practitioner, the OT and social worker. And they were there to just convince me that he needs a G-tube and all of the benefits of it. I am just so angry right now because I feel like they aren't even listening to my concerns, it's not the g tube itself, it's the surgery and how hard his last surgery and being on a ventilator was on him.

So basically we are at a point that because he won't eat on their schedule the same exact amount of food every 3 hours we have to have him have a surgery to go home or leave him here until he does finally eat which could be months at the rate he is going.

Jenrn2203 · June 2014

If it makes you feel better I was just as concerned wrh the whole going back on the vent. Especially bc my daughter was on the vent for 6 weeks and has chronic lung disease. I made sure I talked to the anastesialogist and gave her all my concerns she was super helpful and reassured she'd extubate her ASAP and give her lasix or anything that would help get her off the vent right away and she did. It's not a major surgery that causes pain which would make it hard for the baby to get off the vent. It's super easy and if they haven't already, they will tell you how they put the gtube in and they don't even make any incision . Just a few heads up , request a amt mini button not a Mickey and don't do a Nissan . If you wanna chat let me know . I hope this helps a little

Allibob · June 2014

I was in your same situation two weeks ago. My doctors, nurses & OT were all fine with letting us go home with an NG, but "administration" wouldn't allow it. I was super angry about it, but we went ahead and scheduled the procedure.

That last week, they were more willing to try anything to keep us from getting it. They allowed us to do ad lib feedings (feed on demand with up to 4 hours between, no gavage of remainder). It made a big difference, if nothing else in my stress level. I no longer had this narrow 30 min window to feed him or else! I had to be there all the time because not all nurses were willing/capable of letting him get off schedule.

He did lose weight at first, but eventually stabilized & we were able to be discharged. He fell off the growth curve even further his first week home, but is doing great for week 2. Good luck with whatever you decide!

babybean82 · July 2014

Well surgery is scheduled for first thing tomorrow morning, it took forever to get it set up because several Drs didn't want to touch a baby with a heart condition but they finally found the right team and we are good to go.
Liam is getting his last ng feeding now and then he will be off food until his stomach is healed enough to use the g tube. I've warned the nurses that he is going to break hearts tonight cause when he is starving and begging for food It's so hard to deny him.

babybean82 · July 2014

Usm123 said:

Prayers for a successful and easy surgery! Withholding food is so hard. Are they doing a Nissen? Deep breaths Liam, don't give your parents more to worry about. You are almost home free. Keep us posted and feel free to PM me with anything that may crop up.

The surgery went well, he ended up having to be intibated but only for 30 minutes and is breathing fine on his own now so DH and I are extremely re-leaved that didn't set him back. I think tonight is going to be very hard, he was sucking on his paci really hard all the way back to his room and he isn't allowed to eat at all until tomorrow. I wonder if he is regretting refusing all of those bottles now?

Right now he has just a long tube and in 3 weeks we will come back for a mickey.

Jenrn2203 · July 2014

Ask for a AMT mini, they are much better than a Mickey!

glad things went well!

Missi576 · July 2014

Wow, three weeks. That is nice! They wouldn't give us one for two months.. and by now we haven't needed the silly thing since two weeks post discharge. This whole month and a half has been spent keeping it clean and winding it through the velcro on diapers to keep it out of the way ><

Glad surgery went well

You'll find it really is easy to use, just don't give up on the bottles as a first resort! Maybe it'll be a short bridge for you like it has been with us!

PhillyGal34 · July 2014

I have no first hand knowledge to offer but agree that that you should fight for what you think is best. I'm not sure if this is possible but can they release you with an ng and if it isn't working being you back for a g tube? I'm sure it will but maybe that would make them more likely to do it?

Good luck and keep fighting Liam!

flerlgirl · July 2014

Just wanted to say I hope Liam does well with the g tube and that you get to bring him home soon!

babybean82 · July 2014

We are home! Liam is doing really well with the G-Tube feedings and we will have a nurse come out to our house tomorrow with more supplies etc...

The NICU nurses said most people don't get pumps with G-Tubes anymore and we will always have to do gravity feedings, what did everyone else have to do?

Going home:)

Jenrn2203 · July 2014

Pump feeds r what we do very easy and not messy. Id def ask for a pump

babybean82 · July 2014

Usm123 said:
Awww how precious! He looks ready to go. He did awesome!

We have a pump and have since coming home. We do bolus feeds 9,12,3&6 and continuous on the pump from 8pm-6 am. The 2 other people I know with g-tubes also use pumps. I' d ask the nurse coming to your house because a perk of the gtube for us was no middle of the night feedings!

so I asked for a pump and our insurance won't cover it right now because we are still working on trying to get him to bottle feed, if down the road he isn't gaining enough weight or failing to thrive our Dr can order over night continuous feeds then we might be able to get a pump. For now dh made us a tall stand that we sit next to his bounce chair and rubber band the tube to and move it up and down to control the speed. It takes forever to feed him this way cause we will get halfway done and he will fuss and push the whole feeding back up into the tube, so we are trying really hard to get him to take more bottles and i am going to talk with his pediatrician tomorrow at his first appointment.

Jenrn2203 · July 2014

Have your ped write a script for a pump

Missi576 · July 2014

Egads. I'm with getting the ped to write a script. We only used the pump for a week and a half but we had one. I wish I didn't have to send it back because I'd send it to you.

Honestly, more than that, I hope you get him to take the bottle. It is still a battle of wills to get the last ounce down at most feedings with Alex, but it is worth it and she is physically capable.

babybean82 · July 2014

Usm123 said:

Yes I'd get someone to write it. How is he doing with bottles? Do you have Medicaid secondary? We qualified because of exteme prematurity and they covered all formula because our insurance doesn't cover food. Who tells you how much to feed to keep his growth curve? We have a nutritionist and a GI that figure all that out and tell our DME company what we need. We do gravity feeds during the day. When he was non-mobile I laid him in the boppy and held the syringe up, adding 20 Mls at a time. Now that he's crawling, I have to try to find something to keep him still for 5 minutes. But really I just end up following him around with the tube and syringe attached, it's quite a sight.

I think he might qualify for medicaid, a social worker at the hospital said he did because of his heart condition but I just haven't gotten around to looking into applying for it. As of right now our insurance is covering his formula as long as he has to have the G-tube which is great because he is on EleCare which is $45 a can.

We just saw his pediatrician this week and she will be in charge of his growth curve and how much he needs to eat, she also got him on reflux meds which he seriously needed but the NICU refused to do. He was doing about 40% by bottle before the g-tube and hasn't done near that since then, but his reflux also got way worse after the surgery so hopefully we can get that under control and he can get better at the bottle again.

Want a personalized experience?

100 days and taking on the NICU?

Re: 100 days and taking on the NICU?

Choose Another Board

Search Boards