Opinions wanted about feedings.

JennZK · November 2012

Kruz was born at 26 4/7 on Aug 23rd so his gestational age is 38 weeks. We have been working on bottles for 5 weeks or so. He has come a long way and is trying a bottle with almost every feeding now and taking at least half before he tires out but he also has taken several full bottles. Then he gets the rest through his NG tube in his nose. He has been waking up anywhere from an hour to 20 minutes before it's time to eat crying so he is definitely feeling hunger. His feeding schedule is every 3 hours and he gets 50cc. Since he is so close to term and we have leveled out with his progress they are talking about exploring other options so we can go home and work on feedings. I am to the point where I think that if we were to go home, or be at home now, he would eat fine and we would not need the NG. I think that if they just gave him the chance and didn't force him to eat every three hours and didn't give him what he didn't eat through his tube, he would wake up and eat the rest when he was hungry. They mentioned that there is a chance they would surgically insert a G tube into his stomach and I am highly against that. Am I crazy? They wont let us try doing things on his terms and letting him eat on his own terms to see if he would take enough. I am getting so frustrated with this. Opinions PLEASE!!!

jennbent · November 2012

No you're not crazy. They threw that idea around with my son too - they said if he didn't "get it" by 42 weeks then we'd start talking g-tube. It totally freaked us out and put a lot of unneeded stress and pressure on us. I'm still annoyed that they brought that up, and I'm sorry you're going through that too. We were stuck there until five days after my due date b/c DS was struggling with bottles. What finally got us out of there was going to ad lib feeds - he was able to eat whatever he wanted, whenever he wanted, as long as he didn't go more than 4 hours without eating. This helped tremendously - sometimes he just didn't want to be force fed every three hours...sometimes he wanted to eat every 2, sometimes every 4. So even though they already said no, I'd still bring it up again as you get closer to your due date and they might reconsider. I'd push hard for that.

The other thing that helped was that I basically moved into the NICU the last 4 days before he was discharged. I was there for each and every feeding. I loved our nurses, but I think most of them were too busy to spend the time needed with DS (he was a very slow eater). Seems to me they'd give him his 20 mins and if he didn't finish, they'd tube it. Once I moved in, I was able to get him to eat more because he was my only focus. I had the time to sit there for 35 mins or however long it took. I don't know if you have that option of moving in, but as you get closer to your due date, I'd think about that too.

Good luck. It's tough I know, but hang in there.

JennZK · November 2012

(sigh) Thank you... I am going to push for it in the morning when the doctor does rounds. I really want to exhaust all options. As my husband put it, the definition of insanity is doing the same thing over and over again and expecting a different result. It's been 5 weeks, I think it's time for a change.

ahollo02 · November 2012

jennbent:

No you're not crazy. They threw that idea around with my son too - they said if he didn't "get it" by 42 weeks then we'd start talking g-tube. It totally freaked us out and put a lot of unneeded stress and pressure on us. I'm still annoyed that they brought that up, and I'm sorry you're going through that too. We were stuck there until five days after my due date b/c DS was struggling with bottles. What finally got us out of there was going to ad lib feeds - he was able to eat whatever he wanted, whenever he wanted, as long as he didn't go more than 4 hours without eating. This helped tremendously - sometimes he just didn't want to be force fed every three hours...sometimes he wanted to eat every 2, sometimes every 4. So even though they already said no, I'd still bring it up again as you get closer to your due date and they might reconsider. I'd push hard for that.

The other thing that helped was that I basically moved into the NICU the last 4 days before he was discharged. I was there for each and every feeding. I loved our nurses, but I think most of them were too busy to spend the time needed with DS (he was a very slow eater). Seems to me they'd give him his 20 mins and if he didn't finish, they'd tube it. Once I moved in, I was able to get him to eat more because he was my only focus. I had the time to sit there for 35 mins or however long it took. I don't know if you have that option of moving in, but as you get closer to your due date, I'd think about that too.

Good luck. It's tough I know, but hang in there.

I am about to move into our NICU. When I am there during the day and feed my daughter, she takes her whole feeding which is 50cc. I leave and come back the next morning and she tubed all the night time feedings.. only taking about 40cc by bottle. Come on. In the back of my mind, I think the nurses dont have the time or try as hard as I do. If she dosent do it in 15-20min they move on.

jacque_z · November 2012

I didn't read the other responses but my situation with my 26 weeker was very similar. Feeding was our biggest hurdle. We actually stayed in the NICU until she was 42 weeks bc of it. I would try on demand feedings. I know another thing that helped was being available for a majority of the feedings or requesting nurses that you know will work on it with your son if you can't be there. My DD was scheduled to have a g-tube placed and then we cancelled the surgery at the last minute to give her more time to learn. Some of the staff was pushing the g-tube, others were strongly against it until at least 42 weeks. I definitely wouldn't consider a g-tube prior to his due date unless he has other issues going on. HTH! Good luck.

thishappyhouse · November 2012

I've been there. Its a very difficult place to be... big hugs. The great news is that Kruz is taking 1/2 and full bottles and that he is making progress. Im willing to bet he will be taking all of his feedings by bottle in the next 2-3 weeks. Is he on any oxygen support?

At 38 weeks gestation my 25 weeker was barely making it through 10cc's at half of her feedings. She definitely wasn't waking up hungry either. We were given the home NG or more likely g-tube talk too. I was unwilling to discuss either option seriously until 42 weeks or unless there was a major halt or regression in progress. It was a long month but my DD went home at 42.5 weeks on all oral feedings. My husband, myself and our primary nurses had to exhibit alot of patience and do alot of advocating in those last few weeks.

My best advice is stay the course this week. If your son starts to take more like 3/4 of his feedings orally, Id ask the neo to try him for a day on an ad lib schedule with shift or daily minimums. This will give your son the freedom to eat when he is hungry and self regulate a little; I bet he will do very well.

thishappyhouse · November 2012

one more thing now that I have read the other responses. I would suggest NOT moving into the NICU to be at every feeding. Your son will be coming home soon and there will be big changes. You will likely be exhausted and strung out anyway, but WAY exhausted and strung out if you try to do around the clock care in the NICU in the last days or weeks. Like BostonKisses pointed out it is pretty rare that nurses are too busy or dont care enough to work with your baby. Yes, there are exceptions. The NICU has limits on the amount of time a feeding can take because, making a 50cc feeding last more than 20-30 minutes is often doing more harm then good. I assure you that you do not want to be home with the pressure of a baby who is not quite there with feedings.

JennZK · November 2012

He has BPD that could very well be affecting his eating. His lungs aren't up to par and we have had a specialist come in to find the best position to feed so he could breathe comfortably. I am not against just giving him more time for his lungs to build up. He is gaining plenty of weight, one to two ounces a day, and is up to 8 pounds this morning. They just act like they don't think he can do it based on an on demand schedule. They are negative and don't want to give him a chance. I made it very clear this morning that I understand if they don't want to try on demand feedings yet based on his lungs. But I refuse to sign off on a g-tube surgery until we have tried. If they don't want to try until he's term then fine, but I am not letting that option go out the window. The NP seemed to really hear me this morning and said that things will definitely be discussed with the doctor during rounds. I guess I have just been too passive and I need to stop just going along with what they say all the time. I may not have a medical degree, but I have my mommy instincts.

jennbent · November 2012

I was the one who posted and said that I moved in. And yes, it was extremely exhausting!!! :-) But two of our neos and a couple of the nurses actually suggested I do it, and in the end, I do think that's what got us discharged the quickest. It may not work for everyone though, especially if you've got other kids at home or something like that.

OP - I'm glad you stuck to your guns and talked to the NP today. I'm betting they will let you try ad lib feedings if your due date rolls around and you're still stuck there. Two weeks is a long time in a preemie's world though - he may surprise you! My little guy has BPD too and his fast respiratory rate is what was causing his feeding issues (it still does to some degree but we work around it). Good luck! And keep us posted.

JennZK · November 2012

I got my way! We started ad lib feedings this afternoon and he is right on their time limit and eating more than he ever did before and in a much more timely manner! His 12 hour minimum seems a little high to me, 188cc, but that's what we're shooting for. I am lucky enough that there is a Ronald McDonald type living quarters in the hospital that I have been staying in that is about a 5 minute walk to his room. But his room has a couch, recliner, tv, own bathroom in it so tonight I am going to try staying in with him since I seem to get him to eat so much better than the nurses do. Wish us luck!

thishappyhouse · November 2012

Im so glad that things are going well with ad lib! I hope his great progress continues. Try to be patient and know that it still can be a one step forward, 2 steps back type thing! So happy for you.

I totally take back what I said before (but still try to get some rest for yourself), if we had a private room in the NICU with an extra chair/loveseat I would have totally moved in for those critical days. Our NICU only has pod style rooms (6-12 babies per room) and even kangarooing chairs are hard to come by. We spent most of our time either standing or in office like rolling chairs.

JennZK · November 2012

We have had a successful 24 hours! I'm so glad I pushed for this. Thank you all for your help and advice!

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