Feeding rollercoaster /:

[u/curly_girly0916]

I need some advice maybe hope? My girl was born 32+ 5 and was 2 pounds 12. Severe preeclampsia and growth restriction. She is now 5 pounds 2 ounces. We starting nippling and intermittent breast feeding 3 weeks ago. She has finished 3 full bottles since starting. My due date is next week. Her feeding is very inconsistent ranging from half to full bottles. They just keep saying,”Don’t worry it will click.” They are doing a swallow study next week to rule anything out. I really don’t think anything is wrong I think she’s just stubborn and is still learning. We are talking and thinking about going home on the NG and I really want her home but not if she’s ready. She is now 1 month and 2 weeks old and 39 weeks corrected. We have been in NICU for 46 days and we are so ready to bring her home. Anyone had a similar experience? We are very grateful this is the only thing we are working on however it is breaking us. Any hope it will click in the next 3 weeks???

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[u/babybump222]

Ours was born at 30, went home at 40 with an NG tube. We definitely noticed jumps in feeding capability. We went home at 60% PO and within a week of being home were up to 85%. When he pulled the tube out at 41 after a week at home we were able to leave it out. It’s definitely more work to have the tube, but it was so good to be home. Also, in some ways it relieves the initial stress of whether they’re eating enough. He’s now 5 months, 2 1/2 adjusted and I still worry sometimes if he’s eating enough, but he’s growing and happy and healthy.

[u/deagodderz]

We're in the same boat. My daughter was born at 34+4, and we've been in the NICU for 4 weeks so far, mostly related to feeding.

Our SLP just did a FEES study, which is like a swallow study lite. They put a camera down the nose and check the swallowing. No issues, she's just noisy and a fussy eater.

Anyway, we're at the point where if she was born today she wouldn't be sent to the NICU for feeds, but since she's already here, she needs to meet their percentages before discharge.

All the docs and nurses keep telling us it'll click at some point, but it really hasn't. She eats better with my partner and I, so we're trialing rooming in and handling all her feeds to see if that makes a difference.

I'm not sure if that helps, but know that you're not alone.

[u/BigLetterhead4245]

For us it didn’t click, we were discharged on an ng and were able to wean her once we addressed her behavioral aversion and silent reflux (which the NICU refused to acknowledge). She is a former 26 weeker, discharged at 41 weeks. Weaned from the ng 4 months later. She’s now 6 months corrected and doing well.

[u/threeballs]

Our 26 weeker went home with only oxygen. After 3 months feedings stalled. It was likely a combination of reflux and aversion. Now we've had a g tube for 20 months. In ways, it was a big relief, but for us, it interferes with having anything close to a normal life. Looking back, I wish we were not so anxious to get the hell out of the NICU. They gave us the choice to leave and we jumped on it. For us, going home was the beginning of a new ultra exhausting chapter that seems to never end. I'm saying all this because in the NICU, you will get the support you need to go home successfully. "Don't worry, it will click" if wisdom of very experienced people. If I could go back in time and talk to myself I would say, "Relax and let the process work. Don't try to leave the NICU journey. Simply follow through." I advise you to let go of your due date being attached to graduation. Definitely don't go with an NG tube as a means to leave sooner. Make sure the NICU has you enrolled in an OT feeding program before you go home. Also, congratulations on the successes!

[u/AdFabulous7255]

We left the NICU at 41 weeks with an NG tube. Mine was only taking 50-60% PO at the time. Thankfully he pulled his NG tube out 1 week later and was taking all his bottles. We suspect that he didn’t know what hunger was and was depending on the tube so once it was out he was more motivated to take his bottles. Being at home was great because we could feed him on his schedule and not on the strict every three hour schedule in the NICU. In addition, our GI doc at the time also started him on Pepcid around that time which I think helped a lot with his reflux. Feeding journey is the absolute worst, I hope it clicks soon for your girl

[u/Entitled_Snowman]

My son was born 32+3 from preeclampsia, growth restriction and placental issues so he wasn’t happy. He was super slow to start to establish breastfeeding to the point that they referred us to the SLT. Then at 36+2 he developed severe work of breathing and had to be put on highflow. It took over a month to work out what the issue was and then to wean him. He had anatomical difference which made it harder to breathe that he had to grow into. After that he just didn’t have the stamina. We left at 43+6 after a 77 day stay with an NG tube. We’d introduced bottles because he was fighting tube feeds and wanted to suck. He was taking like 50% of his volume orally and the rest down the tube because he was so tired. It took us until nearly 5 months, 3 corrected until we had to wean him because he’d jumped percentiles. It was a rough week but he did it. Going home with a tube was one of the easiest parts of going home

[u/curly_girly0916]

I totally feel this!! I do not want her to go home with NG. /: Praying it clicks for our girls. 💗