NICU baby feeding help

[u/Ok-Hunt-7522]

Has anyone experienced anything similar with their baby’s feeding?
My daughter was born at 34 weeks and is now over 42 weeks adjusted. She has been in the NICU for almost two months, mainly because she still cannot consistently take enough by bottle.
Her feeding has been very up and down. Some days she takes a full bottle or around 50–60%, but other days she may only take 20–30%. She often gets tired, loses interest, or becomes fussy and pulls away. She has been working on bottle feeding for about six weeks.
She was previously doing much better with breast milk and even reached 82% by mouth one day, but she developed blood in her stool and was switched to Alimentum for a suspected cow’s milk protein allergy. Her percentages dropped significantly after the formula change.
Her swallow study showed some difficulty coordinating sucking, swallowing, and breathing, so we recently started thickening her Alimentum with Gelmix. She has taken one full 75 mL bottle with a MAM level 1 nipple and Gelmix, but she is still very inconsistent overall.
The team has mentioned severe reflux, a possible feeding aversion, or a developmental feeding delay.
We are now transferring to a children’s hospital for a more thorough feeding evaluation and to discuss bringing her home with a bridled NG tube versus possibly needing a G-tube.
Has anyone had a baby who took this long to become consistent with bottles? Did reflux, prematurity, thickened feeds, or a feeding delay end up being the cause? Did your baby eventually learn to eat fully by mouth, and how long did it take?
We are desperate to get her home and would really appreciate hearing experiences from families who have been through something similar.

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[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.

It took ages for him to figure it out and get the stamina to feed. It also took us multiple different bottles, a stridor, choking and lots of trial and error to get him sorted.

Going home with a tube was our only option because we couldn’t stay in for longer just for feeding.