Sweet Elizabeth Joy cannot eat orally. We aren’t entirely sure of the reasons for this… she cannot suck and has difficulty (forgets?) swallowing. We brought her home from the NICU after 88 days with a NG tube. Three weeks later, I took her back in for the g-tube surgery.
When we came home from the NICU, Elizabeth was taking 10-20% of her daily total via mouth. This had decreased from the week prior. Within two weeks of coming home, she wasn’t taking anything by mouth. Her gagging and vomiting had increased to such an extreme she wouldn’t tolerate any milk orally. She started gagging and retching so violently that she would vomit the NG out her mouth. After a few rounds of this at one am, I was done.
Surgery was on September 29th. We stayed in the pediatric unit through Saturday. Once home we had a new routine to figure out. I knew that the every three hour feedings round the clock was not sustainable. I was getting no sleep. I decided to adjust schedules and run a continuous overnight feed for six hours. This let me sleep a few hours (barring any pump alarms- which at first we had a lot of!).
About a month in, we found our routine and settled in. Our days still mostly revolve around my pumping milk and feeding Miss Elizabeth via her g-tube. At night, I learned it’s best to skim her milk to avoid clogs and alarms on the pump for the 6 hour run. I add the skimmed cream to her first morning bolus feeding so she doesn’t miss out on any of the good fat. Every 2-3 days, I weigh her and I adjust her feeding dose as needed.
I have fought to keep her on 100% mamas milk… it seems that everyone feels like a tube fed baby (and preemies) must always have fortification. Maybe it’s because they don’t see enough babies on 100% human milk to know any different. It makes me sad that even when a child is growing well and thriving, the medical professionals would push for formula additives. I have no intention of ever giving her formulas. Once she is ready for food, if she can’t eat orally, we will transition to a real food blended diet based on human milk and eventually bone broth.