When moved to step down, I was given permission to feed him as often as he was interested (YAY!) However they were still bolusing him breast milk through the NG tube every 3 hours and we were almost to full feed amounts...so when in the world would he be interested in nursing if he was full all the time?? And even if he did get hungry before the next bolus feed and I let him feed at breast, how would they adjust the bolus amount in order to avoid overfeeding him and causing tummy issues/reflux/vomiting? This "schedule" is not how a newborn feeds naturally and we certainly were not going to be feeding him by NG tube at home so shouldn't we be feeding him how we plan to at home?
This continued to be an uphill battle for two reasons...
1) The docs just wanted numbers and to measure exactly how much he was getting, which is not possible when breastfeeding. We initially tried to bottle feed him my milk, solely to get the docs their numbers and get us home sooner, but after trying twice Titus was clearly not interested and we weren't going to force it and then try to transition him to breast later.
2) Docs didn't want to remove the NG tube in case breastfeeding didn't work out and they would have to replace it. They also didn't want to stop bolus feeds because that was their way of knowing he was getting "enough".
This was so frustrating. As a mother who had successfully breastfed our first son for 13 months, it was clear to me that Titus had the tools and desire to feed if given the chance. He proved it in the NICU and also in CICU. He just wasn't being given a chance to show his full interest! (To be clear, I fully understand the doctors concerns, its a very real and legitimate issue with many heart babies...but sadly the system sets them up for that despite the few that could really thrive on breastmilk alone.) I knew that it was a possibility that breastfeeding could be challenging with Ty's condition, however my motherly instincts were telling me this was not the case and I was NOT about to give up!
Ultimately had Ty and I not taken things into our own hands and literally fought for breastfeeding it would have led to coming home with an NG tube. But Ty, by his own hands and with a small bit of assistance, decided that night that the NG tube was coming out...and from then on, he was eating like a champ!!!
Titus's first and last bottle....
Sleeping in peace with a full belly after pulling the NG tube out...
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