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Her MiniONE® Balloon Button has not slowed her down in the least.”
Marlowe was born at 26 weeks gestation, weighing 640 grams. She was on a ventilator for the first 11 weeks of her life. After failing extubation numerous times, we consulted with both a pulmonologist and an ENT. Both physicians performed scopes of Marlowe’s windpipe and discovered that she had tracheomalacia and subglottic stenosis. These diagnoses meant that part of Marlowe’s throat would close when the tube from the ventilator was removed.
Marlowe underwent several rounds of endoscopic balloon dilations to help stretch the scar tissue causing the problem. After 12 weeks in the hospital Marlowe was able to breathe without the ventilator! She successfully (though slowly) transitioned to room air after 5 months in the hospital. However, during the time when Marlowe was on high breathing support she received her food through an NG tube that ran down her nose into her stomach. As a result, Marlowe had trouble learning to breastfeed or to eat from a bottle. Finally, when she was almost 6 months old, our neonatologist suggested that we consider getting a g-button so that we could go home and work on feeding by mouth. It was a heart wrenching decision: no parent wants their child to be “different.” No parent wants “hardware” in their child. We opted to follow our physician’s advice. Marlowe came home on May 28, 2014. She was almost 13 pounds and just a few days shy of being six months old.
As soon as our surgeon gave us the”OK” we happily transitioned to an AMT MiniONE®.
Our first g-button was a Microvasive button. As soon as our surgeon gave us the “OK” we happily transitioned to an AMT MiniONE®. The locking mechanism in the button allowed us to have some peace of mind that Marlowe would not pull out her feeding attachments. After several months (and lots of crawling around on the floor!) we had her MiniONE® Non-Balloon Button replaced with the MiniONE® Balloon Button. We asked a lot of questions before we made the decision; but eventually we decided that the flexibility to change out the button, if needed, with ease was the most important factor. The new MiniONE® balloon means that there won’t be traumatic visits with the nurse practitioners in our surgeon’s office. There won’t be a few days of soreness and Tylenol® when something has to be changed out. There won’t be a sense of urgency in case the button breaks or malfunctions while we are out of town. The new MiniONE® Balloon means that we are in control. And while it took a while to get our brains in line with what we would have to do, it feels so nice.
Marlowe is working on PO feeding all the time. We are hopeful that she’ll overcome the hurdles she is facing and will have her g-button removed by the time she is 4 years old. She is in speech therapy for feeding, but other than that she is a normal 15 month old. Marlowe crawls around, cruises along the furniture, talks and laughs just like any other baby. Her MiniONE® balloon has not slowed her down in the least.
