Friday, July 27, 2012
About halfway through our NICU stay both twins were diagnosed with reflux. Blake’s was solved mostly by keeping him up right after feedings, and pacing him. The closer we got to their due date the better things got for Blake. This was not the case for Addison.
They first tried her on medicine, Prevacid, but that didn’t work. Next they tried adjusting her feedings so that they would run slower over a period of a few hours. That didn’t work, so they tried pushing her feeding tube down further, past her sphincter muscle and in to her intestine, bypassing the stomach all together and in hopes of stopping the refluxing. She was still having Brady spells and refluxing but not as bad or as frequent. Her case was so severe that they did not even want to attempt oral feedings.
At this point it was decided that she would be transferred to another NICU where there was a GI doctor on staff and would have her evaluated for a G-tube and Nissin Fundoplication. The Nissin Fundoplication is surgical procedure to treat reflux. During the procedure the surgeon would wrap the top part of the stomach around the bottom of they esophagus and stitch it into place, which reinforces the closing function of the sphincter muscle, thus preventing reflux.
We were very hesitant to put our baby under the knife for any reason, and while we waited for her transfer I started researching the procedure and looking for other’s experiences. There were a lot of mixed reviews about the procedure which only left me more confused, nervous and undecided.
When Addison was finally transferred to the new hospital, we had to wait a few days to meet with the surgeon and come up with a plan. First thing he wanted to try was moving her feeding tube back to her stomach and see how she responded, it was clear she still wasn’t tolerating it, even though she was still on reflux medicine. He also wanted to run a pH Probe to just how much reflux she was having and how often, but to do that they would have to stop her medicines and risk an increase in the reflux and potential aspiration. The surgeon was very hesitant to do the pH Probe due to the overwhelming volume she was already refluxing with meds, and cautioned us and we were left to make the decision. Seeing her in pain and choking on formula over and over and needing to be suctioned several times a day… we knew our only option was the surgery.
On 6/13/11, Addison underwent surgery and they were able to successfully perform the Nissin Fundo and place her G-tube. To be honest things were very rough for a few weeks after surgery, and again we questioned why we did this to our little girl. The surgery itself was successful but afterwards she stayed intubated for almost two weeks and ended up with yet another staff infection, these were things we were prepared for but not expecting. The Neo who sent her to surgery reminded us of where she started (she had always been sick from a respitory stand point) and told us point blank to expect a decent intubated period post op. The reflux certainly didn’t help her already fragile airway.
After those first two weeks post op, things did get MUCH better. I spent my days learning how to care for her G-tube and how to feed her. All while managing her twin brother who was already home and waiting for his sister to join us. When she came home things went well, but I must admit, I had a very strong love/hate relationship with her G-tube initially (and some days still do). But as the weeks went on and she got bigger and stronger and healthy I knew we made the right call for her. We did experience retching (where she would gag a little but couldn’t bring whatever was causing it aka reflux, up), but that too got better over time and we learned some things triggered it.
She is now almost 18 months old and is still primarily G-tube fed, but otherwise doing well. She is no longer in pain from her reflux and developmental is not too far behind. Had we not done the surgery it’s hard to say how much longer they would have kept her in the hospital waiting for her to out grow the reflux. 


city said...

thanks for sharing.

Precious and priceless so lovable too, the world’s sweetest littlest miracle is, a baby like you.

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