Benjamin Button

The first couple months were challenging. We were adjusting to life with our fragile newborn and learning how to feed and give medication to Benjamin through the g-tube. We left the hospital with a stack of medications. Throw those in with the crapload of syringes, tubes, med tape, iv pole, and all the breast pump parts and our place looked like a doctors office. It was our new normal. 

Ben was a bit of a colicky baby. I felt guilty for getting frustrated with his cries. I remembered being in the hospital and looking at Ben when he was incubated and cried out and all there was was deafening silence. Those days were awful, so instead I would try to say a prayer when he cried and thank God that I could hear his beautiful voice.

Tim went back to work two days after we got home. His hours are not so great so he was out of the house by 2am each day for work. This meant I would be up at night feeding Ben through the tube, giving him medications, then pumping then trying to catch some sleep then starting all over again every 3 hours. It. Was. Tough. 

For those of you that have had a tube fed baby I applaud you. It is not an easy thing. At the time going through it, it doesn't seem as hard because you're used to how hard it is. But looking back, I can now say I'm really proud of myself. I won't go into details of feeding but it was a lot of work and preparation, stress and heartache. We dealt with quite a few messes (it's easy to spill when you're feeding a baby through a syringe and tube). I was constantly stressed about the button, Ben had granulation tissue build up around it which is painful and a pain in the ass to clear up. I'm so grateful to be past the 'Benjamin button' period now. Ben did not take any food orally until he passed his swallow study which was March 13th. From that day forward we made it our job to learn how to take a bottle, to then be able to take a full feed or at least enough to get Ben to gain weight.  It took a lot of work but we shouldn't have been surprised because Ben is a fighter.  He had his button removed just shy of three months after it was placed on May 6th.