November 5, 2013

update on Olivia

So it's been a small forever since I blogged and I have fully intended to get caught up many times but every time I sit down, I'm just not sure where to begin.  SO much has been happening in our world over the past 6 months and I do hope to get caught up because there are lots of things I want to remember. :)  But before I get back to the past 6 months, I want to give an update on Olivia and ask for some prayer.

Jason and I made the difficult decision to get a feeding tube for Olivia in a couple of weeks.  It was NOT an easy decision and was a result of lots of tears, prayers and conversations with various doctors.  The confirmation that a feeding tube would be the best for Olivia came after an appointment with her neurologist revealed that she hadn't gained any weight in a month.  We know Olivia had gained weight but because she throws up almost daily and her intake hasn't increased in a few months, she also quickly looses weight.  So we know it is the best thing for Olivia's growth and development but it is never easy on a momma's heart to make such a tough decision.

Our journey for the feeding tube began this past week with a swallow study and upper GI.  Thankfully we were able to do this test locally and not travel to the Children's Hospital.

Olivia was a CHAMP.  She struggled at first to take the barium bottle but thankfully Jason was there and got her to drink what she needed.  During the x-rays, we immediately learned that Olivia has severe reflux.  This came as a complete shock to us because when we had her last swallow study 6 months ago, they didn't think there were any signs of reflux and we took her off reflux medicine and began adding thickener to her bottles.  So that finding alone can explain the throwing up and constant gagging.  We won't get the final results of the upper GI/small intestine scan until this week when we meet with the surgeon who will be placing the feeding tube, hopefully next week.

We are asking for prayer over the next few weeks because this is all new and a little scary for us.  We have no idea how Olivia will do after anesthesia, especially with her seizures.  We also have no idea what life will look with a feeding tube.  Though we will not stop feeding her by mouth, the tube is solely for medicine and supplementing on the bad days, it still makes me nervous that she will regress in her eating.  Prayers will be greatly appreciated in the coming weeks!