And so it goes...

We've had a bit of a struggle since we've been home. Yesterday was tough. Brooke did a lot of sleeping. She threw up in the morning after her first feed. She also threw up after her third feeding. She took about 2oz. from her bottle at the beginning of every feeding. That was really positive. We gave her the remainder of what she needed via the tube. We totally struggled with how to get the medication through the tube. We finally got the compounded topamax ordered today. Pick up Monday. In the mean time, we got the pills today to crush and mix with water. Up until today - this morning included - we were trying to get the beads in her. They are these beads that you sprinkle onto food. We were trying to get them through the tube. This failed miserably!! We crushed them and mixed them with water, but it's hard to ensure that it is all getting in her. So, we tried to deliver them in the bead form. Well - they got stuck. In her tube - basically there is a valve at the bottom of the tube - in her stomach. The beads got lodged in the valve and her dinner came pouring out. Wow!! I hope that doesn't completely freak everyone out. I feel like it is unfair for me not to be totally honest, since this is our reality. I was in hysterics - crying my eyes out - not sure what to do. Ryan was trying desperately to help me hold it together. In the end, we closed the button and waited about 1/2 hour. When we opened it back up, the bead had dissolved/moved/something and her pediasure was no longer flowing out of the tube. Huge sigh of relief.

Ryan stayed home today, and I headed to work. I seriously needed it. Needed to get away and get to work. I'm really looking forward to next week! A whole week of no travel, no doctor, just normal stuff like work! Brooke had a much better day today. Sounds like she's taken two really good bottles and had two really good pump feeds. I'm about to give her another one. We also have someone from Apria Healthcare coming out tomorrow morning to really go through all of this pump stuff with us - tell us what is normal and what is abnormal etc.