Here we go again

Tuesday, the day Ellie turned 2 months old, started off on a high note when she shared her first real smiles with me during her 3 am feeding. This is a moment I have been anxiously awaiting for quite some time and it did not disappoint. I was able to catch a few of her smiles to send to Scott so he wouldn't completely miss out on this special first.

Unfortunately her day just went downhill from there. She had a barium swallow study done to see once and for all if she could continue eating orally. She failed the test and it was determined she needs a feeding tube until she can grow out of her inability to swallow without aspirating. After two months of doing everything in our power to avoid a feeding tube this was a devastating blow for me, but things have gotten bad enough with her feedings that I was finally able to feel at peace with the decision and know it is what's best for Ellie. My biggest fear is that she is going to loose all the swallowing skills she has worked so hard to develop and that we may be started down a long hard road to get her off of a feeding tube.

So we were admitted to Primary Children's yet again to get an NG tube placed and start her on her tube feedings to figure out how she would tolerate them best. After a 24 hour stay we were discharged home and got set up with more home health equipment, making Ellie's living room appear even more like a hospital room. 

This morning I bathed Ellie and was getting her all ready for a little photo shoot of her with her new feeding tube when I noticed her breathing was becoming more and more labored. She was actually making me very worried.  I started making calls to her doctors which ended with me hanging up on them to call 911 when her sats dropped to the 60s and we couldn't get them up. We have ended up back at Primary Children's in the ICU with Ellie on the verge of being intubated. It is terrifying. She started crashing the minute they wheeled her into her room. I can honestly say I have never been so scared in my entire life. I was just waiting for her to code. They were able to stabilize her on bipap and currently have her sedated with precedex to keep her calm. The doctors still aren't sure what exactly has caused this sudden downward spiral which makes me nervous that she's not out of the woods yet. Scott has booked the first flight out of Omaha in the morning to come be with us.

I can't even begin to express my gratitude to all of you who have lifted us up with your love and support at this time. Hoping for a better report tomorrow (or whenever our situation permits).