Prep for the Next Step

Hi everyone. I know... It has been forever since our last post. Sorry about that. I can't tell you how many times I've sat down and started or intended to start writing a new post and it has been derailed by a number of things. Most of the time the "distractions" have to do with Isabel and her care but we've also had a lot of distractions from other parts of life. For instance, our dog, Otis, has taken to jumping the fence to go play with neighboring dogs. He is certainly assisted in this pursuit by the outlandish piles of snow in our backyard but he is physically capable of jumping the fences without all of that snow. Enough of that though, on to what you're really here to read.

Since our last post Isabel has been doing great! She reached her goals of being on full feeds and getting all of her medications to oral (through her feeding tube). She did all of that and remained stable and happy for long enough that the doctors felt comfortable transferring her to the Stable Vent Unit (SVU) on February 25th. We finally made it! One day short of 8 months we triumphantly (and a little nervously) left the ICU.

 It has been a really good transition for all three of us but not without its bumps, bruises and nervous moments. The scariest and most notable came on Wednesday (the day after we moved) when I changed a dirty diaper and found some blood in with her poop. Immediately my heart and Amy's heart sunk like rocks. Was this her body telling us that she wasn't up for or able to eat enough food to sustain growth and life? Was this the NEC that she had to fight and recover from back in January? What does this mean?!? From there the docs stopped her food and ran some tests including an x-ray and a contrast dye study. It was a LONG 24 hours of waiting, worrying, and praying but nothing was found to be wrong and there was no reoccurrence of bleeding so she was again given the go ahead to start back to eating.

Other than that issue things are really coming together for us. Amy and I have both started long leaves from work. Not working allows us to be at the hospital with Izzy during the day and for many more hours which enables us to improve our competence and confidence in preparation for taking our girl home. One of the big highlights recently is that we were finally able to take Izzy on a walk by ourselves (just the 3 of us). It was a great time and we were even able to visit Jen (one of her NICU primary nurses). We're looking forward to more walks at the hospital (visiting the PCTU, cafeteria, and anywhere else that we'd like. All of that in preparation for even more adventurous walks out in the "real" world. We also completed our 12 hour block of care where we did everything that Isabel needed for the entire twelve hours. It went really well. Now our last requirement is the 24 hour leave on pass where we go to the Med Inn (the hotel in U of M Hospital) and take care of Isabel for an entire day. After we complete that next Saturday, the 15th, we'll be ready to take Isabel home on Tuesday, the 18th. A day that we have been dreaming about long before Amy was even pregnant with Isabel.  I'm unable to describe the excitement or the fear that comes as we approach this next step in our adventure. We continue to ask for your prayers and thank you all for your prayers, love and support over what has been one of the longest, hardest, and most rewarding periods in our lives. 

With love,

Dan, Amy, & Isabel