1st: All of Eden friends came to visit... her Piglet, Snowman, Charlie (seahorse) Lily (crab)and Max (fish)
2nd: Reagan hanging with my "Ole" sock monkey from when I was a kid.
4th: Eden's blond hair leading in the "NICU Hair Growing Contest"
5th: Reagan hanging out in her big girl chair.
Today, March 2nd my wonderful daughters Reagan and Eden are 7 months old. This is the second time everyone had heard from me. I only post when we hit a “milestone”, so since we hit the 200 day mark (actually on the 17th of Feb) I thought it was time for me post again.
My last post was around the 100 day mark. I really wish I wasn’t writing this right now because we are at 200 + days, will you probably hear from me at the 300 day mark….. Yes :(.
Has the journey gotten easier, no. Has the worrying ended, no. Are we in much better place, no. Is it frustrating, yes. Are we at a breaking point, like 5 months ago! Are we about to give up, NEVER!!!!! I am not going to sugar coat this. Both Amanda and I are so scared for Eden. We take 2 steps forward and then 3 steps back. She is a very sick girl. We continue try to figure out what the best plan of care is for her. Tomorrow, Thursday, she has her cardiac catheterization; this will help establish a base line of where she is and what the plan is. Do we need more time, how severe is it, it being her pulmonary hypertension, or are we heading down a more severe path…… like transplant. I don’t like to think that way because I know that God is watching over her he is not going to take her down that path. Since Monday, she has been doing much better. She is back on a Fentanyl drip. We know that she is going to be addicted but we can deal with that later. She is in much lower O2, and is having much better days.
Reagan has been sleeping like a rock star! She has been doing great at home. She did have to make 2 trips to the ER in her first week and spend 3 days in ICC because her feeding tube was clogged but “Hey that is normal right??” I guess it is all in perspective. She also sleeps about 10-12 hours a night, just an occasional diaper change so that has been great.
Amanda never ceases to amaze me with how much she can handle. She is amazing and she is the real strength through all of this. She is definitely showing her talents that she would have made a great doctor and will hopefully guide our girls in the future in the medical field (yep, already planned out for them).
Thank you to everyone for all of continuing prayers but we REALLY need prayer and great thoughts right now. I guess you will hear from me in about 90-100 more days.