Firsts



My Dad made me a ball pit at home!!

Reagan continues to bring us such joy; we can never resist a smile when we look at her. This week she's had quite a few 'firsts'. Her first time in a restaurant, Cheeky Monkey Deli. She did great, loved looking around and chewing on her toy strawberry dipped in ice water. She went to her first criterium "crit" bike race. She was cheering for our friend Brady. And her first visit (let me emphasize VISIT) to the NICU and ICC. She saw lots of familiar faces and everyone was so excited to see how much she’s grown. It was a little difficult for Scott and I to be back there. The minute we walked through the double doors to the hallway into the NICU I remembered the smell, like cleaner. The second set of double doors to the NICU also opened and I caught a glimpse of Rooms 6 and 8 where Reagan and Eden spent almost 7 months of their lives, fighting for every day. It took my breath away and I'm sure the RN's we were visiting with saw the tears in my eyes. Our sweet Eden never got to leave those doors into the doors of her real home. This pains me and causes my heart to ache. She still has a perfectly made crib with her name on the wall....we can't bring ourselves to take it down. It's hers and it was meant to be slept in many nights.

Reagan had an appointment with her Pulmonologist on Tuesday. We had lots of questions for him and some decisions to collectively make. He thought she looked great and he is thrilled with her progress. He said that we should continue to wean off her O2 and suspected that she would be completely off by the time she's two! We also talked a lot about discontinuing some Rx's, and we developed a plan to wean her off of these too. He continues to emphasize growth as her biggest therapy against her chronic lung disease. Optimal nutrition is key to growth, so no hotdogs or kool-aid for this little girl. Eating by mouth is still our biggest challenge. She is going to Occupational Therapy (OT) twice a week to work primarily on eating by mouth. She is so resistant to having textures in her mouth, so this will take lots of time. It’s frustrating sometimes for me and I have to remember to take a deep breath, stay calm, say a prayer and keep moving forward. God will help us get through this we just need to trust in him.

We are looking forward to celebrating Reagan’s FIRST birthday and remembering our sweet Eden. ALL are welcome to join this celebration. This is just the first of many big birthdays! We came close to losing Reagan too so her birthdays are a big deal. And we never want to forget our sweet Eden so it’s a great time to remember her life and fulfill her legacy.