Goodbye Tubes?

It’s been well over 24 hours now since Lily has needed her feeding tube. She’s happily taken all her feedings by bottle every chance she’s gotten and hopefully she’s not looking back! This evening she was a very sleepy Bug during her 9:00 feeding but she still managed to take the whole bottle for her mommy. What a good girl!


Charlie had a good day too. He’s about the same as yesterday as far as his feeding/breathing issues but every one of his heart rate drops was self-limiting and he was able to bring himself back to normal very quickly. He was wide awake for his mommy this afternoon and happily sucking his thumb when I visited him in the evening.

We signed the consent forms today to have Charlie circumcised, possibly as soon as tomorrow but more likely sometime Monday or Tuesday. It’s a pretty routine and harmless procedure and we didn’t really hesitate about getting it done. We’re happy that he’ll have it done now so the nurses in the NICU can look after his “recovery.”

Two of Charlie’s primary nurses, Mary and Carolyn, surprised us tonight with gifts for Lily and Charlie. They gave us a bib and a book for Charlie and two small memory boxes—one pink and one blue. They, along with Nurse Sue, gave us a memory box after Annaleigh died and we loved it so much and put a lot of her things in it. Knowing this, they bought us boxes for our other two babies. They gave us this tonight because it’s Carolyn’s last night for a couple weeks and Mary is going on vacation after Sunday, and there’s a chance that at least Charlie will be home before they come back to the NICU. Lily’s nurse Julia is also on vacation and may not be back before The Bug is home. This is a surreal feeling. We’ve spent so much time with these wonderful, wonderful people and the realization that we may not see them again is quite shocking. We have such genuine gratitude and love for them that it will be very hard to really say goodbye when it’s finally time to bring our babies home.

Now we just need everyone to keep improving. Both babies are big enough to come home so we just need the other issues to settle down. Charlie needs to get his heart rate drops under control and Lily needs to keep up the bottle feedings and get off the cannula. We can finally see end of our journey in the not-too-distant future!