Milestone on top of milestone!

I don't know how coherent I'll be at the word-putting-together thing tonight😴.... But it was another big day and I so want to share it! Still praying for Annelise's chest tube to stop having output and for her chylothorax to be resolved so we can move on and resume feeding her breast milk again!! Praying for her adjustment to the trach collar, and for our adjustment to learning how to care for her trach collar too! Praying for no infections! Puppy picture: because it's cute and I can relate right now! Pic of Annelise on her back: This morning I woke up to a different scenario than I went to sleep with. Baby girl had been sleeping with the humidified air blowing chilly air around her face... She held her temp through the night, but early morning she started to get cold, and her heart rate skyrocketed from near 100 to near 200 at that time too! (By the end of the day... We learned that babies as small as Annelise aren't usually getting trach collars, so there's no smaller size of non-warmed humidifier to use that might not blow all over her face... Also, she has had issues in regulating her own temperature before today, so it's not surprising that she couldn't keep herself warm when her surroundings were so cool.... Heart rate issue is probably due to the weaning of the sedative drug.... Took her completely off that one today!)😊😎😍🤩 Pic of the worn out baby sleeping with her mouth hanging open: Annelise was crying really hard off and on this morning, really looking bothered by her situation. They were able to switch her to a heated humidifier for the trach collar, so her temp came up again, and she could stop being so bundled up in a warmed isolette... Not her favorite feeling. She let a nap take over at that point after all the commotion of the morning. Pic and video of Annelise in her bed with blue bedding with flowers: I had been having a really down and discouraging morning. I couldn't pinpoint any one particular thing that was upsetting to me... I think it's just all of the things that the NICU brings us, and the struggles of people I care about... plus, the answers to all of the questions I've had for months about how she's going to do as far as breathing... are in the process of being answered as she is progressing at shockingly healthy speeds! My brain is telling my body to join it in flipping out! The staff at Children's NICU are phenomenal. Above and beyond her duties of teaching Kevin and I the really-freakin-scary-cause-it's-so-new task of caring for Annelise's trach collar daily.. Our respiratory therapist sat down and asked if I was doing OK? Because she noticed that I seemed more stressed and maybe overwhelmed today. Of course that brought the tears, and a good talk, and she gave me non trach related homework of doing something for myself... So Kevin and I went to go to Hobby Lobby, because it's that simple for me to find joy in craft supplies! OK so that was a long back story to explain why we were gone... the point is that when we came back, we walked in to find multiple nurses and RT's in Annelise's room... and in the NICU, that usually means something very bad is happening. They were quick to tell us that everything is good, they were just trying something else out because the warm air humidifier didn't seem to be working with Annelise, and she wasn't keeping her oxygen saturation up. You guys, the thing they tried was the next step of an HME collar, that slightly humidifies the air she breathes for her. They weren't thinking that she would be ready for that until much later... But she was loving her life with her HME! It's just a small box that connects to her trach, and means we don't even need the humidified air all day! She's still going to get the humidified air at least at night. It will help with the junk and goobers that can collect, to keep them thin so they don't clog up her trach and cause an emergency situation where she needs to switch to a new trach so she can breathe! She is just surprising everyone with her lung health! 😍🥰❤️ This is just day one, but what a day so far! She is still going through some withdrawal symptoms, and is having some hard moments throughout the day, but we are so excited to see her moments of calm and breathing sweetly without anything more than the HME today! The rest of the pictures were Kevin and my date night out to a ramen place that the RT recommended, and an ice cream place our amazing nurse suggested! Hooray for food not from the cafeteria! I know that I needed to get away while Annelise was in a good spot, and have a change of scenery with my very best most incredible husband. What a day! I know I've been typing for awhile, so this is probably a super log post again, but a new mom friend at the hospital here shared this song with us that is my heart right now, and I wanted to pass it on. It's important to me to acknowledge that everything good about today came from God. Praise the Lord for Annelise's trach progress! But it's equally important for me to see how God was working in the whole day, even the yucky parts where I feel discouraged and overwhelmed. Praise you Lord for the conversations and perspectives that came from your people encouraging me today. OK I'm going to go to sleep now so we can wake up and go hang out again with that cute baby!
Big Daddy Weave - I Know

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