So I have been slacking on updates, but there has been a lot that has happened in just a few days on the rollercoaster ride of healing. I fully understand the expression, “Hurry up and wait.” 

I previously wrote how the whole family was back together and that seems to have been a huge healing boost for all of us in many ways. Primary Children’s certainly knows how to serve children and entertain their siblings. Jude and Scarlett found themselves very occupied in the Forever Young Zone with toys, air hockey, crafts and making the infamous (every parent’s nemesis) slime.

Despite being together, I would be lying if I said I wasn’t discouraged with progress and answers. If anything, I am learning patience. Maybe. Isla was making a sound close to strider (only while sleeping) and having side and neck retractions that made me uncomfortable to think of being home. The night nurse staff seemed just as concerned even if the night doctor wasn’t who kept insisting it was nasal congestion. Finally we decided to have the ENT doctors do a scope to make sure her throat wasn’t  damaged during intubation or that her airway wasn’t obstructing.

The sound is caused by laryngomalacia or a floppy airway. Upon examination, the ENT doctor thought it looked mild to moderate. A respiratory therapist suggested that previously being intubated so long caused a loss of muscle tone and over time it would strengthen back up. Essentially little flaps in your throat close or partially close over your airway making a scary sound no parent wants to hear at night. We don’t need to do anything immediately and most babies grow out of the condition around Isla’s age. This explains some of her struggles these past six months as far as a slower weight gain, reflux, spitting up. I wish we had known before two hospital stays and maybe it could have been all prevented. I don’t know. We are going from now. 

So (if you’re still reading sorry) all those answers showed up on Valentine’s Day, her vitals were great with two nights/days off oxygen so if we felt comfortable going home on an NG tube; home was in the cards.

We were discharged yesterday Feb 15th, but roads were closing and opening and closing again. Just as we left, we ran into snow. So we are spending the night in Evanston and taking the trip at our own speed. I’m updating you now at this hour, because I’m feeding this sweet girl.

Isla will be fed by bottle and NG tube until she gets strong enough to drink it all by mouth again. During intubation, I never considered having to help her coordinate eating all over. We worked so hard to find the right combination as a tiny baby, I am a little weary to do it all again. Then I look at this little girl and see everything she has been through and feel guilty ever once thinking it’s about me. 

I apologize to update so much at once, but some days I felt so positive and then others we hit a wall and I didn’t know how to put it into words. We are almost home. Isla goes back in 4 weeks to make sure the laryngomalacia isn’t an issue still and possibly a swallow study will happen at that time. Primary Children’s is a little stingy with their swallow studies-they want her completely healthy. 

Thank you again to everyone who has prayed for Isla and encouraged us. God has given us incredible people in our lives!