Fortunately, John has stabilized from a breathing perspective and we are in a holding pattern for this week. He is doing well with his one nostril and has even begun to breathe through his mouth sometimes (which is going to be a huge help when he masters it!) 

We have new struggles with his feeding- he’s had multiple episodes of throwing up and seems to be getting slightly dehydrated- something they’re keeping a close eye on for now. As a result of that plus the interruption in feeds for surgery- he has actually lost some weight that we worked so hard for. 
The GI team and dietitians are working to find a good balance for him. 

When John was born and shortly after diagnosed with 2 midline disorders- there was a laundry list of associated problems that we were told to expect. One of those was a pituitary/endocrine problem. We’ve see transient issues with his sodium level so endocrine ordered lots of lab work to ensure there wasn’t an underlying problem and found NOTHING. As far as anyone can tell, he has no endocrine disorders. 

On the hardest days, I have to constantly remind myself of how many prayers have already been answered. The biggest answered prayer is that his brain MRI was normal. His cardiac structure and function is normal. His endocrine function is normal. His lower airway anatomy is normal. His lung function is fabulous. His extensive genetic testing all came back negative. 

There’s so many miles to go, but our boy is fighting so hard and we will never stop telling him about all these mountains he climbed before he could even walk. We’re so proud of him. 

When you’re living the ICU life, you don’t get to wear clothes very often and it’s something I never knew I would miss so badly as a mom. It’s something I absolutely took for granted- being able to dress my own baby in the clothes I was so excited to buy him. 
Today, we put on our new sunshine romper and that makes today a good day. Here’s to sunnier days ahead with our little fighter. 🩵🌞