TODAY?

To say life around here has been C R A Z Y would be an understatement. But the big news is Kaleb is getting discharged today! All of his medical equipment (oxygen concentrator, tanks, feeding equipment, etc) was delivered yesterday. It has been incredible to see how well we have been prepared and supported by the hospital here.

There have been a number of developments since our last update, so here's a rundown of the key things:

• HEART: they're still keeping an eye on it, but Dr. Setton is very encouraged with where his heart is at and now we wait to see how his heart continues to develop.

• BREATHING: Kaleb will be sent home on 0.5 liters of continuous oxygen. His restriction in breathing remains a conundrum to the doctors. It’s still a mystery, but they are doing a CT scan of his lungs next week.

• MIND: Following this study, the neurologists came by to explain that they think Kaleb's difficulty with eating and breathing may be linked to his brain disorder, polymicrogyria, because the specific areas affected by this are ones that help to control the muscles in his mouth and throat. This may be something that he learns how to deal with down the road, but for right now they're cautious in regards to eating through his mouth.

• EATING: So, Kaleb is most likely going to be eating by a feeding tube for a while. He still has his NG tube (through the nose), but we're looking at most likely getting a surgical G-tube put in (a port on his belly which can be removed when it's not needed anymore) in the new year.

• Swallow Study: done earlier this week revealed that he is silently aspirating some fluid when he eats by mouth which they think is what is causing him to not get sufficient oxygen. 

On Tuesday, Brittany stayed at the hospital for a full 24 hours (a requirement before discharge) in order to care for him and experience his medication and feeding schedule. It's a pretty intense schedule:

6am: meds & 1 hour feed
8am: meds
9am: 1 hour feed
12pm: 1 hour feed
2pm: meds
3pm: 1 hour feed
6pm: 1 hour feed
8pm: meds
9pm: 1 hour feed
10pm: meds
12am: 1 hour feed
3am: 1 hour feed

And then we start back over again!

GRACE

Amidst such intense days, we have seen God's grace in very distinct ways:

• Todd's mom flew up for a few days to help with the kids while Brittany did her hospital stay. She even got to share a little Christmas with us!

• The dietitian that talked with Brittany regarding Caleb's feeding regimen had the idea to have Kaleb feed continuously at night instead of his normal consolidated feeds, which will hopefully enable us to sleep at night! (This was particularly encouraging to hear after get only a few hours of sleep during the 24 hours of care)

• The nurses said Brittany passed her 24 hour run "with flying colors," which encouraged us as he comes home and we take full responsibility of his care. 

• Looking to Kaleb's future development, the state of Massachusetts offers early intervention care from birth to 3 years old that's covered by insurance where specialists in physical, occupational, and speech therapy can make house visits and work with us on giving him the best chances of developing well. 

We are SO CLOSE to the next adventure God has for us. We are SO EXCITED to have all of our children under one roof. And we are (still) SO TIRED. But God is continuing to provide grace for each day. Having said that, we really need your prayers at this critical transition! 

PRAY:

• for us to nail down a pediatrician for Kaleb ASAP (our cardiologist doesn't want to discharge him until we have an appointment booked)

• For God to restore the functions of Kaleb's brain, lungs, and throat so that he can breathe without assistance and feed without.