Day 4

Jonah has graduated to a CRIB! This is an important step in preparation for coming HOME. Since we will take care of his temperature regulation with a heating pad and close monitoring, that's what we've switched to here. He has done great.

When the doctors came by this afternoon, they talked about what else he needs to do to come home. Basically, he needs to get his feeding up to a normal amount for weight gain without refluxing. That's it. His head hasn't grown at all since he was born, so right now he won't need a shunt. (What a blessing to skip surgery! And since he hasn't needed surgery he is still here at U of U Hospital, lots closer to MOM:) They talked about discharging him on Sunday if we don't have any problems.

They increased his feeds very quickly from yesterday to today, and he has tolerated them well. I should be so excited about his progress, but I sit by his bedside and watch each breath, certain that he is going to fail. Our other boys tolerated their feeds until day 5 when they both refluxed (threw up), aspirated(it went into the lungs because they didn't have the reflex to protect their airway), quit breathing, and had to be rescusitated. Its extremely stressful for me. Why couldn't Jonah be different? Maybe he won't reflux. Maybe he has more physical ability. One good sign is that he coughed today. Super cute, by the way, but also a life saving measure on his part.

Being in the NICU this time is a completely different experience than in the past. The NICU can be a stressful place to be with all the alarms and cords and doctors and nurses. Its a place you hope you never have to go. But this time, since my sweet baby boy is there, its where I want to be. He is so absolutely calming to hold. He soothes my spirit and comforts me. I love being
just down the hall from him where I can walk over at any hour and be with him. I am scheduled to come home tomorrow.

And here's the BIGGEST BLESSING OF ALL: There is an organization called 'Now I Lay Me Down to Sleep' that takes pictures for families with infants who have a fatal diagnosis. They are coming tomorrow to take pictures of our family, and since we need everyone in the picture, our kids get to come into the NICU and see their brother. We have had some very unhappy kids who want to hold Jonah, and now they will get the chance. Love it!