Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Wednesday, January 2, 2013

The roller coaster day :)

I often wonder about coincidences. But it seems so many things in my life have come full circle and I have later been able to put the pieces together to see the big picture.

This week, I am seeing some of the purpose of our experiences with Kate in the NICU so many years ago. As hard as it was, we gained a lot of knowledge about all this baby stuff. And it has surprisingly come back to us quickly. That has been huge when dealing with all this. We can ask better questions and our learning curve hasn't been as steep.

The day has been more like the NICU days we had with Kate.

Up and Down.

He had a great night with eating and such. They took out his feeding tube!!! They also tried going without the oxygen again. He ate really well and was keeping up his SATs, so we were hopeful he may not need the oxygen.

Then they did his carseat test.

Before kiddos leave the NICU, they must be able to be in their carseat for an hour without dropping their SATs.. Owen's pulse ox dropped several time in the first 20 minutes.

Then while he was sleeping later, they dropped again when he was in a deep sleep. It took some prodding to get it back up.

These two events this morning mean that he is just not quite ready to be off the oxygen yet.


We will get to take him home tomorrow, but he will be on oxygen. We are not sure what this all entails yet, but we are THRILLED that we can have him home with us.

Then the real chaos begins:). Here is a pic I took when he was tubeless for a bit this morning!

No comments:

Post a Comment

I'd love to hear from you!