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.

Saturday, December 29, 2012


We just finished visiting Owen in the NICU and got to hold him!! It was a wonderful hour and we cannot wait for more snuggle time soon.

We also got to meet with the neonatologist about Owen's status. So here is where we stand...

**His hemoglobin numbers are now within normal range, so the blood/saline exchange worked to solve that issue.

**He is on billi lights to stay ahead of the jaundice that may settle in as his body works to break down the other extra red blood cells (typical of a newborn and especially with all the thickened blood from the extra hemoglobin.). This really stinks because we cannot hold him as much as he is under the lights.

**The remaining issue is his oxygen level. They tried weaning him off the extra oxygen, but he didn't tolerate it well, so he now has a nasal cannula. The doc said this can be normal for some babies as their bodies transition from circulating blood differently before and after birth. They are confident this will resolve in time with the additional oxygen support, it will just take time. I believe he classified it as pulmonary hypertension--lungs working harder then necessary.

So, in line with our current history, we wait.

I am getting better at this than I would like.

We hope he will be on the way home by the end of the week, but we just don't know.

We did get to watch him get his first "bath" and I have never been so happy to change a dirty diaper:)

All in all we are so incredibly lucky that none of the potential DS issues have arisen, especially heart or bowel concerns. He is adorable and relatively healthy and we cannot wait to bring him home!

Thank you for all your thoughts and prayers!

No comments:

Post a Comment

I'd love to hear from you!