Well, we thought we had all of the stars lined up, but our Julia has decided she’s not going to wait until her teens to drive us crazy. Before she was discharged, there was one hoop our girl needed to jump through. And she unfortunately ended up in “face plant” territory on this one. I’ll tell you the story ends well, but there’s a little delay in her going home.

Babies born prematurely (and especially those with Down Syndrome) can have all kinds of challenges when it comes to riding semi-upright in a car seat. They may not have proper muscle tone to hold their head up and keep their airway clear. As a result, they can experience a drop in their heart rate and oxygen saturation in the blood. So the American Academy of Pediatrics recommends a car seat test before discharge from the hospital.

We had brought our car seat in a couple of days before and were waiting for the test, and considering how well Julia was doing, the entire staff thought would be a perfunctory exercise. When we got to the NICU this morning, we found that she did not pass the test the night before and they needed to re-run it. The test consists of strapping her into the car seat and monitoring blood oxygen saturation. The standard is that she must maintain it at around 85% or better for at least an hour.

The nurse got her into the car seat (Julia wasn’t wild about that), and we watched as the number on a monitor go up and dip down – our attitudes in direct proportion to the number. We finally decided that we were stepping off of that roller coaster ride. We went down to the hospital’s atrium, had a Starbucks and prayed, giving the entire situation to God. His will and not our own – a particularly tough prayer to offer when it comes to your kid.

Bottom line: Her muscle tone is not yet developed enough to support her airway in an upright position, but the news isn’t all bad. She’ll be assessed overnight for a car bed that will provide a temporary fix until her situation rights itself. The only delay is that it’s a weekend discharge and it will take a little time to marshall all of the resources to make it happen. They have already assured us that there is a car bed available and we should be able to take her home and continue the adventure tomorrow.

It’s amazing how friends can come around to comfort through a disappointment. I sent a text message telling of the disappointing delay to some of our tribe and we got all kinds of responses – including an offer from a friend who has contacts with an ambulance service that could have provided a complimentary ride home (I thanked him, but pointed out that we couldn’t tie up an ambulance every time we needed to get the pediatrician). Perhaps the sweetest, though, was from our friend Marie:

Sorry – But she will be another day stronger and we have eternity to love her!

We have decided to take the long view on this one, knowing that Julia will be home – very soon – and this is just another twist in the adventure that God has us on. There will be many more like this in the months and years to come.

Sorry, sweetie – but it will be soon!

We’ll pick this up tomorrow, and I’m feeling there’s going to be a more satisfied ending to the day!