The Thrill Ride We Never Hoped For

Anyone who has had a baby that suffered from pulmonary hypertension would understand how we are feeling today. Hour by hour, minute by minute, Jordan's stats can rise or fall. Alarms pierce through the sound of gentle rhythms created by the oscillator. "Beep,beep!"

Every time they sound, you can feel your heartbeat race and thoughts come crashing into focus, "Was that Jordan? Which alarm is sounding?"

It is a terrible game of numbers because our son's life depends on them. It is so easy to get pulled into watching the numbers constantly; or at least letting your emotions get twisted and churned in the process. It is almost impossible to break away; especially since Jordan just came off ECMO. Mommy was thankfully able to do just that today. She stayed at the Ronald McDonald House with Caleb. Our hope is that she can spend qaulity time with him and avoid watching numbers today. It is emotionally draining to say the least.

Relatively speaking, Jordan is doing good this morning. He is stable and his blood gas looks good. His chest x-ray appears to be a little better too. The right lung opened up a bit more. What's concerning is that although Jordan appears to be doing well, he continues to slightly slip backward in that his level of support keeps increasing little by little.

This journey has stripped us bare. All we have is love... Love and support from others. Love from God our Father. Love for each other and our family. Nothing else matters. We have a promise that we knew Jordan was going to be a fighter. And that has turned out to be very true. Jordan is fighting. We know that God has Jordan and we continue to praise him for filling our son's lungs with breath.

Sadness has filled this hallway this morning as another child we know who is battling CDH is not going to make it. Our love, thoughts and prayers go out to this family. They are friends and are dearly loved. We understand the torment this journey has put them though. Questions fill our thoughts that will never be answered. All we can do is share our love.