Hayden Progressive Care Update

Slow and Steady

Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.

-Psalm 143:1

As we approach almost one month of Hayden being in the hospital it is very difficult not to feel discouraged. It is hard to fathom that 7 weeks of Hayden's 16 week old time spent on this Earth has been in the confines of Levine Children's Hospital. Tim and I have faced a whirlwind of emotions from sadness and despair to anger and discouragement to relief and hope. Life in the hospital has not been easy nor is it ever going to get any easier.  Days are spent in the confines of Hayden's hospital room full of updates and visits from her therapists, specialists, and physicians while nights are filled with little sleep, lots of crying, and constant noise and alarms. Although we remain uplifted and positive it has always been challenging and continues to be the most challenging days throughout this entire journey.

Since our arrival last Monday to Progressive Care, Hayden's progress has been slow and at times it seems as though we are moving backwards.  She left the ICU on high flow oxygen but since our arrival her oxygen levels have increased to 50% and 4 liters when they should be decreasing.  Our main goal has been to wean her diuretics, sedatives, medications, and oxygen to a place that we feel comfortable she is ready to come home. But since our arrival her oxygen levels have increased instead of decreased, diuretics have decreased, but her sedatives and medications are right back when we first began the wean (if not more) in the PICU. 

We know this journey is going to be a long one and we have to take it slow and steady but when does discouragement turn into losing hope? We are surrounded by children who face the same outlook as Hayden and unfortunately there are a few that have lived most of their lives in the hospital. We have heard the moans and cries of Hayden's neighbors, seen the despair in other's faces, and watched as other parents have experienced loss.   With a foreseeable end not in sight, it is hard not to let our discouragement and despair turn into losing hope.  

For me the hope is in knowing that we are surrounded by so much support, love, and hope from friends, family, churches, neighbors, and friends of friends that share our story.  It is knowing that Hayden's story has already touched so many lives and continues to raise awareness for Trisomy 13.  It is knowing that these trials that Tim and I are facing in our lives right now were never God's original intent. Our lives and Hayden's life was never intended to be full of discomfort, discouragement or any pain and suffering. So we must persist in prayer and continue to hope because that is all there is to do.

We graciously ask those who are out there that continue to pray for us and Hayden each and everyday to pray for the Lord to help ease Hayden's pain and discomfort, help Tim and I not to be discouraged, and help guide our Physician and Nurses to find the right answers for treatment for our daughter. We may feel lost now but we know that God will help mend and restore our brokenness. For Hayden this is not her final destination, it is just the beginning of her story, and at the end of the day I am just an activist, fighter for Trisomy awareness, and proud Mother to the most unbelievably remarkable precious little miracle.