All Vivian’s levels stayed in really nice places after her infusion of red blood cells last night. Her ECG came back normal, and other than being tired and needing rest, there is really nothing else we could do from the hospital so they let us bring her home shortly after lunch.
If you missed her last few updates, Vivian was admitted last night and given a blood transfusion for some pretty critical anemia she was dealing with. We do not know what triggered such a titration down in her labs, but after following some odd symptoms, paired with some very off blood labs, the call was made to admit her and move forward with the transfusion.
As soon as we all got back under one roof today the adrenaline wears off so quickly it is like hitting a brick wall.
After being in a very calm season of maintaining Drake and Vivian at home, you forget the wear on your mind and body a hospital admission creates. The noises and smells and high alert is all too familiar, but the physical and mental strain is always a new/old friend.
We had a great night nurse last night. He was very kind and gentle with Vivian.
Vivian is very different from Drake in that she has a severe startle reflex that causes her body to go into a ridged arching pattern once any stimulus triggers the brain. Although we did not see this pattern until she was almost a year old, we have found ways to calm its intensity but nothing to control it yet.
Triggers can be a pin drop, a knee pop, the clanging of a toy. Virtually anything can be the right pitch or tone that triggers the cascade. Living in a home of five children, aides, PT, OT, Speech, and amazing friends…we have learned that we just have to embrace her and help her as best we can through the noise.
The night nurse, once he realized how sensitive she was, and that this was disease baseline and not infusion reactions, was great as to try to only get the absolute necessary testing over night.
I struggle at the hospital.
It’s funny how the hospital affects people differently. Eric finds deep sleep there as he rests in all the emergency care and staffing to help. I am quite the opposite..I cant seem to sleep more than 30 minutes or so.
Too many moving pieces, too many critical moments lurking, and when I do sleep, I sleep so deeply that it triggers a huge flight or fight reaction that feels like my heart is coming out of my chest that it is easier to just stay awake and lightly close my eyes.
Rayph had a baseball game tonight and although we had so many precious Mama’s that reached out to come take him, Eric really wanted to make sure he could be there for him.
Eric’s strength in leading our family is hard to find any other word for other than inspiring. His strength comes from the Lord, I know, but it truly changes a home when a man steps into the hard and carries it forward. We both fail daily, but I will continue to take my place beside him and remind him he is chosen by Father to do great things.
Being Dad and Mom to all these amazing humans with such diverse needs has been the greatest blessing and most challenging thing of our lives together.
I asked Eric if I could sleep a few hours once we got home since I would have the later hours with D and V when he took the bigs to the ball field.
I hit the pillow and then hours later I woke up to Eric’s gentle nudge that he had let me sleep as long as he could.
I have a painting on our wall next to our bed in between the windows. “ the Lord’s unfailing love and mercy still continue fresh as the morning as sure as the sunrise..” It is a spin of the verses in Lamentations 3:22-23. When my eyes focused, and before I could get my feet on the ground, God reminded me that He had already gone before me and not to fear…
We all sat outside in the sunshine feeling the breeze this afternoon before Daddy and the bigs loaded up. Now that the weather is warming up we are trying to make sure we spend intentional time outside each day with Drake and Vivian sitting in the sunshine.
I couldn’t help looking at my babies laying in the sun, wind blowing their hair, and such an exhausted peace in us all. When just a few short hours ago we were surrounded by beeping, screaming while we had to help hold arms and legs as she thrashed as they tried to find a vein to place her line. A baby’s cries in the room next to us paired Vivian’s.
All while knowing we came home today still tied to the disease that continues to ravish their little bodies...
Hope is a funny thing…
We have to continue to choose hope when everything feels so broken, we have to continue to put our hope not in our environment or what we are trying to push forward, or even our ability to meet the needs as they come….
But in our heavenly Father and His unshakeable character.
Tonight we sit outside a little longer…. We enjoy the warm breeze and the birds chirping, and the cool grass under our feet.
I am learning to be grateful for the trials as they teach us not to take for granted the little things that so quickly can get muted in this loud and busy life.
Thank you Father for another day of all of our babies under one roof, strong coffee, and your faithful promises.