This is what I have seen every day for the past week. One week ago today my baby went for a procedure and came back to me like this… my heart hurts.
It has been a week since I have seen the beautiful smile of my precious baby girl. A week since I heard her cry. A week since she said “mama” or “baba”. Her limited vocabulary grew as we have been here in the hospital. Prior to her PICU stay, Jemma had learned to say “no”, “go”, and my personal favorite “all done”. She would tell the nurses or doctors to “go” when they came in. She would have enough with whatever they were doing and say “all done” or hear the sound of the isolation gowns ripping off and say “all done” as she snuggled into my chest.
I can’t tell you what I wouldn’t give to hear that voice, see that smile, see the baby I know is hidden inside that body.
On Wednesday the 16th, I did get to see a little glimpse of my beautiful baby. Every day they do a paralytic “vacation”. They turn off her paralytic medication for 40 minutes and see her comfort level and basically just check how she is doing under all that medication. On Wednesday, I just happened to walk in a few minutes after the “vacation” started. I wasn’t sure what to expect and I will be honest in telling you that it was a bit strange to see her “asleep” yet still moving. I was talking to her telling her how proud I am of her, how she is my little fighter, how mommy loves her soooo much. I saw her hand start moving. I went around to the side of the bed with her moving hand and talked to her more.
My baby turned her face towards my voice. SHE TURNED TO ME!!!
Then I placed my finger inside her hand.
She grabbed my hand. MY BABY GRABBED MY FINGER!!!
After 5 days since this nightmare began, this was the very best thing I could have asked for. I can’t put into words what it meant to me to see her face turn towards my voice. She knew I was there; she reacted to my talking to her. And then for her to squeeze and hold on to me… oh my… words can’t even begin to explain my joy at that moment.
No more than a minute later, Jemma started to move too much and they restarted the paralytic.
I held her hand until the grip she had on me was gone. She was limp. Once again, my baby was hidden inside her body. I walked out of the room and cried hysterically… for the joy of having that experience and for the sadness that she can’t just come back to me now. She is there though and proof is in the feeling I still imagine every time I place her hand on mine.
To anyone reading this that may not get it, let me explain something to you. I went from having my baby being sick and talking to me, crying, whining, and being a stubborn little girl to a limp baby who appears to be sleeping all the time. You can only know that something is wrong by the vital signs or sometimes she has a tear roll down her face. The tears break my heart… I hate that. I have been told that she is having some great dreams under all those medicines. I sure hope they are because this truly is a nightmare to me.
But, for one brief moment, I saw a light at the end of the tunnel and, let me tell you, it is a beautiful one. My baby Jemma is my light.
Unfortunately, I have not been able to be present for a “vacation” since then but will soon. We met our new doctor for this week and she seems very nice. I have some new things to tell you but they aren’t as wonderful and beautiful as the experience above so I will save those for tomorrow. I will just share the wonderful, beautiful experience that has given me hope.
If you don’t mind, please share with the buttons above. I believe in the power of prayer and would love more people to know Jemma’s story so more people can pray. Thank you!