I started several blog posts over the past few weeks, and nothing stuck. My 2nd daughter's birthday was yesterday, April 16. So, I thought I'd share the end of her story just the way I wrote it two years ago, four days after she died on April 26, 2010. And yes, it is sad. But hopeful too. (Skip to the end if you just want hugs)
"Go home baby, just go home. It's okay. We will miss you, but just go home. We love you. It's okay, just go home. Mommy loves you."
I woke up at 1:23am. Since her birth we had had all good nights, not a single call. Two minutes later the phone rang. Dave calmly answered and then climbed out of bed, "She's doing the same thing as earlier, they need us to come up at once."
We had visited Gracie Lou after church with Natalia, Grandpa and Beppe. Gracie was doing well. She'd had a rough care--where they change her diaper, weigh her, rotate her, and take a "blood gas" of all of her internal systems--earlier in the morning, but had stabilized by the time we were there. After just a few hours, Dave, who had been with her late into the evening (when she had dipped to a critical level) asked to go home. We went to my folk's house and played in the back yard with Natalia.
At about 6pm we headed to dinner with my parents and Luke and Brittany. Right after our food arrived we got the call. "Come now, we don't know if she is going to make it, her oxygen level is so low and she's not responding to anything we are doing." My heart broke as I looked at Natalia. I had so badly wanted to tuck her into bed. It had been so hard to be away from her and miss our normal routines. Dad got boxes for our food and Luke quickly dumped it in for us. I started crying as I said goodbye to Natalia. "Mommy loves you, we will be back. We are not abandoning you, we will be back." As Dave and I ran for the door Natalia began to cry, "Mommy!"
While we sped to the hospital, it was just so, so tense. Call Amy, let her know and ask her to post on the forums so people can pray; call Dave's parents; call our pastor. "Would you like us to come?"..."How many times do you have your pastors come to pray at your baby's bedside?"..."Don't worry, I'm sure it will be fine."; call our old pastors, Rob and Cindy, "Please pray."
Nearly downtown the phone rang again. "It is the doctor, I just wanted to let you know she is stable. Please still come up, but don't get into an accident."
"Baby boo, you gave Mommy a heart attack. Little Gracie girl, hang in there."
Her numbers were the best they had been since she was born, but it was a false sense of security. They had given her a new drug, and the doctor made sure we knew her levels would not stay stable.
After only a short time we said good night and headed home. Natalia crawled into bed with us and was sleeping on my arm when the next call came.
No longer the calm, dark cocoon where she could grow, the entire room where Gracie lay was lit up, there was no cover on the incubator and only her eyes were shielded from the glare. Now she was a medical emergency.
The machines keeping her alive were humming, her tiny body thrumming with the oxygen being pushed into her. 100% oxygen at the highest level her body could handle. Her skin was stretched tight over her chest and her belly was distended. When I placed my hands on her I could feel the beating of the air through her toothpick sized ribs. Her whole body vibrated.
"Oh sweet baby. Precious girl, hang in there! We are here, we love you. Please hold on. Lord, breathe your breath of life. This is easy for you. You created the entire universe with just words, you can save her. You don't have to be here. Just speak the word and make her whole. Please God. Let this be a builder of our faith, not just a lesson in grief. I don't think I can bear this. But I guess I'm still here...so I am bearing it. Father please, please, touch her body."
Two hours later I had to pull my arms from the incubator. It was just too much. I collapsed into a chair and dozed as Dave touched her.
Three hours and fifteen minutes after we arrived, the new medication that had brought some stability had run its course. 5:15am. Would she rebound, or was this the end?
"Please, Father, please. Oh, baby, we love you. We are still here. Lord, we need the miracle now."
The day nurse suggested we rest for a short while and had set up cots for us in the NICU's family room. 8:21am, Dave dozed and I posted on Facebook: After 3 hospital calls Dave and I have been here since about 2am. We are praying for a direct answer: may Gracie be healed or may she go Home today.
I questioned the Lord. Will joy come with the morning or will we say, our God is still faithful?
Then I called my parents, our old pastor's wife, and, finally, my sister Amy.
Through tears, "Jonelle, I wonder if you should just say good-bye? Gracie Lou obviously loves you; she rebounds every time you are near. She's holding on for you. Maybe you should just release her. Let her know you will not lose faith in God, that you love her, but that you are okay with her going home."
"Baby girl, Mommy loves you. But it is okay. You can stop now. You can just go home. Go rest. Let go. It's okay. Oh sweet baby. We will miss you, but just go home. Thank you for fighting as hard as you did. I am sorry your sister never met you; she wanted to. It's okay. We will be okay. Just go home. Go rest. We wanted to take you home, but it's okay. Let go. Just rest. Dear Lord, please take her. Please don't make us play 'god' and choose when her life should end. Please Lord, take her home."
Dave walked in, "I think it might be time to hold her."
"Yes, it's time"
9:30am. The first time I held my baby. 9 days old. At barely over a pound she was so light I don't know that I really felt her other than the weight of my own hands holding her to my chest. The thrumming continued, pulsing from her body into mine.
Dave called my dad, "Please come. You have documented everything, please be here."
At first it was just pure joy, holding the little life. My little girl. Gracie Lou.
"Oh sweet girl. We love you. But it's okay, go home. Just go home."
Dad arrived. He started taking pictures. It was just the four of us: Dave, Dad, Gracie Lou and me. It was the cocoon again. The curtain drawn, the lights low. Peace.
I looked at Dave seated beside me. "What are you thinking?"
"I think it is time to turn off the respirator."
"Yes, it's time."
The nurses removed the final machine that was holding Gracie Lou here. Silence. No more pulsing, no more beeps, no more monitors, no more emergency. Peace.
Dave held her for a few moments, she cuddled into his neck.
He passed her back to me.
"Little one, the Lord has already blessed you. He will keep you. Soon you will see His shining face, and you will be at peace. Oh sweet girl. We love you. We love you. But it's okay, just go home. Just rest."
11:45am the doctor came in to listen for a heart beat. With no machines there was no fuss, no numbers counting down, no straight line to say, "Now, now is the moment your child is gone." After several beats of my own heart she quietly said, "I don't hear anything."
A shell. I was holding the broken shell of my daughter who was already dancing before the Lord. Whole. Complete. Not in pain. No longer fighting for air. Her life here with us was over.
As my sister said later, "How beautiful, the last thing she heard before the choirs of angels singing before the Lord was your heart beating." Yes, it was beautiful. Peaceful. Not rushed and frantic, but soft, tender and quiet.
Thank you God. We are grateful to have had her.
So much of Gracie's life is just beautiful and wonderful. To end with beauty, and ultimately the wonder of our hope through Christ, I thought I would share some "hugs" from God I had yesterday:
Hug: Eliana started giggling the day before Gracie's birthday. Baby laughter, there's not much better.
Hug: right after posting to FB about Gracie dancing with the Lord on her birthday I got a picture of a girl with long dark hair in a swirly dress kicking up her heels.
Hug: Natalia asked me to sing her favorite song, "my God's not dead, he's surely alive..." (isn't that the truth?)
Hug: a beautiful birthday breakfast made by Dave's mom with French toast (my favorite)! My parents joined us, lovely.
Hug: sweet calls (and texts) from friends loving on me.
Hug: going to the butterfly pavilion to get some butterfly kisses.
Hug: the butterfly pavilion itself was lovely, a girls day with my mom, mother-in-law, Natalia and Eliana.
Hug: sunshine and warmth enough to go on a walk.
Hug: silence when I needed it, talking when I was ready.
Thank you God.