I had received a gift from a dear friend about a week ago. It was a bag for Gideon consisting of a few outfits. One of the outfits, a sleeper with green froggies, Gideon already had. My mom had purchased it a few weeks before because he was quickly outgrowing his sleepers and now needed to wear the six month clothes--chunker. I am terrible at removing things from the car--just ask Lance--and these were no different. I had forgotten to pack a change of clothes in the diaper bag for Tristan after using his packed sleeper at home group Monday night when I changed him for bed but luckily I had the bag in the car and dropped it off too just in case he had an accident in is clothes--which he has been known to do:-)
The night ran a little smoother than the previous night. My dad slept again in his truck. My mom, mother-in-law and aunt were all able to sleep in a sleep room that had a full-size bed. They all were able to fit sleeping crossways. They were even able to shower. Gideon's potassium and glucose had returned to normal and he was making yellow pee at an acceptable amount. So his meds of potassium, insulin and vasopressin were able to be stopped. His sedation and seizure meds were being weaned. He did have to have 3 boluses of fluids and then finally a transfusion because his hemoglobin had dropped to 8.2. When changing him late in the evening, he pushed his legs against my hands and moved his arms and opened his eyes some. He also seemed to be moving his feet more in response to touch. As he was getting warmer, like during the previous evening, he seemed to be doing more. The doctor quickly tried to blow out that flame of hope--it was merely posturing and spinal reflexes (not brain activity). I still had hope. My God is a Sovereign God. He is all knowing. He is all powerful and He will have the last word. The last say. Not the doctor. My baby is still in there. The brain flow test was going to show them that God can heal and protect.
This morning started out with another visit from Dr. Barton. Again, his posse gathered outside the room with all eyes on him and glances at the baby and mother behind the panes of glass. I sang to Gideon--his favorite carseat calming song. "He walked the dirty streets famous for nothing. he said come follow me and they came. A face like all the rest but something was different. The son of God would lead the way. And soon they all would say, There He goes, a hero, a savior to the world, Here He stands, with scars in His hands. With love He gave His life so we could be free. the savior of the world......" Dr. Barton began his talk with me discussing the EEG that had been recording since that first night in the unit. Today, it shows no activity. The tears welled up and my heart sank. Still, it could be from the seizure meds and his temperature suppressing his brain activity. And better still, God is sovereign. He moved on to look over Gideon. The thought, "a repeat of yesterday's tests, really?" ran through my head. but no, today he had something else planned. He decreased the breaths to zero on his vent. Gideon had been taking extra breaths the first night so what would he do today without the assistance of the machine? Surely he would take a few. He adjusted the settings as Lance and I stood there waiting for his chest to rise. Seconds of nothing...more seconds of nothing...more seconds of nothing...O2 sat dropping...Damn it. Breathe Gideon. Please breathe for mommy. Just a breath. Show them you can do it. Nothing. As his sats fell to low 80's the settings were readjusted. No spontaneous respirations. According to Barton, in his opinion he was brain dead but the test would help confirm along with a physical exam.
Today was the day for the brain blood flow test. All hopes were riding on this test. Now was the time for that miracle we had all been praying for. What better time than for God to shine and all glory to go to Him than when the doctors had said he was clinically brain dead. The test wasn't scheduled to be done until noontime. It had been a rule that only 4 people could be in his room during visiting hours and only 2 people at night. That rule seems so absurd in these situations. Let people have their family. Let everyone visit for as long as they need to. If the noise is kept down and people aren't in the way, let them in. Anyhow, I had asked if it would be okay if more than 4 people could come back since we had been given such a dire prognosis. Our nurse agreed. Child life came in and asked if they could make a hand molding of Gideon and get footprints for the family. Of course, I wanted them. I want to take him home but those things would be nice to have on the side.
I had sent out messages all night long for everyone to be in prayer this morning about the test that was to be done. Of course, we were to pray for God's will but more than anything I had wanted before in my life, I wanted His will to be my will. I wanted my baby. This boy who lay in the bed getting puffier and puffier was all I wanted. I wanted to take him home. I wanted to hold him again without all of the tubes. I wanted to feel him on my chest with his little face snuggled up against my neck and his sweet hands open and close as to if he was rubbing my back as I held him. I wanted my kid. This boy who God had given me. This boy who God had told me to have. This boy who God had told Lance what to name. This boy who next to God and each other was at the center of our life. Every decision that had been made over the past year had been made with the permission of God and the thought of Gideon in mind. I prayed that God was going to show everyone through my little 3 month old just what a mighty warrior of God was. I knew that God could do it and I prayed that He would.
My family had gathered in his room as we were preparing to go down for the test. I asked that when we go for the exam, that everyone would join in groups or as one group and pray aloud for there to be blood flow to every crevice of his brain. I wanted them to pray for that miracle. Now was the time. As we stood circled around, touching him, praying, looking at him, a Chris Tomlin song was playing. "How Great is our God" rang out behind us. We all joined in and the whole room was singing together in one accord all praising Jesus, giving Him the glory and all praying for a miracle. "How great is our God, sing with me, how great is our God. And all will see how great, how great is our God".
The transport team and with Lance and I following we left for the test. We waited outside of the exam room, sitting in the hall and praying. Upon returning, we waited. We loved on Gideon, loved one another and awaited the doctors to be shocked. Dr. Khichi came in and let us know that the test was up but it had not been read by the radiologist and so he was going to wait for his report before talking with us. Did the study show something he didn't expect and he wants clarity? A glimmer of hope?
I had asked that the family step out as we were given the results of the study. It wasn't good. Dr. Khichi proceeded to tell us that the study revealed no blood flow. He was now going to do a battery of tests similar to Dr. Barton's to back up the study results. A check for a corneal reflex--absent. Cold water in the ear canal (the eyes should divert away from the painful stimuli)--absent. Doll's eye exam--negative. A painful poke, a light touch--negative, negative. Then one more thing--time to take him off the vent and see if he will breathe. Again, we stood there during all of the tests waiting for some response and again waiting for him to take a breath. Waiting and watching, waiting, watching. Tears streaming. Hearts praying. Damn it. Breathe. Just breathe. Breathe. Nothing.
Dr. Khichi pronounced him brain dead at 1:40 PM on March 10, 2011. Two days past his three month birthday. 13 weeks and 1 day old.
That's it? That's all I get? That's all any of us get? 3 months? I don't understand. Had we not been faithful? Did we do something unpleasing? Did I put him before You? I sang to him Your songs. I told him about You. I took him to hear about You in your house. I read to him about You. I placed him in a care setting where he could learn even more about You while I was away. I don't understand. 39 weeks and 5 days of perfect pregnancy. A perfect delivery. 3 months of a perfect healthy, developing boy who had colic--but colic was okay. It made me sad because he seemed to hurt so bad but it was okay. I could handle it. He was just starting to get over that and be happier. He had just slept through the whole night. He was cooing more. He was finding his hands and his thumb. He was rolling over. He was finally able to use his exersaucer. Why in the world are You taking him? I don't understand.
I want to bathe him and dress him and hold him without the machines. I want him to be in my arms for his last heart beats. I know he isn't there and that he is already in Heaven but I want to hold my baby one last time. I made my wishes known. Dr. Khichi said it would be hard. he may turn shades of grey, purple and that he may even gasp. I don't care I want to hold him.
Shortly, we were met my a woman inquiring about possible organ donation. A quick "no" came out of my mouth. I knew what that meant. I can't hold him. I cant have him in my arms when his body takes its last beats. I apologized and I cried but I just couldn't do it. I knew it was selfish but I wanted to hold my baby one last time without all of the "stuff."
But it didn't go away. I was an organ donor. I had said many times, I won't need them--might as well go to someone who could use them. They aren't going to Heaven with me. So, why not Gideon's? I felt God pushing me and I held my ground--but I want to hold him. Then finally, a quiet "you can hold him but he doesn't need them. Share." I told Lance what i was thinking. If I could just bathe him, dress him and hold him and then be able to hold him one last time at the funeral home then I would be okay. Lance had felt God telling him to donate as well but he wasn't going to pressure me. He was thankful that I had changed my mind. Was this his purpose? 3 months of life to be an organ donor?
We sat down with the LifeShare coordinator. Gideon's liver enzymes were elevated and his urine output had slowed but they were going to start pushing fluids to try and get him hydrated since they had been keeping him on the dry side. Usually, they are unable to use the whole heart but often they need the valves so that was a possibility. Possibly a pancreas was needed. He wasn't sure but more than likely, they would go in for surgery late tonight and harvest.
After meeting with him, I bathed Gideon. The nurse had everything ready. He now rested on decorative bedding. He had a little nest made like I used to make for him when he first came home from the hospital to help him feel snug and cozy. I bathed him and kissed him then dressed him in the green froggie sleeper that had never made it home to his dresser drawers. He was absolutely beautiful. Green could have been his best color. My mother held him then my mother in law and then finally, me. I kissed him and talked to him and rocked. I sang to him and loved him. We placed him back in his crib and I told him goodbye. Kisses given from his toes up to his head, an "I love you" and "Have fun dancing and singing with Jesus now. Mommy has to go but she will see you soon so be good for Jesus while I am away." It was time to go. An empty car seat in tow.
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