Weep Not for the Memory

The past week and a half has been nothing short of heartbreaking but slowly I am learning to breathe again. 

First and always foremost:

Scott and I want to thank from the wholes of our hearts every single                   nurse, doctor, respiratory therapist and person at both Northside Hospital and Children's Healthcare of Atlanta at Scottish Rite. We never met a hand that we didn't shake or a smile we didn't receive. Luke had the best care possible for a premature baby born so early and underdeveloped. Luke MADE it 5 weeks with the help of everyone, he most certainly didn't have to. He could have gave out 3 weeks prior in surgery, but he didn't. Luke progressed as well as he did because of the staff at these two hospitals. And Scott and I will forever be indebted to them for doing all they could to keep our baby alive for us. 

The week before Luke passed, November 5-9th, were rough days. His fluid was so bad that it had began to ooze out of his skin. Not like sweat, he was literally oozing fluid. His poor tiny body couldn't filter it. He wasn't urinating at all. His catheter was bone dry. Which meant he was neither producing urine and his kidneys weren't filtering the waste anyway. Towards the end of week Luke was paired with Dr. Sysyn. The best neonatologist there. 

Dr. Sysyn was going to get Luke going. Luke had been on the blood pressure medicine Dopamine at it's highest dosage you could take so they implemented another blood pressure medicine Epinephrine at a low dos to try and jump start his kidneys. Luke stayed on this combination for 2 days. He was urinating like he was a grown man!He even tt'd so fast and much he shot his own foley out. Uh-oh spunky Luke was rearing his precious head. Daddy and I were so happy with the news.

Sunday morning (11th) the doctor called and said that they would be changing some of his nutrition around to try and help his body rid this fluid and keep the urine output so high. That call came in at 9am. By 10 am the doctor called again and we were leaving breakfast on the way to the hospital. He said Luke crashed on them but they were able to revive him for the time being. Scott told the doctor that we were on the exit and would be there in 10 minutes time. The doctor seemed fine with this. 

What we walked into in that NICU at 10:15 am almost made me faint. I had to grab on to Scott for support. My baby was laying with all of the sides down on his isolete and the top up with so many bright lights in his face. The respiratory therapist came running around and pulled us to the front. They were trying to keep him alive. They had the medicine at the highest it could go, they were bagging him for manual breaths and they were doing chest compressions on him. He had about 20 nurses trying to save his life. 20 people trying to keep my baby here long enough for me to see him. They had him up but not for long. I knew it was over when the neonatologist looked me straight in my eyes and said "Now is the time to hold your baby so he can be comforted on his way out". I died a million deaths in that very instant. His tiny precious heart had give out. It no longer wanted to fight to live and there was nothing they could do for that. Heart transplants just don't exist for babies.

They pulled a chair up for me and handed my sweet baby Luke to me to hold. He looked at me. There wasn't much fight in his eyes left but he looked at me. And I held my dying baby over my heart and died with him in that very instant. My sweet boy took too large a piece of my heart to ever be replaced. 

I sat there hoping that my heart to heart with him would bring him back. I rubbed his back. I sang him a song. I read what I could remember of Harry Potter. I told him that he was supposed to come home with Mommy and Daddy and meet all the animals that already love him so much. I told him he was supposed to learn a sport and play guitar or drums. I told him he was supposed to fall in love with his soul-mate and start his own miracle family like we did. There was so much Luke was supposed to do and it has been ripped away from us like a bad scene in a movie. 

I held Luke for the rest of the afternoon. From 10:15am to 4pm I held my baby. I kissed him. I loved on him. I smelled him. I felt him from head to toe. My sweet nurse let me bathe him. We had our very first bath time together and we dressed in real clothes. Michele the nurse swaddled him very nice for me and I held him more. I kissed his sweet face. I couldn't stop. I couldn't stop kissing that sweet babies nose and cheeks. Michele helped me make hand and footprints for our memory box and helped me make a clay footprint. Michele never left my side. She let me do everything I wanted with him. She is the most amazing woman I have ever met. She handled us with such delicate hands. 

I had heart to heart with Luke the last time before she took him away from me. I just kept forcing my heart to bring him back. I just kept trying so hard to have him come alive and me leave. I would gladly lay where he's lying now. I kissed him and kissed him. I tried to give him a lifetime of kisses. Michele rubbed a piece of cloth over my heart and Scott's heart and placed it on Luke's heart to have there forever. That is what I wanted.

Monday was a blur. I am so thankful for Scott, Brad, Mollie, My Mama, and Scott's parents for helping me plan Luke's funeral. I wanted only the most beautiful things for my sweet child. I wanted him to be comfortable. I brought a bag from home with special items that I wanted Luke to be with in his final resting place. We planned the funeral. I told my pastor the only verse I wanted to hear most of all was Luke 18:16-17:

       "But Jesus called the children to him and said, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone who will not receive the kingdom of God like a little child will never enter it."

He said he would be honored to speak that verse for Luke. Luke's name came from my favorite book of the Bible and because it was the only name Daddy and I could come up with together. LOL! Heaven now has a new Saint Luke and he's the most beautiful baby Luke to be seen. I left the bag with the funeral home and they said they would dress him and place him by my request for the service Tuesday morning. 

Tuesday morning we went to Eatonton where the service was held. Pastor Chris Webb is the most amazing pastor I know. I couldn't have made it without his guidance. He had been to see Luke when he had his surgery and prayed for him then. He was also with us on Sunday when Luke passed. I have never had a more caring group of people outside of our family that were with us Sunday. Children's chaplaincy was there, Michele (Luke's sweet nurse), and Pastor Webb. 

When we got to the church for the service, Jeff Wages from the funeral home allowed us to have a private moment with Luke before they closed his casket. Everyone put a memory in the casket with Luke for him to have in his new "home". 

- Mommy and Daddy wrote him letters telling him how much we love him. 

- Mommy and Daddy put a picture of us in the top of his casket so he can be with us when we go to the races. 

- Uncle Brad put in a GT hat he bought for him. 

- Meme Mary put in a blanket she bought for him.

- Nana Nell put in a baby blue cross bracelet she wore from the time he was born to his departure.

- Mommy put in a bracelet I wore when he got sick given to me by a sweet cousin, Kim.

- Papa Butch put his deer pocket watch (The one I gave him many years ago for Christmas) that meant so much to him. 

- We wrapped him in a blanket we got when he was born. The most beautiful blanket I have ever seen. Mrs. Rhonda at the Springleaf in Milledgeville gave it to us. It was blue with patches of bible verses all over. 

- He wore a sleeper that his cousin Kelly gave him that had "Our Little Prince" on the bottom of it.

- We put a crocheted hat on him that someone at Northside hospital made for him. 

- Mommy and Daddy also put his guardian Beagle in there with him so he wouldn't have to be alone. 

Everyone left the room and Jeff let us hold Luke one more time. I just kissed him and kissed him and told him that for the rest of my life nothing would be more special to me than his sweet kisses. I told him that he would always be my baby Luke and nothing will ever change that. Daddy held him and did the same. We gave him back and he was closed for the last time. 

Luke was the most amazing person I have ever met because within minutes of seeing his precious face I fell so deep in love with him. Holding him for the first time I fell even harder. He has taught me so much about life and how it should be lived. He has changed me because I want him to be proud of his Mommy and Daddy. So when another boy in Heaven asks him which parents are his he can point out Scott and I with love and respect and say those two are my Mommy and Daddy. 

At the graveside we asked the pastor to play a song before prayer. When Luke was born early we spent those 5 weeks trying to pick out a song to bring Luke home to for the first time. We wanted the perfect song for him to hear for the first time ever. So we picked God Only Knows by The Beach Boys. We picked this because God only knows what we would be without him. When he passed so suddenly I told Scott we should still play his song for him. He is going home, not our home, but one so much better where he doesn't have to live in suffering. 

The support my family and I received from everyone from Sunday to Tuesday was amazing. I can't thank everyone enough for coming to help us celebrate sweet Luke's precious life. We are so thankful for everything - cards, hugs, kisses, food, companionship, calls, texts, emails, Facebook posts, etc. We really appreciate the encouragement and support. 

Scott and Melissa