Dear Levins

Dear Levins,

One day you are going to read this letter.

First and foremost Mama and I love you with all of our hearts. We prayed and prayed for you. God answers our prayers and blessed us with you. You have taught me so much in your almost 5 months here with us. Do know that you are made in the image of God and that is unbelievable to even think about?

You have been through more in your short time than most people do in a lifetime. Your determination, fight and smile have taught me so much. You could not swallow or really even breathe on your own when you were first born. That didn't even stop you. I can't ever quit on anything in life after watching you fight on a daily basis. Saying I have learned a lot from you would be an understatement. You have shown me the true meaning of life and how I should be living. I look at your surgical scars and cry. I cry for the pain you have been in and that I was not able to take it away. You caught me crying the other night when I was holding you. You smiled and let me know you were going to be ok. I hope one day I will be able to have the same strength that you have. You must have gotten that from Mama.

The day I am scared of the most is when someone is mean to you for being perfect. Do know that people do not understand what they say? You are perfect in every way. If anyone ever tells you any different they are lying.  You came into a world that is not fair but a world that needs strength like yours. I will be there that day to pick you up. Maybe not physically, but know that I will always be there. Always remember how beautiful you are. Know that you are perfect in every way. Pray for the children that are mean. That is the right thing to do.

I have always considered myself a generally positive person. I have tried to look at life as a glass half full. You have shown me that even one ounce of water is a full glass. You are incredible. I am honored to call you my daughter.

You will be able to do whatever you want. You have shown me that there is not a thing you will not be able to do. One extra chromosome will never hinder you. Honestly, it has made you someone I inspire to be like. You will ride your bike. I know you will fall and Mama will get upset. I promise Rett will be there pushing you and making sure your don't give up. You will one day not live at our home everyday. That day will be tough. Tough for Mama and me. As far as I am concerned you will always sleep next to our bed. I know one day I will have to let go and let you spread your wings. I hope God gives me your strength the day that happens.

Rett will be with you longer than any of us. Do know that she loves you with all of her heart? She asked Mama and Daddy for you. She has always wanted a sister. You are her best friend. I can not wait to watch y'alls relationship grow. One day when I am not around (hopefully 100 years from now,  ha!) let her know how proud of her I am. I know she will become a strong woman. She only knows one way. You both one day will have families of your own. I know that your bond will stay strong and you will watch over one another. Smile and I know she will too.

Levins, thank you for teaching me the true meaning of life. Through all of your hard times you have never quit. You have always fought your way back through every challenge that has been thrown your way. Keep it up! The world is watching you. I love you.

Love,

Daddy

Finally Together

It has been a while since I sat down to write about being home. It is not that we do not have a lot to talk about and it's not that I really do not know how to describe it. We are just settling into our new routine. On our ride home with Levins I caught myself asking Cullie what the schedule would be for Sunday. It has become such a huge part of our life being in the NICU that it did not feel right not going back.

I held it together a lot better than I thought I would on the way home. Seeing Cullie in the rear view mirror finally smiling is something I will not ever be able to describe. She has been through so much over this journey and it was so great to see her smile. I could finally see her breathe.

There were signs in our neighborhood welcoming Levins home. I got emotional then. I kind of lost it. She was finally in the neighborhood she was supposed to be. Around families that will watch her grow. Families that will pick her up when she falls off her bike. Other children that will watch over her at school. God let me know in the ride through the neighborhood that everything was going to be ok. As we pulled down our street our families, friends, and church family were all out in front of our house. It was a special moment. I still get a little teary eyed thinking about it. I got out of the car and called Rett over to see us. She did not know Levins was coming home. We did not want something to happen and the date change. The moment that she saw her in the car was something I will remember forever. Our girls were finally together. There were a lot of hugs and tears that day. Several people that had spent countless hours praying for our family were there. I will never be able to thank each and everyone of you enough but know that it was greatly appreciated.

We have oxygen, monitors, and a feeding tube at home. Oxygen and the feeding tube are no problem. Monitors on the other hand are intense. Levins is a very active child. She thinks its fun to kick off her monitor on her foot and also roll just enough to pull her leads off. Sleep was minimal the first couple nights. Everything is new with the monitors. They will drive you insane. The alarm is just as loud if she kicks it off her foot or if she is having issues. I understand why we need them but they are intense.

We have had a few scary moments. I was getting in the shower when Cullie comes in and said her tube had come out. It was a wild couple hours. We were planning on grilling salmon, but we ended up spending our Friday night in the ER. Levins' surgeon was on call and he met us there. He had that tube in faster than I could park our car. I know he cares about Levins which means the world to us.

We are also those parents who are going to let Levins live and experience the world. We have made it out to eat and shopped a little. We are the parents now that get the looks from across the restaurant. Yep, that is us. I will be honest and say we are not trying to ruin your lunch, but your looks are not going to ruin ours either. Think about her next time you are out and hear a loud beep. We are probably eating there too!

Watching Levins and Rett together has probably been my favorite moments. Levins follows Rett with her eyes. She will turn her head to her voice all the time. It is unbelievable to watch. Rett loves Levins. She is always there to help. She can silence the alarm while we fix the leads and always makes sure she has her pacifier. Watching them grow is going to be pretty special. Their bond will be very strong. They are showing it to us already!

NICU family, we miss you! Keep saving those sweet babies. Please let Panera know everything is ok. I know they are panicked they haven't seen Cullie everyday. We will be up there soon. Thank you again for allowing our Levins to come HOME!

Please continue your prayers for our Levins. She still has a long road ahead but she is getting stronger everyday. Pray for Rett that she will continue to be Mama's helper. Pray for Cullie. This is a lot of work, and I know she would not change it. Pray that God will give her the strength she needs everyday. Pray for me. Pray that I will have patience to be where I need to be.

115

115 days old. 115 days of heart ache and joy. 115 days that we would not change. Today we are taking our Miracle home. I honestly was not sure this day was going to come. Truth be told Levins was born with a major birth defect. Not being able to swallow and constant aspiration can be fatal. I will never be able to thank the team at Levine Children's Hospital enough. I have said this before but a part of us will always be in the West Nursery.

We have made friends that will last a lifetime. They have seen us at our most vulnerable time. They watched over Levins for 115 days. I'm not going to lie we will miss the West Nursery. It has become our life. We have been in and out of here everyday. Cullie has been here everyday. The team here are not friends, we honestly consider them family. Thank you from the bottom of my hearts for giving Levins the opportunity to come HOME.

If you are ever in a similar situation, be there. What I mean is be there for rounds, be there to change diapers, be there to snuggle your child, and be there to thank the team. Be there to pray. You are going to hit rock bottom one day at the bedside and ask God how in the world are you going to get through this. I did it. I can tell you that if it is His will you will be in a similar spot soon. Your cart will be packed, car seat will be ready, travel oxygen and feeding pump will be there. Stay the course and never quit. If you quit how will your child make it HOME? I am not telling you it will be easy because it has been the hardest 115 days of my life. It is all worth it sitting on this extremely uncomfortable chair at room 7660. Your day will come. Stay the course.

There have been a lot of things I have been looking forward to. One being seeing Rett with Levins. I know it will be a transition having her sister home, but Rett will be so excited. I can't wait till they have bunk beds and this is all just a good memory.

Now for the mushy stuff. There is an old saying about behind every strong man is a strong woman. I don't agree with that. I would not be here today if that was the case. At our house we play as a team. Cullie is the quarter back. She drives us up and down the field. She keeps our ship going. She is our rock and is always where she needs to be. God honestly really knew what he was doing. He put a strong gorgeous woman in the life of a flat billed baseball player who needed her. I wouldn't have made it through this with anyone else. It has not been easy on our marriage by any means but it has made us stronger. Our love is deeper than before. We have seen each other at our lowest points and pulled each other through. I hope one day I will be able to thank her for being her.

Family is our life. But our Family has made our life their life the past 115 days. They have been there for us every step of the way. From getting Rett to and from, sitting for hours at the hospital, taking a shot of bourbon with me when I needed it, retail therapy, hugs and I love you's. We would not be taking her home if it wasn't for y'alls support.

I will be a wreck today. I cried a little on her final rounds. Not because I was upset but because I was thankful. Today was just as important of a rounding day as Day 1. That meant the world to me. The team was still discussing different options for the day even though we are leaving in an hour. They do this hospital thing right. Thank you.

Pray for us during this transition. Pray for Levins and her adjustment. Pray for Rett and her adjustment. Pray for our patience. Pray for Cullie. Pray that she will continue her strength. Pray for me. Pray that I will be the rock we need. Pray for the other children, families, and hospital team at Levine.

The car ride HOME will be amazing. I can't wait to see the wind on her face. I can only imagine what the sun will look like for the first time. Thank you God for giving us the opportunity to take Levins HOME!