Light at the end of the tunnel

"Staying the course" and "One day closer" have become our lives these past three and a half months. I use them in my daily routine to help make sure I can make it and do the things we need to do. We knew this holiday season was going to be fun and different. It has truly lived up to both. It has made me realize even more how much Family really means to us. I honestly can say that our family has helped us "Stay the course".

Christmas was great! We spent time with Rett in the morning. She opened all her presents and was so excited to play with her new toys. It was important for us to spend time with her that morning. It did not feel right not having Levins with us, but we were where we needed to be. Rett will remember this Christmas. It will be last one by herself. Next year she will have Levins crawling all over her.

We later got to spend time with Levins at the hospital. I'll admit I was really excited to see her. We brought one of her gifts for her to open. It was a bear from Dunlap Love on Etsy. She got the panda that has DS in Dunlapville. Rett got a pig that is the pandas best friend. They are pretty cool. Definitely worth looking up. One of our favorite nurses was with Levins that morning. It made us relax knowing someone that knows her was watching over her.

Levins got to meet her Great Grandparents for the first time this holiday season. It was really neat seeing them interact with her. I'll admit they do more at 82 and 83 than I do now. Their last name is Levins. My Grandpa told me he looked up Levins on an ancestry website. He said the name means "Love". That was a pretty cool moment hearing that and I know God had a plan in naming her.

They unfortunately left early this morning. Mimi and I took them to the airport early. I got home in time to sleep for a couple hours before we headed to the hospital. I could not fall asleep. I sat there thinking about Levins and Rett. This process has broken my heart for the time that I can not have back with Rett. It let me know how important each day is and not to take things for granted. I remember being tired at night and not helping Cullie with Rett with she was a baby. Now I dream about hearing Levins scream next to our bed. I guess my point is be involved with your children whatever age they are. Do not be a bystander and not help with the daily routine. You will never get those days back. It is sad that it took this situation for me to realize this. When I got in bed Rett was sleeping in the middle of our bed. She has a habit of waking up at night and coming into our room to sleep. I know it is not ideal, but I wouldn't change it now. It was all I could do not to pull her close to me and squeeze her. I laid there and thanked God for our girls. I still do not understand how I got so lucky.

This week has been up and down roller coaster of emotions for us. Levins failed her car seat study and swallow study the first time around. I know she can swallow because I have watched her do it. The problem is we have to make sure it's not going into her lungs. She had another swallow study today. It was pretty neat watching it. Our surgeon, nurse, speech therapist, and radiology team were all there watching. She swallowed everything they gave her. She did well with the honey thickness liquid, but aspirated the watery liquid at the end. We will now use the honey thickness to help train her to swallow properly. She also passed the car seat study.

After the study, we met with our surgeon. He said after watching the study he was comfortable allowing her to go home relatively soon. The words we have waited to hear for the past three and half months were finally spoken. I honestly was some what speechless. We knew that day was coming but still did not know when we would hear the words. He has given our Levins the opportunity to live. She can swallow and she can breathe. Now she is going to be able to come HOME!

We have a mixture of emotions right now. We are so excited to have our family together for the first time at home. We are going to miss the people at the NICU. I honestly tear up thinking about them. They love Levins and we love them. They are all a great team and Angels in our minds. I will never be able to thank each and every one of them enough. It has been a long journey but one they never gave up on. They have put up with our emotional roller coaster. They have always been there to listen. We have gained several new friends. Some have seen me cry more than many of my closest friends. There will be several hugs the next couple days. We will always have part of us in the West nursery.

With all that being said we are now preparing to bring Levins home. We are by no means out of the woods, but she is able to come home on light oxygen and a feeding tube. We will take her home any way we can. We have an idea of a day but that could change with several factors. I do not want to say an exact date in case it changes. Thank you for all of your support. I can honestly say I am humbled hearing of all the prayers Levins has going up for her daily. Please continue to pray for all the children and their families in the NICU. Every family deserves the same amount of support.

I am going to continue writing on this blog. I think if someone is willing to listen to her story it may help another Dad or Mom in the same position. I did not ever think this many people would follow her story. Thank you for showing your love and support to a family and child that you have not met personally.

Our day is finally coming. I am going to apologize in advance for the emotional wreck we will be walking out of the doors. It will be happy tears. Tears we have been holding in for three and a half months. I can not wait to see the look on Rett's face when Levins is carried in our house. Rett turns 3 on New Years Eve and I know it will be a great gift seeing her sister soon after.

Levins is a miracle. She is a child of God. She is perfect. I cannot wait to watch her grow. Pray for Levins and her transition in the next week. She will see the sun for the first time, feel wind on her face, meet Delia and sit on Rett's lap. The things we used to take for granted will be fun to watch with her. Pray for Rett. Pray that she has a wonderful third birthday and that her transition with Levins goes as smoothly as possible. Pray for Cullie. Pray that God will give her the peace to know we can handle her being home. Pray that she will take time to smile and enjoy the moment. Pray for our extended family. Pray for me. Pray that I will never take another diaper change for granted, another wake up to feed Levins, or anything else that needs to be done. The light in the tunnel is here. Our precious Levins will be HOME soon!

Christmas

The faster Christmas has approached the more perspective I have on Christmas. I don't think I really understood the love you can have for a child until Rett was born. It has grown even more since Levins has come into our world. To be honest I don't think I really learned how much I love my children until I put all my trust in God. I know some are reading this and not really sure what I mean but it's true. I have always been a believer in Christ, but being the typical man I thought I was still somewhat in control of my life. This has been a wonderful, crazy, stressful and humbling experience. One that I have said numerous times I would not change. If this scenario is the only way I can have Levins in my life, then this is how it is going to be. I am in awe of the strength God has given my family. God has shown me the direction he wants my life to go.

We are close to all being home together. Christmas will have a different feel, but it will be the best one yet. Of course it is not ideal not being together but we are all here. Being able to watch Levins breathe comfortably and swallow is all I wanted Christmas. The little things that I used to take for granted are so big for her. She is our Christmas miracle!

Most of you know by now I am an emotional guy. I always have been. It's who I am. I have cried many tears of pain these past few months. Those tears are changing. They are tears of joy and thankfulness. I just cried watching her attack her pacifier. The little things in life are now the most important.

We are going to have a great Christmas with the people we love. There will be a lot of laughs and I am sure some tears. I will drink a few glasses of bourbon and thank God for all the blessings in my life. Do not feel sad for us on Christmas because we are not all together. Instead, get excited that we have the chance to be together soon.

Please continue to pray for our girls. Pray that they will have strength to continue fighting daily. Rett wants Levins home. Levins wants to see Rett. Pray for Cullie. Pray that she has the best Christmas ever. Pray for me that I will have the strength to continue to attempt to lead my family in the right direction. Pray for our families that they will continue to give us the strength to continue our fight. Pray for the other children and their families in the NICU.  Merry Christmas and I hope that we all take time to look at the true meaning of Christmas.

Her Time

One of the hardest things about this whole process is time. We have never had a true time table, which can be hard. The problem is no one really knows. Now that she has had her operation we can finally see the light.

It's been a crazy week. From breathing tubes slobbering out to seeing her awake. Again I will never be able to thank the nurses, doctors, respiratory therapists, nurse practitioners, and the entire hospital team. It has been a stressful week seeing her on the vent.

One of the hardest things for me is not being able to fix the problems and not being there. I am always trying to think of ways to fix problems. That is how I am wired. Sometimes it gets me in trouble because I am not the best listener. I just immediately start thinking of ways to fix our problems in life. This is hard because I can not do anything. I am learning to listen and trust the team with my daughter's life.

When you are in this situation in life it requires a lot of patience and trust. Being a husband and father  requires me to provide. There are several days that I do not see Levins. That is really hard but it is something I need to do. I believe it's something my daughters need to see. I think we get lost today in things we want to do, not necessarily what we need to do. I want to be with her every minute but I need to make sure she can have the bike she wants later on. The only reason I am saying all this is to try and help the Father who is sitting next to his child and not knowing how to balance everything. It's not easy. You need to somehow get into a routine and then again fly by the seat of your pants. You are going to grow up a lot as a Father in the next days or months. Your priorities will change. They change with most Fathers in general, but when your child can't be home with you, they are a little different. Your cherish the twenty minutes you can be at the hospital before going to work. You cherish seeing her wake up and look into your eyes. You cherish the opportunity to provide for her. I will never say that the way Cullie and I are handling life right now is perfect. It works for us. Find what works for you. Find time to be at home with your other children and wife. Listen, listen, listen. Every person in your family is in pain.

I think we are in a good spot right now. We still do not know when she will be home, but I can see the light. God only gives us things we can handle and he has made me a better Husband and Father through this time. It's a process and sometimes I questioned the process. I know it is never good to question but it has helped me mature during this time. God knows when she will be ready to come home with us. Levins I am sure has an idea when the time will be. I would not change a thing we have been through. Every time I walk in the nursery all the pain goes away. Having Levins in our life has been amazing. I wish I could take her pain away, but I know she is on road to recovery.

Pray for our family this week. Christmas is coming up and we all won't be together. We are going to enjoy our time together and will enjoy our time in the nursery. Hug your babies and hold them tight. Never take a moment for granted.

Painting her picture.

Today was a day we had been waiting on for three months. It was the day our precious gift was going to get fixed. The excitement of saying those words was something I cannot describe.

We arrived at the hospital at 10pm on Thursday. The staff was nice enough to allow us to stay in "The Suite". We got to spend some quality time with her before we went to sleep. The next day started early. We went to see her around 5:30 am. She was moving all over the place. She looked so good. She was happy and upset at the same time. I knew she was hungry. We eventually moved our way down to the 5th floor. I will never be able to thank the nurses enough for their care of Levins. Her primary nurse stayed later this morning to make sure everything was squared away for surgery. Saying goodbye was tough. It was tough because I knew she would be under for a while and I knew how serious it was.

All four of our parents waited with us. We laughed a lot and I'll admit I went to the bathroom to cry a few times. It was the longest 8 hours of my life. I know our Levins was fighting down the hall. Finally, we heard our surgeon was on the way up to talk with us. I could have thrown up immediately. I wanted to know, but at the same time I didn't. I wanted to go back to this morning and see my beautiful daughter smiling at Cullie. How was she going to continue to fight like this everyday?

He talked with us for a while. He said everything went well. They were able to accomplish everything they had set out to do. He is someone I will never be able to thank enough. He has given our little girl the chance to live. I would do anything for him. I hope one day I can thank him enough. He told us recovery was going to be a long process. We are still not out of the woods. She is still at high risk of complications. But she is one day closer to being home with us.

The support we have is unbelievable. I was texting a good friend of mine and he said "Think about the big picture." That hit home. I know she will be home soon. I know she will continue to fight. I prayed to God to let her picture not be so big. I know it was wrong, but I needed to say it. I'll admit this has been the hardest blog to write. I wish I had more to say. I am heartbroken seeing our little girl like this. I know she is in God's hands. Please continue to pray for Levins. She has a rough couple weeks ahead. Pray for Cullie and her strength. She is our rock. Pray for Rett as she wants Levins home. Pray for me. Pray that I will have the strength to be the stable presence my family needs. Her picture is going to be big one day. God is the painter of her picture. I know one day I will look back on this and it will be a small part of it. Pray that God gives her the strength to keep fighting.

Mixed Feelings

The day finally arrived that we were going to find out how much progress we have made. I'll admit I had feelings of excitement and terror. I knew what all it was going to require but it still scared me. We finally made it through traffic and got to the hospital. She was agitated because she could not eat but she was excited to see us. She was smiling at Cullie. Seeing her smile for the first time was something I can't describe. She again showed me that she was going to be ok.

Her procedure lasted longer than last time. The entire time she was down there I felt sick. I knew she was going to be fine but it's not something you ever get used to. She finally made it out and the surgeon was on his way up to talk with us.

When he walked in, I could immediately tell it was not what he hoped. He told us she didn't make much progress. We were still a long way away and we needed to discuss options. I could have thrown up. I kept telling myself how could we keep up this pace anymore. He told us the part of her esophagus connected to her stomach was not going to be salvageable. This basically meant the magnet study was out. He later told us he recommended esophageal replacement surgery. He would use a part of her stomach to make the repair. This was kind of a worst case scenario for us. It is going to be a major surgery and will require her to have more small feedings later on. He said he wanted to do the procedure with another surgeon and on a day when they both were rested.

I will say that hearing that news killed us, but hearing it from him made it better. I hope one day he realizes how thankful we are he is Levins' surgeon. I know God will guide his hands during her surgery. He is a man of God and it makes this whole process much easier on us. He told us he wants Levins to be home. I will never be able to thank him enough for saying those words.

We got a call yesterday from the surgeon's nurse. We were on the schedule for Friday 12-11 at 7am. I had mixed feelings immediately. The words I had wanted to hear for almost 3 months were finally said and I didn't know what to say. I knew all along that this day was coming and did know that it was going to be a rough surgery on her. I know that we will get through it and she will be home. I can finally see a glimmer of light at the end of the tunnel.

I will never get used to seeing my children and wife in pain. Seeing Cullie cry when Levins is in pain is something I can not explain. I tried to talk the nurses into letting me donate part of my esophagus so it wouldn't be as painful for Levins. They told me it was not possible. I pray that I could change places with Levins during her surgery and recovery. I pray I could take the pain away from Cullie. I pray that Rett will have her Baby Sister home soon.

Please pray for the surgical team in the coming days. Pray that God will use their hands to repair Levins. Pray that she will recover quickly and as painlessly as possible. Pray for Cullie that she will have strength to hold us together during the coming weeks. Pray for her wonderful care team in the NICU. I don't think they will ever realize how much we appreciate them giving our Levins the opportunity to live. Pray for our families as the stress of surgery is almost here. I am going to say the same prayers and also pray that God gives me the strength to be the rock my family needs. Our fighter is going to be able to breathe and swallow on her own soon!