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!

Thanksgiving

I will admit I really did not know how to feel about today. The fact that Levins was not going to be with us all together was going to be tough. I prayed a lot this week that God would help us not dwell on that fact, but enjoy our time together. It is definitely going to be different but we have a lot to be thankful for in our lives.

I laid in bed a little longer this morning. Rett came into our room a little earlier than normal and was was cuddled up with us. She was so peaceful and warm. We had a few great conversations yesterday about Levins. She and I talked about when they are older. She wants bunk beds so they can sleep in the same room. She told me she would sleep on the top bunk but would sleep with Levins when she was scared. If she only new the strength and joy I get from her.

I finally got out of bed and started on my way to the hospital. The entire way I kept telling myself how lucky I was. Not all parents are as lucky are we are. Several have Angels flying around the NICU. It was a moment I needed. It let me know not to dwell on us not being together but be thankful for the opportunity we have to be together soon. Days like today let me know how amazing the rest of our life is going to be.

I could not get up here to see her fast enough. She has another one of our favorite nurses today which makes me feel better. She had our favorite night nurse last night. I know that she will be well taken care of. As I walk in I hear Christmas lullaby's playing. She was fast a sleep. It let me know that God was watching over her. Hearing that music was definitely what I needed.

Monday is a big day for us. Levins will go back to the OR to see how far the gap is now. We are hoping and praying it is close enough that we can repair it someway. We have several different options. I feel like we are getting closer and should have options Monday afternoon. I pray that we make the right decision. It is decisions like these that we will have to make for the rest of our lives. I pray that God will lead us down the right path. I do know that we are one day closer to her coming home.

The only thing that could make my hospital visit today better would be to have Cullie and Rett here with me. I know that is not an option, but it will be happening very soon when she comes home. I do not think Levins has any idea what she is getting into. Rett is so excited to have her home. Snuggle your babies this Thanksgiving. I know that is what we will be doing today.

Conversations

Having your child grow up is a bitter sweet time. Rett and Levins are growing everyday. It makes me sad that they grow so fast but everyday seems to be more exciting. Since Levins has been around, Rett and I have spent a lot more time together. Just the two of us. I'll admit it's terrifying sometimes. I still get stressed over little things but we have a great time. When she won't take a nap or decides to climb into the booth behind us at a restaurant, it gets a little nerve racking. I am definitely learning patience and I wouldn't change a thing she does.

Rett is a thinker. She is always asking why questions like most children but seems to take it to another level. She is very concerned about Levins. She is always asking me how she is and what she is doing. She wants to know who her nurse is and what outfit she is wearing. Rett loves Levins unconditionally and always will. She gets teary eyed sometimes when she looks at her pictures. It tears me up seeing that but it always shows me she is protective of her sister. I can't wait for the moment when we walk out of the elevator and Rett is waiting to see her sister. I know the ride home is going to be full of conversation about toys, playing, golf cart rides, and dress up. Rett loves her cousins and I know she will be so proud to show her sister off to them.

Rett is questioning a lot of things lately. It amazes me the questions she will ask about God. She wants to know who is responsible for making everything. Which leads to who made God. There will be a conversation one day about Levins and why she can't run as fast or something along those lines. I can honestly say I am ready for that conversation. I know it won't happen for a while but I know Rett will get it. She will understand that God makes everything and is responsible for everything. She will know that God made everything in His image. Knowing that, I know she will understand that Levins is perfect. This was a conversation that used to scare me. Rett has taught me so much as a Father to her. She has taught me how perfect my girls are.

Levins and Mimi had a great moment today. They had a conversation. Between Mimi's tears and Levins cooing it was unreal! It was a moment I will never forget. I worry about her all the time. It was a moment I needed. She let me know she was doing well and she is going to get through this.

Levins is doing much better. Her cold seems to be going away. She fought hard to get through it. She had a couple rough days, which worried us all. This child is amazing. The things this world throws at her are tough but she fights. I'll be honest the day we walk out of here is going to be emotional. I will be a wreck, I think about it every time I drive to the hospital. I think about the time we get to load her up and bring her home. Seeing our family together is going to be a beautiful thing. I'll admit I am most excited about watching my two girls hug for the first time. That moment will be amazing. 

Thank you for all your prayer and support for my family. I can honestly say we can never thank you enough. Levins, Rett, Cullie and I are so lucky to have a support system like we do. Thank you for loving our girls.

Strong

I hope someday everyone will see Cullie as the amazing woman she is. I am in awe of her everyday. Not because she is the love of my life but also watching her Mother our children. Until you are in the situation we are, it is not something you can explain. She is always where she needs to be. She is balancing this insane time in our lives so well. The love of a Mother to her children is something I can never describe.

Her strength is unbelievable. Not having her children together is pulling strings on her heart every second of the day. I really hope one day she will understand how amazing she is. I don't understand how Rett, Levins, and I got so lucky. I know God picked right when he placed this woman in a situation that can be overwhelming for anyone. He picked a woman that is selfless. He picked a woman that is our glue.

She got a call this morning from the NICU. Levins had been struggling the past couple days. Her secretions were much higher and she was working very hard to breathe. I could see the look of pain in her face. It is something as a husband and father you never want to see. A virus of any kind can be scary for a 2 month old child. Add in the fact that she can't swallow and it gets scarier. We are probably going to move to an isolation room and hope the virus runs its course quickly. She may have to go back onto a CPAP machine. Pray for this little one.

As we flew to get ready and head to the hospital, all I could think about was how lucky I was to have Cullie. Watching her walk into the NICU and fly to Levins bedside was amazing. She immediately started talking to her and loving on her. I know Levins felt better hearing her voice and knowing that her Mama was there. It was a moment I won't ever forget. 

A person's true colors come out in the most stressful times. I knew long before we dated that she made me want to be a better person. I never imagined how strong she really is. She is my hero. Being in an unusually high amount of stress can help or kill a marriage. I believe it has made our marriage so much stronger. It has definitely showed me how important marriage is. God's plan for our lives has been crazy and sometimes overwhelming, but he has showed me how good I actually have it. I have an amazing wife and two beautiful girls. We will all be together soon.

Pray for Cullie. Pray for her strength. Pray for Levins and that this virus will run its course and she will be stronger because of it. Pray for Rett. She wants her sister home. God has a plan and we are staying the course.

Ready

I feel like we are in the "dog days of summer". What I mean by that is I feel like everything is kind of dragging along. Levins will be two months old very soon and we still don't have an idea when she will be home. We are hoping the stretching and feeding will help everything get closer. She looks so good right now. She is moving all over the place and starting to show her personality. It's all I can do not to run out the door of the NICU with her in my arms. We are ready for her to be home.

Since we found out Levins was going to be blessed with DS it has definitely changed our lives. I'll admit for the better. I know you're probably reading this and wondering how could he say that, but it's true. Life is a lot more complicated with her being in the NICU, but it has been simplified too. Our priorities have changed and life has become more enjoyable. I listen more. I enjoy talking with people and honestly wanting to hear their story. Life is all about stories and I can say it's worth listening. Levins is going to live life the way I want to live. I don't want to hold grudges or care about the size of my home. Children and adults with DS live life the Christian way.

I think it's time to tackle the abortion topic. I hope from reading this that you know that Cullie and I are Christian and come from Christian families. God is a huge part of our life and I will admit I am not the servant I need to be all the time. We all have flaws. If you think you don't, you are not being honest with yourself.

I am going to try to tackle abortion because I think our society has lost its way. The reason I write this blog is to shed light on Levins' life and save lives in the future. I can honestly say I never wished Levins to have DS. It's true. I did not pray for her to have DS. But I'll be honest and say that I never have prayed for her not to have it. I feel like that would be like me saying I was not ok with it. Levins will never be a burden to us. I will go see her everyday if possible as long as I am on this Earth. She is my daughter. I find it very hard to swallow that someone would not give a child with DS the opportunity to live. That's wrong. God makes every child in His image. DS or not they are His children. To think that someone could end a life before it has the opportunity to live and teach the world good is beyond comprehension. I will never say that this process has been easy and I know every day is going to be a new struggle. Aborting a child because he or she has a disability is sickening, selfish, and wrong. Abortion was never an option for us. We prayed and prayed for Levins. She is perfect in every way to God, Cullie, and I. Every time I look in her eyes I see peace. I see my child. I see love. I see laughter. I see pain. 

90 percent. Think about the number. 90 percent are aborted when the parents find out he or she has DS. WHAT? Who has that right to choose who lives and dies before they are given the opportunity to live. Those 90 percent of parents are selfish. I admit our struggles are going to be different than other families but not really. We will have ups and downs like every other parents. Give the child that you prayed for an opportunity to live. I really get sick thinking about Levins not being around. Her life is going to change the World. Watch and see! This child will amaze so many people. She has already amazed her Daddy from the moment I heard her heart beat. I can not wait to watch her grow. She has made me a better person. I encourage anyone thinking about joining the 90 percent to pray. Pray for your child. Pray that God will show you the joy your child will bring the world. Yes your life will change, but it will be for the better. 

I really do not know how to put abortion into words. Levins will show you why I can't put it into words. It should not be in our societies vocabulary.

Tough

I really thought that I would eventually get used to this. This morning Levins had to go to the OR to check the distance between her stomach and the blind pouch. We got up early and needed to be at the hospital by 7.

As we were driving I kept telling myself to be strong. I thought in my head it was going to be fine. Seeing her in her crib with an IV in her head about torn me out of my frame. I know it is a small procedure but still it's awful. She looked so uncomfortable. For the first time she was hungry. She couldn't eat after 2am. She looked mad. I was somewhat happy to see her mad. I always knew she had that side.

I was excited to see our nurse. Levins had her several times early on and she is one of my favorites. It's crazy seeing nurses work with her. They know more about her sometimes than we do. She answered questions to the OR nurse and it made me smile. I know Levins is taken care of.

She looked so peaceful in her cart on the way to the OR. She was finally free to roll around and throw her head back. Babies with DS tend to throw their head back and that is something we are working on. We are trying to teach her to tuck her head back down. It's going to be a long process but for that moment I was excited to see her relax.

Giving her a kiss before she was wheeled away was tough. I know it's a small procedure but that's my little girl. It is something as a Father I honestly hope I never get used to. It let me know how special she really is to me. I didn't realize how much of a routine I had fallen in. It showed me that this was my normal. I realized again that this is not normal.

I hope that someone reads this someday and realizes that I have been in your shoes. I feel your pain. I know it feels like you can't get over the hump emotionally. I can honestly say it's never going to be easy. I can tell you the moment you get to hold your angel again it will be worth it.

The news after was not bad but wasn't good either. We still have a long way to go. We have closed the gap some, but have around 5 vertebral lengths left. She is making progress. I wish I could change places with her.

I have a small side note. I know there is a new Angel watching over these precious children in the NICU. I never ask questions in the NICU. I do not want to put the medical professionals in a tough position. I do know there was a baby that was not doing well. I could tell by the way everyone was acting. I could see the stress/concern from the nurses. I also knew the nurse practitioner never left that babies side. I know alarms were going off in that child's pod. I know the NICU shut down soon after. A Chaplin was around. I didn't sleep much that night. I was thinking about my girls but also thinking about that baby and its Daddy.  When Cullie got back the next day the baby was gone. The room was cleaned and no sign of the baby. Pray for that family. I do know I pray for their pain. I know he or she is with us watching over all the other babies. I like to think Levins picked up another Angel.

Perspective

Throughout this entire process it has definitely been an up and down emotional journey. It is very hard not to be emotionally invested in every little thing that goes on. I don't sleep as well as I used to, and I know it's because my mind is thinking about our girls. Levins is under constant care. That's what she needs at this time in her life. We are not able to be with her every minute like we want to. Trusting in God and knowing he is with her all the time makes it easier to fall back asleep.

I am trying to stay positive all the time. I went to see Levins for a short trip yesterday, and it was what I needed. I needed it because she looked great and she was moving all over the place. I prayed  on the way for God to give me a sign. Not necessarily a light streaming down by any means, just a sign through Levins. She has always held my fingers in her hands, but this time it was different. It felt like she was telling me she was good. She squeezed and squeezed for a long time.

We had a couple bad days the previous week. This process is going to be hard everyday. We will be challenged daily. I look back on the past year and can honestly say I would not change a thing. It has been very stressful, but it has been worth it. Walking in her hospital room and seeing her laying fast asleep is a feeling I can't describe. Our bad days, hours, and minutes are behind us now. Those days ended when we found out we were pregnant with Levins.

I don't ever ask God why for us. I know the master plan is unfolding before our eyes. I know she will be home with us soon. It is definitely not the way any parent envisions bringing their child home, but I can tell you we will bring her home however we can. God works in crazy ways sometimes. Through this entire process he has taught me to be a better husband, father, and friend. I don't get stressed about the little things in life. I couldn't tell you who won all the baseball games last night. The fast lane on the interstate isn't what it used to be. The fast lane of life doesn't really interest me. I want to be with my girls the majority of my time. Priorities have changed. They have changed for the better.

The main reason for this blog is to save babies with DS. I hope that one day someone will read this before they make the wrong decision and not give their child a chance. I still lose sleep at night because of that. Levins is prefect in every way. She is perfect in God's eyes. She is going to grow up and will always be a beautiful person. She has taught me that the fast lane on the interstate is not always the best way. Sometimes it's better to ride behind the slower cars and enjoy life. I needed Levins to come into my life.

I wrote this story to show the ups and downs of DS. I hope to give a perspective of all the great things in her life. Soon I will try to sit down and tell everyone my true feelings on abortion. I am not ready now. It may be a while. I look at Levins and cry sometimes. I know everyone knows by now. I am sorry, but it's true. I cry because I am glad God gave me the opportunity to be her father. To be the one who will always provide for her. I cry also for the other angels that are watching over Levins. The ones that were not given the same opportunities as her. She is going to show the world how beautiful one extra chromosome can be. I apologize for the rant, but it is something that needs to be discussed in the society we live in today. Love has many chromosomes.

Finally

Today was the day that I had been cold free for long enough to go see Levins. I have been waiting on this day for a little over two weeks.

It worked out that Cullie, Rett and I got to go to Chick-Fil-A for lunch, which was awesome because it is important to spend a lot of time with Rett. She has amazed me the past couple weeks. We have spent a lot of time together since I couldn't go see Levins. It has helped our relationship and made me step up to the plate more as a Father with her. I'll admit I was always nervous when it was just she and I. Was I changing her diaper enough or is she hungry? What do I do if she cries all day? What about if she gets sick? Well, she did get sick. She is on the up hill swing of hand, foot and mouth, and she took it like a champ. Our relationship has grown so much! I have always been very proud of Rett, but we were not as close as we are now. She doesn't have a panic attack just being with me either. I even braved Cabelas with her twice! That's a big step for me. Out in the elements on my own and she was an angel every time. The hugs and kisses I get when it's just the two of us are amazing. It's funny how this journey has grown our relationship some much.

Annie picked Rett up after lunch and we were on the way. I'll admit I was so excited but super nervous. I kept thinking, "Will she remember me?" She has only been here for three weeks, and I have missed two weeks of it. I was nervous that the doctors and nurses would think I was a bad parent. It was a long ride. The walk up was long too. I had to get a new badge and finally we were on our way up.

I knew the whole time that I had not been able to see her that she was taken care of. As we walked in I watched Cullie. Every time she walks through those doors I can see her excitement. She amazes me daily! She walked right up and started talking away to Levins. Kisses everywhere! Kisses only Mama's can do. Levins was asleep, but I know she knew her Mama was there. I could see it in her body language. She moved her arms around and started to relax. Waiting two weeks to see that moment was worth it. The love between a Mother and child and the bond they have is unreal.

I'll admit, I could not wait to get my hands on Levins. I got to hold her for a long time. She sounded a little congested, which I am sure is normal with all the TPN (IV nutrients) and breast milk she is getting. She grew so much. I didn't give her a lot of kisses because I am still nervous about being sick a week ago. She is gorgeous and was so peaceful. She did get mad every once in a while because she needed more suction. Besides that, she was perfect. I rocked with her for an hour or so. I didn't want to put her down, but I'll admit I was scared to move her and my arm was asleep.

We still have a long road. Several more trips and exciting moments. Rett made a comment the other day to Cullie that I wanted to share, "Mama we are not all together because Baby Levins isn't here with us." That breaks my heart for all of my girls. It also answers a lot of questions I had before. Rett does not see Down syndrome. Rett sees Levins. She sees her baby sister. She knows Levins is not here with her and she wants her here. Down syndrome will not make their relationship. Their love for one another will. There is my favorite word again. We don't see Down syndrome. We see our daughter. We see one of the loves of our life. We see a child. We see LOVE which is Levins!