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!