One Day Closer

I tell myself every morning that we are one day closer to having our Levins home. I kind of stole that phrase from Granddaddy. Every time we have a milestone, his text back is, "One day closer to coming home." Text messaging has kept us all close and up to speed. We all talk on the phone a lot, but when you are in the NICU, texting a large group of people is the best way.


Levins has had a great couple of days. She had her first "poopies" (sorry Rett lingo), which is huge news. That means her "other half" seems to be working good. I never knew how excited I would get when I heard she pooped all over the place. It is crazy the things in life we get excited for now. Having a blow out means she was ready to EAT! She is now on a feeding system with breast milk. This is huge news! She is starting to grow and is now back to her birth weight. Seeing pictures of her with the feeding tube working was very exciting and emotion. This again is one step closer to coming home.

 

I will admit the last couple of days have been hard on me for selfish reasons. I came down with a cold on Friday. I hate a cold in general, but now it is keeping me from going to see Levins. I know it is for the best. She surely does not need a cold and all the other babies in there do not need one either. It has been tough for sure. Cullie has been great. She sends me pictures and updates all the time. I am trying to get back focused on work and other things. It has been tough because my heart pulls me to the NICU every morning, but I need to get back into a routine.

My Friday morning started off rough. Flat tire on I-85 around 6:15 AM. Not how I wanted to start my morning for sure, but there was nothing I could do. I went really lazy and used Onstar for road side assistance. It took longer that expected and I probably should have just changed it myself. I was 10 minutes late to the safety show I was going to work a booth, which is a huge deal to me. I always try to leave extra early just to make sure I am on time. Everyone understood, but the old "boss man" in me was mad at myself. The show was great! I met a lot of people and it felt good to be working again.

After lunch the second wave of employees came in. There was not as many as the group prior, but quite a few people came through. I noticed across the tent a couple ladies who also had Down syndrome. My heart got so excited! I could not wait to talk to them and see how their day was going because little did they know, they made my day. I could have talked with them for hours. I can assure you that they got all the Purell they needed!

I do not think the company who was having the safety show truly understands how amazing they are to have employed these wonderful people. Watching the other employees interact with them was unreal. Everyone watched over them. It was a bond like I have never seen before. It also showed me that Levins can do whatever she wants to do.

My biggest fear in all of this is not being here for Levins later in life. I am scared because Cullie and I are not always going to be here. Are we going to be able to defend her when she needs us to? Are we going to be able to provide for her? My Friday that started off with a cold and a flat tire answered a lot of questions. There is still good in the world, and I saw it at a safety show.

Big Day

9/15/15

One of the main things that has been missing through this process is having our girls together. Rett has struggled some not knowing where Levins is and why she isn't home. Auntie ordered a few books that explained the NICU to other siblings. Rett and I sat down a couple days ago and read the books. It did an excellent job of explaining the "TV" screens and her special bed. Rett was so excited while reading the book that she had to run and show Mama "Baby Levins" bed. We woke up the next day and dropped Rett off at pre-school and went to see Levins. We asked the nurse when we got there if it would be ok to bring Rett by to meet her sister. They got it all set up for 2pm that day.

Our good friend Brett came by during the day to see Levins. The support we are getting is unbelievable. Levins is a loved child and we could not be more humbled by all the support. Rett was coming with Annie and we were all going to eat lunch with Brett.

Rett came into the hospital lobby running like usual. This child never slows down. She amazes me everyday with how much energy she has. We ate lunch and it was time to let these two girls meet. We told Rett she could pick Levins and herself out a suprise. We picked two stuffed lambs, which is a character from the show "Doc McsStuffins." I told her that anytime she thinks about Levins to squeeze her "Lambie" and I told her Levins would do the same.

We got up to the floor and Rett got to put on her gown and we headed to see her. When she is really excited she is quiet. I know she was scared too, but she acted like a big girl. Annie was in the room holding Levins and Rett's eyes lit up immediately. She wanted to touch her hands and feet. Our little rambunctious child was so calm. Several nurses came by and talked with her. Both of Levins' doctors that day came by too. They both took the time to talk with her. I will never forget what one of the doctors said. He said, "My name is Dr. So and So but do you know what my other name is?" Rett looked puzzled but interested. He then said, "Daddy". That moment I felt like Rett knew Levins was ok. She ended up giving him a hug.

I will never forget the day they met. It makes me even more excited for the day she can come home. Later on that night, I was watching TV and Rett came running to me. She said, "Daddy call the nurse and check on Baby Levins for me." I'll admit I shed a couple tears.

Here is a video of our girls meeting for the first time:

Levins Update

The dye is still slowly creeping through her intestines and hopefully will make its way all the way out. This is good news because so far there are no obstructions in her intestines. It is taking so much time because nothing has ever gone through there and there is nothing behind it to push it along. It should to take Time.

Her stretching has gone well the past couple times. She actually slept through one time. She woke up to cough after. This is good news because she is starting to get used to it.

She has moved to a crib and they also put a swing in her room. That makes us feel good. It's not ideal having the crib here instead of home, but she looks comfortable.

We get to dress her now in onesies. I know Cullie will love being able to dress her. Everyday, I thank God that we are one day closer to bringing her home. We sure are ready!

NICU Shut Downs

We had a few struggles Sunday getting in to see Levins. Granddaddy and I went in the morning to be there when the doctors did their rounds. It's nice having someone else ask the medical questions. He knows the lingo and will tell me straight what is going on. The NICU team watches over Levins really well. He just makes me feel at ease explaining everything. We stayed until we were told a new baby was coming into our wing, which was about time for Cullie and Mimi to get there anyway.

The NICU ended up being closed for several hours. It was tough because I knew how bad Cullie wanted to get in there and see Levins. At first I was frustrated too, but then I started to think about the other baby. I knew something serious must be going on for them to shut the wing down for that long. All I could think about was how bad of a day those parents were having. It puts everything in perspective. We are very lucky. I know some people ask,  "how could you say that?" but we are. Levins needs to grow and we hope everything can be repaired. There are parents that are scared their baby won't make it through its first couple of hours of life. This whole situation we are in has opened my eyes to a whole new world. I panic now if I see a bed moved around in the unit. I always wonder where that baby was moved to or always think the worst. Every time I hear an alarm go off in another room, I panic. That is someone else's Levins. That is their life over there. Needless to say I now panic for all the babies in there.

The unit we are in is amazing. The nurses, nurse practitioners, and doctors are phenomenal. I honestly do not know how they do it everyday. I do know that every baby in there is loved. They told us early on that they cared for each baby like it was their own. At first I didn't believe that, but I was wrong. It's a family. I have seen tears, laughter, and fear in the eyes of these wonderful people. They want every baby to be home with their parents. I will never question them again. I will have friendships with several members of Levins' care team for a long time. They are all people too, very special people.

I have grown very close with one person in the unit. I'll refer to him as T. He reminds me a lot of Granddaddy. He saved Levins when she was blue. I can never thank him enough. I look forward to seeing him everyday. Levins is not in his unit, but I know he is watching over her. He will never know how much that means to me. I think he knows more about our lives in 6 days time than most people do in years. I ask that anyone reading this prays for all the families, babies, and staff in the NICU. Every time the NICU wing closes I think of another Daddy having the worst day of his life. I want to tell him it will get better and his child is in the best hands in the world.

Tickle Monster

9-12-15

I woke up in the middle of the night and could not stop thinking about Levins. I knew she was pretty well sedated after surgery, but I was still nervous. I finally woke up and it was time to shower and head in to see her. Rett was in our bed at that time which was nice. It used to be something that annoyed me a little bit because I didn't want it to become a habit. Now I can not wait to hear the door open and have her crawl in.

Auntie and I got to go see her first Saturday. Cullie and I talked about her spending time with Rett that morning. We are trying to learn how to balance our time in two places. It is tough because you can not be in two places at one time. We finally made it in to her room around 8:30 and got to see her. I'll be honest it was still really hard seeing her on the ventilator. I know it was there because they wanted to make sure she remembered to breathe, but it is not something you want to see on your child. We spent some time talking to her and making sure she knew she is loved.

Pop ended up coming by and seeing his little girl. It is amazing seeing him and Granddaddy with her. The love they have for her amazes me. Seeing grown men tear up just shows me how much they care. The doctors came by and rounded. They told us everything was looking good and she should be off the vent soon.

Auntie came back in and read with Levins. She spent several hours in there with her talking with her and making sure someone was there. It helped me relax. I ended up going in the family quiet room. It is just a big room with several comfortable recliners. I told myself when we toured the NICU that I would never be in there, but I was wrong. Exhaustion hit me and I know Levins had someone with her. I probably took a 30 minute nap and then we went to lunch.

After we came back we talked with the nurse and Levins was still on the vent. I told her earlier that day she needed to be off it before Mama came up to see her. She was almost digressing. I can't blame her since breathing was easy with the vent. She did not have to do anything. I finally decided I would talk with her like I play with Rett. We always play tickle monsters. I make monster faces and tell her the tickle monster is coming to get her. I admit my monster impression is just a crossed eyed scrunched up face but it works. I normally make a few snorting noises for effect. I walked over to her bed and snorted and told her the tickle monsters were coming to get her. Her hands immediately flew up to my face. She started to breathe over the vent. She was breathing so hard all the alarms on her machine were going off. Auntie had to come help me contain her. She was trying to rip the vent out of her mouth. It scared me to death, but she knew what tickle monsters were. She was trying to run away like Rett does. It was the greatest feeling in the world. The nurses came running over and said she is ready to be off the vent.

Cullie and Mimi came to the nursery to see her soon after that. It was very surreal giving Cullie a kiss as we walked past each other in the hallway to and from the NICU. That is our life right now. Honestly I do not think we would change a thing. I mean I don't want Levins there but if that is how it has to be, we will continue it daily.

I love looking at my phone and getting pictures of Levins with whoever is there with her. I ended up getting a great one of her eyes open. I am bias, but she is gorgeous. Her eyes are my favorite.

The evening at home was also a milestone. Rett rode her bike with training wheels by herself for the first time. I was so proud. She kept yelling, "Daddy watch me!" She rode her bike for at least an hour and a half. Ryne and Sarah our good friends stuck it out with her the whole time. Seeing Rett's face light up was unbelievable. Spending time with her is equally important during this time. I feel awful not being next to Levins every minute, but my big girl needs me too. I thank God all the time for allowing me the opportunity to know those two little girls!

Pain

I'll be honest I thought I knew what pain felt like before Levins was born. I didn't. Being a Daddy you do not want any of your family members to hurt, but I can't stop it now. That's the pain I feel right now.

I felt like we were having a great day. I knew this day was going to be tough. I tried to be the happy Kyle all day. I had it all planned out. Cullie was getting discharged today and I was going to stay with Levins and watch over her. Cullie needed to go home and see Rett. She misses her Mama and they needed some time watching shows. Mimi and Auntie were coming to see Levins and I was going to head home for the night. Annie and Pop were going to eat pizza at our house for supper. I had it all planned in my head. I even stopped by Publix to pick up some beer.

I saw a random number pop up calling my phone. I ignored it and then the same number called Cullie's phone. I answered and got a text from Mimi saying they want to take her to surgery for the button feeding system. I don't know how I thought I would feel when I knew she was going in to surgery. I thought I could handle it. I was wrong. We both lost it. We loaded up in the car and flew back to the hospital.

I will admit, I am a wreck right now. The pain is much worse that I thought it was going to be. I hurt for the physical pain Levins is in. I hurt for the emotional pain the love of my life is in. I hurt for Rett who sees us fly out of the house in tears. Being strong is next to impossible right now.

I keep praying. I keep saying Philipians 4:13 over and over in my head.

She made it out and we are waiting to see her. Her stomach is only the size of one cc of fluid. They are going to take a balloon and start stretching her stomach. There is a small leak in her stomach which means they will not be able to feed her until Monday. The surgeon also said the spacing between the stomach and esophagus is around 7 to 8 spine lengths. He said that is a large gap. Good news is there is a good piece of esophagus to attach once they get close to her stomach. He did say it's going to take time. The word time keeps coming up.

Having children can be painful. All the emotional pain from this will go away when we see her again.  I find my strength now in Levins. I never thought I could learn so much from an infant, but I was wrong. I can't wait to see those pretty eyes look up at me. I know she is wondering why in the world does my Daddy have a mustache!

Reality

Exhaustion finally hit at around 12:30 last night. Cullie and I both passed out relatively quick. It is important that Levins gets as much breast milk stored as possible, so Cullie wakes up every 3 hours to pump. Her strength through this amazes me. I heard her call the NICU around 3:00 am just to check in and see how Levins was doing. Everything was good so she went back to sleep.

I will admit I woke up this morning and realized again that everything was real. It is not the fact that I don't want to deal with it, it is the fact that I hurt for Levins. The waiting game for everything is tearing me up. I was not prepared for that at all. I tried to mentally prepare,  but I will be honest and say that I'm not sure many people could mentally prepare.

We went up to the NICU as soon as we woke up. Levins looked so peaceful. I wanted to take all the cords off of her and take her home. I then could hear the suction from in her mouth making noise. I know I can't take her home now but it still would have been nice. Updates this morning seemed to be the same as when we left the night before. Levins had a big day planned though. She had an echocardiogram, kidney ultrasound, genetic testing, stretching the esophagus for the first time, and surgery. The echo had no change. This is good and bad. Kidney ultrasound came back normal. That was exciting to hear. We are still waiting on genetic testing. We know the results, it is just a formality in diagnosing genetic abnormalities. Her first surgery did not get scheduled today. It is nice not being the emergency situation, but it still has to be done soon. Last was the first stretching exercise. I'll admit I did not do enough research on this before it happened. I went up to the NICU with Grady and the nurse went over the procedure for me. It scared me to death. She said Levins held her breath for a while, which means she was not breathing because she thought she was choking. Her O2 sats dropped pretty quick and the Doctor had to work his magic. They got her levels back up before we walked in.

It was very surreal hearing that situation. It just showed me how quickly things can change. The nurses seemed to act like it was something to be expected. Like I said I didn't do enough research on the procedure.

I am home tonight with Rett, Mimi, and Auntie (my sister). Cullie and Annie are at the hospital tonight. We are trying to balance both girls right now. Trying to make sure we do not neglect Rett during this time. She is struggling to understand the situation. She also wants to see and hold Levins. She knows she is a big sister now and does not understand why she is not home with her.

The ride home was long. I realized I am a little edgy. Someone just gave me the one finger salute and rolled down his window to yell at me. I think he was mad I didn't merge over in front of an 18 wheeler. I will admit I am not too sure he will be pulling that stunt again. He got this stressed out Daddy blow up on him. His little Honda Accord accelerated pretty quickly when I let him know what I thought about his shenanigans. I honestly wouldn't have drug him out of his car, but I felt like he needed to know I was having a rough day.

I did a lot of praying on the way home. I prayed Levins would keep up her fighting. I prayed Cullie and Annie would have a good night with her. I prayed Rett and I would have a good night. Rett and Auntie met me in the driveway. Rett gave me the biggest bear hug a 2 year old could give. It was honestly the best hug I have ever had. I needed to see her just as much as she needed to see me.

Tomorrow I am going to wake up and thank God that we are still fighting. This dream is a reality now and we are going to tackle it. We are taking it one hour at a time. Pray for us tomorrow. Cullie will be discharged tomorrow. It is going to be tough because she will not want to leave Levins. I do know that Rett will be ready to give her the best hug she has ever gotten. The only one left to get a hug will be Levins and it will be soon.

Our Princess

The day has finally come when we get to meet our Princess Levins. Cullie is a champ. She pushed twice and Levins made her arrival at 12:45 PM. She weighed 6 lb. and 10.1 oz. and is 18 1/2 inches tall.

I will never forget the moment I first laid my eyes on her. She was blue, almost purple. She honestly did not look like she was breathing. I did notice immediately that our Princess was blessed with an extra chromosome. That moment taught me a huge lesson. It taught me that the chromosome did not matter; all that mattered was I wanted my daughter to scream and let me know she was breathing. It felt like the longest 45 seconds of my life. I finally heard her gasp for air and make a few baby noises. It was a surreal moment getting called over to see her up close for the first time. She is exactly what I dreamed she would be. She is gorgeous and she is ours. Cullie got to hold her before they took her to NICU. The Ped's team is awesome. They let her lay in her cart in the hallway so our family could see her. I don't think they will every know how much that meant to us.

They took her to NICU and about an hour later came back with results. She has two blind ends to her esophagus and to her stomach. We were told of the babies with this condition, very few have this issue. It takes a lot more time to stretch the esophagus so it can meet the stomach. We originally had in our heads that she would be in the NICU for around a month, but now we are planning months. She needs to grow and the surgeons will work daily on helping to make each end stretch. She will require a button feeding system in her stomach to feed her until the major surgery happens.

It is going to be a hard couple of months. I honestly do not think we have any idea what we are getting into. I do know that Levins is amazing. She has amazed me in the few hours I have known her. She is going to show the world what kind of fighter she is. I know we have several people praying for her, but it never hurts to ask for more prayer. Please pray for Levins, Rett, Cullie, myself and our families during the next couple months. I believe God has a plan for our Family and I know it is special.

7th Inning Stretch

I'll admit it has been awhile since I sat down to update everyone. It is not because we do not have much going on but the fact that I really do not know how to put it all into words. Levins is coming and she is coming FAST. We had several doctors appointments in the past couple weeks. What we have really learned is she is going to come early. Early as in we will induce at 37 weeks. The amniotic fluid is still high, and we do not want Cullie to go into labor outside of the hospital. A lot of things can happen when the fluid level is high, and we are not going to take any chances.

Today was kind of a surreal day. I felt like I was on an emotional roller coaster all day. We started at the OB office and had a surprise ultrasound. It was just to make sure Levins was head down and ready to come down the pipeline. I'll admit I was excited to see her on the screen. I can see her hands and feet push Cullie's stomach around, but it is nice to see that face. For the first time I can honestly say I was ready to see her immediately. If the doctor said we are going to delivery, I was ready. The excitement I had was unreal. I left the appointment feeling great.

Next, we went to tour the NICU and meet the doctors from the unit. We ended up having our tour first which was good. It was not what I expected at all. They have 4 wings and several different screened areas for each baby. I'll admit my excitement went to shear panic. Panic because I know she will be there. I know she is in good hands but as a Daddy it is not something you want. We were walking through an area and I saw a Dad that was around my age. He was in full scrubs and I assume he was in them because they just had a c-section, but I am not sure. Every Man knows the head bob of acknowledgement. I made eye contact and we both made the head bob. It was a situation of both of us understanding what the other was getting into. I could see the panic and excitement in his eyes. I know he could see the same in mine. That moment was important for my day. It showed me that I could keep it together. I know he was hurting inside for his child, but he was strong.

I pray more than I ever have. Not because I didn't believe in God before but because I have a lot to talk about. I pray he will give me strength. I pray he will take care of Cullie. Child birth in general is crazy and painful. When you add in the unknown issues we have, it takes it to another stress level. I pray for Rett. I pray that she understands. I know she won't understand the situation but that she understands she is loved and will have a lot of responsibilities later in life with Levins. I pray for the fighter, Levins. I pray that she will show us the same strength she has this entire pregnancy. I pray for my family as a whole.

DS is something that is not going to make my daughter. She is going to make DS. I guess what I mean by that is she is going to have the help and ability to live a normal life. Some people I know think I am crazy by saying that, but she will. I am not saying that it will be easy by any means. We have never really done anything in life the easy way. All I want is the opportunity to be her Prince. Rett loves when we dance around in the kitchen. I keep telling myself Levins will be with us dancing soon. I say that because I know she will. I know she will running away from me when "tickle monsters" are coming.