Christmas

Christmas was very strange this year. It feels like it just came out of nowhere. I was busy preparing for Christmas for much of November and all of December when I wasn't planning for Caleb's birthday party. (Still can't believe he is five!) Anyway, Caleb really didn't have a very good idea of what he wanted this year so we got what we knew he wanted and then we just sort of picked up a couple of other things that we thought he would like. I felt bad because I became aware of something that he would like much more on Christmas Eve but there was no way for me to get anything that late. I just felt like I didn't want this Christmas to be terrible for him right after his brother leaving us. I didn't want him to open things and not like them. I know, ridiculous! We make a big deal in our house about what Christmas really means so I know it was silly for me to think about something as meaningless as gifts, but you know, you always want to do the best for your children. Well, we woke Caleb up Christmas morning like usual (he never wakes up on his own on Christmas, I think he may start to in the next year or two) and he was so excited. He loved everything and we had a wonderful morning together. Caleb is so sweet...as soon as he saw his stocking, he looked back at Levi's still hanging from the fireplace and he said "Levi didn't get anything". He then proceeded to share half of his stocking stuff with Levi. Such a sweet boy. We went to church for the Christmas service and we went to the cemetery for a little while and then we went to my mom's house. We also went to Michael's mom's later that night. We had spent Christmas Eve with Michael's dad. It was very hard to do the things that we normally do every year with our families. We didn't even want to go do anything with the rest of the family but we managed to drag each other out to spend time with everyone because we didn't want Caleb to miss out. We could not take away his Christmas traditions just because it is difficult for us. It is so hard because no one really understands just how painful the day was for us. People didn't respect our wishes while we were out and that was very frustrating, but we dealt with everything and tried to make the best of it. Overall, I can say that the day was ok. Caleb enjoyed everything and that is really what makes everything worth it to us.

Thank you

I just wanted to take a minute to thank each and every one of you. Thank you for your prayers. Thank you for visiting us at the hospital and bringing us food. Thank you for each gift to us and to Caleb. We appreciate what each and every one of you has done for us. We keep trying to find the time to write thank you cards to everyone but it just hasn't happened and there is no way for us to write that many cards so I would just like to say, every single prayers has been (and continues to be) greatly appreciated. Every penny that has been donated has helped tremendously. Every second that was spent thinking about us, praying for us, and visiting with us has meant so much to us. I really do not know how we could have gotten through our time in the hospital without everyone's amazing support. So many are still praying for us and so much of the time we are just so overwhelmed with grief and I know that there is no way we can do this without the prayers and support so thank you so much for everything that you have done and continue to do! You are amazing and such a blessing to our family! We love each and every one of you!

-The Williams Family

A Few Pictures

Family Pictures

We had pictures made today for the first time since Levi left us. I wanted to do this before Christmas but I was a little hesitant to do them without Levi. Family pictures are one of the things that will never feel right to me again but I also want to get them taken. I grabbed a few things of Levi's to take with us so that we could include him somehow. We brought a balloon, his first stuffed animal that was brought to the hospital for him, and a picture of him. We also brought his blanket that we held him with (and also buried half of it with him) but didn't use that this time. I can't wait to see what Natalie did with everything. I know that family pictures will always be hard for us from here until forever but I am thankful for a sweet friend who is so great at working with us through all of this! Thank you, Sez Me Photography!

Caleb is 5

My sweet boy is 5 today! He is growing up so fast. I would love to keep him little, but I really enjoy watching him grow and learn every day. He is such a sweet, lovable boy! I feel like I should talk about his personality a little and share some of my favorite things about him...

Caleb is a strong-willed, stubborn, cuddly, intelligent boy. He can argue for hours without plans of stopping until he gets his way. He likes to sing and dance although I don't know how good he will be at that since Michael and I are not very talented singers. He can be a perfectionist sometimes and gets discouraged when he doesn't do something just so. I love that little boy more than I could ever express!

Some of my favorite things about him:
-his chubby cheeks (they are just so kissable!)
-his facial expressions (he makes so many faces that remind me of Michael)
-his heart (he can be ugly just like any child, but he definately has his moments and can be incredibly sweet)
-his stubbornness (this is part of his personality and I love him for it, I believe it will come in handy in his carreer one day)
-his love of music (I love watching him sing and dance, he is super cute and has some pretty awesome dance moves)

There is so much more to my Caleb but here is just a little of what makes him, him

Levi has been in heaven for 7 weeks today. He left us around 10:30 that Friday night and now has been in heaven as long as we had him here. That night is still so fresh. I remember the relief I felt for him as soon as I knew he was in heaven and at the same time, the panic I felt inside me for us left behind. My sweet Caleb. I hurt so much for him. He will never have a life here on earth with his brother. He loves him so much. He talks about him so much. I wanted Levi here with us so much and for so many reasons. The two reasons that meant the most to me, though, were for God's glory and for Caleb's future with him. The doctors said that it would have to be a miracle for him to live. They said it would have to be a miracle from God for him to even come off of ECMO. He came off ECMO much to everyone's surprise. The nurses told us they were all amazed and that no part of them thought he would come off ECMO. Our God is greater than anything and what a miracle He performed in little Levi. I am getting a little off topic...back to Caleb. Caleb has talked about all of the things he wanted to do with Levi. Even he, at four years old, had dreams about his life with his baby brother. I hate that he can't have that. He is supposed to be able to teach him how to get in trouble and how to drive me crazy with gross things like buggers and passing gas. He is supposed to teach him what it means to be loved in a way that only a brother can love. He is supposed to teach him how to pick flowers for me. There are so many things that are missing not only from mine and Michael's lives, but from Caleb's as well. I can take what this life throws at me, but I can't take things happening to my babies. I do not do well with stuff hurting my child. I always think, you can mess with me, but don't even think about messing with my kid! What parent doesn't feel that way? I started this post thinking about how it hurts that Levi has been away from us for so long and that this is only the beginning, but I always end up thinking about Caleb. I pray for him so much. I only want a life filled with joy for him and so we go on and we pray for strength (which God always provides, although some moments are better than others) and we do our best to give Caleb everything he needs while also trying to help him understand something that children should never have to understand. He is just too young for all of this. His life will never be the same and I hope that now, as we are going through this life where Levi has spent 50 days in heaven, he will always know that we love him and Levi more than he can imagine. We will always love Levi even when he is not here, but we will also always do our jobs and love Caleb and take care of him. He is such a blessing in our lives and I am so thankful for him every day. Despite everything, we are extremely blessed!

Today Levi would have been three months old. I should be taking his pictures and getting them out to all of our family like we did with Caleb. No parent should ever lose a child. No parent should ever have to go without being able to bring their baby home from the hospital or without being able to celebrate with each new month of life. What I hate so much is that Caleb has to go through all of this too. Some days he seems fine and other days he doesn't. He sees babies out places and he says he wishes he had a baby brother and he wishes that baby was his brother. He knows that he still has a brother, but he wants his to be here. I hate this for him. We will be celebrating Caleb's fifth birthday in just a couple of weeks and I hate that we have to do that without Levi in our arms. I am so thankful for all of the time we have had with Caleb and for the seven weeks we had with Levi, but it is never enough. I am journaling my feelings which is emotional and sometimes people misinterpret those feelings. We have not lost our joy. We can have joy every day because we know the truth and we know what the future holds for us, but we can also grieve and have joy at the same time. While we are here though, we are going to do our best to give Caleb exactly what he needs and raise him the way we believe God wants us to. We are going to try to show love to others and fulfill the purposes that God has given us. Our family journey became a different kind of journey with much more pain when Levi left us, but it is part of our journey now and we can not avoid it. We are forced to live the rest of our lives here without Levi and that is something that will never go away, there will not be another day on this Earth that we get to spend with Levi, but we will walk through this journey as a family, clinging to God, and we will keep our hope all of our days. Nothing will change, we will serve the LORD.

So many days I feel like I have been punched in the stomach and there is this empty place left there. I can only describe it as a hole in the pit of my stomach that won't go away. It is absolutely horrible. There is nothing that can fill this void. So many ask if we will have more children, but more children could not fill it. We have so much love for Caleb and we are so thankful for him and at the same time, we have had a huge part of our hearts ripped away. We miss Levi so much. We are so sad about all of the things we will never get to do with him on this earth. While we know that this is all temporary and it will be such a short time compared to eternity, we absolutely cannot understand that. We are human and I don't believe it is humanly possible to comprehend how short our time here really is. It feels like so long.

I do want people to know that we are not just walking around depressed and without hope. We do have hope. We know that one day God will set all things straight and everything will be perfect. I have had a bad day and have had a lot of stuff going through my head. When I feel this way, all I can do it talk to God. I can talk to Him about what I feel and He knows what I feel. I don't have to try and find the words to explain like I do to my friends, He just knows and He always gets me through it. One way or another, He helps me through. I desire to continue growing in my faith and in my relationship with the Lord. I will forever cling to Him through this and I will try my best to do what I am supposed to do in my time here.

Thankful for Blessings

I am sorry, I have been a bad blogger. I really haven't had anything I felt was worth sharing, I suppose. Things have been a little less exciting around here the last week or so. Since I can't think of anything to write about, I thought I should write a little of what I am thankful for. I am thankful for so much in my life. Wow, God has blessed us with so much. I am so thankful for Jesus and the promises from God. Because God gave his son for all of us, we get to spend eternity in heaven. That is absolutely amazing. I am so thankful that God has created a perfect place for us to spend eternity. A place where we will be reunited with our sweet babies who are already there and our loved ones. I am so thankful that He is taking care of my babies until I get there and I am thankful that time is not the same in heaven as it is here (at least that is what I believe) and our babies are not waiting around for us. I am so thankful for my wonderful husband. God brought us together many years ago and we have been on an amazing journey together ever since. We have had lots of ups and downs but we always get through it all together. Together, we have grown so much in our walk with our Father. We have really grown so much in the last three years or so, but especially in the last year. I am so thankful that God has given me a man who is a hard worker, an amazing daddy, a loving, respectful husband, and a devout Christian. He is not as outspoken as I am about things, but he definitely surprises me all of the time with what is going on in his head. I am so thankful for a God who knows exactly what I need in a husband. I am so thankful for Caleb. I love that boy so much. I appreciate every day with him that God has given me. We are not guaranteed a single minute with our loved ones so I am so thankful that I have had almost 5 years with him so far and I pray that God will bless me with so many more. I am thankful for Caleb's stubborn personality. He is very strong-willed and can be extremely difficult and I love that about him. I don't always enjoy the struggle that comes with that, but I love him for who he is and everything about his personality. He amazes me every day with his intelligence. I am so thankful for my sweet boy who is perfect to me in every way. I am so thankful for the seven weeks we had with Levi. I have read lots of stories now that I am connected with so many mothers who have lost their little ones and so many who have had babies with CDH and some did not even have a full day with their "cherubs". I am incredibly thankful for the time we had with him despite the fact that it does not feel like anywhere near enough. That sweet boy has forever changed our lives and I am thankful for that. God is still working on us and many others through Levi and I think that is amazing. I am getting off track a little so I will try to pull it back together and just list a couple more things. I am thankful for our family, our church, our Sunday school class, our friends, our neighbors, our prayer group, our house, our cars, Michael's job, all of our needs being met by God, our military and our freedom. I have tons more that I am thankful for but I think the biggest thing is simply love. God's amazing love that I could never comprehend and the love of family and friends.

This morning was family dedication (or baby dedication) at our church. I have looked forward to that day since I first got pregnant with Levi. I looked forward to it even more after we discovered his CDH because I knew it would be such an amazing miracle that we got to that point. Everyone just has a baby and then they do their dedication and that is all. Levi would have had to get through some incredibly difficult circumstances to get to that point so I just pictured it being this amazing Sunday morning with surrounded by so many who have prayed for Levi praising God for the mighty work He had done. So, I was a little emotional. Actually, I was probably more of a train wreck. A friend of ours, whose wife has just given birth about four weeks ago, was there because they were doing baby dedication and he came up to me to give me a hug and when he told me it was baby dedication I just lost it. I went to the bathroom and cried for a long time. I didn't realize it was this week. The reminder was in last weeks listening guide, but I didn't really pay any attention to it. When I pulled myself together enough to walk back into the sanctuary, baby dedication was wrapping up. Then we started worship and all of the moms and dads were walking back in with their babies from the back to find their seats. Seeing all of those moms who had been waddling around the church with me during my pregnancy was so upsetting. I'm not sure why. Maybe just seeing several of them at a time with all of their healthy babies? I really don't know. I am very happy for all of those families but I miss my Levi so much. There are so many things I will never get to do with him on this Earth. I cried all through worship and on and off for so much of the day. Every day there is some time where I am crying. Usually it is at night when I am just sitting in the bed and can't sleep and lots of times it just comes and goes randomly throughout the day. Am I depressed? No. I am simply grieving. Unfortunately, there is no way to go around this. We just have to walk through this storm. I have heard from many parents who have lost children that the pain never goes away, but instead you learn to deal with it in different ways. I believe this is true. The reality of it all is just too much. But, here is what I do know...we will get through this. We will cling to each other as a family and cling to God and we will get through it. I know that this life is so short, although it seems like forever, it will be over before we know it and then we will spend eternity with our Savior. Sometimes, it is all I can do to go sit in the quiet and talk to God and beg Him to drag me a little further through everything. Am I strong? No, but God gives me the strength to get through everything one day, one hour, one minute at a time. I CAN do all things, through CHRIST who gives me strength!

Everytime I hear this song, it is exactly how I feel so I wanted to share it on here

Ask Me Anything

Every day I am having my friends ask me lots of different questions about our life. Everyone is nervous to ask me anything about Levi because they are afraid of upsetting me or getting in our "business". Well, we have shared Levi's life with so many and have in return been blessed with meeting so many wonderful people and received so many prayers! I don't think there are too many things I am not comfortable sharing about our life at this point. So, I am putting together a blog post just for answering all of those questions that everyone wants to ask. If you have a question, feel free to send it to me in an email or facebook message. Don't worry though, I will not share on here who asked what and if it is too personal or just too much for me to talk about, I will simply not answer. I will not be angry about any of the questions or think too much about them. I simply want to put this together so that people do not feel so awkward around me not knowing what they can talk about or ask.

I am not sure when this post will come out yet, just depends on how many questions there are.

Levi Bracelets Are In

They are here! We put ours on and I don't think we will ever take them off. We have started getting them out to everyone and we are so excited to see lots of people wearing them around!

Lots of bracelets!

Disney On Ice

This morning we took Caleb downtown for Disney On Ice thanks to a sweet friend who sent us some tickets. I think he loved it. We have never been to anything like this before. I thought it was going to be really boring but it was actually alright. Doesn't really matter, we both enjoy taking Caleb to things that are boring for us anyway because it is always fun and so worth it to see his face light up when he is having a good time. I guess it was called Mickey and Minnie's Magical Adventure or something like that. Some of the costumes looked so good. There was lots of music and I think Caleb had lots of fun.

Halloween

Not much to say about Halloween. We went to Levi's grave for a while first and then headed to the church for trunk-or-treating. We were there for maybe 45 minutes and then headed back to the neighborhood to trick-or-treat with my family. Caleb had so much fun. He was running like crazy door to door. He hadn't even eaten any candy and it was like he had drank about five redbulls. We asked if he was having fun and before we could even get the question out he screamed, "YEAHHH!!!" so that was good. I have never seen him run so fast. I couldn't help but smile about how much fun he was having. I love that sweet boy so much!

Caleb actually took this picture

Levi's Superman Pumpkin

He thought this was awesome

Cute boy

Running from the door with the boys. Trying to get to more candy as fast as possible

Another Fall Festival

We took Caleb to another fall festival. This was an awesome one, but I do think they could have given out more candy (mostly because I like to eat a bunch of his candy every year). They had tons of games for the kids, a couple of rides, a bouncy house, pony rides, a cake walk, loud music, motorcycle/bike trick shows, and more. It was pretty awesome. Caleb said his favorite part was winning snowballs in the cake walk (although he does not like snowballs). That boy is so funny.

TP Toss

Side view of the mohawk. Everyone had something to say about how awesome it looked

Arm wrestling. So funny. When Caleb beat him he said,

"See, I told you I was strong!"

This was my favorite booth

Face painting

The guy working the cake walk told them that if they danced they were more likely to win so Caleb

danced around (and he won!)

Fishing. This group does this fishing game every year and as you can tell from the picture, they love it! I think they just love seeing the kids faces. When Caleb got his goody bag of stuff, he turned around with the sweetest face full of excitement. He was so excited and proud.

He is such a cutie pie!

Pony rides

I think Caleb had a great time. I am so glad we have these oppertunities in our community. I am so glad God is giving us the strength to get out and do these things for Caleb and continue making memories with him. We are at the very beginning of this awful journey called grief and somedays are easier than others but somedays are harder than others. This was a really hard day. It was a really hard morning at church. We have been praising the Lord all through this storm and we will continue praising Him because He is good. His plan is good. I know that; we know that. I get emotional in my worship because I know God has all the power. I know He did not make a mistake giving us Levi or taking him away. It is so hard to know that He was/is fully able to heal Levi and chose not to but I know that it is good and this is a part of something bigger than us. I praise the Lord because He is good and I am so thankful for heaven and God's promises. I know He has created a perfect place and Levi is there and we will see him again. My heart cannot wait! All glory and honor and praise to You, my Savior!

Pumpkin Carving

Tonight we carved pumpkins. We let Caleb pick out a design from a book and we made one with Levi's name on it. We also got a small pumpkin to take to Levi's grave. Here are some pictures.

Levi Bracelets

We are ordering silicone bracelets in Levi's memory. They are going to be light blue and have Levi's verse on them. I think it is going to take about 3 weeks for them to come in. I can't wait to see them, I do not think I will ever take mine off. We are ordering extra for everyone we know who has asked for one. They are $3 and come in adult or youth size. If anyone would like one as well, let me know. You can paypal the money to beccadt33@yahoo.com and make sure to include your address in the message if you are not local along with how many you want and the size.

I got the idea for these bracelets from a sweet friend who lost her baby boy just before Levi was born. She had 53 days with her Tate, only 3 days more than we had with our Levi. If anyone wants to read Tate's story her blog is http://babytategranted53.blogspot.com/.

Fall Festival Number One

Last night we went to the fall festival at Caleb's school (it is also a church). Man, it is just so hard to go out and do all of these things without Levi. Everywhere we go, I think about him. I wish I was carrying him around with us and trying to time things right around his nursing schedule. I wish I was trying to help Caleb tie his shoes while holding Levi. It is weird how you just want to do the normal things that get on most peoples nerves when you lose a child. We will probably go to one or two more of these things before Halloween. I do want to go; I really enjoy watching Caleb have a good time, I just hate that our family is so broken.

Some friends from our Sunday School class were at the festival too. Their kids are Cohen and Harper. We tried to get a picture of the kids together but we couldn't get them to sit still long enough. Here is the best one...

 Caleb with his teacher from last year. We love Mrs. P!

Punk rock Caleb :)  What a cute boy! I love him so much!

Love the facial expressions!

We really had a good night. It is ok that we think of Levi everywhere we go and everything we do. We love and miss him so much and we like to think about him a lot. It is just that people think it is not ok to talk about him. I like for people to ask questions about him. It makes me feel like they care and it gives me a chance to talk about him (after all, what mom doesn't love to talk about her kids?). I think the kids had fun going trunk to trunk for candy and just being with each other. We even waited in the ridiculously long line for them to go down the big race car slide once and we ate Chick-fil-a after which gave the kids even more time to play. It was good to talk with our friends for awhile, especially since we have been so cooped up and going crazy.

Carnival Night

I will start by saying that this post is probably going to be all over the place.

We took Caleb to the carnival our city has usually twice every year. We are trying to be able to take him to do all of the normal things we would usually do with him and get him back to his normal routine as much as possible. I think we are going to start grief counseling sometime in the next week or two. We are going to go to a place that has counselors who are trained to work with children through play, art, etc. to make sure that Caleb gets what he needs. He has been upset and doesn't know how to express this so I want him to know that we are always here for him and he can tell us whatever he is feeling and that it is ok.

How I am feeling today...well, of course, I miss my sweet boy. I wish I could have taken him to the carnival tonight. I know I would have had him strapped on the front of me in one of the many baby carriers I purchased during my pregnancy and we would have been keeping each other warm. Everything we do is a constant reminder of the part of our family that is missing, but I do know that everything is going to be ok. I still know that God's plan is good. That has not changed simply because things have happened that I wish I could change. I will remain faithful and say, Blessed is the name of the LORD.

Back to the carnival. Two of my sisters were there with their husbands and each brought one child with them. My mom, her husband, and my little brother were there. My friend, Laura also came and brought her daughter. We had a good time. The kids rode pretty much everything. My goodness, they are so stinkin cute!

They tried to win goldfish...no luck. Darn! (can you hear the sarcasm?)

My favorite part of the night was probably watching them all eat goodies...Funnel cakes, cotton candy, and of course...deep fried snickers! Yummy!

Dancing after the snack. Ha ha! So cute!

It feels like people just want me to get over losing Levi already. I feel like it will only get worse with time, though. Everything reminds me of him. I have had so many plans for when he came home. I have had so many plans for while he was still in the hospital. I was going to dress the boys up as pirates or super heroes or something and make a special costume for Levi that we could get on him in his little bed. I was planning on doing Halloween at the hospital and I was ok with it. So many people kept saying they "wish they could go home already" while we were at the hospital. I was saying "I just want to stay as long as he needs to get better." I am so sad because so many of my dreams have been taken away from me. I was going to get new stockings for Christmas so that Levi could have a matching one. I will probably still do this because I can't stand for him to not be a part of our holidays, but it will not be the same. I never got to show him his room that I worked so hard on. Almost everything in there was customized for him or made by myself or friends or family. He was so loved even before he was born. He is still so loved by us. This is forever. Forever a piece of my family will be missing. I carried that sweet boy for a whopping 42 weeks! So many of my friends were complaining by 34 weeks that they were "so ready" to not be pregnant anymore. I was so thankful for each day and I told Levi he could take as long as he needed. Because I enjoy being huge and uncomfortable? No, but because I love him so much and was so thankful to have him and feel his little kicks and hiccups. I don't know what to do now. I don't think I can ever take his room apart. I don't know that I could ever move from this house even though I never got to bring him here. I am so thankful for the 50 days I had with him, but I wish I could have more. I wish I could have nursed him and carried him everywhere with me. I wish I could stay up all night with him and just love on him. We have said many times before we got pregnant with Levi that we wanted at least 3 children, but how can I have more? How can I have another and that baby grow older than Levi? Forget how stressed out and nervous I would be during the pregnancy, I don't know how I could have another and do all the things I dreamed of with Levi with someone else. I have a friend who just had a baby and I want to go see her. I thought it would be nice to hold her baby since I cannot hold mine, but I think it would just make me sad and long to hold mine that much more because that baby would not be Levi. Oh, how I wish this didn't have to last my entire life on Earth, but it does.

I really just want people to be ok with the fact that I will be missing my baby for the rest of my life. I want people to understand that this will never go away and to just be ok with it. I want people to understand that no matter what is going on in my head, that I will always take care of Caleb and give him the love and attention he needs because he is just as important to me as Levi. And I want people to remember my Levi. He is such a huge part of my heart and will always be so I will not just forget him and get over losing him. I will probably still break down 20 years from now. No one has to have the "right thing" to say. It is fine, because there is nothing to say. Just love us and pray for us. Just show us that you care and that you remember Levi with us. I might want to talk about him, not because I want to make anyone else sad, but because I miss him and I need to talk about him sometimes.

Today was our Celebration of Levi's life. The service was absolutely perfect. Well, as perfect as something like this could be. Our pastor did a great job and I really felt like it was a celebration of Levi and the impact his short life on Earth has had on all of us. I felt like it was a celebration for his homecoming. I am so sad because I miss that sweet boy so badly. I am so sad because of all of the things I never got to do with him and will never be able to do. I am so happy though, that he is in heaven and will never have to experience the suffering that we are going through right now. I am so happy that he is with Jesus who loves him even more than we do (although I cannot understand how that is even possible). I am so overwhelmed with this journey through grief that we are at the very beginning of. I wish we did not have to do this, but we have no choice. We just have to go with it and cling to each other as a family and cling to our Father along the way. I do know that everything is going to be ok and we will get through this. It is so hard to understand that this is a short time, because all we know is this life. But, when we get to heaven it will be forever and our time on Earth will have been nothing in comparison to eternity with Jesus and all of the ones we love. I know that Levi is fine in heaven. I know that he is loved and it will be no time at all to him before we are there with him. I know he has two other siblings there with him and I wonder what they are all doing there while waiting for us. I can't wait to get there and scoop them all up and love on them. But right now we have to stay here. We have to keep going and stay together. We will forever stay faithful to the Lord and forever show Caleb how much we love him. I have no idea what to do now. I have no idea what is right in this process. To put it bluntly, this sucks. I do know that even though this is absolutely horrible for us all, we will be ok and it is all temporary. I hope that our Levi will never be forgotten and that he has changed many people's lives. I know that he has had an impact on so many already and as hard as it is to say, if just one person comes to know Jesus through us and our Levi, he has done something amazing with his time here. That is more important that him being here. I hate it, but I have to admit that. It has been a long day and I am probably rambling at this point, but I really want to try and keep going with this blog because it is not just about Levi (despite the fact that it has been all about him for the most part), it is about our family and now that includes the journey through grief and losing our sweet baby.

Day 48

Today was a really bad day. Sats were bad all morning and never got to a stable place, just bouncing around a lot. Dr. A came up a little while after we got here to try and figure out what to do. We increased Levi's blood pressure medicine and pain medicine. They did another echo and head ultrasound today and the cardiologist is saying that the heart condition may be more than just the coarctation. He said the left side is much smaller than the right side (which we knew) but he thinks it would require a more invasive surgery than just the coarctation surgery. He said the same thing every doctor we see says: there are a lot of things stacked up against Levi and is this just too much for him to survive. I am trying not to get discouraged but we are at a really bad place. He is just not doing good. I was prepared for things when he was doing so bad on ECMO and we knew there wasn't much time left, but then God turned it around out of nowhere. I am not prepared for things to be this bad now. I want it all better. We are supposed to be doing good now and ready for surgery. I don't know what too much is for Levi but I am praying that God will help him tonight and we don't have to get to that "too much" point. Right now, I know we are not far from it and something has to change. I can't sit by and watch my child be miserable so I am just hoping and praying that God will turn things around for the better again. Surely He wouldn't get us off ECMO and get us this far just for everything to be over. Please just pray for Levi. Please pray for us all. We need God to guide us and tell us what to do. We need God to comfort Levi and make him so strong and we need Him to heal Levi. We need Levi at a stable place. Please, pray harder than ever right now and more than ever. We really want to bring our little boy home, but I think even more we want to see everyone say "Wow!" when Levi gets better. I want them to have to give God the credit and say that Levi is a miracle baby from God.

Day 47

Today was a pretty uneventful day which is not really a bad thing in the NICU. We didn't really change much. Last night they turned the rate on the vent down from 76 to 70 and it stayed there all day today. Levi's last three gases before we left were good but there was a doctor there who isn't there very often so she said not to wean on the vent at all. Hopefully his gases will stay good through the night and we will be able to wean on the rate tomorrow some. His oxygen that he is getting from the machine was down from 100% to 92% so that is better but we have a long way to go to get that down to 60%. At this point we will not be having surgery by Friday unless he just starts doing a lot more tomorrow and gets his vent settings way down (which I will not say definitely will not happen since everything turned around so quickly before coming off ECMO). As soon as I have a definite date for surgery, I will let everyone know. It is just going to depend on him and how fast he can get down on the vent. He was still getting cranky some today and dropping his sats if he got too mad, but I think he was a little more comfortable than yesterday and recovering more quickly. His x-ray looked about the same today but not quite as good as one from a few days ago. His breath sounds were good. So, right now we need to be praying for low Co2 and for high sats. We really need him to be oxygenating much better.

I need to be taking more pictures of people when they come to visit Levi. If you come, please remind me. Tonight Mrs. Micheal visited so I told her she had to go on the blog.

Day 46

This morning Levi's overnight nurse called to let us know that he had a bad night. Things could have been worse, but he dropped his sats pretty low and his Co2 was not great on some of his gases. We got to the hospital and talked with her about everything. They gave him some medicine to keep his blood pressure under control and that seemed to help him. They are also trying to keep him pretty sedated so that he stays calm. His sats are better when he is more relaxed. They started dialysis back at about 6:30 PM. He had been getting out plenty of urine, but Dr. A thinks it would be best just to stay on top of the fluid and we agree. He has done so much better when he was more dry and so even though he was getting a good bit out, he didn't pee for almost a whole day before he started back and gained some fluid that night. We haven't talked about how long we will do dialysis this time, so I will update when we come off probably. Later in the day, Levi had three good gases in a row so they went down a little on the rate on the vent. His next gas after the change was still good so I am hoping that will stay good and we can get down to the settings we need them on to be ready for surgery. So they changed the way the breathing tube is taped to Levi today. They took the tape off of him and replaced it with a plastic thingy(I forgot what it was called) that will give his cheeks and lip some time to air out because he has developed a yeasty rash from being covered for the past 6 weeks. He looks so pitiful, poor baby; his cheeks are just so red.

No More ECMO!

When we got to the hospital this morning we were anxious to talk with Dr. A and see what the plan was and if we were ready to come off ECMO. The nurse told us that he had come around earlier and he wanted to give him a few more hours and take him off sometime later in the day. We waited around all day and finally the surgical cart rolled in around 4:30. We talked with the surgeon first and made sure we were all on the same page with everything. We decided to put the dialysis catheter in while taking the ECMO cannulas out just in case we needed to go back on dialysis. It is better to do it all at once since it is a surgery and we can avoid having to go down to the OR later if we did need dialysis and hadn't placed the catheter. They came out around 5:30 and said everything went well and that they were cleaning up and we could go back in a few minutes. A little while later we went back to be with him and he was doing good. His sats were down a little but were coming back up. He was knocked out! I was glad too because I just wanted him to rest. He stayed asleep the rest of the night and was asleep when we left at 10. I am hoping that he will rest well through the night and for the next few days while he adjusts to all of the changes. They did a gas after we were off and it wasn't very good so they went up a little on the vent. They gave him a drug to paralyze him during the surgery so Dr. A said he thought this was preventing him from being able to do the work and get rid of the Co2. His next two gases were better so we are praying that they will just stay good and we will be able to come back down on the vent a little.

The plan now is to see how Levi can do over the next few days and if we can wean a little on the vent then Dr. A wants to do his surgery Thursday or Friday. This all depends on if he is ready. So, please be praying for good gases, good sats, and for Levi to be able to go down on the vent. God is so good! He is really working a miracle with Levi before our eyes! I am telling you, last week no one expected Levi to get any better. I could see it on the nurses' faces and hear it in their voices and now we are off ECMO! PRAISE THE LORD!  We still have a long way to go, but this is a huge hurtle we have just passed. Keep praying! Keep praising God for ALL of our blessings, not only with Levi! I am so happy that you are all supporting us and following us on this journey!

A little swollen after the surgery

No more ECMO!

More space! Yay!

More Progress (Day 44)

It is absolutely amazing what has happened in the last couple of days! God is really making Levi a sweet miracle! We continued weaning Levi on everything today and at about 12:45 PM, they started to trial off. This is the process of getting him down to "idle". He did great all day. We got to idle around 8:00 PM and he has been doing really good. They are working on tweaking all of the ventilator settings to get everything right where we need it. Now we need to remember to sing praises to our God for granting us what we are asking of Him and keep praying. We need to pray that Levi will do good all night so that we will come off ECMO tomorrow like we have been talking about today. We believe that God will keep working on Levi and help him all during the night and help him have a smooth transition off of ECMO.

When you go on dialysis, you risk the kidneys shutting down. We knew this when starting dialysis, but we knew that dialysis was the only way we were going to get him dry enough to try and use his lungs. He has been off of dialysis since about 6:30 this morning and when we left at 10 he still hadn't gone tee-tee. We need to add this to our prayers for Levi. We need him to go tee-tee during the night and we need him to get those kidneys working again. We have just got to ask God for these things and believe that He will take care of this for us.

I am so overwhelmed with excitement. Levi is doing so good. We have to continue to trust our Father and push all the doubts and fears away. I have so many emotions right now, I am just overwhelmed, but in a good way. Please, please everyone continue to pray through the night that everything continues to go well and God keeps Levi going and protects him tomorrow while coming off ECMO. Pray that he is 100% ready to come off tomorrow. And of course, PRAISE THE LORD, for this is all His work!

Praises for Progress (Day 43)

I have to start his post by saying PRAISE THE LORD! Oh, my! God is really showing off. Just since yesterday morning God has given us so much progress! Levi has been doing so good. Out of nowhere Levi is getting good blood gases and his Co2 was going down! This is exactly what we needed. The settings on the ECMO are really low. They are talking about starting the trial off in the morning. Please, please pray harder than you ever have that God continues this progress all through the night and gets Levi so ready to come off ECMO. Believe that HE will do it and that HE is doing it! We have to keep pushing any negative thoughts away and any doubts away and have complete faith. It is not up to anyone, only our heavenly Father! Just yesterday Dr. A. was thinking he was going to tell us to turn the pump off and here we are getting ready to come off! That is amazing! He is truly working on a miracle and Levi is going to have an insane testimony for all. I will share his story with everyone!

We just need everything to continue going the way it is. We need his Co2 to go down more and stay down. This is so very important. We believe God WILL do this because we are asking in faith! We need those sats to stay good and for Levi to do great during the trial off! We need him to do great so we an come off Monday. Please don't stop praying now. Please keep going! And please remember to sings lots of praises to our Father for granting us what we have asked! Praise him for all that he had blessed each of us with. Our God is so good and my heart will forever sing no other name than Jesus!

6 Weeks Old

What a day! We are on our way home from the hospital for the night. Levi has done so good today, out of nowhere. Dr. A. came to talk to us this morning and said the good news was that Levi has made some actual progress but the bad news was that it isn't enough progress to get past the ECMO hump of our journey. He fully expected to come in and have "the talk" with us today but he wants to give him a day or two to continue with the progress and try to come off ECMO. So, he had air on his X-ray today, the most he has ever had. His blood gases have been good all day with his Co2 being low enough for them to wean his gas sweep a good bit. His sats were good all day! We had pretty good breath sounds today! PRAISE THE LORD, OH MY SOUL! We have been praying and praying! We have got to push away any doubts that we have, any negative thought. We have got to trust in the LORD and believe that HE is working on Levi and will heal Levi! I will not give up. I will continue to pray and continue to ask everyone else to pray. This has got to happen in the next day or two and we are ridding ourselves of all doubts and believing that this amazing thing is about to happen.

"Now then, stand still and see this great thing the Lord is about to do before your eyes!" 1 Samuel 12:16

40 Days On ECMO (Day 41)

I feel like I need a chart that I can just sort of rank all of Levi's numbers on for each day for everyone. I try to run through everything each day when I write on here but I'm always thinking I might miss something. Sats were just ok this morning; they were hanging out between 87 and 94 so that's not bad but not really good either. They were much better in the later day staying more between 90 and 100. The flow was around .450 all day. Our X-ray was white again, UGH! Apparently he lost his breath sounds last night and got them back this afternoon. Hopefully he will have good air on the next X-ray. He hasn't been able to get rid of his Co2 on his own. Even if we can go down on the flow, we still have to be able to go down on his gas sweep to get off ECMO. We will just keep praying for this to all get better soon.

Today we took Caleb with us to the hospital. We usually take him with us one or two days a week and then try to have someone else bring him another day or two. He was looking at Levi and talking to him and then he turned and asked me, "Mommy, when will Levi get to come home?". Oh, my goodness! It hurts so bad. All I could say was, "I don't know". I hate this. I felt so sure that Levi was going to pull through and amaze everyone as soon as he was born and I have never told Caleb anything different than he is going to come home. It's not that I haven't thought about this, he just hasn't asked this question yet and it hurts me so bad that Levi isn't better yet. Caleb has no idea just how sick he is and that the odds are against Levi. I haven't wanted to tell him anything different because I have been believing that God is going to heal Levi. I haven't given up and I refuse to, but this is all so hard. I am so frustrated! My child should not have to deal with this. It took him awhile after the last miscarriage I had for him to understand that he wasn't getting a brother or sister and now he has a brother who is extremely sick in the hospital. The circuit is starting to get clots in it and Levi isn't better. I can't help it; I am scared. I never wanted to do this. I am not strong enough for this. I DO still believe in a miracle for Levi. It is hard because I know without a doubt that God is able to heal Levi and turn it all around, but here we are and Levi is not doing good at all. I don't want to lose him. I love him so much. I don't want Caleb to lose his brother. It has taken so long to get him here, I can't stand the thought of Caleb not getting to keep him, of us not getting to keep him. I just keep praying and praying that God will keep him here with us. I am probably rambling on and on, I have just had an emotional day. I suppose that is all for now.

A Little Progress (Day 40)

Today Levi was doing much better. Around 8 this morning they had his flow down to .190! It stayed there about 45 minutes. Obviously we need it to stay down, but that was exciting to me! His flow was mostly between .300-.400 during the day and his sats were in the 90s but at night he started getting kind of cranky and flow was up to .500 with sats in the 80s. Pray that Levi gets his sats back up into the upper 90s and can keep them up.

He had good breath sounds today and some air on his X-ray. They gave him a new ET tube today so he had two X-rays today, at around 4am and 4pm. The one from the am had a little air and the one from 4pm had even more air. Keep praying for him! We need lots of air in those lungs and we need them to work! Our sweet nurse practitioner took some pictures of Levi for us without his tube when they were changing it out.

His cheeks are red from the tape that has been holding the tube in place

Look at that sweet face! He is just perfect!

Yawning...so cute!

So we still need those lungs to open up more and start working. We need the bleeding that he has going on to stop. We need to get his flow down and his gas sweep (these are two of the settings on the ECMO pump). Really, we just need God to heal him and perform a miracle. There is no doubt about it, it has to be all God at this point and just an amazing miracle. We talked to Levi a lot today and sang and read to him. I love him so much. I keep reminding him that we are not giving up and that we need him to keep fighting and stay strong. We just try to encourage him every day and tell him how much we love him. We are praying that he feels really good tomorrow and that his sats go back up tonight and stay up. We are praying that he gets those lungs working and is strong enough to come off ECMO very soon!