4 Weeks Old

When we got to the NICU this morning, Levi was the same as when we left last night. After a little while his numbers got a little better and we were able to take the settings down on the pump a little. He handles the lower settings for a little while and then we slowly had to go back up. By the end of the night they were even higher than when we started this morning. It is very discouraging. I think our Levi is a little tease.

We talked to the doctors today about what our plan is from here. I was very afraid that they were going to tell us that this was it. The plan now is to change the circuit either this weekend or Monday at the latest and after that we will do another round of steroids and the nitric oxide and just sort of hit him with all that we have left and see if that will push him into opening those lungs. This is basically our last option and the only thing we have left to try. No one has any hope with this, but we want to try everything we can to help him and give him this last push. We know that with how much support he is on and how he can't seem to get his numbers where they need to be still and the fact that his lungs are still empty, it is not likely that he will turn it around now but we are going to stay hopeful because despite the likelihood and despite how small the chance is, God doesn't need good chances and He can turn it around in an instance. Our Levi can still be a miracle so we are going to hope for that. I am so glad that we have this plan though because most of the time when a baby has been on ECMO this long with no progress, they give up. Praying we don't get there and praying for our miracle!

Day 27

Levi was the same today as yesterday. He is not doing good. His little lungs are just not making progress. It is very frustrating. I was talking to his evening nurse today and she feels the same way. We are all just so frustrated because we want him to make progress and get better and he isn't. I don't know what the plan is from here, we might try and talk with Dr. Anderson and see if there is ANYTHING else we can try. His circuit is getting lots of clots again and I don't know if they will change out the circuit and give him a little more time or not. I just want him to turn it all around in the next day or two. I know we are not far from them giving up. I just prayed tonight and told God that I wasn't giving up yet. I know that He is still able to heal Levi completely and bring him home with us. Levi needs a miracle. We don't know what is going to happen but we can't give up yet. No one at the hospital expects Levi to turn it around at this point. He has gone so far backwards that it doesn't seem likely that he will turn it around but the nurse assured me that they have not given up yet. We know that there isn't an expiration date for God, He can heal Levi whenever if that is His plan.

I love the nurse we had tonight. She cares so much and I know it is hard for her to watch us going through this and have to hear what the doctors say. So it was very hard to sit with her and talk about how we all know that he is just not doing good. As hard as this is, we know that we will be alright and God will pull us through all of this. This is all so hard, indescribably hard but even through all this, God is good and our hope and trust is in Him.

Day 26

Today was weird day. As far as Levi goes, he was about the same. Still up on the pump. Hit sats were a little better for a lot of the day. We haven't had any breath sounds for a few days now. They stopped his chest PT a few days ago because he had some bloody mucous coming out of his lungs. They started chest PT back today because he seemed to be doing better when we were doing that. We were talking to the nurse practitioner today and looking at his x-rays from the past few days. We told her about his x-ray from sat morning and she apparently hadn't seen it. That was the only day that he actually had any air in his lungs. The x-ray was taken about 3-4 am in the middle of Levi having his good night (Friday). Anyway, she was comparing that x-ray to today's and thought that it looked like the breathing tube was a little further in today so she had the nurse pull it out slightly to see if that would help let air in and she was the one who said to start chest PT back since we stopped hearing breath sounds after we stopped that. Dr. Anderson was telling us today that in a few days, after we get some more fluid off, he wants to try and give him some special oxygen through his breathing tube and see if it will help at all. He said that if it will, it should help in the first 24 hours or so. So that is where we are with all of that. Hopefully Levi's lungs will not get aggravated by the chest PT and these small changes will help.

We also received some news today. The doctors typically check the chromosomes in babies with CDH to see if there is some type of abnormality that could have caused it. Well, they got the results in today and told us that Levi does have an abnormality in his chromosomes and one of the common things that occurs with it is CDH so now we know that this is why he has the hernia. They also believe that this is a spontaneous occurrence and not a genetic thing. This doesn't really change anything, just tells us where this has come from.

Several friends visited tonight and prayed over Levi. I was so happy to see you all. I am so grateful for good friends who are willing to come pray over our sweet boy. Tomorrow our pastor is coming to anoint Levi with oil and pray over him. Thank you all for your consistent prayers. We love you all very much.

I think I started to feel a little better today after talking with the nurse practitioner and deciding to make a few changes. As the day went on I am not sure what happened. At some point I just felt really peaceful despite how much is out of our control and then I think I reached a point where I just felt numb. I really don't know what I am feeling now. I guess I am overwhelmed. I want to make sure Caleb doesn't feel unimportant and we also feel like we need to be there pulling for Levi as much as possible. A couple weeks ago we took Caleb to the drive-in to see Smurfs and as hard as it was to be out there trying to do something normal, I am so glad we took the time to do something fun for him that is a little more normal. Today we took him to his baseball game and watched him play(we haven't had to miss a game yet and I hope we don't have to) but I think in a few days we will try to have a night just for him again and take him to do something fun. I see him struggling and it is so hard to watch, but I don't feel bad for being at the hospital a lot, I feel like we have been where we need to be when we need to be. I do feel bad that Caleb has to go through this though. I wish I could make it all better, but I know this is all temporary and we are doing our best right now.

Hoping for good news tomorrow

Day 25

Updates for today...not really any. The flow on the machine is up to .650. That is the highest it has ever been. We need it to get to .200 so that is not good. Levi has been very squirmy and aggravated and has been setting his pump off. That is not good, we do not need pump problems. (That is ECMO pump, by the way)
It feels like we just sit in the NICU every day for hours waiting on something good to happen. It gets frustrating. I think I had several days where I didn't get very emotional and I didn't cry (or at least had minimal crying) and that has caught up with me because today I was even more emotional than yesterday. Today was filled with tears. I DO have faith, that isn't the problem. I don't know why I have been so emotional. I think it is a combination of just giving birth and my hormones being crazy and the lack of progress being so discouraging that it just takes a toll.

I think I was ok until about 4:00. I was sitting in the NICU just crying listening to the guy nurse explain some things and then it was time to pump. I spend so much time in that lactation room downstairs, I feel like I live there. Anyway, I went downstairs. I was glad that it was time too because I needed to get away for a few minutes. Most of the time there are between 2-5 moms in there but it was just me this time. I sat there crying for like 20 minutes. When I was trying to pull it together another pumping mom walked in. She is a nurse that works at the hospital so I see her pretty often down there. She asked me if I was ok and I never know what to say to that. I talked to her for a few minutes while I finished pumping and then went back upstairs. This whole day was weird. It went by so fast. I never want to leave at the end of the night.

This may sound to some people like I have lost hope, but I can assure you I haven't. There are some things that are always in the back of my mind, though. I am always pushing away any "what if" thoughts that creep in. But I can't help but think that this is all too much. This is too much for us and way too much for Caleb. We just can't lose our little Levi. I look at him and he is just perfect. I love him so much. Poor Caleb has been so excited about having a little brother. We waited to tell him about Levi until I was 14 weeks because of the previous miscarriages. All he has talked about for so long now is Levi. I cannot imagine never bringing him home and Caleb not having his brother here with us. That is too much. I cannot imagine an empty nursery forever; that is too much. I just feel like he has to pull through and he has to come home with us. How could he not? I have honestly felt 100% that it is God's plan for Levi to live here with us, for him to be a miracle baby. Every day gets harder and harder. I see my sweet little one's eyes staring into mine and I can't believe that it is a machine that is keeping him here. We just can't lose him, we have never gotten to hold him or hear him cry. I have never gotten to nurse him or stay up all night with him. He has to make it. I just need God to work on him. ALL our hope is in HIM. This is all so much harder than I thought it would be. It was hard to be pregnant and know that this all was coming, but it was easier to be hopeful then. It is harder to stay hopeful as each day passes but I do not have any doubt about my God's sovereignty. All I have left is hope in God though and I think that is all that gets me through each day.

It has been a rough day and this post is probably all over the place and very random because I can't get my thoughts straight so I apologize for the rambling. I think the most important thing is please everyone keep praying. Please, keep believing that He can and will heal Levi. Please do not doubt that there is still hope for Levi. We need to all believe and we need to all keep praying and praising God for sweet Levi.

Day 24

No news for today. We are up even further than yesterday on the ECMO. We just left and he had been very squirmy so I am hoping he will calm down and get some rest and get those lungs working.

I have been pretty emotional today. I don't really know why either. I can't express how helpless I feel. I want to make it all better and there is nothing I can do to make his lungs open up. We desperately need them to fill with air. So, I am doing all that I can do by hoping and praying. I can't stop praying. I feel like I am crying out from the deepest part of me and I still can't quite get it all out.

Sweet Levi was awake and squirmy for a long time today and when he was fighting his sleep, he just stared up into my eyes. Oh, what a sweet face and she sweetest eyes. I wish I could make this all better. I wish I could make this fight easier for him. I feel so bad that he has such a long road ahead of him but all I want is for him to keep fighting and pull through. Am I selfish? I told him to stay strong for me and that when we get home it will be worth it because I will hold him and love him so much and never let him go. I long to hold him so badly. I feel like once I can hold him I will never be able to put him back down (gotta make up for lost time, right?). My arms literally ache from the emptiness. I stared into Levi's eyes for the longest time today and I can't imagine never being able to take him home. He HAS to get better and come home with us. I don't see how he couldn't with all of the prayers. I can be patient and get through all of this, I just need him to get stronger. I need him to make progress. I don't want to lose him and I don't want Caleb to lose his brother. It is so hard for our family to be separated and broken apart but we can get through this. We just have to stay strong and keep the faith.

Oh, how sweet is that face?

Day 23

Today has been a pretty typical day in the NICU. Levi spent the day staying about the same as he has been. This morning they were no longer hearing breath sounds and all day they slowly went up on the settings. Not what we were hoping for.  :(  This evening they heard some breath sounds but not as much as they heard two nights ago. That was a really good night and we are very ready for some more nights like that! I am hoping that he was giving us a sign that he is trying and after this going backwards, he will slowly get back to there and not go back down.

I guess tonight we need to be praying that he will be breathing and opening his lungs. They do his daily X-ray around 3-4am so let's pray that between now and then he gets his lungs open more and has a good X-ray for us to see in the morning.

This little boy is wearing me down. I get so hopeful then we go backwards and I think he is just trying to mess with me. I am trying to encourage him so much but that means that I also have to stay super positive and encouraged myself. Today was one of those days when I just have to keep reminding myself that he needs me to stay positive. He needs me to have it together for him so that I can encourage him. I can't be encouraging when I am sitting there feeling beat by the machine. I think this is kind of like a game we are playing against the machine. We are amazed by this insane piece of equipment that is helping our baby try to get stronger, but at the same time it feels like we are trying to get he settings down and him less dependant on it and it is beating us today, going up and up. So discouraging! Now that I have vented about it I will try and rest and sleep off today. Tomorrow is a new day and when we get there in the morning we will be greeted with good news about how great he was during the night and encouraged by his X-ray showing improvement! That is what I will pray for and believe. God will heal Levi because we are asking Him to in faith. I think I will go dream about holding my baby and hearing him cry now and maybe get some tears of my own out then pull it together for tomorrow.
Life for Levi! Levi=LIVE!

Day 22

This morning we arrived at the hospital and were so excited to see that Levi did great during the night. His settings were still down and his sats were still up. Shortly after, he started dropping his sats (not horribly, but enough that we had to go back up on his settings). The nurses are wonderful. They are very good about lowering the settings very slowly over time so that they don't push him too far. They are always talking about how our baby is just different from the other babies on ecmo. Because of the heart condition, they have to keep his PDA open and that makes his sats drop sometimes. There are days where they don't adjust the settings at all and his sats will stay up for awhile then go down for awhile and there usually isn't anything that will make them go back up. There is never one way to keep him happy, it is always something different. Thankfully, he keeps some of the same nurses and they know him pretty well and have learned how he reacts to things.
Anyway, when we got back from lunch his numbers were better so they were trying to adjust some of the settings back down slightly. We didn't make much progress with that and the rest of the night we have had to creep the settings slowly back up to where we started. This is pretty discouraging but I am trying to not be upset and just believe that when we get back in the morning, he will be doing better again. They started Levi on the steroids this morning thinking that would give him a boost after his good night and he will get them tomorrow and the next day so we are really needing/hoping for him to make progress over these next two days and for his lungs to open up. We have had some breath sounds on and off today end even some small ones in the left so let's pray tonight that his X-ray will show some air in there tomorrow. That will show the doctors a little progress which will give him more time to make more progress. You can do it, Levi! God is working on him every day!

3 Weeks Old

I am so happy to be writing this update tonight. Today started out like most days. After Michael dropped Caleb off at school we got all of our stuff together and headed to the hospital. When we got there Levi was doing about the same. His settings on the ECMO were higher than last night and his sats were kind of low (which is typical for him-those numbers are always crazy). I read to him for a long time today. Most of the time we spent there I was reading to Levi and talking to him. We were encouraging him to breathe and reminding him how strong he is and that we were there for him. My goodness, I love that sweet boy. He looks up at us with the sweetest eyes and I just fall even more in love.

Well, we left around 6 to go eat dinner with Michael's mom and step-dad. We took Memphis' parents with us and headed out towards Springville. After dinner, we rushed back to the hospital (we always want to spend as much time with our boys as possible). I had to pump as soon as we got there but when I got upstairs I looked at all of Levi's many machines and screens. His sats were in the upper 90's and the settings on the machine were lower than when we left. While we sat there she kept lowering the settings little by little and he was handling it! I am so excited that he was doing better; his numbers had been pretty low for a lot of the day. Then his nurse told me that she heard some breath sounds! PRAISE THE LORD! This morning she said she couldn't hear anything and now she was hearing breath sounds in his right lung. All we have heard up to this point were some distant breath sounds that we very hard to hear and only in the top of the right lung. This time, breath sounds in the top and even some in the bottom. We told Levi we were so proud of him and kept encouraging him and telling him how much we love him and I just prayed and thanked God for a small amount of progress and for getting us somewhere we haven't been yet. I am believing that Levi will do great through the night and praying for God to continue breathing air into his lungs and to keep him going good through the night so when we get there tomorrow his settings will not be back up.

Praise God with us for answering our prayers and continue to pray that Levi will keep this progress and God will add to it! Let's pray that the x-ray tomorrow will show some of this air in his lungs!

Can't get this song out of my head right now!

Day 20

Today was a pretty uneventful day. Levi is about the same as he has been. We got to change his diaper today several times and it is good that he is having wet diapers (we need to get rid of the excess fluid). Levi was over 8 pounds today and so we have a good bit of fluid to lose. After we lose some of the fluid they plan to start him on steroids to try and help his lungs develop and start working. Dr. Anderson doesn't seem very hopeful, but it is worth a shot. I am believing that in a few days it is all going to turn around and his lungs will just start opening and filling with air and he will make lots of progress quickly and be able to make the switch from ECMO to the ventilator and then he can prepare for surgery. I was trying to just keep talking to Levi today and encourage him to open his lungs. I told him that we were not giving up on him and he couldn't either. I told him that we will be there beside him as he fights and that even though there are more challenges ahead, we would be there to love on him and help him pull through.

We also had a prayer vigil tonight in the chapel at the hospital. We are so so thankful for all of the people who showed up to support us and pray with us. We are so so thankful for all of the people who couldn't make it but prayed where they were and of course so so thankful for all of the people in our prayer group who continue to check on us and pray for us. Our sweet boy has so many people praying for him! I can't wait for the day that I can tell him just how special and loved he is; what a miracle he is and how important he is. I love that boy so very much! My heart is so full of love for him and Caleb, I feel like it could just explode. That is strange, but I guess a mother just can't describe her love for her babies!

We will continue to pray for Levi's lungs to do what they need to do and that is what we ask you all to pray for as well. Those lungs opening up and starting to work is the first step. After that we need him to tolerate us weaning him from the ECMO but we will focus on one thing at a time. We are praying life for Levi in faith and believing that God will heal our sweet boy.

6 Days Old

What a crazy six days it has been! I am so exhausted, we all are. This is all so hard. It is so hard to not be able to rest after you have a baby. It is so hard to have to walk from one hospital to another to visit your baby who should be in the room with you. Every day gets harder and harder. Today I really feel so beat. I entered the NICU this morning with hope. It was a new day and I felt 100% that Levi was going to do better and his numbers were going to go up. I told myself that over and over so that I would really believe it and I prayed and prayed and prayed. Shortly after we got there his numbers steadily went up and up to closer to where they needed to be and were staying pretty good for awhile. I just sat there thanking God over and over for bringing it up and blessing us. After awhile, his numbers just went back down; then right before we were leaving for the night, another number started going down. He was bringing it back up but it was going up and down. That number has been good the whole time he has been there, I don't know why these things are happening. I feel so beat. It is physically exhausting trying to keep my hope and trying to keep my faith that he will pull through. I know he will get through this, I know God is working on a miracle and molding our family, but it is so hard. I don't feel strong enough to get through this, I just want something positive to happen. It is so painful to sit and listen to the surgeon talk about how small and immature his lungs are. His left lung is so tiny and has so far to go. I just want him to get better. I just want to bring him home and show him his room. I just want our family to be together at home. I am trying to hard to be strong. I can't do this without God and I pray that He will give me the strength I need and help me to stay hopeful.