5 Weeks Old

Today has been a bad day. We were back up to around .570 on the flow. Levi's pre sat kept dropping. That number is usually pretty good. He is not using the oxygen they are giving him so we need his lungs to open up and start working. The little air he had on his X-ray was gone this morning. The blood in his lungs did stop and we were just getting old blood out instead of red so hopefully that will stay away so we can do more chest PT. I don't know why his lungs are so sensitive; maybe all of the blood thinner he is on. He is very swollen and not peeing as much so we are hoping he will get rid of some more of that fluid in the next few hours. He was doing much better and had more breath sounds and air a few days ago when he was more dry. The steroids do not seem to have helped; they have his blood pressure elevated and have him aggravated. Maybe when he gets those out of his system he will calm back down and make some progress. I hate that we lost everything we accomplished.

Levi looked so sweet today and so sad. He just looked like he didn't feel good. That breaks my heart, I just want him better so I can hold him and love on him all day. I want him to feel my love. I hope he doesn't feel so sad laying there all day, just wishing someone would pick him up and snuggle him. We started playing classical music for him about a week ago and it puts him to sleep. Sweet boy. Today I was playing him some of my favorite songs. One I think he liked was Kari Jobe, Healer. It is hard not to get frustrated by days like today but I am not giving up. I will keep praying for healing until he is healthy in my arms.

Day 34

I feel like I have been on the edge of breaking down all day. I just want it all to get better now. Tomorrow Levi is 5 weeks old. This is all too hard. I don't want to do it anymore but I have to keep fighting and keep going. I can keep going to the NICU for a long time, I just need some progress to keep me going. I really don't mind basically living at the hospital, it is just so hard to sit there and things aren't getting better.

Levi's flow was up and down between .460 and .500 all day. We saw his X-ray from this morning and it was actually a little better than yesterday. I expected it to be worse with him having lost his breath sounds. They continued steroids today and started him on the nitric. They also turned the vent settings up a little (they were on rest settings) to see if that would help encourage him to open those lungs. This evening when the nurse bagged and suctioned him there were bloody secretions. He has has pink tinged before but it hasn't been this bad. This happened twice. Please pray that this stops. I feel so overwhelmed because there is so much to pray for. All in all, we just pray for healing but there are so many things involved with the baby steps and I am just so overwhelmed.

So, we need the bleeding in his lungs to stop, we need his lungs to open up and fill with air, we need the hypertension in his lungs to go away. We need sats to get good and stay good. We need blood gases to be good. There is so much, so I guess tonight I will just pray for the big picture, healing. This is so hard. Father, please heal Levi!

My Dream Last Night

I have only had a few dreams about Levi and they have all been weird except for the one from last night. I walked into the NICU and Levi's head was where his feet had been. He was moving his arms and legs and looking up at me like he was so happy and I noticed there were no more wires or monitors attached to him. So I asked the nurse if I could hold him. She looked at me like she didn't know if that was ok then said, "Yes". I picked him up and sat in a rocking chair and just rocked him. I thought he was going to squirm around a lot because he looked bigger like 3 months, but he just laid still and looked up at me. It was so sweet. I can't wait for this reality. Rocking my healthy baby boy.

Day 33

Levi has been about the same today. Flow was up today. When we left it was at .520. For those who don't know, we really need that to be down to .200. Sats were kind of all over the place all day. They did start steroids today and that will be another 3-day course to see if it will help this time. I think we may be trying the nitric oxide tomorrow but that isn't for sure. Breath sounds were still gone for the first part of the day but we heard a little this afternoon. They were still there this evening, but much harder to hear. I think that is all for him.

Today went by so fast. You would think that sitting in the hospital all day would be so boring and make the days drag on and on, but I never feel that way. There was a lot of praying going on today. I have always felt like I am not content with my relationship with God. I think I will always feel that way because I simply cannot understand His grace, His power, love, everything. I will always be seeking to know more and get closer. Today was a day of frustration and of growth, I think. I don't know that most people would group those together but I definitely am seeing just how overwhelmed I am. I know that there have been things I have gone through in my life where I just could not see any positive side of it or just couldn't understand what God was doing, but after I am out of it things have gotten clearer. Well, I have so many things going through my head every minute of the day and I don't think being sleep deprived helps. So, I am so thankful for all of the people praying for all of us. When I feel like I can go no longer, you all keep praying. When I don't know where to turn, I get a text or an email from someone with some encouragement or some scripture that is always EXACTLY what I need. God is using each one of you to help us through this and to reveal to us His plan and purpose. I can tell that I am growing and by the time we are out of this storm, I think I will be changed in ways that I cannot imagine right now.

Day 32

Today was not the best day. It was uneventful, which I suppose is good. Sats were not great, they were decent in the morning but jumping around all day and lower in the evening. Flow is up around .520.  Breath sounds are gone today. We gained about 200 grams after the circuit change so that is most likely why we have lost the breath sounds. We lost some air on the X-ray this morning but not all of it. With breath sounds being gone, the rest may or may not be gone tomorrow. Hopefully we will lose that extra fluid and tomorrow he will be more dry again and have gained some breath sounds back.

The plan for now is to do another round of steroids starting tomorrow and do the nitric oxide probably the next day. They are also talking about trying to turn the vent up and wean from ECMO this week. Not sure when and exactly what the process will be, but the nurse practitioner was saying we are trying to get him back to where he was on Sunday and try and push him off ECMO. We really really need him to get some air in those lungs and be able to wean from ECMO this week! We need another day like Sunday and we need to grow from there! Let's keep praying for a miracle for Levi!

Update From Today

So the circuit was changed about 6 PM and everything went well. They are talking about starting steroids tomorrow or the next day. I think they were leaning towards tomorrow, I just hope he doesn't gain too much fluid between now and then (we want to give him the best possible chance for them to work). His flow was up pretty high when we left tonight so we are hoping his sats will be good tomorrow and stay good so we can work on weaning. They were ok but his pre sat was dropping too low. The other numbers were decent. Sats were about 87 and 77 (we need these to get up close to 100) and SvO2 was at 70 (better if it is like 75-80).

Really hoping that changing the circuit doesn't cause Levi to gain too much fluid and lose the air he has in his lungs or lose his breath sounds. We need him to get LOTS more air in there and have good, clear breath sounds. I believe it can happen. Keep praying, everyone! Keep encouraging us! Somehow, every time I get down someone sends me a text or some scripture that encourages me. You guys don't stop. We really couldn't do this without each and every one of you and your prayers mean so much!

Levi - One Month Old

1 Month Old

It is hard to believe our sweet boy is a month old. I guess because we are still in the hospital, it feels like maybe a week. So, when we got here this morning the flow was back up to about .450. They told us that they were going to change out the circuit today and possibly start steroids tomorrow. It is very important that Levi does well with the circuit change and doesn't gain too much fluid. I think he has been pretty dry the last day or two and that plus starting back the chest PT seems to have given him some room to open up those lungs (or at least start trying to). He had a little more air in his right lung on the X-ray this morning but still has so far to go. Pray this circuit change doesn't set him back too far but especially pray he doesn't lose this small amount of air. He needs so much more, this is just a tiny amount but at least he is letting a little in. Now we need them to open up and God to breathe into him! When we left for lunch his sats were dropping like crazy and the flow was back up to .500. We know that this is the last run on ECMO. This week he has GOT to make progress! Yesterday was a start and now that his sats are back down we have to pray with all we've got that he will build off of the little progress he made and run with it! His sats need to get better and the settings need to go back down! I will try and update tonight and I am hoping we will have some positive news to share.

Day 30

Today was a really good day for Levi. This morning his flow was down to .240! That is WAY better than it has been. To come off of ECMO we need it to be at .200. For the past week or so it has been around .500 so that was a huge thing for him. By the time we left it was up to .320 but that is still much better than it has been and he seemed to be tolerating it pretty well. I could not believe it when I first heard that his flow was down. I started tearing up because no one has expected him to turn it back around and especially him making such good progress so quickly.

Last Friday was his good day that happened after the prayer vigil and today he had a really good day while so many people were fasting and praying for him. This little guy wants all of our attention and he wants it at the same time! ;)  No, but seriously, God is listening to us and hears our prayers. Please all of you, do not give up. Your prayers mean so much. I wish I could do something/give something to show how much I appreciate it but there is nothing I can do to express my gratitude. When Levi pulls through, I think we will all be so overwhelmed with joy and that will be reward enough but I still wish I could show you all how much you mean to our family. We have never met so many of you and you have taken such an interest in our family and especially Levi. Wow! I can not say that I have taken such an interest in a stranger before and I have definitely learned so much in the last four weeks just about the power of prayer and how easy it is to be there for people when they are in need from all of you. Thank you all for checking on us, for bringing us food, for making sure we are ok with money, for sitting with us and making us laugh on bad days. Most of all, thank you all for praying. Levi still has SO FAR to go and he could go backwards at any time. I am hoping that you will all continue to pray as much as you can that he will stay doing good throughout the night and when we get back in the morning he will still be doing good. Hopefully he can make some more progress tomorrow!

Forgot...he also had some breath sounds today (more during the day and a little less at night) and there was the smallest amount of air in his right lung on his x-ray this morning, but we will take it! Hoping it will just grow from there and his lungs will fill up!

We love you all so much! Our family has grown to include you all!

Day 29

When I woke up this morning I looked at my phone and saw a text that a sweet friend had sent me... "For everyone who keeps on asking receives; and he who keeps on seeking finds and to him who keeps on knocking the door will be opened." Matthew 7:8

I love how God places people in your life at the perfect time and how he uses those people to help you when you need it most. I needed to read that this morning. I needed encouragement. Some friends showed up at the hospital after awhile and it was so good to see them. They prayed over Levi and brought gifts. One of my friends brought a superman shirt for Levi. So cute! I am so happy to see people who care about us and Levi but it is especially encouraging when they truly believe that Levi is going to be healed. They truly believe that God is going to perform a miracle. I need that. I need to see those people and hear those things. Sitting in the hospital day after day and looking at all of the monitors and seeing just how bad it is discourages me. I see this sweet baby who looks around and just stares into our eyes as we talk to him. He does some of the cutest things and has such a cute personality. It is so hard to believe that just unplugging a machine would end it all. There is so much that would have to happen for him to come off ECMO and survive and it is discouraging to sit there day after day with no progress and know how unlikely it is that it could turn around.

Update on Levi...he is doing the same, pretty much. His sats were really good when we got there but it only lasted about three hours and then he was right back down. They did hear some breath sounds today and those had been gone for almost a week so hopefully he is trying to open his lungs. He has so far to go, such a long road. I want him with us so badly, but at the same time I know there is so much he will have to go through and overcome. I do know though, that if he can just pull through we will make it worth it. That boy will get so much love and once I can hold him I don't think I will ever put him back down.

Hoping tomorrow is a day with more breath sounds and some air on his x-ray and better sats! Lots to hope for!

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.