Monday, October 31, 2011


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

Sunday, October 30, 2011

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!

Saturday, October 29, 2011

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.

Thursday, October 27, 2011

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 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

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.

Friday, October 21, 2011

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 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!

Thursday, October 20, 2011

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.

Tuesday, October 18, 2011

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.

Thursday, October 13, 2011

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.

Wednesday, October 12, 2011

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.

Tuesday, October 11, 2011

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.

Monday, October 10, 2011

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!

Sunday, October 9, 2011

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!

Saturday, October 8, 2011

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!

Friday, October 7, 2011

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

Thursday, October 6, 2011

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.

Wednesday, October 5, 2011

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! 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!

Tuesday, October 4, 2011

Dialysis and Dreams (Day 39)

Today was a better day than yesterday, PRAISE THE LORD. I can't handle too many days like that! As far as everyday things go, we still did not have breath sounds and the x-ray was still completely whited out. His sats were ok this morning, but not great. In the evening they were better and they had his flow down to around .410. SvO2 has been looking pretty good so we are hoping it stays that way! There was more blood today that they were sucking from his lungs and some in his mouth. It was more clotted up and they were thinking it was older blood. They are making sure he has enough platelets all of the time though to try and help with this.

We did go on dialysis today. Levi had gained another 240 grams since yesterday so I am glad that we went ahead and started dialysis. He has been peeing great but he just can't keep up with everything they are putting in him every day. Hopefully this will get the fluid off quickly but not too quickly and he will open up those lungs and show the doctors how strong he can be. We do still believe in a miracle for Levi and we are just hanging in there, trying to fight for our baby.

Right now we are in a difficult place. We know that Levi has only 4-6 more days to make progress before his circuit goes bad. We have thought about everything and we are giving him the best possible chance we can and praying along the way. We are praying for guidance in every decision that we have to make and we are doing our best to be advocates for our child. We love him so much, I can't even describe it. We want him home with us so badly, but we also know that if God's plan is for him to go to heaven then that is what is going to happen and we don't have to understand His plan. We are not giving up though. I am still fasting from all drinks other than water (and can I just say that the cream sodas and caffine-free pepsis in my fridge are screaming my name!) and we are still praying so much for our little guy.

My Levi, you have already changed our lives so much. We will never be the same. We have learned so much through this journey that is no where near over. I can never explain how I love you. I can say that I look at you and I want to hold you so badly and just nurse you back to health, but I can't. I can't make it all better and when I think about you or look at you, it feels like my heart could explode. I can actually feel something in my chest and it is my love for you. I love you and Caleb more than anyone could love somebody and I think when you look at me talking to you or singing to you or just looking back at you, you must be able to feel that love.

I wanted to share my dream I had last night. This is the first dream I have had about Levi since the last one I posted. It was just a short dream. I walked into the NICU and headed towards Levi's bedspace. When I got there, I realized that there was much more space than had been. Our nurse, K, was standing beside his bed just waiting for us so that she could tell us that Levi had gotten better and was off ECMO. I saw that the machine was gone and I just cried out to the Lord in praise and thanksgiving. That moment was amazing and the dream was so real. I woke up confused about if it had really happened or not. No matter what happens, I will praise God each day for He is a good and loving God.

Monday, October 3, 2011

Day 38

Today was a bad day for Levi. No matter how high we had the settings on the pump, he just couldn't seem to stay where he needed to. He was doing a little better before we left. Things are pretty much the same as they were yesterday. No breath sounds, no air on x-ray. Settings are high on the pump. They were sucking out blood again today, but not as much.

We talked to the surgeon today regarding how we felt about where we are. We understand that we really only have maybe another week to let him get better because that is the most the circuit will allow before it just gets too clotted to work. So, this morning we had gained 325 grams. That is a good bit. Levi is super swollen and weighs the most he has weighed which is not good. He can't open his lungs with all of that fluid. We told the doctor that we want to get the steroids out of his system as quickly as possible because he seems to be getting all of the side effects and none of the benefits from them. We also want to get him dry again to give him a better chance. So we changed the plan a little in order to wean from the steroids faster and we talked about increasing his diuretics to help him get the fluid off. Dr. A. does not think that Levi will get better once he is dry due to the fact that he has been dry before and didn't make a lot of progress but he is willing to do this because it is what we want. We do not care if that is how he feels, we have to try. We talked about starting dialysis to help him get the fluid off more quickly and give him the most time dry we can to try and open his lungs. We will make the final decision on that tomorrow and see how it goes.

We do want everyone to remember that we went into this knowing that the doctors have given Levi less than a 50% chance to make it and he has a VERY severe hernia. His lungs are really immature and they are trying to get better but he just hasn't been able to get them working. We also want to have everyone's support as the days go on. Please do not send us negative messages, we have enough going on. We are praying with each decision we make and we are trying to give Levi his best possible chance to pull through. At the same time, I refuse to push him to the point that he is in so much pain and is miserable. I can't watch him fight for his life in pain. He is confortable right now, but we could get to the point where pain meds are not enough; we just don't know. We do not know what is going to happen this week and obviously we just want our Levi to recover miraculously overnight. We are making these decisions now knowing that we are doing every last thing we can to try and help him pull through. We have not given up hope. We still believe that God is faithful and His will is good. It doesn't look good right now but we know that it can turn around in an instant if that is God's will. I think at this point we are really at peace because as hard as all of this is, we know that everything will work out just as it is supposed to. There is no question about that. Will everything work out exactly as we want? Who knows. But we would like everyone to know that we are not giving up and we hope you won't either. We hope you will continue to pray with us for Levi and we hope that you will all continue to support us in this journey. I am still fasting (which is super hard!!!) and we are not giving up. If Levi is supposed to have a short life on this earth, then that is what will happen and either way, it is up to God.

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts."
Isaiah 55:8-9

Sunday, October 2, 2011

Day 37

Today has been about the same. X-ray is still whited out. Breath sounds are gone again. We are no longer having bloody secretions so we think the bleeding has stopped. Flow has been between .500-.580 all day which is about as high as we can get it and his sats are still dropping. Things are just not good right now. I thought they were doing the steroids the same way they did last time (for 3 days) but I was wrong. They gave him a lot more this time so they have to wean him off of the steroids and that process will go through all of this week! His blood pressure has been up constantly from the steroids. He has been on medicine to keep his blood pressure under control but every time he wakes up he turns bright red and raises his blood pressure again. The steroids also have him super cranky and squirmy so he is even more aggravated when he wakes up.

This is all so frustrating. Every time he wakes up mad, he drops his numbers. I can't help feeling like if he is still on the steroids all week, then he won't be able to make progress. Hopefully since it will be smaller amounts it won't affect him as much. I don't want to sit here and watch him so aggravated all week long. I also don't want to watch him all week make no progress. I don't want to get through the week with no improvement and have to have "the talk" with the surgeons. Please pray that he feels better tomorrow and can make some progress. I do not want to get to that point. I want him be strong enough to come off ECMO. I'm just not ready to say goodbye to him. I shouldn't be even writing or thinking these things, I am just so frustrated tonight and want my baby all better. I know 100% that God can do it. Another baby in the NICU passed away today. This is the second time they have closed the NICU due to a death since we have been here. It is so sad and so overwhelming. I just want all of these sweet babies to get better and of course I want Levi to get better more than anything. I am praying that he feels better this week and everything will turn around miraculously.

The NICU was closed for almost the whole first half of the day because a baby passed away. So sad! I hate this for the parents. For those who don't know, our day goes something like this: wake up, get ready, drive to the hospital, eat lunch around 2 while the NICU is closed, go back in when they open at 4, stay there until about 10 when they close. We are pretty much there all day every day and while we hated to have to stay away today, it was kind of a blessing because we took that opportunity to spend more time with Caleb than we have in awhile. We went to the store to look for some fall clothes for him, ate lunch and went to his baseball game. I don't like being away from either of my boys but Michael and I both feel like we need to be there for Levi right now. He is not doing good so we need to be there to talk to him and try to comfort him when he isn't happy.

Saturday, October 1, 2011

Day 36

Levi had a really good first half of the day. When we got there his flow was down a little from the night before, but still up in the 400's. Shortly after we arrived though, his numbers were all looking good and we got his flow down to .280. He got cranky for a few minutes and went back up to .500 but after a little while he got back down to .230. He did well with the lower settings for awhile and then ended up going back up to about .540. When we left he had calmed down a little but was still squirming around. Hopefully, as they get the steroids tapered off and out of his system, he will do better with this. This morning he only had old blood when they sucked him out, but by the afternoon he had lots of bright red blood. They went way down on his heparin and said they would give him some extra platelets to see if that would help. I really hope the bleeding has stopped by the time we get back in the morning. My poor baby. I hate that he is having to go through all of this but I want him to pull through so badly. His x-ray was still completely white today so no air back in his lungs yet. He did have some breath sounds today. He is really swollen still from the circuit change so hopefully he can pee a lot tonight and tomorrow and get rid of all that extra fluid. He does so much better when he gets that off. I think that is all for Levi.

I just need to say that life in the NICU is not fun at all! It stinks! I do not like it! I just want to be able to hold my baby when I want to and nurse him when he wants to. I want to change his diaper on my lap or on my bed or anywhere besides in the NICU. I want to be the one who takes care of my baby all the time and decides when he need diaper rash cream or a bath. It hate sitting there watching nurses take care of him all the time. We do what we can, although that is basically nothing. I think I was just sad standing there while his nurse changed his diaper and cleaned off old diaper cream and put on new. She said something like "that looks much better" and I just hate it. I just hate that I can't have him at home doing all of the normal things that so many people just expect and take advantage of. I probably sound like a big complainer tonight, but it is just frustrating. I know life isn't fair so I hate to even say this, but it simply is not fair that there are people out there who don't care about their children and we have to go through all of this. It is not fair that anyone has to go through the NICU experience and especially not fair for those in the NICU who know that any day could be their baby's last. I know that God's plan is perfect and this is just part of that plan, but it is not fun and I wish we didn't have to go through this.