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

12 comments:

  1. We are hoping and praying with you!

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  2. I have been reading and praying but have never commented. I am not giving up hope! I know God is the Great Physician and can perform miracles in a matter of minutes. It is my prayer that God heal Levi and it be a testament to His Glory and Grace.

    Blessings to your family and I will continue in prayer.

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  3. always praying, always supporting you. so much love.

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  4. I don't think we have ever met but have mutual friends and such. It is an honor and privilege to agree with you in prayer for Levi!!!!! praying everyday for precious Levi and your family!!!! thank you so much for keeping us posted on how he is doing. love and blessings, jen

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  5. So proud of you and your family for being so strong for Levi. I do not know you, but I have faith that God will do what is right, and that you will know if it gets to the point where Levi can't take it anymore. It does not seem fair for your family to be going through all this, but as you know God has a plan for EVERYTHING. I hope and PRAY Levi has a miracle today. Let the fluid come off and the air come in!

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  6. God,

    I ask for you to intercede today in Levi's life- please help the fluid come off his body, let his lungs open - heal him. You are the great physician and we know that you can perform these miracles. You are a good and loving God and you know the hearts of these parents. They want their baby to be with them more than anything- they will give their baby to you if that is your will, but as any parent - they desperately want to keep this beautiful gift. Lord, surround this family with peace and comfort. Help give them clarity and wisdom with making these difficult medical decisions. Please give the doctors and medical staff assisting wisdom and discernment and support for this family. I pray that you would be guiding the hearts and minds of all involved and that you would just radically turn things around TODAY, in Christs name we ask this. We know that everything happens in your perfect timing- so let that be today. We pray for a miracle right now. Heal Levi. Each moment - let his lungs open more and heal his body.
    Amen.

    Keep fighting Levi!

    Blessings,
    Liz Dooley, mama to Finley - LCDH Survivor
    www.finleyanabelle.wordpress.com

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  7. Becca and Michael,

    I have been following your blog for some time now. I am not sure if you remember my family but we met you when your adorable son Caleb was dressed up as a Shark one year at a Halloween Trunk or Treat at the little Presbyterian church. You were all so sweet and asked us if we attended First Baptist. Please know that you are all in our prayers. Reading your blog and hearing how strong you are for your sweet Levi is so uplifting, while you may not always feel like you can endure anymore, God knows how much you can! I have no doubt that the both of you know that! I can't even imagine how you all are feeling but please know that everyone feels your pain and hurt. All I can offer is my continued prayer for your family, little Levi, the doctors, nurses and staff. I know without a doubt that our church is faithfully praying for you all. Buddy mentioned Sunday during the service that he came to see Levi this weekend. I told my husband that it is so unfair for kids to be sick! Hang in there.


    My hope is built on nothing less
    Than Jesus’ blood and righteousness.
    I dare not trust the sweetest frame,
    But wholly trust in Jesus’ Name.

    When darkness seems to hide His lovely face,
    I rest on His unchanging grace.
    In every high and stormy gale,
    My anchor holds within the veil.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

    His oath, His covenant, His blood,
    Support me in the whelming flood.
    When all around my soul gives way,
    He then is all my Hope and Stay.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

    When He shall come with trumpet sound,
    Oh may I then in Him be found.
    Dressed in His righteousness alone,
    Faultless to stand before the throne.

    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.
    On Christ the solid Rock I stand,
    All other ground is sinking sand;
    All other ground is sinking sand.

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  8. Hello I just found out about your little fella. I'm a cdh Mom as well. Our daughter Ava was born in 2006. I just encourage you today to stay positive and upbeat around Levi. Our kiddos can sense fear and frustration. Of course HOPE is so hard to have when you see your baby struggling and the numbers aren't getting any better. God can change Levi from bad to good at anytime. I wish I had the answers to why our children have to go through all of this... and us parents as well. It is more than we can bare at times. Take care of yourself and encourage each other daily. CDH is one tough beast to fight but it CAN be done.

    I'll be praying for you all and your sweet little peanut. God knows our hearts and He will give you and Levi what you and he needs.

    Ava's Blog... http://avaslifewithcdh.blogspot.com

    I also started a page on facebook for cdh parents.https://www.facebook.com/raisingcdhkids

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  9. Praying for you that the Lords peace be with you no matter what the outcome is, but of course, I pray that God performs a miracle for Levi. He is able! We have a 6mos old daughter with CDH and are still dealing with "stuff" from the problems associated with it. We were given a %10 chance of survival for her in utero, but God has given her to us for almost 7mos now. It is hard every day but I know anything can happen still. God is in control no matter what and His ways and plans are not always ours...in fact, His ways are usually not ours. He sees the whole picture whereas we only see such a small, tiny portion of it. God bless you and your family and may His Holy Spirit be a comfort and strength for you.

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  10. praying with you all for a miracle...

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  11. I don't know you but I check this blog daily...and I pray for Levi often. Love to you all...my prayer tonight is for a miracle. I KNOW my God can do that!

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