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.


  1. I am praying for your sweet Levi! Your recent pictures just broke my heart and brought back memories of being in the NICU with our daughter who also had CDH. I will continue to pray for all of you and am asking the Lord that in His sovereign grace and mercy He would heal Levi. I am also praying for wisdom for all of Levi's medical staff and that He would continue to uphold your family.

  2. praying so much. what an amazing dream. i want that to come true for you so badly!

  3. Praying for levi!!!! My Dakota is a CDH survivor, now almost 3. She was also on ECMO. I remember that day when I came in and the machine was gone. It was so quiet and empty. It felt wonderful, just like your dream. I am praying and praying that that dream comes true in the near future. Many prayers for a good day today and steps, even if they are baby steps, toward recovery.
    Mom to Dakota 12-25-2008
    RCDH survivor

  4. Praying without ceasing, he is gorgeous!

  5. I am praying. You are so strong and I know Levi will gather strength from his mommy!

  6. praying constantly without ceasing, Momma!! Beautiful moments XOXO

  7. Sending prayers for your precious Cherub Levi. I pray he kicks CDH's butt!!!