Monday, October 31, 2011
Sunday, October 30, 2011
Saturday, October 29, 2011
Thursday, October 27, 2011
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 http://babytategranted53.blogspot.com/.
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...
Friday, October 21, 2011
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!
Thursday, October 20, 2011
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
Monday, October 17, 2011
Thursday, October 13, 2011
Wednesday, October 12, 2011
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
Monday, October 10, 2011
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!
Sunday, October 9, 2011
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
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
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
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
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.
Tuesday, October 4, 2011
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
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."
Sunday, October 2, 2011
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
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.