Monday, April 9, 2012
Update (April 9th 2012)
Yesterday morning they turned off the PGE (med that has been keeping valve open) and Landon did not tolerate it. The doctor told us sometimes it takes up to 24 hours for the patient to react to it, but Landon let them know within the first hour that he wasn't having it. His Stats went way up and his blood pressure dropped dramatically. They resumed the PGE and within a couple hours he was stable again.
We spoke with Dr. Bryant last night and he told us that it is going to take patience to really determine what is the best route to take. We need to wait and let Landon decide. He would like to try to take him off of the PGE at least one more time before they do surgery to replace the valve. During rounds today they decided that since they will be waiting for at least a couple days to do surgery there is no reason to keep him sedated and on the ventilator so today they will be weening him off of those which is great news! This means he will be fully awake and breathing on his own since his first days of life. This means daddy will finally get to hold him. He's been waiting so long :)
We had an exciting morning already today. We got here and found that Landon has a nasty red rash on his neck. They told us that they just discovered it and it's due to moisture and him not being able to move his head. They called a wound specialist and hopefully it'll heal up quickly.
Ryan and I were over his bed and his nurse was monkeying with some stuff when I started to notice him squinting his eyes and slowly he opened them. I'm so happy that every time he's decided to open his eyes we've been here. I think it's because he hears our voices. He had them open just long enough for me to snap some great pictures of him looking up at daddy then he fell back asleep.
I was in the bathroom when I heard an alarm going off, I rushed out to find two nurses and Ryan around Landon. I guess his breathing tube came undone and his nurse wasn't in the room so we had to call her. Ryan found what was wrong and put it back together before she even got back. He's so calm when it comes to stuff like that. Landon is so blessed to have such an amazing papa.
So they just turned his ventilator down from 24 to 20 and their going to give him an hour before they try to turn it down more. Prayer requests for today would be that he reacts well to the weening of the ventilator and the meds and that he is able to pick up breathing on his own again.
We just take things one day at a time. As much as we wish we could just rush through all the hardest parts and get to the recovery phase so we can take him home, we realize that this is going to be a lengthy process. Landon overcomes so much each day with every small change they make for him. He is an amazing child and we are so proud of how he is doing. The nurses all love him and marvel at his strength. He will grip your finger and he won't let it go :) He will do whatever he can to have his hands up by his face no matter how many times they put them down by his sides. Now he has to wear little socks on his hands because he loves to play with his face and put his fingers in his eyes. He actually sucks on his breathing tubes like it's a pacifier :) Even while sedated he is our Landon and we are loving everyday we get to know him more :)
We spoke with Dr. Bryant last night and he told us that it is going to take patience to really determine what is the best route to take. We need to wait and let Landon decide. He would like to try to take him off of the PGE at least one more time before they do surgery to replace the valve. During rounds today they decided that since they will be waiting for at least a couple days to do surgery there is no reason to keep him sedated and on the ventilator so today they will be weening him off of those which is great news! This means he will be fully awake and breathing on his own since his first days of life. This means daddy will finally get to hold him. He's been waiting so long :)
We had an exciting morning already today. We got here and found that Landon has a nasty red rash on his neck. They told us that they just discovered it and it's due to moisture and him not being able to move his head. They called a wound specialist and hopefully it'll heal up quickly.
Ryan and I were over his bed and his nurse was monkeying with some stuff when I started to notice him squinting his eyes and slowly he opened them. I'm so happy that every time he's decided to open his eyes we've been here. I think it's because he hears our voices. He had them open just long enough for me to snap some great pictures of him looking up at daddy then he fell back asleep.
I was in the bathroom when I heard an alarm going off, I rushed out to find two nurses and Ryan around Landon. I guess his breathing tube came undone and his nurse wasn't in the room so we had to call her. Ryan found what was wrong and put it back together before she even got back. He's so calm when it comes to stuff like that. Landon is so blessed to have such an amazing papa.
So they just turned his ventilator down from 24 to 20 and their going to give him an hour before they try to turn it down more. Prayer requests for today would be that he reacts well to the weening of the ventilator and the meds and that he is able to pick up breathing on his own again.
We just take things one day at a time. As much as we wish we could just rush through all the hardest parts and get to the recovery phase so we can take him home, we realize that this is going to be a lengthy process. Landon overcomes so much each day with every small change they make for him. He is an amazing child and we are so proud of how he is doing. The nurses all love him and marvel at his strength. He will grip your finger and he won't let it go :) He will do whatever he can to have his hands up by his face no matter how many times they put them down by his sides. Now he has to wear little socks on his hands because he loves to play with his face and put his fingers in his eyes. He actually sucks on his breathing tubes like it's a pacifier :) Even while sedated he is our Landon and we are loving everyday we get to know him more :)
Saturday, April 7, 2012
The greatest gift!!!
We received the greatest gift today! We were eating lunch with Ryan's parents when Ryan's cell rang. It was his boss. He went into the lobby to speak with her. I figured she was just calling to make sure he was going to be at work on Monday. He was out there for quite a while and I was beginning to worry that maybe something was wrong. Ryan came back to the table and I could tell right away something had happened. He sat down and said that his boss has been reading Landon's blog (I had no idea she even knew about it). She talked to the company and people have given up their paid vacation time so that Ryan can have another week here with us. Me and Michelle just cried, I'm still brought to tears whenever I think about it. I just can't believe that people we don't even know would be so kind to us. I can't even write about it because I am speechless. All I can say is thank you.
Wendy if you are reading this, thank you from the bottom of my heart. This act of kindness has meant the world to us. It means our family can be together another week. It means we can truly celebrate Easter together tomorrow. It means if Landon has to have another surgery on Monday I won't have to sit in that waiting room without his daddy's hand to hold. I cannot thank you enough for giving me such a gift and know that we are praying God pours out his blessings on you and on everyone who have chosen to be such a blessing to us.
Wendy if you are reading this, thank you from the bottom of my heart. This act of kindness has meant the world to us. It means our family can be together another week. It means we can truly celebrate Easter together tomorrow. It means if Landon has to have another surgery on Monday I won't have to sit in that waiting room without his daddy's hand to hold. I cannot thank you enough for giving me such a gift and know that we are praying God pours out his blessings on you and on everyone who have chosen to be such a blessing to us.
Yesterday was one of the longest and most emotional days of my life. As Landon was in the OR they would call us with updates of what was going on. Our hearts would jump every time the phone would ring. Finally we got the call that they were closing and the surgeon would be out to tell us how everything went. Those were a very long 30 min! Dr. Bryant finally came out and asked us to come back into a room with him. We followed him into a room with a couch and a whiteboard. He drew a picture of a heart and began to explain what they did in the OR. Honestly I really don't understand so much of what he said, but when he was explaining about the hole that they accidentally made during the heart cath. He said that before the surgery there was a lot of blood flowing through it, but after the surgery there is NONE. "This is amazing!" Those were his exact words. He was blown away. He said that the hole is pretty much all thick muscle and should just close on it's own now and not be a problem. I just cried and squeezed Ryan's hand. Another miracle!!
He went on to explain that they were successful in opening the valve and that it is working good, but that it's not all perfect. He is still receiving the PGE medicine that's keeping the extra valve open. The doctors don't know if his heart is depending on this extra valve or not. If Landon's heart needs this extra valve then they will go back in his heart through the incision that was already made and they will sew in a new man-made valve for him that will grow with the heart. This operation won't require Landon's heart to go on bypass so that's good, and the surgeon assured us that he had done this type of procedure many times and that there were almost no risks involved. We won't know exactly how the doctors will want to fix everything for a couple more days. The nurses are slowly weaning him off of the ventilator and the PGE and the other medicines to see how he reacts. After that the doctors will have a better idea of what the heart needs to pump Landon's blood and fully saturate his lungs and body. Also, the right ventricle may still be a problem because it is now pumping extra hard because of all the changes they've made. this squeezing is putting a lot of pressure on that side of the heart now so that is another thing they want to keep an eye on. He said that Landon was on his way back to the PICU and we would be able to see him soon, but to be prepared because he would be blue. After he left I cried, this time it was tears of joy not fear. I feel so blessed beyond measure to have this child who God is using to AMAZE the doctors. I realized that through what we thought was a setback and complication to the surgery God used it to bring Himself glory. That just blows me away!
We all went back up to the PICU waiting room until they said that ryan and I could go see him. I was prepared for the worst. When we got there, there was still quite a few people in his room trying to get everything hooked back up. It was extremely hard to see our baby covered in cords and tubes. Even more than we were used to seeing. He has a long bandage over his chest so we couldn't see the incision just a tube coming out of it pumping out the blood from the incision. Soon after they brought him back they did an echo to see how the right ventricle was pumping. This was one of the hardest things for me to watch. Not because it is painful for him in any way, but just seeing them put the goop on his tiny belly and pressing that little wand thing into his little tummy reminded me of every time they did that to me. The realization hit me so hard that I cannot protect him anymore. I would do anything if I could go through this for him, but I can't. Wow, even now I'm brought to tears again. You just feel so helpless as a parent. We're supposed to be the ones protecting and supporting him and right now all we can do is watch our tiny baby fight through this. He looked so lifeless. Just this tiny body surrounded by people speaking doctorese and machines that are keeping him alive and monitoring everything about him.
While we were in the waiting room I received a call from Ronald McDonald house letting me know they had a room for us if we choose to take it. I told her I didn't know yet, that our son was in surgery right now, but I would talk to Ryan and get back to her later. My mind really wasn't able to think about anything except Landon then and the thought of staying away from him makes me really sad. Ryan and I talked about it though and decided that we should call back and accept the room and we could look at it and then decide if we wanted to keep it. So after Landon was settled in his room, we decided to go to the house and check in. I HATE leaving! It is so hard to drive away. It's hard to open our back door and see an empty carseat. We drove up to a huge white house with a statue of Ronald McDonald sitting on a bench out front. We went in and I was blown away at how nice it is. The house manager gave us a tour then handed us our keys. Before seeing the house we really didn't know if we would stay there, but after seeing it Ryan really felt like it would be in my best interest to stay there. He knows if I stay at the hospital with Landon I would probably go days if not weeks without getting fresh air. Sleeping on a pull out chair is not the best and lugging all of my shower stuff down a hospital hall every morning is not ideal. We both decided that the house has everything you could want... except Landon. The hard thing is he's the only thing we want. It was really an answer to prayer to get on at the house though. It usually takes a long time for families to be on the waiting list there, but we were only on for a day and a room opened. They have shuttle service to the hospital every half hour so I can park at the house and save a lot of money not parking at the hospital. They have supper provided every evening and lunch and supper on the weekends so I will save money on food. When talking with the social worker yesterday about it, she was helping me weigh the pros and cons and she said one of the best things about it is being around other families that have a child in the hospital. they are not worse parents because they're away from their kiddos. She said in order to be a good parent you really need to remember yourself and meet your needs too. It helped to hear her say that and I know it would be really good for me to talk to some other moms. So we decided that I'll keep the room.
Ryan and did sleep much better on a real bed last night. We got to the hospital this morning and Landon is doing good. He was stable throughout the night. They tried taking him off Dopamine (blood pressure med) but he didn't react to it well so they put him back on. Today is just going to be a recovery day for him. They are playing with the levels of the sedation medicine and fluid they're giving him . The goals he has are to be weaned off of the ventilator, PGE (med that is keeping valve open), and the sedation medicine. It is tricky though because his body has been relying on these things for so long. It sounds like tomorrow they are going to stop the PGE and see how he does without it. Please pray that he reacts to it well. If we can get him off that we may be able to avoid another trip to the OR.
Tomorrow is our first Easter with Landon. This is exciting, but I'm also going to be really sad because Ryan will be leaving tomorrow around noon so he can get back to Bismarck :( I really don't know how I'm going to handle being here without him, but I know God will get us through.
I cannot thank you enough for your prayers. Yesterday we felt everyones love and the power of their prayers holding us up and carrying us through every hour. We are so blessed.
He went on to explain that they were successful in opening the valve and that it is working good, but that it's not all perfect. He is still receiving the PGE medicine that's keeping the extra valve open. The doctors don't know if his heart is depending on this extra valve or not. If Landon's heart needs this extra valve then they will go back in his heart through the incision that was already made and they will sew in a new man-made valve for him that will grow with the heart. This operation won't require Landon's heart to go on bypass so that's good, and the surgeon assured us that he had done this type of procedure many times and that there were almost no risks involved. We won't know exactly how the doctors will want to fix everything for a couple more days. The nurses are slowly weaning him off of the ventilator and the PGE and the other medicines to see how he reacts. After that the doctors will have a better idea of what the heart needs to pump Landon's blood and fully saturate his lungs and body. Also, the right ventricle may still be a problem because it is now pumping extra hard because of all the changes they've made. this squeezing is putting a lot of pressure on that side of the heart now so that is another thing they want to keep an eye on. He said that Landon was on his way back to the PICU and we would be able to see him soon, but to be prepared because he would be blue. After he left I cried, this time it was tears of joy not fear. I feel so blessed beyond measure to have this child who God is using to AMAZE the doctors. I realized that through what we thought was a setback and complication to the surgery God used it to bring Himself glory. That just blows me away!
We all went back up to the PICU waiting room until they said that ryan and I could go see him. I was prepared for the worst. When we got there, there was still quite a few people in his room trying to get everything hooked back up. It was extremely hard to see our baby covered in cords and tubes. Even more than we were used to seeing. He has a long bandage over his chest so we couldn't see the incision just a tube coming out of it pumping out the blood from the incision. Soon after they brought him back they did an echo to see how the right ventricle was pumping. This was one of the hardest things for me to watch. Not because it is painful for him in any way, but just seeing them put the goop on his tiny belly and pressing that little wand thing into his little tummy reminded me of every time they did that to me. The realization hit me so hard that I cannot protect him anymore. I would do anything if I could go through this for him, but I can't. Wow, even now I'm brought to tears again. You just feel so helpless as a parent. We're supposed to be the ones protecting and supporting him and right now all we can do is watch our tiny baby fight through this. He looked so lifeless. Just this tiny body surrounded by people speaking doctorese and machines that are keeping him alive and monitoring everything about him.
While we were in the waiting room I received a call from Ronald McDonald house letting me know they had a room for us if we choose to take it. I told her I didn't know yet, that our son was in surgery right now, but I would talk to Ryan and get back to her later. My mind really wasn't able to think about anything except Landon then and the thought of staying away from him makes me really sad. Ryan and I talked about it though and decided that we should call back and accept the room and we could look at it and then decide if we wanted to keep it. So after Landon was settled in his room, we decided to go to the house and check in. I HATE leaving! It is so hard to drive away. It's hard to open our back door and see an empty carseat. We drove up to a huge white house with a statue of Ronald McDonald sitting on a bench out front. We went in and I was blown away at how nice it is. The house manager gave us a tour then handed us our keys. Before seeing the house we really didn't know if we would stay there, but after seeing it Ryan really felt like it would be in my best interest to stay there. He knows if I stay at the hospital with Landon I would probably go days if not weeks without getting fresh air. Sleeping on a pull out chair is not the best and lugging all of my shower stuff down a hospital hall every morning is not ideal. We both decided that the house has everything you could want... except Landon. The hard thing is he's the only thing we want. It was really an answer to prayer to get on at the house though. It usually takes a long time for families to be on the waiting list there, but we were only on for a day and a room opened. They have shuttle service to the hospital every half hour so I can park at the house and save a lot of money not parking at the hospital. They have supper provided every evening and lunch and supper on the weekends so I will save money on food. When talking with the social worker yesterday about it, she was helping me weigh the pros and cons and she said one of the best things about it is being around other families that have a child in the hospital. they are not worse parents because they're away from their kiddos. She said in order to be a good parent you really need to remember yourself and meet your needs too. It helped to hear her say that and I know it would be really good for me to talk to some other moms. So we decided that I'll keep the room.
Ryan and did sleep much better on a real bed last night. We got to the hospital this morning and Landon is doing good. He was stable throughout the night. They tried taking him off Dopamine (blood pressure med) but he didn't react to it well so they put him back on. Today is just going to be a recovery day for him. They are playing with the levels of the sedation medicine and fluid they're giving him . The goals he has are to be weaned off of the ventilator, PGE (med that is keeping valve open), and the sedation medicine. It is tricky though because his body has been relying on these things for so long. It sounds like tomorrow they are going to stop the PGE and see how he does without it. Please pray that he reacts to it well. If we can get him off that we may be able to avoid another trip to the OR.
Tomorrow is our first Easter with Landon. This is exciting, but I'm also going to be really sad because Ryan will be leaving tomorrow around noon so he can get back to Bismarck :( I really don't know how I'm going to handle being here without him, but I know God will get us through.
I cannot thank you enough for your prayers. Yesterday we felt everyones love and the power of their prayers holding us up and carrying us through every hour. We are so blessed.
Friday, April 6, 2012
Good Friday
I have never understood the love of Christ more than today. John 3:16 has so much more meaning to me now when it says because God loved the world so much he gave his one and only son. There is NO greater love and sacrifice than that.
Me and Ryan just leaned over our Landon's bed, over all the unplugged tubes and cords, kissed his forehead and told him to be strong and we love him. The tears haven't stopped. I find comfort in knowing that we have a God who understands and sympathizes with us. He has felt this pain, He has watched his child be torn open and he went through that pain because of His extreme love for us. He gave His only son so that our only son could have life. Not just life on this world, but an eternal one. Our child has already known so much pain. He's gone through more medically in three days than some people face in a lifetime. We are terrified today. We are numb. We are holding our breath. Even in the midst of the fear and pain, I can't help but be amazed that today is the day the world celebrates and remembers the sacrifice of our savior. I always thought it was wrong to call today "good" friday. I doubt the disciples and the ones who loved and adored Jesus would have called it good while they were watching their hope be crucified. Praise God we know the outcome of the pain and agony. That is why we can call this day "good". I know God can already see the outcome of this day in Landon's life and I believe that even though it is painful and terrifying right now, God can say it is good because He knows the outcome and He knows that Landon is shining His glory.
Our prayer for Landon's life is that God be glorified through it and His love be shown to the world. This has already been accomplished in such amazing ways. We hate feeling helpless and not being able to be with our baby, but God is with Him. God is not helpless. He is more powerful than any surgeon. He knit Landon together and He can fix his tiny heart in an instant. Our hope is in the God who gave it all up and then resurrected hope again for all mankind.
That is the God we are praying to for our Landon. Thank you for joining us in fighting for our child. We truly are not helpless.
Me and Ryan just leaned over our Landon's bed, over all the unplugged tubes and cords, kissed his forehead and told him to be strong and we love him. The tears haven't stopped. I find comfort in knowing that we have a God who understands and sympathizes with us. He has felt this pain, He has watched his child be torn open and he went through that pain because of His extreme love for us. He gave His only son so that our only son could have life. Not just life on this world, but an eternal one. Our child has already known so much pain. He's gone through more medically in three days than some people face in a lifetime. We are terrified today. We are numb. We are holding our breath. Even in the midst of the fear and pain, I can't help but be amazed that today is the day the world celebrates and remembers the sacrifice of our savior. I always thought it was wrong to call today "good" friday. I doubt the disciples and the ones who loved and adored Jesus would have called it good while they were watching their hope be crucified. Praise God we know the outcome of the pain and agony. That is why we can call this day "good". I know God can already see the outcome of this day in Landon's life and I believe that even though it is painful and terrifying right now, God can say it is good because He knows the outcome and He knows that Landon is shining His glory.
Our prayer for Landon's life is that God be glorified through it and His love be shown to the world. This has already been accomplished in such amazing ways. We hate feeling helpless and not being able to be with our baby, but God is with Him. God is not helpless. He is more powerful than any surgeon. He knit Landon together and He can fix his tiny heart in an instant. Our hope is in the God who gave it all up and then resurrected hope again for all mankind.
That is the God we are praying to for our Landon. Thank you for joining us in fighting for our child. We truly are not helpless.
Thursday, April 5, 2012
Miracles & scary setbacks
Tonight Ryan and I are sleeping on pull out chairs, but we are only a curtain away from our lil man so the inevitable back aches in the morning are completely worth it. Wow, what a day! Days here go incredibly fast and it is unbelievable how much happens in such a short amount of time. I am going to try to make this quick so I can get at least 4 hours of sleep tonight.
We received some amazing news today! When talking with the surgeon who will perform Landon's surgery tomorrow. He told us that Landon's right ventricle is actually just a little smaller than a normal one. Because of this, Landon will not need to have surgery again until he is much older (10, teens, or even 20 or older) I was holding Landon as the surgeon was telling us this and I just closed my eyes and praised God for a miracle. Just a couple months ago, at his last fetal echo, I was told that his right ventricle was "hardly existent" and now I was hearing that it is just a little smaller than normal. Only God could make it grow that quickly! Landon's diagnosis is now completely different then we were originally told. That is the power of prayer! I'm crying as I write this because I know that most of you who will read this have played a role in healing our Landon and there are not words to express the gratitude we have. Landon has been so uplifted in prayer and because of it we will not have to see him go through more surgeries in the next couple years. Please rejoice with us in this victory!!!
With that said, we are now asking for even more prayer. We finally got out of the hospital for the first time today and went out for supper with our parents. After supper Ryan went to the mall to get a couple things with his mom and dad and I asked my parents if they would drop me off at the hospital so I could pump and get some much needed rest. They wanted to walk me up to the room and say good night to Landon. When we got up to Landon's room there was a couple doctors I'd never met doing an echo on him. I stood by his bed and kept switching my gaze from Landon to the monitor and listening to what they were saying. I wasn't understanding much of it, when the doctor said "I may as well explain this to you since you're here now too." He pointed at the screen and showed me where the ventricular septum is. This is the wall of the heart that separates the right from the left ventricle. Then he showed me something that looked like a small hole. He began to explain that they started noticing some changes in Landon early this morning so they wanted to do an echo. It looks like there was a hole burned in the ventricular septum during the heart cath yesterday. We were told that there was a risk of this happening and it is a very serious problem. He said it is fixable but they are probably going to have to postpone his surgery until they can get it fixed. He told us some other things, but I want to wait to say more until we talk with his surgeon in the morning. As he was telling us this I started to cry. I feel like whenever we get some really great news and build up hope something else comes up that steals the joy we had. I was still emotional when Ryan and his parents got here. Ryan hugged me and his mom prayed over us. It would be easy to let this bad news cloud out the great news we received today, but a miracle is a miracle and there is no way that we have forgotten God's faithfulness to Landon and to us. It was just so hard to hear that my baby boy is going to have to go through more.
It is so hard for me to look at my beautiful, perfect little boy and know that there are these problems inside of him. He is so perfect, so tiny, so peaceful. Everyday I fall more in love with him. Even with his face all squished and taped shut I think he is the cutest thing in the world. It is going to be excruciating if we hand him over to the surgeon tomorrow, but we know that it's inevitable. We've been telling him that he's almost done, that it's going to get better. But now with this set back we really don't know how long it will be. Please please please keep praying friends, it works. Landon is already proof of that. He is our miracle and no matter what tomorrow holds God's glory shines through his tiny body. Every moment in his presence is such a gift.
As of now, surgery is still scheduled for tomorrow morning, but the cardiologist team and our surgeon will be here early to do another echo on him and will then decide if they should go through with the surgery or not. I will not have time to blog until later in the day probably, but I will try to at least update my Facebook as we find things out.
God is in control.
We received some amazing news today! When talking with the surgeon who will perform Landon's surgery tomorrow. He told us that Landon's right ventricle is actually just a little smaller than a normal one. Because of this, Landon will not need to have surgery again until he is much older (10, teens, or even 20 or older) I was holding Landon as the surgeon was telling us this and I just closed my eyes and praised God for a miracle. Just a couple months ago, at his last fetal echo, I was told that his right ventricle was "hardly existent" and now I was hearing that it is just a little smaller than normal. Only God could make it grow that quickly! Landon's diagnosis is now completely different then we were originally told. That is the power of prayer! I'm crying as I write this because I know that most of you who will read this have played a role in healing our Landon and there are not words to express the gratitude we have. Landon has been so uplifted in prayer and because of it we will not have to see him go through more surgeries in the next couple years. Please rejoice with us in this victory!!!
With that said, we are now asking for even more prayer. We finally got out of the hospital for the first time today and went out for supper with our parents. After supper Ryan went to the mall to get a couple things with his mom and dad and I asked my parents if they would drop me off at the hospital so I could pump and get some much needed rest. They wanted to walk me up to the room and say good night to Landon. When we got up to Landon's room there was a couple doctors I'd never met doing an echo on him. I stood by his bed and kept switching my gaze from Landon to the monitor and listening to what they were saying. I wasn't understanding much of it, when the doctor said "I may as well explain this to you since you're here now too." He pointed at the screen and showed me where the ventricular septum is. This is the wall of the heart that separates the right from the left ventricle. Then he showed me something that looked like a small hole. He began to explain that they started noticing some changes in Landon early this morning so they wanted to do an echo. It looks like there was a hole burned in the ventricular septum during the heart cath yesterday. We were told that there was a risk of this happening and it is a very serious problem. He said it is fixable but they are probably going to have to postpone his surgery until they can get it fixed. He told us some other things, but I want to wait to say more until we talk with his surgeon in the morning. As he was telling us this I started to cry. I feel like whenever we get some really great news and build up hope something else comes up that steals the joy we had. I was still emotional when Ryan and his parents got here. Ryan hugged me and his mom prayed over us. It would be easy to let this bad news cloud out the great news we received today, but a miracle is a miracle and there is no way that we have forgotten God's faithfulness to Landon and to us. It was just so hard to hear that my baby boy is going to have to go through more.
It is so hard for me to look at my beautiful, perfect little boy and know that there are these problems inside of him. He is so perfect, so tiny, so peaceful. Everyday I fall more in love with him. Even with his face all squished and taped shut I think he is the cutest thing in the world. It is going to be excruciating if we hand him over to the surgeon tomorrow, but we know that it's inevitable. We've been telling him that he's almost done, that it's going to get better. But now with this set back we really don't know how long it will be. Please please please keep praying friends, it works. Landon is already proof of that. He is our miracle and no matter what tomorrow holds God's glory shines through his tiny body. Every moment in his presence is such a gift.
As of now, surgery is still scheduled for tomorrow morning, but the cardiologist team and our surgeon will be here early to do another echo on him and will then decide if they should go through with the surgery or not. I will not have time to blog until later in the day probably, but I will try to at least update my Facebook as we find things out.
God is in control.
Wednesday, April 4, 2012
Landons First Day
I cannot believe it was only yesterday that Landon was born. He has already experienced so much in his short amount of time here. This morning Ryan and I went down to the NICU right away and there was our bright eyed boy, wide awake. The nurse he had today calls him "the thinker" because he is just so aware and curious about everything that's going on around him. She told me I could sit down and hold him which I was thrilled about because I really didn't get to see him very long yesterday. I sat down and she carefully placed him in my arms. I could of stayed there all day! He stared at me then he'd stare up at his daddy who was busy taking a ton of pictures. He makes the silliest faces, I've never seen a newborn make so many different expressions. Me and Ryan just watched him and laughed, he's so silly :) He also likes to keep his hand up by his face all the time, which I think is so cute because thats always how he was in the ultra sound pictures. He eventually fell asleep in my arms... he looked so peaceful and happy.
I reluctantly gave him back to the nurse. When she took him she accidentally grabbed my IV cord along with all of his cords. I thought about how annoying that one tube is for me and here is my baby boy only 1 day old having to be hooked up to a dozen different cords. He is such a lil trooper.
We went back to our room and shortly after a man came in and introduced himself. He told us he would be the head surgeon during Landon's heart catheterization today. He explained the procedure to us and informed us of the risks. He confirmed the hope we gained from our knowledge yesterday that if this surgery went successfully Landon would not need open heart surgery. He said that he would still need to stay two weeks to recover, but no other surgeries would be needed at this time. He explained that what they would do is place a long tiny tube up into Landon's thigh all the way to his heart. This tube will give them a better idea of how his blood is flowing and their hope is that they can use it to make an opening where the valve should be that Landon does not have. This shunt would then allow blood to flow to the lungs and would be a temporary fix until the next surgery. He explained that this will not make his heart "normal", this will only fix the problem temporarily. He told us that Landon will be sedated and will have breathing tubes inserted, but they should be able to come out shortly after the surgery. He made it very clear that this is not an easy procedure. The spot where the tube has to enter is very small and often hard to find. There is a risk of them going through the walls of his heart which would not be good at all. He explained more risks, answered our questions, we signed some consent forms, and off he went. The surgery was scheduled for 10:50 and he told us that it should only take an hour. The nurse in the NICU told us she would call after his surgery when we could go down and see him.
Ryan and I were very hopeful. Just the thought of him not having to have an open heart surgery yet and maybe being able to take him home so much sooner was more than we hoped for. So we went about our day which consisted of meeting with different people, signing different papers, calling insurance companies, and trying to pump milk every couple hours in between all the interruptions... not easy. Our day went so fast and before we knew it, it was 2:30 and we had yet to here from the NICU. I was beginning to get a little worried, but I told myself that the surgeon probably just exaggerated on how fast the procedure would take. We were in the room when he arrived. I could tell right away that it didn't go as well as expected. He sat down in the chair across from us and began to tell us that they could not find the place where the shunt needed to go. He said he tried until he just wasn't comfortable putting Landon through anymore so it was unsuccessful. He gave us a couple images of Landon's heart and showed us where the blood flow just stops. This grown man with so much experience was clearly exhausted and disappointed. He told us they would probably be looking at doing the open heart surgery on Friday or Monday, but he needs to meet and discuss the future plans with a lot of people tomorrow. We thanked him for trying. I know it couldn't of been easy for him to quite after trying for 3 and a half hours and I'm so glad he didn't risk Landon's safety over it. After he left Ryan and I just sat there for a while letting the hope we had go. We called our parents to let them know then all of them came over. We talked for awhile while we waited to hear from the NICU that Landon was back down there. I finally got the number and called down there. After being on hold for a long time a nurse came on the line and told me that he was just waking up and they had to give him more medicine to keep him sedated that's why it took her so long. She said we could come down and see him now though. Ryan took our parents down and I stayed so I could pump since I got interrupted by the surgeons visit last time.
When they got back I could tell that Ryan was sad. I asked him if it was going to make me sad seeing him and he said probably. They want to keep him sedated and he's on a ventilator now so it's different. After our parents left we went down there together. I thought I was prepared to see him, but nothing can prepare you to see your baby who was so awake and aware, sedated. His little face is all squished together by tape so the tube in his throat doesn't move. He is still trying to breath on his own so sometimes his little chest will pause for a couple seconds and then the machine will kick in and it'll kind of convulse quickly. I couldn't help but tear up when I looked at him. I know he's safe. I know God is holding him and so near to him. His nurse tonight told us that there will be a big meeting with all the teams tomorrow to discuss future plans, but it sounds like if the surgery is scheduled for Friday or Monday they will probably want to keep him sedated and on the ventilator until after. This broke my heart to hear. I know now God was giving me such a gift this morning when I got to be with him and he was so happy and silly and then he just fell into a peaceful sleep all of a sudden. I feel like it was Gods way of showing me that he is at peace. He's still our silly, beautiful, little boy inside that little body covered with tubes, cords, and bandages. He is our lil trooper. So strong, so brave.
Please pray for wisdom for the doctors as they meet tomorrow and decide what the next steps are. Pray for strength for Ryan and I. It is so hard to watch our baby go through this, we feel helpless. Pray for our Landon, that his little body will continue to be strong.
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