Yesterday morning when we arrived at the hospital we were told that they were just waiting for a room to be ready and then Landon would be moving up to the recovery floor. We were thrilled when we were told we would be moving in an hour. We hurried and packed up all our things and placed them on the cart. I walked the halls and snapped pictures of the PICU which has been our home for over two weeks. I was surprised at the emotions I felt. It has not been a terribly long time that we have been here, but when everyday is so new, so monumental, so scary, so emotional... well you just can't explain it. We've gone through so much and had so many different thoughts and feelings while sitting in Landon's room in the PICU, we've sat with family in the waiting room. We've walked to the water fountain countless times, listened to rounds, gotten to know all the nurses and really like a few, came back at ridiculous hours just to check on Landon and give him kisses. We've sat around his bed every morning, with a coffee in one hand and the other stroking our beautiful son or letting his tiny hand wrap around one of our fingers. There's been a lot of tears shed in that room, but the amazing thing is, there's probably been more laughter :) It is where Ryan first got to hold Landon. It's where I fed him his very first bottle.... so many memories.
They brought in a HUGE crib bed for Landon. He looked so tiny in it. We walked behind the nurse as she wheeled Landon to the elevator, up three floors, down a very long hallway, and into his new room. It is so nice!! Huge windows with beautiful scenery, couch that turns into twin size bed, big tv with blue ray player, fridge and microwave, and most importantly... a SHOWER. That was all I needed to see to decide that I would move out of Ronald McDonald and in with Landon. We sat down on the couch as the nurse explained to us how things work on this floor and it didn't take long for us to realize this is NOTHING like the NICU. The nurse told us that they really encourage the family to do everything they can. She said they try to check on their patients at least once an hour, but sometimes it's every couple hours if no alarms are going off and they get busy with another patient. She told us what they want to see before they can send him home and she confirmed that he is doing well and looks like he belongs on the floor. When she was finished, she left and a door closed behind her. For the first time, I felt like we were on our own with Landon.... and this terrified me. We hadn't eaten yet and needed to go to Ronald McDonald to get our things, but how could we leave him? We are used to him having a nurse that is either with him in the room, watching and monitoring him from the window right outside his room, or just a couple doors away from him at all times. Someone checking on him maybe every hour? That's worse than leaving him with a babysitter! We fearfully left him to go get our things, but every moment we were away I was picturing him laying in this huge bed, crying all by himself :( We were not gone long and I was glad to find the nurse in his room when we returned. She told us that she just removed the oxygen thing from his nose. I was so glad to hear this because without that it would be so much easier to hold him. After she left I got his bottle ready and fed him. After he was done I was just holding him, when he got the hiccups. He gets them quite often and he hates them. I imagine they are really painful with his incision. He was getting more and more upset and his alarm kept going off. We were watching his monitor and his sats were dropping from the high 70s into the 60s then the low 60s, when it reached 59, I looked down at him and his face was blue. Ryan hit the call light and the nurse came in soon. I put him back into the bed and she put his oxygen back on him. Soon after his sats returned to the 80s.
After the nurse left I sat on the couch and just wanted to cry. So many fears overwhelmed me all of a sudden. I feel like I don't know how to care for my child. I feel like I missed out on the first weeks of his life and I'll never get that back. We've done what we could up to this point, but really we haven't been the ones taking care of him, all of his needs have been met by his nurses. I could probably count on one hand the number of times I've fed him and changed his diaper. This makes me so sad. Now they expect me to just know what to do? What if we take him home and he cries and turns blue again? We're not going to have oxygen to just pop onto him. We aren't even going to have a monitor in our apartment. How will we know what his sats are at every second? Ryan could tell I was feeling overwhelmed and he told me that we were going to be fine. He said that all new parents experience these feelings, we're just experiencing them later.
As the day went on they tried a couple more times to wean Landon off of the oxygen. He's on such a low amount they don't think he needs it, but for some reason he seems to think that he does. Every time they took it off of him, he did fine for a while, but whenever he gets upset and cries, his sats drop. I'm not going to lie, this TERRIFIES me.
Last night I found myself calming down enough to enjoy some family time. It felt good to not have a nurse hovering over us all the time. It was so nice to be in a room with our son that has a closing door that isn't completely made out of glass. Ryan and I played a game and watched the movie "We Bought a Zoo". It came out on Landon's birthday so we figured we should buy it for him to watch when he's older. I could actually just hold him while we watched it, such a great feeling. Something moms probably take for granted because their babies have never been hooked up to 10 different machines.
We were told by the nurse that came on in the evening that they are hoping to get Landon out of here on Monday. I was SHOCKED to hear this!!! I thought at least a week on this floor and Ryan was planning on leaving for Bismarck on Sunday. The nurse told us that Landon is doing everything he needs to be doing. He's off of everything, if they can just get him to be ok without the oxygen. He's eating good already. She said that all he needs is a car seat check, which I think they are going to do today and a hearing test on Monday. She said after those things he should be good to go since Ryan and I took our cardiac and cpr class last week already.
As I'm sure you can imagine, Ryan and I are thrilled with this news and also scared. All we've wanted is to take Landon home and get into a family routine, but now that it's so close to happening, we don't feel ready yet. I'm sure no one ever feels quite ready to take their first baby home, but how can you when every time he cries, he turns blue?
Please keep us in your prayers. We're reaching the end of this portion of our journey and it's daunting as we look ahead into the unknown. Tomorrow we will be checking out of Ronald McDonald and moving our other vehicle to my aunts house. We're not sure how we'll get it back to Bismarck yet because I'll be riding in the backseat with Landon on the way home. Landon's carseat check will also be today. This is not the kind of carseat check I was expecting. The nurse told us we'll need to bring his carseat in and he'll be placed in it for two hours and monitored to see how his sats do. There is so much going on, it's an exciting, but scary time for us. It helps knowing we have so much love and support around us and to go home to. Thank you everyone! We couldn't have reached this point without your prayers.
Wendy,
I don't know if you will read this before Monday, but if you do, could you give Ryan a call? He doesn't know how to get a hold of you during the weekend.
Saturday, April 21, 2012
Thurs. April 19th
Although, they kept telling us the breathing tubes would be out within the hour, it wasn't until around 5:00PM that they were finally able to take them out. I found it strange that they didn't take out the feeding tube though. Landon was SO mad! He was screaming and pulling at the tube. I asked the nurse why he had to have it since he didn't last time they removed the breathing tubes. She gave me an answer, but after she left our nurse called her charge nurse and got the ok to remove it.
It was so awesome to see more and more tubes and cords being taken off of him. He got to the point where I could take him out of his bed ON MY OWN to hold him! He had such a busy day!
It was so awesome to see more and more tubes and cords being taken off of him. He got to the point where I could take him out of his bed ON MY OWN to hold him! He had such a busy day!
Thursday, April 19, 2012
Surgery Day
Landon's surgery yesterday took around 3 hours. Afterwards Dr. Bryant, his surgeon came and told us that it went very well. He told us he was stable and his sats were in the 80s. He said he anticipated that the breathing tube could be taken out later that day and he could start eating right away.
Landon has to be very awake and agitated before they can take out the breathing tube just so they know he'll be able to breath properly on his own. Landon was to tired though and he slept through the night. As of now, we've been told that he's completely off of all his pain meds so that he'll wake up. He's been awake the whole time we've been here this morning and initiating breaths on his own so the breathing tube should be out within an hour. We've also been told that he will probably move up to the recovery floor today!! Such great news!! Progress!!
Yesterday, before the surgery Dr. Bryant told us that he will have to come back in a couple of months to have the shunt taken out if the right side of his heart does what they are hoping it will do. They want the right ventricle's walls to relax and thin out and hopefully begin to grow. If the right ventricle does not grow then we will have to take the route of a single ventricle heart child and begin to make it so that the left side of his heart can perform all the functions usually performed by the right.
We are just taking things one step at a time though and right now we are just so thankful that his surgery was successful yesterday. Now we are moving on to recovery!! We are so proud of our little fighter. He has been through SO much in two short weeks, he deserves a break. We can't wait to take him home!! I will keep you posted about how recovery is going and when it looks like we'll be able to finally try out that carseat :)
Landon has to be very awake and agitated before they can take out the breathing tube just so they know he'll be able to breath properly on his own. Landon was to tired though and he slept through the night. As of now, we've been told that he's completely off of all his pain meds so that he'll wake up. He's been awake the whole time we've been here this morning and initiating breaths on his own so the breathing tube should be out within an hour. We've also been told that he will probably move up to the recovery floor today!! Such great news!! Progress!!
Yesterday, before the surgery Dr. Bryant told us that he will have to come back in a couple of months to have the shunt taken out if the right side of his heart does what they are hoping it will do. They want the right ventricle's walls to relax and thin out and hopefully begin to grow. If the right ventricle does not grow then we will have to take the route of a single ventricle heart child and begin to make it so that the left side of his heart can perform all the functions usually performed by the right.
We are just taking things one step at a time though and right now we are just so thankful that his surgery was successful yesterday. Now we are moving on to recovery!! We are so proud of our little fighter. He has been through SO much in two short weeks, he deserves a break. We can't wait to take him home!! I will keep you posted about how recovery is going and when it looks like we'll be able to finally try out that carseat :)
Tuesday, April 17, 2012
Landon's next surgery was scheduled for Thursday morning, but tonight the doctors decided to move it to tomorrow morning. His stats were in the low 60s for a while yesterday so thats why they've decided to do it even sooner. They are not going to try to turn off the PGE before surgery because based on the echo of his heart it will do nothing except cause him distress to take away the medicine.
This came as such a surprise to us that they want to move the surgery up a whole day. It was hard holding Landon tonight, knowing that tomorrow night he'll have the tubes back in him and he won't be responsive to us. It's going to be so hard seeing him like that again. I feel like we've taken so many steps forward this week, it breaks my heart he has to go back to how he was. As our nurse told us this morning though, this will just bring us one step closer to bringing him home. It's still progress even though it feels like we're back tracking. She told us his recovery will be much faster this time. He will probably only need the breathing tube and the sedation for two days.
Please keep us in your prayers tomorrow. His surgery begins at 8:00AM. Pray that the surgery goes smoothly and that the shunt is successful in accomplishing what the doctors want it to. It is our fear that they will find something else wrong that needs to be fixed. We SO want this to be the last big thing so he can get back to the recovery phase and eating on his own again so we can take him home soon.
This came as such a surprise to us that they want to move the surgery up a whole day. It was hard holding Landon tonight, knowing that tomorrow night he'll have the tubes back in him and he won't be responsive to us. It's going to be so hard seeing him like that again. I feel like we've taken so many steps forward this week, it breaks my heart he has to go back to how he was. As our nurse told us this morning though, this will just bring us one step closer to bringing him home. It's still progress even though it feels like we're back tracking. She told us his recovery will be much faster this time. He will probably only need the breathing tube and the sedation for two days.
Please keep us in your prayers tomorrow. His surgery begins at 8:00AM. Pray that the surgery goes smoothly and that the shunt is successful in accomplishing what the doctors want it to. It is our fear that they will find something else wrong that needs to be fixed. We SO want this to be the last big thing so he can get back to the recovery phase and eating on his own again so we can take him home soon.
Monday, April 16, 2012
Life Is Fragile
Yesterday I was sitting by Landon's bed talking to a doctor when all of a sudden alarms started going off everywhere. She ran out of the room into the room next to Landon's. Many other doctors swarmed into the room and hallway. I could hear her screaming and telling everyone in the room to get a mask on! I watched as the mother of the child next door stood there numb. I saw the fear in her eyes and it made me cry. As more doctors and machines came the mother walked to the waiting room. You could tell that this was serious. The nurses stood behind the long desk whispering, some were holding back tears as well. Our nurse calmly came in and pulled the curtain, but I could still see out the side window. After a while things settled and I could tell that the child was stable again. Doctors began to exit the room and take off their gloves and masks. Large machines were still being brought into the room, I'm sure many tests had to be done.
Witnessing this shook my heart. It made me realize just how fragile these heart kids are. Landon has been so blessed and is doing so well, but everything can change in just a moment. Every room on this floor holds a fragile heart of a strong child. Everyday is a victory for them. Everyday a battle. There are kids on this floor who are waiting for a new heart. Their families visit each day and sit by their beds without their child ever acknowledging their presence. They are being kept alive on a machine until a heart becomes available. I can't imagine. These families are strong. Being the parent of a heart child means never taking anything for granted. The parents here are not concerned with their child going to the best school or being good at sports, they just want their child to be well enough to come home again.
I pray that no matter what happens in the future. Whether Landon recovers and his heart grows with him or if we have many more hospital visits and surgeries ahead of us, I hope we never forget to cherish every moment. I pray we always remember what is really important. I hope we are a family that is familiar with suffering, and don't forget to help those in need as we have been helped. To comfort those who are hurting as we have been comforted. It is my fear that we will live a "normal" life. I can't believe I am saying this because months ago all I wanted was our normal back, but through our experiences with Landon God has opened our eyes to a new world that we didn't know existed before. It is a scary world, full of pain and suffering, but in this world we know what really matters... life. It can slip away in a moment, before an alarm is even sounded, so we never forget those good-bye and good-night kisses and we never forget to tell our children and those close to us that we love them because life is so fragile.
Witnessing this shook my heart. It made me realize just how fragile these heart kids are. Landon has been so blessed and is doing so well, but everything can change in just a moment. Every room on this floor holds a fragile heart of a strong child. Everyday is a victory for them. Everyday a battle. There are kids on this floor who are waiting for a new heart. Their families visit each day and sit by their beds without their child ever acknowledging their presence. They are being kept alive on a machine until a heart becomes available. I can't imagine. These families are strong. Being the parent of a heart child means never taking anything for granted. The parents here are not concerned with their child going to the best school or being good at sports, they just want their child to be well enough to come home again.
I pray that no matter what happens in the future. Whether Landon recovers and his heart grows with him or if we have many more hospital visits and surgeries ahead of us, I hope we never forget to cherish every moment. I pray we always remember what is really important. I hope we are a family that is familiar with suffering, and don't forget to help those in need as we have been helped. To comfort those who are hurting as we have been comforted. It is my fear that we will live a "normal" life. I can't believe I am saying this because months ago all I wanted was our normal back, but through our experiences with Landon God has opened our eyes to a new world that we didn't know existed before. It is a scary world, full of pain and suffering, but in this world we know what really matters... life. It can slip away in a moment, before an alarm is even sounded, so we never forget those good-bye and good-night kisses and we never forget to tell our children and those close to us that we love them because life is so fragile.
Friday, April 13, 2012
Update (April 13th, 2012)
It seems like forever since I have written. Time flies here, and it is hard to find the time to write sometimes. If I have the choice between writing a blog or holding Landon and studying him for hours I'm going to choose him every time.
Wednesday, April 11
The sun did shine much brighter on Wednesday. Landon got his breathing tube out that morning. It was hard to watch them pull it out and afterwards you could tell his throat hurt terribly. He just kept sticking out his tongue and blowing bubbles. He'd wrinkle his face and open his mouth so wide but no cry would come out. Finally after quite a while he began to let out squeaky little cries. My boy has his voice again :) I don't think I will ever get sick of hearing him cry (ask me in a couple months ;) . Ryan and I were so enthralled with him. Every noise he made was fascinating to us because we hadn't heard him since the day he was born. We just hung out in the room and waited. He seemed to be doing great. Every time the doctors came in to check on him they just confirmed that everything looked really good. We were told that we could hold him in a couple hours. Ryan got a call from his supervisor and left the room for a while. When he came back the nurse asked if he wanted to hold him? He was so excited and nervous as the nurse placed Landon in his arms. I snapped a million pictures. We both were smiling from ear to ear. We finally reached this mountaintop milestone and everything we faced the past couple days just didn't matter as we gazed into our son's face. After Ryan was done holding him he took me aside and told me that his supervisor told him he could have as much time off as he needed. She told him that she talked to his client and told them that he had a family emergency so the project he was working on would have to wait for a while. She told Ryan not to worry that they would find the hours he needed and she understands that if he came back his mind wouldn't be there. Ryan told her that he will be back as soon as Landon has his next surgery and is recovering well. I just stood there in disbelief. I still don't know how this is possible. I'm not going to ask questions, I just praise God for blessing Ryan with such an amazing company to work for. I think back to when were engaged and he was in school. We would pray every night that God would lead us to the right job for him. All the applications he sent out, all the possible jobs that fell through until finally this company in Bismarck, ND called him. I didn't even know where Bismarck was and frankly we both wanted to be further away from MN haha. Looking back I can see how God was working everything out and providing for us and preparing for Landon even then. I didn't know companies existed that cared so much about their employees and their families. We feel extremely blessed to be a part of that and someday I hope we can return the blessing. It was like Ryan was a different person the rest of the day, like a weight had suddenly been lifted off of him.
I held Landon for a good two hours when they brought me a bottle. I was so excited to get to give him his first bottle. It took a while to get him to the point where he was awake enough to take it. We were all so excited as he began to suck. He did a great job! Another milestone!
Thursday, April 12
Thursday morning I woke up early to pump, but started getting really bad cramps. I could hardly make it to the bed to lay down. I was crying out in pain. They felt more like contractions then cramps. I actually entertained the thought for a couple seconds that maybe I had another baby inside of me and I was in labor haha. It's funny thinking back, but at the time I was in pain and recalling every episode I've ever watched of "I didn't know I was pregnant". Ryan was getting ready to leave to go back to Bismarck. He needs to get some stuff from home, check our mail, turn in some documents for things, and run some other needed errands. He was really worried about me and didn't want to leave me by myself. I told him I would be fine. My parents were on their way to pick me up and bring me to the hospital. I made myself get up and get ready, said good-bye to Ryan, then laid back down until my parents got there. The cramps weren't getting better and it was painful to stand and walk, but I was determined to be with my baby. We got there and I sat with Landon for as long as I could, but I just felt like I was going to pass out. When his nurse came back into the room I told her that I really wasn't feeling well and as hard as it is I was going to go back to the house and get some rest. I asked her if my parents could stay in the room with him while I was gone. She said that would be fine and told me to get some rest and not worry about him.
So I went back to the house and slept for the next four hours. When I woke up I felt much better and just wanted to get back to Landon. My dad brought me back to the hospital and I just sat next to his bed. It still really hurt to move. I was glad when the nurse told me I was right on time for his feeding. I tried to feed him, but he was so tired he wasn't taking it. The speech therapist was in his room at the time and had me sit him up in his bed to try to wake him up. I was standing by his bed holding him up and trying to listen to what the therapist was saying when all of a sudden I got really dizzy and nauseous. I tried to keep listening but it got to the point where I was thinking I'm either going to drop Landon, throw up on him, or faint. As embarrassing as it was I told the therapist that I needed to sit down. He took Landon and finished his feeding for me. I stayed at the hospital a couple more hours then went out to eat to celebrate my moms birthday. After I said good night to Landon, I went back to the house and collapsed into bed.
I'm realizing that I need to take more time for myself. I forget that it was less then two weeks ago that I had Landon. As soon as he was born everything went so fast and all of my focus turned to him. The first week was so crazy and stressful I had no time to rest and heal. I think it's catching up to me now.
Today, April 13
Today I woke up feeling much better. I tried taking the shuttle to the hospital and learned that if it doesn't see you, it doesn't stop. So I waited in the entry way for another half hour and made sure I was outside in the rain the next time it drove by, lesson learned. Said good-bye to grandma and grandpa Ray today. Grandma and grandpa Max left on Monday. Ryan will be returning from Bismarck tomorrow so for the first time it's just Landon and me. I love just sitting by his bed and staring at him. I sing to him and talk to him. He is like a different baby now. Ever since they got that breathing tube out of him and swaddled him in a blanket he is so content. He would love to sleep all day. He does not like anytime they have to unswaddle him. He was so exposed the first week of his life and I think now he feels like he got his wish and he's back in Mommas tummy. His feedings are going pretty well. The doctors are happy with how much he is eating. The speech therapist explained to me that for heart babies eating is hard work. He's going to have some feedings where he does great and others where he's just too tired. I have found this to be so true with Landon. He has a really hard time waking up to eat. When he's eating he breaths really fast and his heart beats like crazy. You have to really watch him to make sure he's breathing between drinking because he'll forget and then he chokes. Scares mom to death when this happens, but I'm learning. Today he's taken two bottles for me and he did really great, it just takes a lot of patience. Overall though the doctors are amazed with how well he is doing. Yesterday he got all but one of the wires and tubes taken out of his belly button. He's now just on a tiny bit of oxygen. Echo's have shown that since taking out the breathing tube there is now some flow through his tricuspid (really don't know if I spelled that right) valve into his right ventricle where before there was no flow. This is huge! Plans are to keep getting him to eat and just let him breath on his own and do his thing. They will do another echo on Monday and, as of now, they plan on turning off the PGE again on Tuesday and seeing how he does. It sounds like there is a chance that his right ventricle is relaxing and the blood may start flowing so well that he may do just fine without the PGE. If he doesn't tolerate it, like last time, they will make immediate plans for surgery. So right now he's just living the life of a (somewhat) normal baby. Sleeping... eating... diaper changes... he is content and I can't even tell you how great it is for me and Ryan to see him happy again. He is still full of expressions and cute as ever. Lots of the nurses stop in from time to time just to see him because he is so adorable. He is the youngest child on the floor so he's got lots of fans :)
We are so proud of our Landon! Thank you everyone for all of the prayers. I will try to keep updates coming. I know so many of you pray for Landon on a daily basis and love hearing how he's doing. Ryan added a photos tab to the blog so we'll try to keep updating that as well with pictures of our handsome lil man.
Wednesday, April 11
The sun did shine much brighter on Wednesday. Landon got his breathing tube out that morning. It was hard to watch them pull it out and afterwards you could tell his throat hurt terribly. He just kept sticking out his tongue and blowing bubbles. He'd wrinkle his face and open his mouth so wide but no cry would come out. Finally after quite a while he began to let out squeaky little cries. My boy has his voice again :) I don't think I will ever get sick of hearing him cry (ask me in a couple months ;) . Ryan and I were so enthralled with him. Every noise he made was fascinating to us because we hadn't heard him since the day he was born. We just hung out in the room and waited. He seemed to be doing great. Every time the doctors came in to check on him they just confirmed that everything looked really good. We were told that we could hold him in a couple hours. Ryan got a call from his supervisor and left the room for a while. When he came back the nurse asked if he wanted to hold him? He was so excited and nervous as the nurse placed Landon in his arms. I snapped a million pictures. We both were smiling from ear to ear. We finally reached this mountaintop milestone and everything we faced the past couple days just didn't matter as we gazed into our son's face. After Ryan was done holding him he took me aside and told me that his supervisor told him he could have as much time off as he needed. She told him that she talked to his client and told them that he had a family emergency so the project he was working on would have to wait for a while. She told Ryan not to worry that they would find the hours he needed and she understands that if he came back his mind wouldn't be there. Ryan told her that he will be back as soon as Landon has his next surgery and is recovering well. I just stood there in disbelief. I still don't know how this is possible. I'm not going to ask questions, I just praise God for blessing Ryan with such an amazing company to work for. I think back to when were engaged and he was in school. We would pray every night that God would lead us to the right job for him. All the applications he sent out, all the possible jobs that fell through until finally this company in Bismarck, ND called him. I didn't even know where Bismarck was and frankly we both wanted to be further away from MN haha. Looking back I can see how God was working everything out and providing for us and preparing for Landon even then. I didn't know companies existed that cared so much about their employees and their families. We feel extremely blessed to be a part of that and someday I hope we can return the blessing. It was like Ryan was a different person the rest of the day, like a weight had suddenly been lifted off of him.
I held Landon for a good two hours when they brought me a bottle. I was so excited to get to give him his first bottle. It took a while to get him to the point where he was awake enough to take it. We were all so excited as he began to suck. He did a great job! Another milestone!
Thursday, April 12
Thursday morning I woke up early to pump, but started getting really bad cramps. I could hardly make it to the bed to lay down. I was crying out in pain. They felt more like contractions then cramps. I actually entertained the thought for a couple seconds that maybe I had another baby inside of me and I was in labor haha. It's funny thinking back, but at the time I was in pain and recalling every episode I've ever watched of "I didn't know I was pregnant". Ryan was getting ready to leave to go back to Bismarck. He needs to get some stuff from home, check our mail, turn in some documents for things, and run some other needed errands. He was really worried about me and didn't want to leave me by myself. I told him I would be fine. My parents were on their way to pick me up and bring me to the hospital. I made myself get up and get ready, said good-bye to Ryan, then laid back down until my parents got there. The cramps weren't getting better and it was painful to stand and walk, but I was determined to be with my baby. We got there and I sat with Landon for as long as I could, but I just felt like I was going to pass out. When his nurse came back into the room I told her that I really wasn't feeling well and as hard as it is I was going to go back to the house and get some rest. I asked her if my parents could stay in the room with him while I was gone. She said that would be fine and told me to get some rest and not worry about him.
So I went back to the house and slept for the next four hours. When I woke up I felt much better and just wanted to get back to Landon. My dad brought me back to the hospital and I just sat next to his bed. It still really hurt to move. I was glad when the nurse told me I was right on time for his feeding. I tried to feed him, but he was so tired he wasn't taking it. The speech therapist was in his room at the time and had me sit him up in his bed to try to wake him up. I was standing by his bed holding him up and trying to listen to what the therapist was saying when all of a sudden I got really dizzy and nauseous. I tried to keep listening but it got to the point where I was thinking I'm either going to drop Landon, throw up on him, or faint. As embarrassing as it was I told the therapist that I needed to sit down. He took Landon and finished his feeding for me. I stayed at the hospital a couple more hours then went out to eat to celebrate my moms birthday. After I said good night to Landon, I went back to the house and collapsed into bed.
I'm realizing that I need to take more time for myself. I forget that it was less then two weeks ago that I had Landon. As soon as he was born everything went so fast and all of my focus turned to him. The first week was so crazy and stressful I had no time to rest and heal. I think it's catching up to me now.
Today, April 13
Today I woke up feeling much better. I tried taking the shuttle to the hospital and learned that if it doesn't see you, it doesn't stop. So I waited in the entry way for another half hour and made sure I was outside in the rain the next time it drove by, lesson learned. Said good-bye to grandma and grandpa Ray today. Grandma and grandpa Max left on Monday. Ryan will be returning from Bismarck tomorrow so for the first time it's just Landon and me. I love just sitting by his bed and staring at him. I sing to him and talk to him. He is like a different baby now. Ever since they got that breathing tube out of him and swaddled him in a blanket he is so content. He would love to sleep all day. He does not like anytime they have to unswaddle him. He was so exposed the first week of his life and I think now he feels like he got his wish and he's back in Mommas tummy. His feedings are going pretty well. The doctors are happy with how much he is eating. The speech therapist explained to me that for heart babies eating is hard work. He's going to have some feedings where he does great and others where he's just too tired. I have found this to be so true with Landon. He has a really hard time waking up to eat. When he's eating he breaths really fast and his heart beats like crazy. You have to really watch him to make sure he's breathing between drinking because he'll forget and then he chokes. Scares mom to death when this happens, but I'm learning. Today he's taken two bottles for me and he did really great, it just takes a lot of patience. Overall though the doctors are amazed with how well he is doing. Yesterday he got all but one of the wires and tubes taken out of his belly button. He's now just on a tiny bit of oxygen. Echo's have shown that since taking out the breathing tube there is now some flow through his tricuspid (really don't know if I spelled that right) valve into his right ventricle where before there was no flow. This is huge! Plans are to keep getting him to eat and just let him breath on his own and do his thing. They will do another echo on Monday and, as of now, they plan on turning off the PGE again on Tuesday and seeing how he does. It sounds like there is a chance that his right ventricle is relaxing and the blood may start flowing so well that he may do just fine without the PGE. If he doesn't tolerate it, like last time, they will make immediate plans for surgery. So right now he's just living the life of a (somewhat) normal baby. Sleeping... eating... diaper changes... he is content and I can't even tell you how great it is for me and Ryan to see him happy again. He is still full of expressions and cute as ever. Lots of the nurses stop in from time to time just to see him because he is so adorable. He is the youngest child on the floor so he's got lots of fans :)
We are so proud of our Landon! Thank you everyone for all of the prayers. I will try to keep updates coming. I know so many of you pray for Landon on a daily basis and love hearing how he's doing. Ryan added a photos tab to the blog so we'll try to keep updating that as well with pictures of our handsome lil man.
Tuesday, April 10, 2012
Constant changes
Our life has become so exhausting and emotionally draining. Today was hard. We were told Landon would have his breathing tube removed this morning, but during rounds this morning they decided to do the shunt tomorrow or soon this week. So we started preparing ourselves for another surgery. We talked with doctors off and on and asked them questions, but nobody can really give us for sure answers about what is going to happen because they make all decisions as a team and each person in the team kind of has their own idea of what they think will be done or what they think should be done. As the day went on the plan changed and it no longer looked like there would be another surgery for at least a week. So the question became to take take out the tube now or to keep it in?
Ryan and I ran to Target to get some things and when we got back there was a circle of 11 doctors outside of Landon's room. We were glad we made it back in time for evening rounds. As we were listening I just became more and more disturbed. There are so many different strong opinions about what should be done to Landon. One of the main doctors feels very strongly that his breathing tube should be taken out and he will do just fine. Dr. Bryant, our surgeon does not want the tube taken out because he will have to have it put back in for surgery next week. It is very concerning for a parent to know that there is disagreement amongst the team that is making the decisions that are so important to the life of your child. Talking to the nurse afterwards about what was said during rounds, she told us that it is dangerous to keep a breathing tube in for so long, if they decide to keep it in until after surgery they would be risking him getting pneumonia or other infections.
Ryan and I know that we are Landon's advocates, but right now we just feel so helpless. We do not know what is the best route for him. We obviously do not want him to get really sick from having the tube in and it is so painful to watch your baby be so uncomfortable and pull at the tape on his mouth. It's heartbreaking to watch him wrinkle his face in pain, but not be able to cry out. I hate standing by him when I know that he's hurting because I feel like he's just begging me to fix it, but I can't. Yesterday I stood by him and let him squeeze my finger with his tiny hand while they pulled a chest tube out of him and stitched him back up. You cannot tell me he doesn't feel pain. His face was grimacing and even though he was silent my heart could hear him screaming in agony. I just kept whispering to him that it's ok and it won't be forever. I told him that I hear him and I love him so much. He is so strong. I stayed strong for him yesterday, but when we got back to Ronald McDonald and I was laying in bed I just broke. People tell me he won't remember any of this, but I will never forget. I can still see his face. I understand now why God had to look away when Jesus was hanging on the cross. I don't think there is anything more painful for a parent then having to watch your child suffer and not being able to do anything about it. I just sobbed last night. I hate that he knew I was there and I didn't stop them from hurting him, but I would of never let go of his hand. As painful as it was to be there, I couldn't leave him.
He hates his tubes, but I hate that if they take them out they will have to put them back in again and that means even more pain and trauma for him to go through. I wonder what he thinks of this world. I think if he had the choice he would go back to being in my womb. He could move around inside of me, he could breath and no one was constantly poking and probing him. I look at him and I'm so sad that this is his experience. I tell him all the time that it won't always be this way. It's just not fair. It's not fair that my perfect baby boy has to face so much and he's only a week old. He didn't do anything to deserve the pain he endures. I know God has a plan. We are still praying and trusting him everyday and we have seen so many blessings and miracles in our child's life. It's so hard to remember the blessings when you look into your babies eyes and see pain though. It's starting to become overwhelming for us. I see the sadness building in both me and Ryan. Ryan is starting to think about leaving this weekend and thats breaking his heart and I'm starting to think about being alone. I don't know how I'm going to handle these daily trials and decisions by myself. I won't have Ryan to look to for wisdom and strength each day :( It is so hard for Ryan to feel helpless here I can't imagine how hard it's going to be for him to be away from Landon. Please pray that we continue to lean on God for strength and wisdom. This is way too much for us. We just want to be done. We want to take our baby and go home, but that is not an option :(
It is nine o clock and as of now we have been told that they are going to take out the tube tonight. We aren't getting our hopes up that this will actually happen, but we told the nurse to call us tonight at any time if they do decide to take it out tonight. We want to be here even though they've told us it will not be pleasant. It will be very painful to take out the tube and once it's out his throat is going to be extremely sore. We are going to go back to the house as soon as I'm done writing this. We'll try to eat something and maybe get some sleep while we wait for the phone to ring.
I hope this post hasn't sounded too depressing. All of the doctors tell us that he is doing very well, but this isn't being written by a doctor it's being written from a parents heavy heart. We do have good days, but today just happened to be a really hard, exhausting day. Thank you so much for your prayers. Your prayers, love, and support carry us through these days. Hopefully the sun will shine brighter tomorrow.
Ryan and I ran to Target to get some things and when we got back there was a circle of 11 doctors outside of Landon's room. We were glad we made it back in time for evening rounds. As we were listening I just became more and more disturbed. There are so many different strong opinions about what should be done to Landon. One of the main doctors feels very strongly that his breathing tube should be taken out and he will do just fine. Dr. Bryant, our surgeon does not want the tube taken out because he will have to have it put back in for surgery next week. It is very concerning for a parent to know that there is disagreement amongst the team that is making the decisions that are so important to the life of your child. Talking to the nurse afterwards about what was said during rounds, she told us that it is dangerous to keep a breathing tube in for so long, if they decide to keep it in until after surgery they would be risking him getting pneumonia or other infections.
Ryan and I know that we are Landon's advocates, but right now we just feel so helpless. We do not know what is the best route for him. We obviously do not want him to get really sick from having the tube in and it is so painful to watch your baby be so uncomfortable and pull at the tape on his mouth. It's heartbreaking to watch him wrinkle his face in pain, but not be able to cry out. I hate standing by him when I know that he's hurting because I feel like he's just begging me to fix it, but I can't. Yesterday I stood by him and let him squeeze my finger with his tiny hand while they pulled a chest tube out of him and stitched him back up. You cannot tell me he doesn't feel pain. His face was grimacing and even though he was silent my heart could hear him screaming in agony. I just kept whispering to him that it's ok and it won't be forever. I told him that I hear him and I love him so much. He is so strong. I stayed strong for him yesterday, but when we got back to Ronald McDonald and I was laying in bed I just broke. People tell me he won't remember any of this, but I will never forget. I can still see his face. I understand now why God had to look away when Jesus was hanging on the cross. I don't think there is anything more painful for a parent then having to watch your child suffer and not being able to do anything about it. I just sobbed last night. I hate that he knew I was there and I didn't stop them from hurting him, but I would of never let go of his hand. As painful as it was to be there, I couldn't leave him.
He hates his tubes, but I hate that if they take them out they will have to put them back in again and that means even more pain and trauma for him to go through. I wonder what he thinks of this world. I think if he had the choice he would go back to being in my womb. He could move around inside of me, he could breath and no one was constantly poking and probing him. I look at him and I'm so sad that this is his experience. I tell him all the time that it won't always be this way. It's just not fair. It's not fair that my perfect baby boy has to face so much and he's only a week old. He didn't do anything to deserve the pain he endures. I know God has a plan. We are still praying and trusting him everyday and we have seen so many blessings and miracles in our child's life. It's so hard to remember the blessings when you look into your babies eyes and see pain though. It's starting to become overwhelming for us. I see the sadness building in both me and Ryan. Ryan is starting to think about leaving this weekend and thats breaking his heart and I'm starting to think about being alone. I don't know how I'm going to handle these daily trials and decisions by myself. I won't have Ryan to look to for wisdom and strength each day :( It is so hard for Ryan to feel helpless here I can't imagine how hard it's going to be for him to be away from Landon. Please pray that we continue to lean on God for strength and wisdom. This is way too much for us. We just want to be done. We want to take our baby and go home, but that is not an option :(
It is nine o clock and as of now we have been told that they are going to take out the tube tonight. We aren't getting our hopes up that this will actually happen, but we told the nurse to call us tonight at any time if they do decide to take it out tonight. We want to be here even though they've told us it will not be pleasant. It will be very painful to take out the tube and once it's out his throat is going to be extremely sore. We are going to go back to the house as soon as I'm done writing this. We'll try to eat something and maybe get some sleep while we wait for the phone to ring.
I hope this post hasn't sounded too depressing. All of the doctors tell us that he is doing very well, but this isn't being written by a doctor it's being written from a parents heavy heart. We do have good days, but today just happened to be a really hard, exhausting day. Thank you so much for your prayers. Your prayers, love, and support carry us through these days. Hopefully the sun will shine brighter tomorrow.
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