Thursday, April 26, 2012

Finally HOME!!

The day finally arrived!! We signed the discharge papers, had our nurse take a picture of us and off we went. We were thrilled beyond words to be going down that elevator with our baby boy finally with us. Words truly can't describe! Landon fell asleep on the walk out of the hospital. We stopped at a couple rest stops for feedings and diaper changes, but other than that he slept the whole way. There really is something magical about a moving vehicle that just mesmerized him.

It felt strange to enter our apartment after being gone for 6 weeks. Even now it just feels so strange. I did not come back to my old life. I keep waiting for something to feel the same, but apart from Ryan leaving for work this morning, everything is different. My schedule revolves around Landon's feedings, diaper changes, mixing his bottles, getting him his meds on time, trying to find the time to pump, and just being with him and staring into those beautiful eyes. He LOVES being held and just walked around. Before yesterday, he had never been able to be held and walked around. His eyes just get huge and he's so content and curious about everything :) Everything is new to him too. We're learning together :)

Our lives are still very crazy and busy though. Nursing visits will start this week, just to make sure his lungs aren't retaining fluid, he's gaining weight and doing well. Doctors visits start next week and we're still figuring out his insurance situation which is scary because the bills are already rolling in. We thought we sent all the forms we needed, but we found you should never trust a fax machine. Hopefully that will all get worked out today with some phone calls.

Thank you everyone for following our journey and praying for us every step of the way.

I had such a God moment yesterday. We were hours into our drive when Ryan turned on the radio and the song blessings was playing by Laura Story. I just stared at Landon and let the words wash over me and the tears fall.

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

I used to sing this song to Landon when I was pregnant and I think it will be one that I'll continue to sing to him as he grows. We want our son to grow up understanding that his pain has a purpose. God has a plan for his life. Ryan and I consider ourselves so blessed that we get front row tickets to watch his story unfold.

Monday, April 23, 2012

Hoping for home

We thought we would be leaving today and as the day went on it kept looking promising. Landon did great during the night without needing oxygen. They told us we could do his car seat test whenever he seemed ready, so we put him into clothes for the first time. Not easy since he still has a bunch of monitors on him and a big splint thing on his arm to keep his IV from bending. We put him in a 3 month outfit and he was swimming in it haha. We put him in his seat, strapped him in and tightened it. He did pretty good for the first hour and then it was a battle just to keep him distracted and calm. We couldn't change his diaper or hold him for two hours and he did not like that, especially when he got the hiccups, which happened multiple times.

A pharmacist came in and explained the medications that he will be going home on and how to give them to him. Everything seemed to be coming together, so all we had left to do was his hearing test, meet with a genetisist, and talk to Dr. Bryant one last time.

As the hours went by and no one came in to do his hearing test we started getting worried. We decided that no matter what happened today Ryan would go back and work this week. If Landon got discharged later in the week we would stay at my aunts house until Friday. Ryan didn't want to wait to long to leave, but he wasn't going to leave if there was still a chance we could all go home.

Finally, around 3:00, a nurse came in and told us that the doctors want to wath Landons vitals for one more night and they also couldn't get his hearing test for today so it will be in the morning. She appoligized and said she hates being the bearer of bad news. We had everything packed and a huge pile of luggage sitting on our couch. It was obvious to everyone who came into our room today that WE WANT TO GO HOME.

Ryan and I talked after she left and decided that it wouldn't make sense for him to go back today if we're going to be discharged tomorrow morning. So, again, he had to call his boss and explain the situation. She has been beyond understanding this whole time and we really don't want to take advantage of that.

So we are hoping and praying that nothing goes wrong tonight and tomorrow morning so that we can finally take our family home. Good thing is we got almost everything done today that we needed to do before we go so hopfully we can be out of here early :)

Saturday, April 21, 2012

Moving Day

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.


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.

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!

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 :)

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.

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.

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.

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.

Monday, April 9, 2012


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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 :)

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.
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.

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.

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.

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.