Better than a hallelujah kind of day

Sometimes I skip over the box where it wants me to put the title of my post and I just go straight to writing. Sometimes I have no idea what the post is going to be about, I just start typing and wait for it to unfold.

This is one of those days.

You have no idea how much I should be working on school right now. With only two weeks left in this semester, I have three research papers I need to write that I haven't even started. So I poured my hot chocolate packet into my mug, put it under my kurig and pressed the button... it's so nice to be home... I had every intention of bringing my coffee to the living room, opening my laptop, and begining on one of my papers...

but I can't...

I just can't. Today has been one of those days where I wake up feeling numb. Some days I can shake the numbness simply by taking a shower, making coffee, or turning on the radio and filling our apartment with praise...

But none of those things are working today.

My heart is so heavy. Tears have permanently made their residence on the cliff of my lower eye lid today.

I don't know what this post is going to be about yet, but I can warn you that it is going to be raw. I hate being this vulnerable, but there are days when the pain is just too real to fake it. This post is going to come less from my soul which is rooted in my faith and trust in God and more from my breaking heart.

Ryan and I were talking last night about the craziness of it all. This life has become normal for us. We live in this world now and we've surrounded ourselves with others who also live in this world, sometimes it just seems...normal.

But then there's days like today where it all hits me like a ton of bricks and I'm left disoriented, confused, and angry.

People's grandfathers have heart disease. People's grandfathers have open heart surgery... and... my baby? It just hurts so bad to think about it today. I realized last night that Landon will have had 3 open heart surgeries before his first birthday. How can that be right? It's just too much for me to comprehend today. I realize that I hardly had time to grieve the news about another surgery before we were forced to face the battle right in front of us. My mind must of made the executive decision that I couldn't possibly think about another surgery until Landon's blood clot was resolved.

But now we're home... and it's all hitting me at once.

Then I look at him... he's smiling up at me as I'm crying loud heavy sobs. His smile just makes the sobs come stronger. How can he still smile? How can he still love and trust us after everything he's gone through? Why am I the one in pain over this when he's the one who truly has to suffer through it? 

I am blown away by my child's resilience. One moment he is screaming in pain and I'm convinced he's going to be traumatized for the rest of his life and then the next he's flashing his huge smile, melting all the nurses hearts and acting like everything is just fine.

I hear God speaking to my heart. I hear him telling me that Landon can still smile because he knows he is safe in the love Ryan and I have for him. He can still love because he unconditionally trusts us.

That is how I want you to live Natalie. It is okay to cry. It is okay to for your heart to break. It is okay to not understand and at times question me and be upset by my will, but always come back to my love for you, always come back to my goodness, no matter what you may feel, always find your way back to trust and hope in me.

So many of you have told me that my faith inspires you. So many of you have told me that I'm strong, but I want you to know that I'm not above being angry at God. I do not accept His will with open arms. Most of the time I fight it, I yell at him and then when all my energy has been spent I collapse into the fetal position and through whatever tears I have left simply ask Him "why".

But eventually I do find my way back trust and hope in Him. I remember His faithfulness and His goodness and I know that no matter what He puts in front of us, He will see us through. I remind myself that this was never God's plan. God doesn't correct me when I tell Him that this is just plain wrong, I believe He agrees with me. I believe He allows me to be angry and grieve in whatever way I need to because He is grieving too. God never wanted his children to have to face this kind of pain. He never wanted mama's to have to bury their babies. I remind myself that God isn't the enemy. Because of the fall of mankind, we are forced to live in this broken world. God hates this, but in His grace, He always has a way to turn the brokeness into something beautiful.

I know I have the choice to become bitter and angry at God, or I can curl up in His lap, grieve with Him, and eventually get up and say, "how do You want to use this to bring You glory Lord?"

I know that day will soon come, but today it's okay that I'm broken. I love that I serve a God who allows me to be.

Earlier this morning I was putting Landon down for his nap and he was really upset. When he gets overly tired nothing seems to make him stop crying except singing. So I started singing his song. I don't know if it can really be called a song because it's only one word, but it's his favorite. All I sing is hallelujah over and over and over again until his crying stops, his eyes close and eventually I'm able to lay him in his crib. Today I started singing it and like always, he immediately calmed down.

Hall e lujahhhh hall e lu jahhhh hall e lu........ I could hardly get the words out. I just couldn't sing it. All I seem to be able to do today is cry. Eventually Landon fell asleep and I went and made my coffee and began writing this post. While I was writing, this song came across the radio.

I hope you really listen to that song. The words are so true and I think sometimes the church gets caught up in acting strong. We forget that God would rather see us be real. We forget that God would rather hold us while we're broken and curled up in the fetal position than have us force out empty words of praise that our hearts aren't ready to sing yet.

So today I'm allowing myself to be a mess.

today I'm not going to force a hallelujah.

and ya know what... I believe that's okay.
 

Possible Christmas surgery

Hello from the hospital still! We were told right away this morning that we would be staying here another night, but now it's looking like we'll be out of here by 6 o clock. Things change by the hour here. We've been told we'll be discharged at 3, but we know better and are planning on truly moving out around 4 or 5.

Landon has been doing really well ever since they decided to stop the Heparin this morning. I don't think it was the Heparin that was keeping him fussy as much as the routine lab work he needed done every 6 hours. As long as he knows you're not here to poke him he will shower you with smiles and his silliness. The nurses love him and have told us that if his cuteness was a good enough reason to keep him admitted then he'd be here for much longer. Dr. Bass ordered this morning to stop the Heparin and double his usual aspirin dose. They wanted to monitor him to see how he does without the Heparin and so far his foot looks and feels much better. They believe that he developed a clot in his thigh after the cath, but because they started treating it so soon it stayed relatively small. His pulses are still faint (rank 1 on their scale) and his dorsalis pedis (pulse on top of foot) is still absent. They are hoping once they take out the IV in his foot they will be able to find it, but because they can find his other pulses (although only with the doppler) and his foot is a good color and no longer super cold, they think that the clot is getting better. Landon will have follow up with his pediatrician on Thurs and they'll look over everything, but right now they are confident that it will resolve on it's own. I was really worried about being discharged today, but the nurse showed me how to find his pulses and what signs to check for so pretty much I can monitor Landon just as closely, if not closer, when we're home.

Since today has been pretty low key and uneventful I figured I should let you guys know what we were told yesterday.

Soon after Landon's heart Cath was finished. Dr. Kochilas and Dr. Bass both came out to talk with us. Right away my heart sank. Dr. Bass told us that the Cath went well and they were able to get good pictures, but they found something that they weren't expecting. The pulmonary artery that is connected to the shunt is too narrow. He told us that they will need to fix this before they take out the shunt and sadly the only way to do so is to open Landon up again. I was DEVASTATED by this news. I truly believed that they would be able to close the shunt and Landon wouldn't need anything else done (except monitoring) for a very long time. He told us that if they are successful in widening this artery Landon will have what is considered a two ventricle repair. They still have concerns with his tricuspid valve, but are hoping that once they fix the pulmonary artery and take out the shunt, his blood will flow normally and that will cause his tricuspid valve to get bigger and also enlarge his right ventricle a little more. So we did hear some good news, but honestly at the time all I heard was that he needs another surgery.

they will call us within the next couple weeks to discuss a surgery date. Ryan has work off the week after Christmas so sadly, if it works with the OR schedule, we will have the surgery then :( Not exactly how I wanted to spend my Christmas break or how Ryan was planning on spending his time off work, but what can ya do?

More good news was that we got the okay to take Landon home for Christmas and he can start coming to church with us. They were both actually REALLY shocked that we never go anywhere with him. They seemed to think that was really extreme and frankly not necessary. We are still discussing with each other if we will risk it and take Landon to MN before Christmas so we can have time with family before his surgery. If we are able to schedule for right after Christmas, we will probably just play it safe and spend December cooped up in our apartment. If Landon were to get sick up to two weeks before the surgery, they will want to reschedule. We are planning on bringing him to church, but again we will pray about it and if we do go we will try to keep him in a hospital mask the whole time. 

The nurse just came in and told us that they are starting to work on our discharge papers. YAY!! We're going to stay at my aunts house tonight and leave early in the morning for home.

Thank you so much for all of your prayers for us during our stay. Even with all the ups and downs and disappointing news we receive sometimes, I never doubt the power of prayer. To know that Landon has an army of prayer warriors fighting for him means more then I could ever say.

Here's some pics from our hospital stay...

This was taken while Landon was on the board in the PACU yesterday. He was obviously not himself :(

Last night when he was finally starting to wake up and be himself :)

Sleeping with his new giraffe that his heart pal Cameron got him.

Watching morning cartoons with papa. Feeling MUCH better today!

Update

I've been trying to update facebook all day, but haven't had the time or energy to sit down and update the blog. I'm still really exhausted so forgive me if this doesn't cover all the details.

Wow, umm well I will write about what Dr Kochilas and Dr. Bass told us after the heart cath in a post sometime soon. My mind just isn't in a place where it can explain it right now.

After the heart cath Landon was taken to the PACU. It was SO hard to see him for the first 10 min. He was gasping and his breath was raspy. We knew this was because they removed his breathing tube. I held his hand and cried. It was really hard for us to see him like that. Eventually he calmed down enough to eat and that relaxed him and soothed his throat enough that he felt comfortable to fall asleep.

He had to lay flat strapped to a board for 4 hours. He did extraordinarily well. He obviously wasn't his normal self and was still feeling the anesthesia to a degree. There were times where his eyes were open but I really wondered if he was actually awake just because he had a blank stare in his eyes.

Every 20 min or so the nurse would check his pulses. She told us that this is to make sure that no blood clots are forming. There were a couple times where she had a harder time finding them, she had to turn up the doppler really loud, but eventually she would find them. Every time we would breath a sigh of relief. Our relief quickly vanished when she checked again in 15 min. we waited and held our breaths while she searched and searched for the faint pulse she had just heard... nothing. She waited and tried again... nothing. Another nurse was called and came to take a look. She also couldn't find anything. They were able to hear his pulse in other areas of his left leg, but not the one area on his foot (I forget what they call it). Our nurse then called Dr. Bass (the man who performed Landon's heart cath) and asked him if he could come take a look. Soon Dr. Bass' nurse came to take a listen. To our dismay... still nothing. This is when I posted on facebook and asked for prayer. Soon after Dr. Kochilas (Landon's cardiologist came to see us) soon after that a nurse came in and told us that Dr. Bass ordered to admit Landon. Soon after that Dr. Bass came in and told us that he wants to put Landon on Heparin and watch him overnight. Heparin is a blood thinner and he said that it will stop the clot from getting bigger and that way Landon's body should get rid of the blood clot on it's own.

After another hour and 1/2 we moved up to the PICU. Landon had to get labs done which meant they needed to draw blood. There is no way I can describe how Landon reacts to getting his blood drawn. It is horrendous for Ryan and I to watch him. He screams until he's gasping for air and choking. He turns pale greyish blue and nothing we say or do seems to help. Today was extra bad because the lady could not find the right vein. Landon began screaming when she grabbed his arm and didn't stop until she finally succeeded on her second try. Ryan and I were just talking about how it seems like Landon is traumatized from his experiences today. It's really hard to see him terrified like that. As of now, they will be getting labs again in a half hour so PLEASE pray for Landon and us. We're going to give him some tylenol right before so hopefully that helps him. Right now him and Ryan and sound asleep... I'm dreading 10 o clock :(

So we're pretty confused about what is going on with Landon's left leg. We were amazed because earlier today one of the nurses was able to pick up his missing pulse, but our new night nurse just tried and couldn't find it again... uhhhh. You truly forget how stressful life is in the hospital until you're back here and every hour seems to bring change and a different perspective.

So right now... all we can do is pray. It was looking like God answered our prayer and removed the clot, but I'm still very worried that it seems to be hit and miss on finding his pulse. So far only one person has been able to find it all day. It really doesn't seem to make any sense. I am comforted in knowing that we are in good hands here in the PICU.

On a bright note, we have seen a couple children rolling around in their wagons or hospital beds holding their pillow pets :) We even made a new PICU family friend! One of the little boys who received a pillow pet saw Ryan in the lobby and had a gift for Landon. They heard that he was here and they were so thoughtful to get him a little giraffe.

Well got to go, nurses are back to try to find that stinkin pulse again.

The only thing that encouraged me all day was reading that so many of you were lifting our family up in your prayers.

It's our D (dreaded) day!

As we drove into the city early this morning, I thought about the last time we drove those roads in the morning. I held my big tummy and tried to soak in the reality that today was the day that my precious baby boy was going to enter the world. I had plenty of dread in my heart that day. I dreaded the moment I would have to hand Landon over, dreaded the time I would spend away from him, dreaded having to watch him go through pain, but all of that dread was strongly overpowered by the excitement I had to meet my son.

Today was different then that morning. This morning I woke up with 0 excitement and 100% dread in my heart. I just want today to be over. Ryan and I have talked about what this day would be like. We've looked at our little man, watched him smile and play, and we've told each other that this day is going to be so hard. I have dreamed about this day and what it would feel like to hand my baby over to a stranger, I couldn't imagine what that would feel like, but today I know... it feels like heartbreaking numbness. It feels like tears trying to burn their way through your eyes as you watch your baby being carried away and disappearing behind a corner. It feels like complete numbness as you walk to a familiar waiting room without your baby. It feels like fear and world stopping void. Everything is standing still right now.... we're waiting.

 Landon wasn't allowed to eat after 2:30AM so we took him out of his pack and play at 1:30 and gave him his last bottle. I just let him sleep the rest of the night next to me. All three of us cuddled. For me and Ryan that moment was different then all the other mornings that we've snuggled up in our pjs together. We held Landon a little tighter and let our kisses fall a little longer. Oh how we love that boy! He laid in our bed while Ryan and I got ready and packed up the basement. I took this pic right before I put his new jacket on him and put him into his carrier. He was so peaceful. The tears came as he woke up and smiled at me... he does this every morning... but this isn't just another morning.

Today is our D Day.

We got to the hospital, registered, went to the all too familiar pediatric surgery waiting room. Surprisingly Landon was super happy. He was smiling and stealing the hearts of all the receptionist we had to talk to. I was so worried that he would be really hungry and screaming for his bottle the whole time. The waiting room receptionist told us that she wore red, just for Landon today :) That really did make me smile. I was soon reminded how amazing the staff is here. We were taken back to a room where they got Landon's vitals and changed him into his hospital jammies. I had forgotten about the continual visits from people. Each of them from someone on our sons team in a way, each of them confirming what was going to happen to Landon today, each of them reminding us that he will be in good hands.... each of them reminding us that it wont be our hands though :(

They told us that because this procedure is more complicated for Landon, (because they will be trying to close the shunt and the other hole he has) they would feel more comfortable if they put a breathing tube in. This worries me a lot. They told us that Landon will have it out by the time we can see him, but for any of you who remember Landon's relationship with the breathing tube last time, you can understand why I am concerned. Landon started getting fussy around 7:30. My little man was realizing that his tummy was empty. Ryan did an awesome job distracting him and we were happy to find out that he could go into the OR early. Of course I didn't want to let him go, but it hurt me knowing he was hungry and seeing him asking me for food, but I couldn't give him any :(

We followed behind two nurses pulling a hospital bed. The nurse stopped and told us that we were at the kissing corner. The grandparents gave their kisses, I squeezed him tight and then I squeezed him tighter, then I kissed him and kissed him and kissed him and squeezed him some more. Ryan leaned down and said, "I love you bubby." more kisses, then we walked him over to the nurse and she awkwardly grabbed him out of my arms. I didn't want to let him go.

The horrid screen! Landon is Ma..IL he went into pre op at 6:29 and the OR at 7:46.

So as of right now, we have talked with Landon's card and his surgeon. I don't feel like writing anymore, I just want to see my baby. I'll update later, but please be patient. We should get to leave with Landon today so that is good news. I just want to see my baby again.

Thank you for the prayers. We were told that it went well. It was not what we were hoping and praying for, but our news could have been much worse.

Beautiful

Wow! Where do I start? Today was amazing, mind blowing, heart wrenching and so much more! My heart is overflowing and I am consumed with so many different emotions. I don’t know if I’ve ever felt such joy and sorrow mixed together into one.

We arrived at the hospital, loaded the pillow pets in, and met the woman who was working in the resource center today. She was super kind and I liked her right away. She showed us the tables and told us we could set out the pillow pets all over the tables and in the kids play area.

When we were all finished it looked like this

When the kids walked in this is what they saw...

Then if they walked around the corner into the play room they saw this!! I wish you could of seen their faces brighten!!

 I was really disappointed when the lady told me that we can’t take pictures of the children. I wasn’t surprised, I figured they would require a consent form, but I was really sad that all of you wont be able to see their faces.

They were priceless.

Words can’t describe them, but I will try my very hardest to paint you the pictures with my words and share the memories that are now forever burned into the crevices of my heart.

I have so many stories, but these are a few of the ones that REALLY hit my heart.

One of the first children to come in was a little boy in a wheelchair. His mom rolled him in and he really didn’t seem that interested in the pillow pets. His mom kept asking him if he liked certain ones and he would just shrug. She picked up one of our tags (we were allowed to lay them out on the table) and leaned down and told her son that “they just want you to know that Jesus loves you.” She wheeled him into the play area and he suddenly, stuck out his arm, he was pointing at the brown dinosaur. His mother asked him what he thought of some other ones, but he just kept his arm out stiff pointing it at that one dinosaur. She finally gave it to him and he just hugged it tight. Then he told his mom that his little sister had to have the mini one that was just like his.

A man came into the room while we were still setting up. He asked me if he could have some coffee. I told him that I don’t actually work there. While he was getting his coffee I asked him if he has a child in the hospital. He told me about his daughter in the NICU. She was born at 28 weeks. He said he might come back later and get her a pillow pet.

While we were setting all of them out, I saw the Thomas the train mini one. I thought oh this one would be perfect for his baby, so I set it aside.

Later the staff lady introduced me to a woman and told me that she’s the wife of the man I had talked to. I got the little train pillow pet for her and she said it was just perfect. I asked if they had other kids and told her she could pick one out for her son as well. We talked for quit a while.

Her daughter was born at 28 weeks and only weighed 1.5 pounds. They have been in the hospital with her for 6 and 1/2 months now (can you imagine!!). She now weighs 9Ibs and they’re hoping they will be able to take her home soon.

One of the many moments today that just melted my heart was a dad who came in with his little girl. She must have been 3 or 4 years old. He brought her into the play area and told her to pick out a pillow for her sister. I watched with such amazement as this little girl looked through all the pillow pets looking for the perfect one for her little sister. She was all excited when she found it and brought it to her daddy. “This is the one sissy will want?” her dad asked her. She nodded her head happily. He took her hand to leave when I stepped in and bent down to the little girl. I told her that she could pick one out for herself. She stared at me… pointed to herself and said, “me?” I wanted to cry. “Yes, sweetie you can pick one out for yourself. Anyone you want.” She knew exactly which one she wanted. The purple lady bug. She smiled up at me and told me thank you. Her dad told me thank you over and over again.

A woman picked one out and was almost out the door when she came back and tapped me on the shoulder. “Excuse me, I was wondering, I have a daughter here in the hospital but I also have another one at home and it is going to be her birthday in a couple weeks. Do you think I could get one for her?” I emphatically told her YES YES! She said she knew exactly the one she would want. She grabbed the mini parrot. I overheard her talking to her daughter on the way out and telling her that if she gets the pet in the mail on Monday it will get to her sister in time for her birthday. I just wanted to cry! Thinking that God used this project to give a little girl, who misses her mama, a special birthday gift. AMAZING!

A young mama came in pulling a plastic red wagon in one hand and an IV tower in the other. Inside the wagon was the most beautiful little girl, probably 2 or 3 years old. The mother left the little girl kind of in the hallway while she went to pick out a pillow pet on the table. She soon brought a purple lady bug back to the girl. I asked her if she had any other children and she told me she had one other child. I told her she could pick out another one. As she was picking out another one, both Ryan’s and my eyes were glued on the little girl laying in the wagon. She was so beautiful! She had dark skin and dark curly hair. There were many cords and tubes that connected her little body to the IV tower. She just stared up at the ceiling, but when her mother placed that purple lady bug on her lap, she moved her hands and just kept stroking them across the softness of the pillow. She was so small and fragile, but words can’t describe how beautiful that little princess was. All she did was touch the pillow pet, but I could tell that it brought her comfort.

A couple came in with their two children, a young boy and girl. The little girl was in her pajamas so I assumed she was a patient. After both of their kids picked out a pillow pet they came over and talked to Ryan and I. They asked us if we are with a ministry or something. I told them no, not really. “It was just something we felt God calling us to do so we talked about it on our blog and shared about it in church and people donated.” They thought that was so awesome! They told us that they are from Iowa, but they travel here a lot. They said they got to go home last week, but now they’re back. Their daughter is actually scheduled for a heart Cath next week too. They just kept telling us how great it was to see something like this. They told us to thank our church (all of you!)

A group of around 5 teenage girls came in and all you could hear were their squeals and bursts of delight. They were SO excited!! They came down with a staff member and stayed for quite a while because they couldn’t choose which one they wanted. I was so surprised that they were so excited. We quickly realized that people of ALL ages LOVE pillow pets.

Another girl, I think she said she was 18, was wheeled down by her boyfriend. She was hilarious. She kept telling him to grab her this one and that one. She told me there’s no way she can decide until she holds all of them and can see them next to each other. I could tell that she was highly medicated by how she was talking, but she was just the sweetest thing. There was a point where she just burst into tears. The staff lady asked her boyfriend if she was ok and he told us that she is just in a lot of pain and sometimes it overwhelms her. Before they left the room she came over to us again and told us that this brightened her day.

A boy walked in pushing an IV tower and a nurse was with him pushing a cart with laptop/box looking thing on it. You could tell the nurse was really close with the boy and his family by how she interacted with him. He picked a pillow out for himself and also took 3 for all his siblings.

After he left the lady who was helping us asked us if we knew what he had? I told her no. “That box thing the nurse had (she called it a Berlin heart), that was his heart.” I was speechless. She told us that that it was keeping him alive until he can receive a heart transplant. All three of our eyes were blurred with tears. She told me that some days, it just hits her, what’s really going on, like when she sees children like that whose lives are hanging in the balance. She told us that it is really hard, but in the past couple months they have done 2 transplants. I was just speechless. I was choked up and I could of broke out in a sob right then and there. It just all hit me, the heaviness of this world that these kids are in. That child that I just gave a pillow pet to is going through our worst nightmare for Landon. I can’t help but think of his parents and his three siblings and what their family has faced, how it has changed them forever. It hit me again in that moment (it hit me with every child and every story we heard today) just how amazing this project was and I was brought to tears (still am) that God would give us the privilege of being a part of it.

I have SO many stories. I wish I could show you every child’s face. I wish you could of all been there and experienced the joy, the smiles and giggles. I wish you could of met the siblings who couldn’t believe that THEY got to have one TOO. The parents who kept asking us, “how much??” and the look on their face when we finally convinced them that they didn’t need to give or donate anything. I wish you could of felt the heartfelt gratitude that was poured on us. I wish you could have been brought to tears with me when you saw the parents faces as they got to witness their child, whose face they’ve watched grimace in pain, light up when they saw all the colorful pillow pets.

Okay, I’ll close this project with one last story…

There was a man who hung around a lot. He looked around and told us that he was going to wait until his family got there so his kids could pick out their own. For some reason, they weren’t able to come, so he came back and picked a couple out. He stood by us and we chatted. He asked how the project got started. We told him about Landon. He started telling us about his baby in the NICU. He opened up to us and told us that it’s been very overwhelming for their family. He told us seeing something like what we’re doing is just amazing. I asked him how many kids he has and he told me 3. I told him he could get one for all of them, but he said his daughter is 15. I know she would probably love one, but there are other kids who need one more, he said. Ryan told him that we’ve had other teenage girls get one and that it was fine if he picked one for her too. He finally said ok and then he went and took pictures of a bunch of them and sent them to his daughter so she could pick. As he waited for her to reply we talked some more. We were just talking about his baby when he choked up and started sharing with us about how people have been so kind and caring to his family. He talked about the Ronald McDonald house and “people like us” and then he broke down. He didn’t say anything for a couple seconds… “I just lost my job two weeks ago.” Instantly my hand was over my mouth and tears were in my eyes. Here was this grown man, so broken and overwhelmed. I listened to his pain and I could hear the fear in his voice. My heart just broke for him. He told me that some days are just so hard, but then today, seeing something like this… he choked up again. I shared with him our experience with Landon. I told him that we are grateful for what we’ve gone through because through it, God has shown us what really matters in life. I told him that God told us to do this project and that we feel so blessed that we were able to meet him and be a blessing to him. I told him we would be praying for him and his family. I told him that God ALWAYS provides. He told us that he hopes someday, when his family is in a better position, that they can do something like the pillow pet project.

Man you guys, I just truly CANNOT tell you how amazing today was. I knew God was going to use this project, but I couldn’t have dreamed of something as beautiful and meaningful as what we experienced today.

We serve an AWESOME God!!

Today I saw teenagers press these little animals to their chests. Our hearts rejoiced as we walked out of the hospital and saw MANY children carrying around their pillow pets still. We walked by a waiting area where two little boys were watching tv. One of them was holding his pet tight and the other was laying on his orange puppy as a pillow.

Seeing all of these things and meeting all these children and their families did not only make our day… it’s changed our lives.

I hope someday that we can do this again with Landon. I want him to be a part of this. I want him to meet these children. I want to see my son playing with these kids and I want to see them being children together.

Today these kids got to be kids.

Can you believe we have a God that loves like that?????

Oh my Lord, I cannot thank you enough for allowing me to be your hands and feet today. I felt your heart. I felt how it breaks for your children, but I also felt how your heart rejoices when one of your little ones cracks a smile. You are such a great God! You are compassionate and abounding in love. I want nothing more in this life then to know that my heart and the heart of my family is beating to the rhythm of yours.

I saw your face today Lord and nothing on this earth compares to it. I saw your reflection in the face of a child who is facing suffering that no child should ever have to know. I saw your reflection in the face of brothers and sisters who often feel forgotten and overlooked. I saw your reflection in the face of parents, who would sacrifice ANYTHING for the life of their child.

Thank you Father for what you did today... You’re beautiful.

 I am blown away and left speechless that the God who holds the universe in his hand, the same God who paints the sunrise each morning, also reaches down to his cherished little ones, whispers “I love you” and watches in delight as they receive a pillow pet that He made just for them.

You’re beauty is beyond words Jesus, but I’ll say it again, Lord You’re beautiful... and Thank you, thank you SO very much for today.

Happy Thanksgiving!! (update)

My little man finally stopped fighting and gave in to sleep. Wow, what a long day! We got to Minneapolis around 12:00, parked under the hospital and went up to the lobby. Ryan was on the phone so I took Landon and found the family resource center. I went up to the counter and a lady asked if she could help me with anything. I told her no, that I was just looking around. While I read the newsletter on the counter the women behind the desk doted over Landon and tried to get him to smile at them. Ah I found it... down on the newsletter read, something along the lines of, Black Friday Door Buster. Come down to the family resource center from 11-1 and get a free pillow pet from the Maxwell family. I smiled SO big when I read that. I was so overjoyed that I had to share with the ladies behind the desk that we traveled down today with 120 pillow pets stuffed in our vehicle. They told me they were just talking about us and that the kids are so excited for Friday. I told them that we are SO excited as well :)

As one of the ladies was telling me how they are planning on setting up the room for us I felt another presence with us. I looked down to the side to find a child in a wheel chair staring up at Landon. I don't know how to explain this child, except that there is no denying he has been through A LOT. I smiled at him. I like your baby, he said with a smile. Oh well thank you I replied :). What is his name? It's Landon I told him. I like babies he said me with enthusiasm. I like their cheeks. Sometimes their cheeks are chubby. "haha yes, he definitely has chubby cheeks. The lady I had been talking to introduced me to the boy. She told me that he is very excited to receive a pillow pet on Friday. I looked back at him. He was smiling from ear to ear and nodding his head up and down. That moment made my day. I am beyond excited for Friday now. I can't wait to see that little boy again and give him something special.

We walked across the street and enjoyed a quick lunch with Ryan's brother, Joel and his girlfriend. Then we walked back to the hospital and went up to the 12th floor for Landon's evaluation. It was very similar to his appointments in Bismarck. He laid on my chest and slept during the whole echo which left Ryan and I with nothing to do except watch the Baby Einstein video they had put on to calm Landon down. I find Baby Einstein to be the perfect mix between creepy and mesmerizing.

Then Landon had some other tests before we met with the cardiologist, well it was supposed to be his cardiologist, but he was not able to make it so the man who will be doing Landon's cath on Monday (Dr. Bass) came in to talk with us and explain what will happen on Monday.

Pass laptop to Ryan so he can explain the technical stuff...

Dr. Bass explained to us that, they need to look in Landon's heart to see how it's pumping and they want to test it to see if he can handle the blood flow of a normal heart.  They are going to put two tubes into his artery and use a balloon to close off the shunt they put in his heart in April.  Depending on how that goes they might use the other tube to close off a hole Landon has going from the right atrium to the left atrium.  The doctor told us that this hole was semi normal and that all babies have it and about 1 in 10 adults have this hole that never closes, but due to Landon's heart condition it might be necessary to close this hole permanently.   If everything goes well in the Cath Lab on Monday then they will permanently close the shunt and Landon should have a normal two chamber heart.

Ok, I'm back, thanks babe. Dr. Bass told us that he's very optimistic right now. He said he has seen babies with smaller ventricles then Landons, do very well. If everything goes well and they are able to close the shunt, Landon will be taken to the PACU (Post-Anesthesia Care Unit) after the procedure, then once he wakes up they will move him to the recovery floor where he will stay overnight. I am so relieved that we will be able to stay with him. If all goes well, we will be discharged the next day :)
If there are complications during the cath and he doesn't tolerate them closing the shunt, then they will allow us to go home as soon as he wakes up and is stable. They will immediately talk with us and schedule a surgery date, but because Landon has been doing so well, they will not keep him here until they have an opening for him in the OR. So it sounds like either way, we will get to go home on Tues.

Prayer requests

protection for Landon and wisdom and guidance for the doctors as Landon is in the Cath Lab. Risks for this procedure are minimal, but as we found out last time, things CAN go wrong. He didn't mention anything about the chance of burning a hole this time, but he did say what they worry about most is the formation of blood clots.

Also they seem to think that Landon will wake up a couple hours after the Cath, and I hope that's the case, but if he's still anything like he was in April, it may be much longer. I believe they put on his file that he is VERY sensitive to anesthesia, but we will mention it again to the anesthesia team when we meet them on Mon.

PLEASE PRAY that Landon tolerates it well when they close the shunt and that his little heart will realize this change, adjust appropriately, and that his body will continue to get the blood circulation that it needs. PRAY that they can successfully close the shunt for good.
I really don't know much about the other hole between the left and right atrium. Honestly Fernandez has NEVER mentioned it. Dr. Bass told us that it really isn't 100% necessary to close it, but they want to know if his body will tolerate it if it does close.

We are dreading Monday, but we have so much that we are enjoying and looking forward to.

TOMORROW is getting closer and closer. If you think of us from 11-1 please pray for the children and families that we are meeting. We're praying and expecting big things!!

Saturday we are going to travel a ways to a location my aunt guarantees will make the perfect backdrop for our Christmas pictures. Then my mom and aunt are going to bring Landon back to my aunts house while we enjoy a date night. I am so excited! We haven't been on a date since our 1 year anniversary in June!

It is now morning so I will update on how Landon did last night.

Landon was WAY overstimulated last night. Here is my child who rarely ever leaves our apartment, walking (he's not walking obviously ;) all over a huge hospital, seeing hundreds of new faces. Then we got to my aunts house which had bright Christmas lights everywhere, with a lit up tree in almost every room. He was SO wide eyed! Then add in my aunt, uncle, cousins, and grandparents who hadn't seen him since he was born and well, you can imagine the craziness.

We had such a great time last night, but Ryan and I began to tell that Landon was on sensory overload. We took him down into the basement to get him to calm down and after what seemed like forever of nonstop screaming and fidgeting we finally got him to sleep. I had to just hold him tight in my arms as he fought me :( finally he gave up and drifted off. He woke up in the middle of the night SCREAMING in horror. NOTHING helped. Finally I took off his helmet (he was getting overheated), and sang to him for 30 more min until he fell back asleep.

Everything is new and overwhelming to him. Hopefully after today, he will be used to it. I guess this is just the price you pay from keeping your child in a bubble :(

He was having so much fun last night though. He made a new friend...

I was just sitting on the step that goes into the kitchen, talking with my mom and aunt, when I noticed the kitty was staring at Landon. I put Landon on the floor and was holding up his tummy so he could crawl and he made his way (effortlessly!) over to the cat.

I have NEVER seen a baby so gentle with an animal before!! He was actually stroking the kitty. I was blown away and thank goodness I thought to snap a couple pictures.

And I have NEVER seen that cat take to ANYONE like she did Landon. It was so precious! Who knows, maybe she knows that Landon is what was in my tummy when I lived here for the last month of my pregnancy.

Hoping this blog finds each of you surrounded by family and yummy smelling food. We are blessed beyond measure!

Praise God from whom all blessings flow. HAPPY THANKSGIVING everyone!!!

Pillow Pet Mania in the Maxwell house!

It's hard to believe that we leave in two days! I really don't have any time to write a post, but I just want to post some pictures so that everyone can see the craziness that we're living in right now as we prepare to pack up all our cuddly pets to bring them to the special child that they belong to.

So here you go...

This was taken a couple days ago. Shortly after taking this pic the wall of pillow pets came tumbling down.

We decided the next day it was time to start packing!!

The jumbo space bags fit about 10 pillow pets in them!!

We had family come to visit this past weekend so the pillow pets got moved into our bedroom.

Not all of the bags have been vacuumed yet.

There's about 30 pillow pets scrunched into those little bags!!

Thank you, thank you, thank you, to EVERYONE who donated or lent us their space bags. Without them there would be NO WAY we could fit them into our vehicle.

As of now, we have 112 pillow pets and we still have enough money in the fund to buy a couple more space bags and a couple more pets!!

Plans changed a little bit again.

Sarah (Amplatz Children's administrator) called me and told me that she has some staff coming in the day after Thanksgiving and they were wondering if we could do the pillow pets that day instead. That way the kids who are stuck there would have something to look forward to each day (the meal on Thanksgiving and pillow pets the day after). I told her that we have no problem with that. We just want to make it the best it can be for the families that are there.

So we will be spending Thanksgiving day at my aunts house, enjoying great food and awesome family time. Then the next day we may try to do some early black Friday Christmas shopping before we pack everything up and head over to Amplatz Children's hospital. They are giving us the family resource center room. We will get there at 10am, set up (Landon will stay at my auntie's house with his grandparents) then from 11 to 1 the families will come down with their kids to pick out their pillow pet. Some kids obviously will not get to travel out of their room so we will give the pillow pet to their parents and hopefully get to do some encouraging :) I want so badly to see each of the child's faces as their handed their new special friend, but I realize that just isn't going to be possible. It's enough for me to know that God will get to see the smiles that I will miss :)

We ran into a small downer.

We will not be allowed to put the tags we made on the pets. We were planning on laminating them and tying them around the pillows necks, but we can't do that because the tags say "Jesus" loves you. When I was told this I felt pretty sick and discouraged, but then I realized that I shouldn't be surprised one bit. Of course this isn't going to be easy. People are fine with acts of kindness unless you mention the reason for your out pour of love. I'm not angry at the children's administrator or anything I'm just ticked at the enemy. He doesn't want these hurting kids to be encouraged or feel the love of their savior.

After I got over my initial discouragement I determined before God that we will show His love in whatever way we can. It IS because of Him that we are doing this after all. HE IS the one who wants these kids to get these special gifts. HE IS the only one who knows each of their names and HE IS the one sending us into this place. This world, our country and culture are trying to take Jesus out of everything. Heck, their even trying to take Christ out of Christmas... BUT THEY CAN'T take Christ out of our hearts. I realized that God is relying on US, not just Ryan and I but the whole body of Christ, to be His messengers. We can go into places that the name of Christ may not be allowed and we can SHOUT his name loud and clear simply BY OUR LOVE.

That is what I am praying happens in that hospital room. If I can't depend on a little tag to tell people the reason for this project well then I pray with all my might that the reason will be explained by the way we interact with the people God leads into that room, no matter what religion they may be, I'm praying the ONE TRUE LIVING GOD speaks to their hearts.

We are coveting your prayers right now. We have so much going on in our own lives. We are worried for our baby boy and dreading the moment we have to hand him over once again to a surgeon. We constantly have to push that thought out of our minds because we don't have the strength to handle it yet. We know that we will not receive the strength we need until that thought is the present moment we are facing. We know that in that moment God's Grace will be sufficient for us and His power will be made perfect through our weakness (2 Cor. 12:19).

The pillow pet project has been SO awesome for us as a family. It has given us a way to focus on others rather then worry and feel bad for ourselves that we have to go back. I will write more at a later date about how we are handling the fact of going back, but this post is about the triple P (pillow pet project).

WE NEED YOUR PRAYERS

God would not have had us do this if He was not going to receive glory. We are just broken vessels, but I'm praying that God's light will shine through every one of our cracks. I don't know if we will be able to speak the name of Christ, but I do know that the Spirit will do whatever He pleases and that is what we desire.

ABOVE ALL, pray that GOD'S WILL BE DONE.

Okay, just one more pic for good measure :) The other night Landon was getting his first horsey back ride from his papa. He was giggling with delight and holding on so tight.

We love him so much more than words can say!!!

Thank you in advance for each of your prayers and each time you will hit your knees on behalf of our little boy in the next couple weeks.

Sending LOVE from the Maxwell's!!

Wide awake!!

Happy Monday everyone!! Can you believe it's November?? I don't think I've ever looked forward to the Holiday season and the approaching New Year more than I am right now. I think having a child does that to you. The excitement of Holiday traditions, snow, Christmas music etc. just brings a new excitement to my heart because this year our Landon is here to celebrate with us :)

As Christmas is quickly approaching the focus in the Maxwell house is turning more and more to giving. Ryan and I want Landon's first memories (not that he'll remember this year) of the holidays to be linked with reaching out to others. We want to train him so that what he looks forward to the most is the joy he receives when he does something for someone else. These are the traditions we really want to focus on.

I don't know if the pillow pet project will become a yearly tradition for our family, but one thing is certain, we will NEVER forget this Thanksgiving.

Our wall of pillow pets is ever growing. That's not even all of them, we have another whole x large space bag full. We now have around 50 in our apartment... LOVE IT!!! I know they wont be here forever so we're cherishing the time we get to host them in our cozy home. We know each of them are going to special families so whenever we see them (which is constantly) we pray for those families.

Little update: Last week I was able to speak with the childrens administrator at Amplatz again. I told her our plan to hand them out on Thanksgiving. She got a concerned tone in her voice and told me that her and her staff will not be in until the week after Thanksgiving. Hmmmm I thought, "well we could try to do it sometime after our son has his heart cath." She told me "no, I really want you to be able to do this." Then she told me that there is a woman who raises money and volunteers to prepare a Thanksgiving meal for the families who aren't allowed to leave the hospital. She is another mama who's child was once in the hospital long term. She saw a need and now every year she does this for the families. Sarah (the child administrator) told me that she would talk to this woman and see if we can join their Thanksgiving party. I was THRILLED with this idea!! It's way better then I imagined because it will be a laid back atmosphere and we wont be rushed because we wont have a hospital staff member escorting us around. Sarah also told me that, if at all possible, they let families go home for the holidays so the only families left will be the ones that REALLY need some hope and cheer!! I told Sarah how our pillow pet fund has reached its goal and she thought that was awesome. She asked if we were going to have enough for the siblings to and I told her we're hoping so :)

So long story short, God is continuing to open doors in the the hospital for us and blow our minds with his plan for this project! We are so excited to witness what He is going to do!! Also, we're hoping since we wont be intruding in patients rooms that we will be allowed to take pictures :D I know you all deserve to see the smiling faces that you have brought to these special kids.

If your on facebook join our group "Landon's heart" I try to post updates on there more often then I get to on the blog. Also, if you have any space bags that you would be willing to donate or lend to us that would be beyond great. Ryan and I have discussed multiple times what we should do and we've come to the conclusion that if we have them shipped to Minneapolis we will have to pay shipping and we will STILL need space bags so that we can transport them to and from the hospital. Our Jeep just can't hold 50 boxes!! So as of now, we have enough space bags for 50 pillow pets. We are planning on using the extra money we've raised to purchase space bags for the other 50, but if we can get some space bags donated then we can instead use that money to buy even more pillow pets, which would be ideal! If you have space bags you would be willing to donate or lend us email me at nnmaxwell03@gmail.com

It's also SHOE BOX TIME people! If you're not familiar with Operation Christmas Child you can go to their link here. I will be honest I spaced on this, but it's not to late to fill a shoe box. I want this to be a tradition that Landon will ALWAYS remember. Parents, we need to teach our kids that it's better to give then to receive. So take your child to the mall and let them go crazy finding fun things to give to a child "who may not receive anything else for Christmas." We might even try to stuff a pee wee pillow pet in ours (not one off of our wall of course :) If you have time, go to focus on the family and listen to the end of their brodcast today. A woman from Bulgaria told her story of how a shoe box changed her life and it had me sobbing in my hands. After hearing it I decided that it doesn't matter how tight on money we are, we need to teach Landon that we always have enough to give. If you have older children I encourage you to have them listen to it with you.

Another way our family is giving this year is by joining with the cause for the orphan in whatever way we can. I know I've posted on here before that God has given me a huge passion for orphan care and it wont be the last time you'll hear about it from me. We are determined to be a family that teaches our children about those less fortunate. We don't want Landon to feel sorry for himself because of the trials he faces, but instead we want him to see the blessings he has. We want him to know that there are children that don't have a mommy and a daddy by their bedside and they must face the pain of this world alone. We know that Landon has gone through horrible things that a child should never have to face, but as far as we're concerned he has everything he needs because he has love... he has SO MUCH love. Our hearts break for the children that have never known the love of a family and we want that fact to break Landon's heart as well.

Yesterday was orphan Sunday and I hope that all of you took a part of your day to pray for the most helpless and defenseless in our world and learn more about what YOU can do to help the ones who hold such a special place in God's heart. I was blessed yesterday to get to hear twice about the amazing ministry "Bring Love In". Twice I was brought to tears by this families astounding story of total surrender to the God they serve.

Click on the link below and watch this families story and the ministry they have created.

Bring Love In

That video breaks me every time! You can't see the faces of those children and hear the words of the song calling you to WAKE UP and not be moved.

Through our experiences with Landon God has woken up Ryan and I. He has opened our eyes to a world that, if we hadn't been pushed into it, we may have gone our whole lives ignoring.

In this world is pain.

In this world is hearbreak.

In this world is death, but in this world we have also found...

LIFE.

A greater life than Ryan and I could have ever imagined. A life of complete surrender and trust. Where anything goes as long as God says so. We are DONE putting God in a box. DONE saying "God Your will be done." and yet only praying for the comforts of this life. NO, we don't want to live the American dream. We want to live WIDE AWAKE!

Tonight for those of you who live in Bismarck, I and a group of other woman who have made the choice to live wide awake, will be serving at the Pizza Ranch. 10% of the profits they earn tonight and 100% of all the tips we make will go to "Bring Love In"

Hope to see you there!!

I was planning on giving you a "normal" update on my growing boy, but passion took over so I'll have to save that post for another day :)

Happy Monday!!