Thursday, June 28, 2012

Watching you sleep

Landon, sometimes at night, ok almost every night, mommy slips out of bed, careful not to wake up papa, although I'm pretty sure he's caught on and knows where I'm going. I softly walk to your room, carefully open your door and walk over to your crib. I pull over the foot stool and just sit and watch you sleep. You are so peaceful. I silently thank God for you and more often than not tears begin to form because I am overwhelmed with joy. I can't tell you how blessed you have made me and your daddy.

You amaze mommy everyday with the joy you express. Daddy and I get to know you more each day and everyday you steal a little more of our hearts with your huge smiles, inquisitive personality, and how all it takes to calm you is just to pick you up and hold you tight. If only giving you all of our hearts could make your heart whole my love. Believe me, we wouldn't miss our hearts because, with you in our lives, they grow bigger everyday.

What do you dream of my child? I wonder if God speaks to you in your dreams? When you were in the hospital and you looked so lifeless, mommy pictured that you were with Jesus. I'm sure He was holding  you tight and I'm sure your huge smile melted His heart even more than it melts me and daddies. I wonder if He sang to you then? Maybe that is why you love being sung to, although I'm sure mommies voice doesn't come close to His.

I know you were with Him my Landon, His glory still radiates off of you. I know that He placed passions and desires in your special heart that He will help you fulfill. Daddy & I can't wait to find out what they are and watch as you continue to shine His light for the whole world to see.

Good night love bug, sleep tight in the hands of your Abba

Tuesday, June 26, 2012

When it's hard to remember...

So the race was on after checking my email yesterday and finding a coupon, from shutterfly, for 50% off their photo books. The deal is only good for three more days. I have another gift certificate so this would be the perfect time to get the album I've been working on for Landon ordered. So last night I was sitting by Ryan who was playing video games as I worked on shutterfly. I was uploading pictures for Landon's "Bye bye breathing tube...FINALLY" page, when I saw one with a tiny video camera down in the corner of it. I didn't remember taking a video of him after getting his breathing & feeding tubes out so I clicked on it. Instantly we were transported back to our time in the hospital. Ryan paused his game, we were both captivated. We watched as our baby boy struggled for each breath, each forced squeal would cause his face to wrinkle in aggravation that he couldn't cry and his throat hurt so bad. It wasn't long into the video that the tears started to fall down my face. I can just remember it like it was yesterday, all of the emotions came rushing back. I could hear myself in the video and I knew that I was fighting tears then & trying to be strong.

The video was less then 2 min long, but it seemed like we were sucked back 3 months ago. All the waiting, the fear, the tears... we remembered. We just sat in silence for a min after it was done, both of us staring at the screen that was paused on our baby boys swollen & puffy face. It's easy to forget what it was like when each day we wake up to his beautiful smiley face now. His eyes are so trusting now, but back then they were filled with pain and confusion.

Ryan hugged me and told me that it won't be as bad next time. He will recover faster and not have to have the tube in for so long. I nodded my head in agreement, "it was just so hard Ryan." "I know baby, I know" he replied. He rarely breaks, but I could hear the emotion hanging in his words.

I knew I had to do something to get the moment to pass so I went back to shutterfly and Ryan, seeing that I was ok, went back to playing his game. I couldn't shake the memories though. I laid in bed that night and just told God that it's so hard to remember. He spoke straight to my soul and told me "When it's hard to remember, you remember one thing Natalie. Remember my faithfulness."

I've been pondering that ever since. I know, in the Bible, God talks a lot about remembering. He was constantly telling the Israelites to remember his faithfulness because He would perform a miracle for them, they would praise him, times would eventually get hard again, and their response would be to complain about how He abandoned them. It wasn't just the Israelites who had this tendency to forget though. Did you know that the word "remember" appears 167 times in the Bible? I decided to do a little study and look some of them up.

REMEMBER that you were slaves in Egypt and that the Lord your God brought you out of there with a mighty hand and an outstretched arm. Deut. 5:15

Look to the Lord and His strength; seek His face always. REMEMBER the wonders He has done.
1 Chron. 16:11-12

I REMEMBER my affliction and my wandering, the bitterness and the gall. I REMEMBER them, and my soul is downcast within me. YET this I REMEMBER and therefore I have hope. Because of the Lord's great love we are not consumed, for His compassions never fail. They are new every morning; great is Your FAITHFULNESS. Lamentations 3:19-23

Wow, that just blew my mind! I have read that verse probably a hundred times, The second part of it has always been one of my favorites, but I missed the first part and you need the first part to really understand the second. God has shown me that we can choose to do two things when we go through hard times.

1. We can try to forget them.

It would be easy for Ryan and I to forget about the long hill we've climbed with Landon. If his next surgery goes as we're hoping he could potentially live a long and normal life. We could pack away the memories in a scrapbook and leave it on a shelf to acquire dust as we continue living our life, but would that be right?

2. We can spend the rest of our days on Earth being bitter and angry at God for allowing things to happen to us. We can get hung up on the pain and let it consume us.

We've all heard of the mom who poisons her child to keep it sick because her child's sickness has become the mothers identity. That's an extreme example, but can't it be so true for us? Unforgiveness kills our spirit, abuse cripples, the death of someone we love can stop our lives as well. I'm a big supporter of grieving losses, but the grief process can't go on forever.

I'm learning, that we're supposed to remember. Memory is a gift God has given us. Isn't it amazing that something as small as a scent, a taste, a song, or a 2 min video can take us into our past. God must allow this to happen for a reason. We all have memories we wish we could forget. What if when we remember them we chose to praise God for His faithfulness? What if when Satan reminds us of our slavery to past strongholds, instead of feeling shame, we chose to remember how God forgave us and was faithful to set us free? What if when we remember how our hearts broke in a moment and our world came crashing down, we chose to remember how God never left our side? How God dried all our tears, how God eventually got us through. Gods faithfulness is the only reason I can think of that can get us through the memories.

There will be many times in the future where Ryan and I will remember. Our souls will become depressed, but in those moments I pray we will choose to remember. I pray we will remember and find hope again. It's because of the Lords love for us that we don't have to be consumed by the pain we encounter in this life. His compassion for us will never fail. In fact, they're new each morning. He's not upset that we can't seem to get over our pain. He just wants our pain to REMIND us of His FAITHFULNESS. (my paraphrase of Lamentations 3:19-23)

Saturday, June 9, 2012

Life changing day for Landon

Landon’s appointment with Fernandez went really good yesterday. He was weighed first and was 11Ibs 1oz! Soon after Fernandez came in and in his accent, told me that he is doing AmAzing! He actually said those words 3 times during our visit. He is so impressed by my little man. I asked him if his incision looks like its healed good? He said that it looks great and we can now place him on his tummy, lift him under his arms, and give him a real bath. This was awesome to hear because now that he’s bigger it’s been getting more difficult to lift him under his back. I asked him if it’s normal for him to seem like he’s having a hard time breathing when he’s sleeping sometimes and he said that the raspy breathing is because of his shunt and nothing to worry about. I still really bothers me though. I just had one more question on my list, Ryan and I had the brilliant idea that he would probably let us take Landon to the picnics our church is having this summer. I had already gotten my hopes up about it. How wonderful would it be to go as a whole family to something?? I shouldn’t have gotten my hopes up though because Fernandez said no L Even though it would be outside he said it’s just not safe for him to be around groups of people until his hearts working better, without the shunt. So that was a bummer, but I can’t be too sad. He is doing so well, we don’t want to risk anything with him.

I was also hoping maybe we could reduce his formula a little so that it’s not so thick and hard on his tummy, but he doesn’t want to change anything because he is doing better than anyone expected him to do. He did say that he would be fine switching formulas to the kind WIC provides, he just still wants him getting the 30 cal. He said he would send in the dietician to teach me how to mix the new formula for him. He stood up and said to Landon, “we wanted you to grow, and you are doing a great job with that. We will see you in a month.” I know I just got a big smile on my face when he said that. ONE MONTH with hopefully NO appointments! I am so excited! We will be praying that nothing comes up that will require a doctors visit.

I waited for close to an hour for the dietician. I was glad that Landon ate well and fell asleep for me. She finally came in and we talked for a long time, about where Landon is compared to other babies his age. She said that calorie wise he is getting the same amount of calories as other 2 month olds. Which is amazing because he is taking less than 18 ounces in 24 hours when most babies his age take about  24 to 30. So essentially, he is getting like 2 bottles less than normal. Which explains why his bottles have to have double the amount of formula. She said that eventually they are hoping he will start taking more at his feedings so that they can reduce the formula.

Over all it was a really good appointment for him. I scheduled his next appointment for July 10th. He will have an echo at it so pray pray pray that in this time his right ventricle will make some changes and grow a little.

It is so much easier lifting him under his arms, but he doesn’t like it yet. I think it kind of scares him because he doesn’t feel as supported. I also placed him on his tummy once we got home. He just kind of face planted and rubbed his face in the floor until he got so upset he started screaming. I can tell this might be harder than I was anticipating. We don’t like him to get upset because of the stress it places on his heart, but he really needs the time on his tummy so he can get stronger. It’s going to require some crying until he can get used to it. It’s hard for me to not lift him up and comfort him when he’s screaming though. I am looking forward to his OT visit on Wed. hopefully she can give me some advice on how to help him make the adjustment to his tummy a little easier. 

Once Ryan gets back from finishing his project at work we are going to give him his very first bath. I am excited to see how he reacts to it. Lots of changes in our little boys life right now. 

I just want to pour out words that adequately express our gratitude to each of you for fighting in prayer on behalf of our little warrior, but words just don't do. Know that we thank God for you daily. We may not know each of your names, but believe me our Lord does!  Landon's progress is astounding the doctors and I can only equate it to prayer and love. THANK YOU!

Hopefully we'll get some more pictures posted soon! 

Tuesday, June 5, 2012

Two Months!!

It is so hard to believe that our Landon is now two months old. Ryan's friend from college was in Bismarck this last weekend and offered to watch him so we could go out to celebrate our anniversary. It was so strange leaving him. We told each other we were going to try not to talk about Landon during our date. I've learned through my marriage counseling classes that too many couples lose all connection to each other except through their children. They don't know what else to talk about when they're together. I don't want that to happen to us, but it was so hard not to talk about him... we failed. We had such a great time out, but we were happy to get back to him. He did just fine with a babysitter. I found out that night that our friends from church were going to watch him in the morning so we could go to church together. What a gift!! It was SO refreshing being with our church family and praising our Lord together. Landon slept the whole time we were gone. We were told he was the easiest babysitting job our friends had ever had :)

Yesterday was a very busy day. Because Landon is on Medicaid, he qualifies for WIC so we had an appointment in the morning to get it all worked out so he can get formula and we can get some other groceries each month. This is such a blessing, but I am a little worried about switching his formula to the kind provided by WIC because he has been doing so well on the kind we have him on now. The pediatrician reassured me that he should do just fine on the new kind, I will just have to ask the dietician on Friday how I need to mix it so he'll get the adequate amount of calories he needs. After our appointment with WIC, I had to go to the social services office to give them some documents, then we had to run to the post office to pick up a package. I hate taking him into places, knowing that he could catch something, but some days there's just no getting around it. He had to be weighed and measured at the WIC appointment so I couldn't leave him at home with someone. I just pray Gods protection over him on days like yesterday. We finally got home. I was exhausted, but had to make some phone calls to different hospitals, which always requires being on hold, listening to countless options and trying to figure out which button to push so I can finally talk to a real human being. We got a short nap, then I had to pack him up again and take him to his pediatrician appointment. I could tell he was tired like me, and not liking that he was off his daily routine. At the appointment he weighed in at 10Ibs 10 oz!! He is now in the 25th percentile for height, weight, and head circumference. This is awesome progress from being in only the 3rd percentile when he got home. The pediatrician is really happy with how he's doing. She told me that the only thing she's concerned about is that his head muscles aren't getting strong enough because he is always on his back. She said he looks really content just draped over my arm... which he is, because that's all he's known so far. She said that this is normal for heart babies. I told her that he's already in an early intervention program and we'll be really working with him on sitting up and strengthening his neck muscles once he can finally be on his tummy. I think he's doing great and in my opinion he's super strong and I don't think he'll miss a beat when it comes to his physical development, but that's a mothers opinion :)

Today and tomorrow we are just hanging out at home which is nice after our busy, nonstop day yesterday. Thursday is a big day! Last week our social worker Roxanne, who has become a family friend and an adopted Bismarck grandma for Landon, asked me if I would speak at an Early Intervention meeting this Thursday. From my understanding it will be for people who work for the state and are involved with North Dakota's Early Intervention program. I will be telling our story as it relates to congenital intervention on behalf of the family. I am very nervous and would of loved to say no thanks, but early on in Landon's story I told God I would do whatever it takes to bring Him glory through Landon's life. I believe this is a chance God is giving me to do that. Please pray that God will give me the right words to say. Also, please pray that God protects Landon. I will be bringing him to the meeting with me. This worries me because it's a strange place for him and we'll be there longer than I like to be in a building with him. It's also in the morning so it will throw off his routine with his meds and feeding. Pray that God gives me peace and that above all, that Landon's story will bring Him glory. Also pray that Landon sleeps through the whole thing :)

Friday will also be a busy day as Landon has an appointment Fernandez. Hopefully he will be happy with Landon's progress and allow us to lessen Landon's formula and give us the ok for tummy time.

Thank you so much for keeping our family in your prayers. Thank you for all of the wonderful anniversary wishes. We had a wonderful day rejoicing in God's faithfulness to us. We are looking forward to a new year full of God's blessings, in whatever form they may come :)

We love you all!!


This last weekend we celebrated two very special occasions. Sunday was our first wedding anniversary and also Landon's two month birthday. I am just blown away when I ponder on everything that has happened in our first year of marriage. I was brought to tears as I read my vows the other day. I couldn't of imagined what God had in store for us then. I think I will share them with you, because I feel our commitment to God and to each other is truly what got me and Ryan through this last year. Reminisce with me as I take you back to a beautiful evening in June. I was scared to death to say my vows. As with everything I write, I had poured my heart out over the keys as I typed out words that I felt would do an adequate job of expressing my love for Ryan and the commitment that I knew I was making to him and to my Lord. I was nervous to share my heart, not just with Ryan, but with 300 other people. My anxiety lost it's grip over me as I saw Ryan and heard the beautiful and honest vows he had written for me. It was now my turn...

Ryan, I stand here today, before God and these witnesses, to pledge myself to you for life. I promise to love and adore you for as long as I live. I cannot promise you perfection, as I feel you deserve, but what I do have, I give to you now. I will give you my heart and I will hold back no longer. I will love you as sure as God has loved me.
I will love you in your weakness and when you are strong. I will love you in your laughter and I will love you through your tears. I will love you in your youth and I will love you more and more as we age together. I will love you through life's uncertainties, tragedies, and evils. I will seek daily to know you more, as I seek daily to know the One who knows you completely. I will discover what I can discover and though you remain a mystery, what I learn of you I will keep in the warmest chamber of my heart, the very chamber where God has stowed Himself in me. I will do this to my death and to my death it will bring me. I will choose to die to my selfish desires so that, by Gods power, we may be one.
You are mine and I Ryan Maxwell, am yours. I will love you with a love that is mighted by the will of God. I will stop expecting your love, demanding your love, and trying to earn your love. I will simply love. There is nothing that you could do to stop my love. I am giving myself to you and tomorrow I will do it again. God risked Himself on me therefore I will risk myself on you.
Together we will see God, we will learn to love, and perhaps then, and only then, understand this gravity that drew Him unto us. I did not know the relentless depths of God's love until I met you. I have heard Him speak through your voice. I have felt his presence through your touch. He has used you to teach me how to trust. He has shown me that I cannot say that I trust Him if I am refusing to trust the man He has chosen to be my leader.
Because of His love I can stand here today and promise to follow you to the ends of the Earth. Where you lead I will go. May we walk out God's love for the world to see, may our marriage display His passion, His sacrificial love, His forgiveness and grace. With God as my utmost, I solemnly give myself to you to be untied by God from this day forward.

That's where it all started... I have read Job enough to know that when we said our vows, we put a target on our backs for Satan. I feel as though God truly did lead us to the ends of the Earth this last year. Without Ryan by my side I know I couldn't of done it. God has shown us that marriage isn't having a lot of money or the nicest house or going on fun trips or buying each other nice gifts. Marriage is holding on to each other because life is crushing down on you. It's holding hands because fear has stolen your ability to speak. It's choosing to laugh with each other, when you could just as easily cry. It's being strong when the other is having a weak day. It's waiting for the morning together. It's knowing that even if our worst fears come true, we'll be ok because we have each other.

For those of you who have followed our story, my prayer is that we have been a testimony of what God meant marriage to be. We have made mistakes this past year, we have hurt each other, said things we regret out of fear and stress (and pregnancy hormones), but we will tell you that as long as you don't lose sight of Gods faithfulness, you can get through even the darkest, longest nights. One thing sticks out to me so much in my vows... we have truly seen God. We have seen him more clearly and learned more of his sacrificial love while climbing our long hill with Landon then I believe we could of learned with a whole year of straight Bible study. On the foundation of our marriage, God had us walking out the truths of the gospel and through our brokenness, He has made our marriage stronger than ever.

"But He has said to me, "My grace is sufficient for you, for my power is made perfect in weakness."
2 Corinthians 12:9

Happy Anniversary my love!!

To God be all the glory!!!