tag:blogger.com,1999:blog-61635193387309237502024-02-07T06:05:22.801-08:00Landons LettersOur blog about what's happening in the life of our first born son; Landon Anthony Maxwell, born on April 3rd, 2012 with Pulmonary Artresia & Intact Ventricular Septum.Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.comBlogger98125tag:blogger.com,1999:blog-6163519338730923750.post-17838048425714020642013-01-29T05:01:00.001-08:002013-01-29T05:01:23.162-08:00Last postI am flooded with so many emotions as I begin to write this post.<br />
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I have always hated good-byes.<br />
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How do you say good-bye to something that has become such a part of you?<br />
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I could not have known, when I sat down at our little dining room table that cold December evening, what I was beginning as I created this blog. Landons Letters has been so beautiful to me. It's been my safe place. On days where I couldn't face the world, when I couldn't even face Ryan, I could escape to this blog, stare face to face with my computer screen, and somehow reach down far enough into my heart to the place where my words were hiding.<br />
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On the days when I couldn't speak a word, this blog was always here to listen to my heart.<br />
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Each of your lovely comments was used by God to show me that I truly was not alone.<br />
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This blog holds things that my memory has already forgotten.<br />
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This blog holds healing and transformation, you can find it if you look closely. It's subtle, but it's there.<br />
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So as I turn this last page, I turn it slowly, not wanting to rush away from it because I owe it so very much.<br />
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I know that the thing that made this blog so beautiful, was not my words or even the journey it tells. What makes it so incredibly beautiful is you. Each of you, who have come alongside me and my family as we walked out the story hidden away in this special website. God used this blog to make our story go further than we could have every taken it on our own.<br />
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Thank you for journeying with us.<br />
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We would be honored if you would turn this page and embark on our new chapter with us. As I said in a recent post, it's almost as if this chapter is ending mid sentence so we should be able to pick up right where we left off :)<br />
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Thank you Jesus for writing this amazing story and allowing me to be a part of it. I pray I never forget the beauty that lies in a broken heart.<br />
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To continue our journey follow us to our new blog <a href="http://ourlegacyoflove.blogspot.com/">here</a>Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-34545806215606854982013-01-16T07:26:00.000-08:002013-01-16T07:28:32.715-08:00One week post surgery!We have had so many people ask us how Landon is doing. I wonder sometimes if people really believe me when I say that he is doing amazing. I tell them that truly if you didn't know it, from looking at him, you would have no idea that Landon has just had a major open heart surgery.<br />
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Yesterday marked one week since surgery and I figured that the best way to update all of you on how our Landon is doing is to let him tell you himself :)<br />
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Mom what are you holding? I want it! </div>
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Everyday I wake up and I'm reminded that God still performs miracles.<br />
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I feel one everyday in the strong beat of my child's heart. <br />
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That smiling face right there, is a result of your prayers.<br />
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It doesn't seem like much but, thank you. Thank you so very much for believing and praying for a miracle for our son.Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com3tag:blogger.com,1999:blog-6163519338730923750.post-7638325505034083642013-01-12T05:06:00.005-08:002013-01-15T12:44:46.222-08:00Storms, home, and the flu!I was just cuddling my sweet boy, no more tubes or cords! He is clothed in monkey pj's and wrapped tightly in his favorite hooded monkey blankie. Discharge papers are done and we can leave whenever we want this morning!! Landon is doing awesome and they want us to get out of here as soon as possible because it has become safer for him to be home then here in the hospital.<br />
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We have been told that all of the hospital's in Minneapolis are overrun with cases of the flu. There are even several on the CVICU floor right now that we are on, because the ICU is completely full. Yesterday, after Landon got his oxygen and the last of his monitors off, we were able to pick him up and walk him around the floor. Later in the day we were told that we shouldn't leave our room anymore because of the risk of Landon catching the flu virus. You just have to watch the news for 5 minutes to see how scary this is! We are still in the small PICU room because they figured it wouldn't be smart to move us to the recovery floor since they knew we would be discharged this weekend anyway. A doctor yesterday told us to get Landon out of here ASAP. He said we could leave yesterday, but we wanted to wait one more day since Landon had just gotten off his oxygen.<br />
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Landon's sats without oxygen were sticking around 85-95, which we didn't think was good. He had an echo done yesterday and what they found was that there is still a small hole in the ASD (hole) they patched up. The surgeon told us that he left a hole very small and that Landon most likely wouldn't use it, but our little man, for some reason, feels he needs it right now to get adequate flow to the right side of his heart. This is "not" a bad thing. We have been told that it is perfectly fine for Landon to use the hole, but because he is using it, it is going to bring down his sats. So for the next couple months Landon's sats will be lower, until the hole closes and his body slowly adjusts to this change. After the hole closes, his sats should be completely normal. We will meet with Fernandez right away when we get home and have an echo done. Fernandez will want to monitor the size of the hole by performing monthly echo's until he can no longer find it.<br />
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Landon's immune system is close to normal now, because he is older and he has had this surgery to make it so he has a normal two ventricle heart, but we still need to be very careful for a while. We were told to error on the side of caution with him. So sadly, there will be no more church or fun outings for our family for the next couple months. We'll probably hang pretty low until Spring comes and this nasty flu is long gone.<br />
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They are also concerned for Landon because of the horrible winter storm (Gandolf :) that is supposed to sweep in on us bad today. They obviously do not want Landon driving home, but they agreed that we can leave as long as we wait out the storm at my aunts house. So that's where we're headed this morning. We will stay there over the weekend and leave for home early Monday morning.<br />
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Landon... oh my goodness!! Our Landon, he is known as the rockstar of this floor. All of the doctors and nurses that pass his room usually stop in just to get some of his smiles. I was so worried about how this surgery would put his physical development back, but Landon quickly proved to us that he wasn't going to let us hold him back. I didn't know how much pain he would have when he sits up, but he doesn't seem to have any. Yesterday we found ourselves questioning that this child actually had open heart surgery three days prior. He was sitting up, reaching, playing, laughing. You could tell that everyone who looked in his room was just filled with hope. He is such a strong child! They took him off of all of his pain meds yesterday (isn't that unbelievable) and told us that he could have tylenol as he seemed to need it, but the whole day passed and he didn't seem to be in any pain! We did give him a couple doses last night just to settle him so he could sleep well. I just continue to be blown away by my child's strength. I am so blessed to be his mama.<br />
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Landon hated the "no no" they put over his IV so that he couldn't pull it out. He hated is so much that somehow last night he actually succeeded in pulling it off and taking the IV out right along with it. I almost passed out when I realized what he had done! I have watched him get his chest and breathing tubes out more then once, but for some reason him pulling out his IV seemed more serious to me. I couldn't look at his hand for the longest time, even though there was only a drop of blood and the nurse said it just saved her from having to do it in the morning. Ryan wont quickly let me forget how I overreacted haha :) <br />
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Watching Curious George this morning. Ready to leave whenever papa wakes up </div>
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Please pray for protection from germs for our family. Pray for safe travels for our parents and our friend Krista who are headed back to Warroad, MN and Bismarck today. Pray that the storm passes quickly so that we can get home and get back to our normal life. Please continue to pray for pain relief for Landon and that his strength will continue to improve with each day.<br />
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This experience has been so full of ups and downs. I am brought to tears when I think of the fact that Landon will not remember any of this. We know that we have such a responsibility to tell Landon about his special heart and how God has used it to shape our families life and the lives of so many others. We are so glad that Landon will not remember this pain, but we want him to know where His scar came from. We want Him to know how God has had His hand on his life at such a young age and that everyday he lives, runs plays, is a miracle and an immense, unspeakable, gift (Oh, the tears!). Ryan and I believe that Landon's journey was much more for us then for Landon. God has used Landon's heart to open our eyes to pain and beauty and how you truly cannot have one without the other. We have grown more in this past year with Landon then we ever could have dreamed for ourselves, our marriage, and our family. Everyday we see Landon's scar we are filled with gratitude. Most families wish that they could take their child's scar away, but I would never wish that. I love that we have a constant reminder of how God has been faithful to our family.<br />
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I do not know where You will take us from here Jesus, but know that we will never forget what You have shown us through Landon's heart. Thank you for healing and restoring it. Thank you for protecting our baby boy through the horror he has had to endure. Thank you for the beauty we have discovered while walking the path called suffering. We never would have chosen this path on our own so thank you for knowing that it was exactly what we needed. Above all, thank you for walking this path before us, showing us that it can be done. Telling us that You will never abandon us along the way.<br />
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We will always remeber.<br />
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A broken heart will always be rooted in the foundation of our family.<br />
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Lord break our hearts for the things that break Yours.<br />
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<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-79432223974125336052013-01-09T22:08:00.000-08:002013-01-09T22:08:01.634-08:00beauiful blendI started writing a blog last night, but didn't get it finished. I don't really want to remember yesterday, but I figure I should fill all of you in since so many of you have been praying for our sweet boy non stop.<br />
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Quick update...<br />
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Surgery went amazingly well. They were successful in everything that they did. When we talked with the surgeon afterwards we were told that Landon's sats were at 100. The highest they have ever gotten was like 95, but they usually hang in the high 80's so we were thrilled with this news. The surgeon told us that he will need monitoring and check ups probably still monthly for this year, but then he will likely only need an echo and checkup about once a year. We were told that he will need another surgery, but he wont need it for another 10 to 15 years, it will not have to be open heart and who knows by that time, it will most likely be a very minor procedure to fix his pulmonary valve.<br />
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Clearly we were ecstatic about this news.<br />
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We were then told we could go to the PICU waiting room and wait until they got Landon settled into his new room, then they would call us back.<br />
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We had just started eating the pizza our parents had ordered for us, when they said we could go see him.<br />
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You can never really prepare yourself for that first moment of seeing your baby, glazed eyes, tubes, blood, cords, it is just wrong.<br />
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It is just so wrong.<br />
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Our playful goofy boy was just staring lifelessly and it was painful for us to see him that way.<br />
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You can't really see it, but there's a tear coming out of his eye. The nurse told me that it was just because his eyes were dry, but I knew that it was because he was hurting.<br />
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I stood by his bed and wiped every tear as it would start to slide down his cheek. I knew my baby was still in that lifeless body and it was like he was trying to communicate with me when his eyes would twitch certain ways and he would push out his tears.<br />
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"Mama I hurt."<br />
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I could hear him saying.<br />
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My heart was already breaking, but I had no idea what lay ahead for Ryan and I in the next long hours.<br />
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Slowly but surely the sedation meds started to wear off. That was when it really started to get painful. Landon started looking around, still with the glazed eyes, but definitely looking around and following voices. Every now and then he would attempt to open his mouth a little, but you could tell that this movement was very painful for him because of the tubes down his throat. He would feel the pain and then he would bring his hands up to his mouth to pull on the breathing tube. We did our best to hold his hands down, but with every time we stopped him, he would just get more frustrated and upset.<br />
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As time passed it just got harder and harder for us to see him in so much pain. We all wanted him to be able to get his breathing tube out and we were told that he would most likely be extubated soon.<br />
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We thought that getting the tubes out of his throat would help his pain, but it only seemed to get significantly worse after he was extubated. His throat was extremely sore.<br />
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He kept getting more and more agitated. He was doing everything he could to get the oxygen out of his nose and scratch his eyes. His eyes were taped shut during the surgery so we don't know if that's why they were so itchy to him or if it was a side effect of the morphine. We were told probably a combination of both.<br />
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Landon started getting so upset that he began wrenching his back, kicking his legs and flailing his arms. We could tell that every breath was very painful for him because he would cry and writhe. It started getting to the point where it was so painful for him to breath that he was simply choosing not to. He started holding his breath for longer and longer amounts of time.<br />
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I don't think I've ever felt so helpless.<br />
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I had to fight my baby boy, grabbing and pinning down his arms, over and over and over again. He would get so upset and all of a sudden his mouth would just stay open, no breaths taken in, no breaths going out. His eyes were so wide, I knew he was scared and in pain, but the absolute worst part was when he would turn his head and open his eyes. Oh his eyes! They were so full of pain. He would look right at me with his frozen eyes and my heart would just stop. I knew he didn't understand why I was hurting him. He was trying to fix his pain in the best way he knew how, by pulling and scratching, but I wouldn't let him. He didn't understand why I wouldn't help him.<br />
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All I could do was lean over, place my mouth against his face, and whisper to him. "I'm sorry.... I'm sorry baby boy.... Mama's so sorry. I know it hurts honey. I know... I know." and then I realized...<br />
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I don't know.<br />
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I have no idea.<br />
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I have never been through any kind of pain like my baby was feeling in that moment. The only instance I could think of where I have actually suffered intense physical pain, was my labor and delivery with Landon.<br />
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You can call me crazy, but as I was thinking about that, (tears streaming down my face, still trying to calm my hysterical child) I was so <b>thankful</b> for that pain.<br />
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I was so glad that I chose to feel every once of the pain that it took to bring Landon into the world.<br />
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It just felt right.<br />
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It felt right that I endured pain for my child because in that moment I wished with all of my heart that I could take my baby's pain. I wished that I could free him from the agony and carry it for him.<br />
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I didn't think about this yesterday, but as I'm writing that I'm struck by the thought that maybe that is how Jesus felt when He went to the cross. He didn't want to endure the pain, but He chose to because of His immense and unconditional love for us. Because, He wanted to relieve us of the sin that consumes our bodies and souls like a terminal cancer.<br />
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All I know is I would of sacrificed anything to relieve Landon of his pain then and there...<br />
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We begged the nurse to give him more pain medication. So eventually she upped his Morphine.<br />
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Then another 45 min passed with us holding Landon down and begging him to keep breathing (it's really scary when the nurse even joins in on your begging).<br />
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The nurse was clearly beginning to get worried. A child who has just had his chest cut open, his sternum separated, and who has tubes, cords and IV's coming out of him, should not be moving, let alone throwing himself around.<br />
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So again she upped his Morphine thinking that all of his writhing is due to the pain he is in.<br />
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Another hour went by and nothing had changed.<br />
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I was beginning to get light headed. A person can only take so much trauma, especially when it's your child going through it.<br />
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Obviously the morphine wasn't doing squat so the nurse ordered in Fentanyl (100 times more potent then Morphine)<br />
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So we waited and waited for it to kick in, but it never seemed to.<br />
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By this point I was feeling drained and hopeless.<br />
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Landon had not stopped screaming and fighting since he got his breathing tube out, which was at 5:30. It was nearing 10:30 and it seemed there was no end in site. He had not slept AT ALL since before he was extubated.<br />
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They were discussing with us other meds they could try, when Ryan just hit his breaking point. He told them that they had tried so many pain meds and nothing was helping so it obviously is something more then just pain. He told the nurse that no amount of pain medication is going to stop his hunger. He told her that he is starving and needs to eat, but she told us again what we had already been told, that they don't want him to eat until morning.<br />
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When the nurse left the room, I told Ryan I couldn't do it much longer, by "it" I meant watching Landon gasping and writhing in pain... I just couldn't take it anymore. I'd been standing by his bed for hours and I was emotionally dying inside. I knew I was on the verge of just breaking.<br />
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So Ryan made me take a break and go sit down in the corner of the room. That's when I went on facebook and begged people to pray for Landon.<br />
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When the nurse came back in and saw that Landon was still going strong she asked me if I wanted to hold him. I said yes and that I didn't know that I could or I would have a long time ago. She said that they like to wait 24 hours after surgery, but she thought that maybe that would calm him down enough to get him to sleep.<br />
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I thought for sure... YES!! This will work! My baby will relax in my arms and finally give into to rest.<br />
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It took three nurses to get Landon lifted out of his bed and into my arms. At first it seemed to be going well, but then he just started squirming, arching his back, pulling, scratching, screaming. I begged him to calm down.<br />
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I felt so helpless.<br />
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Nothing I did, as a mama, could soothe my baby.<br />
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He kept getting worse and worse and worse. I don't know if the move just made him that much more uncomfortable, but he wouldn't stop screaming and then it happened...<br />
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We were no longer surprised by his bouts of breathe holding, but that didn't make them any less scary. This time was different though... as soon as I noticed him doing it, I started whispering to him to breathe, he continued to hold his breathe. Soon Ryan was down by his face talking to him to. Then the nurse started moving his legs and arms in hopes that the movement might get him to take a breathe. By this time, 15 to 20 sec had passed and I was now screaming at Landon to take a breathe. His eyes were closed, his mouth was wide open and he was making somewhat of a choking sound. His color was turning dark reddish blue before our eyes. His alarms were going off because his sats were falling into the 60's. My arm was supporting his head and I was bouncing it trying to startle him into breathing. He opened his eyes half way and I was horrified to see that his eyes were rolling to the back of his head. I was crying and Ryan and I were just screaming his name.<br />
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Finally, after what seemed like forever, he GASPED.<br />
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I just remember holding him and staring at his face. I have never seen it so lifeless.<br />
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After that he was still upset, but he calmed down a little, probably due to the fact that he just had absolutely no strength left.<br />
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He stopped fighting, but he was still whimpering in pain.<br />
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The nurse returned again with something she told us was an anti anxiety med. She said it would kick in right away and thank God <b>it did</b>.<br />
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After the first couple minutes passed of him laying still with his eyes closed, Ryan and I grabbed our bag of subway that had been sitting on the table untouched for 3 hours, and headed to the waiting room down the hall.<br />
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Ounce we got there, Ryan sat down, pulled me onto his lap, and we both just BROKE. It was 11:30 and I'm sure my cries woke up every sleeping body on the floor. I just sobbed and sobbed, releasing all of the emotion that was bleeding out of my heart.<br />
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I told Ryan that I felt like Landon thinks we're the enemies. I sobbed at the fact that I'm his mama and I could do absolutely nothing to help my baby. I sobbed thinking of the face that looked up at me numerous times and just begged me to do something to fix his pain. I sobbed because I had to use force to pin my child's arms down when all he wanted to do was relieve his pain, because no one else was doing it for him. I sobbed because I know my child and I know when he's hungry. I sobbed because I couldn't satisfy this most basic need of his. I sobbed because I watched my child choose suffocation over the pain it takes for him to breathe.<br />
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After Ryan and I had spent each of our tears and finally ate something, we went back into Landon's room to pull out our chairs and hopefully get some sleep.<br />
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It seemed like I had hardly laid my head on the pillow when I was awoken by Landon's screams. I wanted so badly to ignore them. I was so exhausted, but I knew there was no way I could sleep when my baby was hurting like that.<br />
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I looked at the clock and it was 1:30AM. Landon's voice was scratchy so the nurse told me she was going to see if she could suction any of it out. I helped another nurse sit Landon up and I watched as Landon's nurse proceeded to push a tube through Landon's nose and all the way down his throat. Every now and then she would push a button that pulled tons of bloody gunk out of Landon's throat. I was startled by the blood and they told me that it's not uncommon after having breathing tubes in because the tubes are large and they can scratch against the esophagus.<br />
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After they were done, Landon's breathing was much better. I was kicking myself for not telling them to try that sooner.<br />
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Although that helped Landon's breathing, it didn't seem to help his agitation. <br />
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Finally at around 2 o clock in the morning, after three nurses and the charge nurse, called the big guns to plead Landon's case for a simple bottle of formula, the request was granted. I'm sure so many of the nurses joined Landon's team because they were getting sick of his screaming waking up their patients, but whatever the reason. I couldn't have been happier making that bottle. Landon grabbed it right out of my hands, which fed my fear that he had lost all trust in his mama :(<br />
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He downed 3 ounces in 10 min and was O...U...T before the bottle had even dropped from his hands.<br />
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I wanted to share about our horrible, awful, no good day because maybe another heart (or just hurting) mama will read it someday and I can give you hope that even the worst days don't last forever. They will soon turn into yesterday and my hope is that your today will renew your hope just like mine did.<br />
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Yesterday I looked into my sons eyes and didn't see the love and adoration that I had grown so accustomed to. I feared that his trauma would scar his love for me. I was sure that I would have to earn back his trust, but then today I was reminded of the goodness and faithfulness of our God. He created children with a resilience that is unbelievable.<br />
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I tried to change my memories to words and use them to paint for you a clear picture of our yesterday. I titled the picture "pain" because everything about yesterday seemed to be painful. But today I was reminded that pain can often lead straight into joy and healing. <br />
<br />Today...<br />
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The physical therapist showing me that it's okay for Landon to sit up </div>
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He wanted to move around and play with his toys :) </div>
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Reaching for my hair and melting my heart all over again </div>
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He wanted the light on his toe </div>
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"I still love you mama."</div>
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Content and watching Cars</div>
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Everyday is a "new" day!</div>
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Some days are so much harder then other's, but I am learning that if we embrace each one and grab every ounce of the mercy God is giving us, the good and the bad days can blend together into a life that is beautiful and worth living.</div>
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<span class="text Lam-3-22" id="en-NIV-20377">Because of the <span class="small-caps" style="font-variant: small-caps;">Lord</span>’s great love we are not consumed,</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Lam-3-22">for his compassions never fail.</span></span><span class="text Lam-3-23" id="en-NIV-20378"></span></div>
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<span class="text Lam-3-23" id="en-NIV-20378"><sup class="versenum"></sup>They are new every morning;</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Lam-3-23">great is your faithfulness.</span></span></div>
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<span class="indent-1"><span class="text Lam-3-23">Lamentations 3:22</span></span></div>
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<span class="indent-1"><span class="text Lam-3-23">Thank you again to each of you who prayed for us yesterday. I don't know if there has ever been a day where our family has needed it more. </span></span></div>
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<span class="indent-1"><span class="text Lam-3-23">We love you! </span></span> </div>
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<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com4tag:blogger.com,1999:blog-6163519338730923750.post-3396445677770452662013-01-08T08:20:00.001-08:002013-01-08T08:20:09.514-08:00The waitingI'm tempted to just leave this blog completely blank because that is how I feel right now. With every time we enter this waiting room, we feel a little more prepared, but with each visit it only seems to get harder. I always wonder how I will feel in this moment, but now the wondering has turned into the present moment and I'm only left wondering why I ever wonder in the first place because it's always the same feeling... complete and total numbness.<br />
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Life seems to stand still in this waiting room.<br />
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There is no laughter, you rarely ever hear people talking. This room is respected. This room has been the bearer of good news, but it has also been the place where parents hearts have stopped beating. Most people who are beckoned to spend long L...o...n...g hours in this room stare aimlessly at the many tvs or sit on their laptops or ipads.<br />
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Ryan is playing mindless games on his phone and I usually try to waste time on facebook. Whatever we can do to keep our minds numb. I think the numbness is a gift from God. It would be too hard to feel at a time like this. <br />
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Right now hearing laughter makes we want to throw up.... just being honest.<br />
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Ryan and I ventured out to the coffee shop a while ago. When we got there the young girls who were working were all singing with the song on the radio. Usually this would of made me smile or even giggle, but not today. Today it just seemed like a cruel joke. The sun shining through the windows just feels wrong because it is such a polar opposite from the dark gloom that hovers over my heart.<br />
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Unless you have gone through something like this it is impossible for you to understand these kind of feelings. I no longer judge people who come across as crabby because I've learned that you just don't know what people are going through. Who knows, maybe that person you just judged had to say a hard good-bye recently.<br />
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Good bye was excruciating today.<br />
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Up until a couple weeks ago, Landon has been great with any one he meets. I don't know what switched in his mind, but he definitely has stranger anxiety going on now. So I knew this good bye would most likely be different then the last couple we've had at the "kissing corner", but I wasn't prepared for how Landon reacted. He clung to me, buried his head in my chest and cried. The nurse was waiting for us to put him in the bed so they could wheel him back into the OR, but I just couldn't let my baby go while he was so upset.<br />
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I knew that I couldn't take him and run, so eventually, with shaking hands I peeled Landon off of me and laid my screaming baby down in the bed. His choking sobs are still echoing in my head. Ryan and I watched as the doors opened and the nurse pulled Landon's bed through them. After the doors closed and we could no longer see the bed that held our baby boy, Ryan and I clung to each other, turned around, and began our walk down the hall that leads to this room... this dreaded room. As we were walking we heard the most blood curdeling scream I've ever heard, and I knew in a nano second that it was coming from my baby. At that moment I broke. I couldn't keep walking, it took all of my strength just to remain on my feet. Ryan pulled me in and we both cried. Well Ryan cried and I sobbed.<br />
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I know that this day is a victorious day in the eyes of God. Although I believe with all my heart that God is crying right along with us, because He doesn't disconnect Himself from our pain (Jesus proved that), I also believe that God is pleased because God is accomplishing a miracle in Landon's little heart. The doctors are so hopeful that this will be Landon's last surgery. There are no words to explain the relief and joy my heart feels when I think of that.<br />
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Sadly knowing the outcome of this day, doesn't immune us from the fear and sorrow that it carries. The only thing that we can do is wait. We wait for the phone to ring to hear any updates on what is happening in our babies OR room. We will wait the 4 to 5 hours until we can see our baby again and then we will wait with our eyes glued to monitor screens to see how Landon's body reacts to the changes that are taking place in his heart, then we will wait and wait and wait for our little man to slowly wake up. Then we will wait and wait and wait for his little body to heal.<br />
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Wait.... wait.... wait... apart from praying with our every breath, that is just all we can do right now.<br />
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Thank you for the prayers. Thank you for each of the words of encouragement. On days like today, that is what gets us through the long minutes.<br />
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Here's some pictures from our morning... </div>
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Fell asleep on the drive to the hospital. We got here around 5:45</div>
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I know he's a boy, but if there ever was a sleeping beauty... am I right? :)</div>
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Playing with the train set in the OR waiting room, waiting to go back to the pre-op room. </div>
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Back in the pre-op room, changed into his hospital jammies now. </div>
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<br />Getting our snuggles in</div>
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Papa my tummy is grumbling. Where's my nanner oatmeal</div>
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The dreaded walk.. :( </div>
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The worst good-bye </div>
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<br />
I don't know how often I will be able to blog, but like I said, I'll
be on fb most of the time. Again, all comments and prayers left on my
wall are read and so appreciated by our family. We took one of the
biggest sections in this large room and it's amazing for me to think
about the many MANY people who are with our family, not physically, but
spiritually. People of all different colors and nationalities. I see
people kneeling praying in languages that I don't know, sending up
prayers to our Father on behalf on our little boy.<br />
<br />
Truly
words can't express our thanks. We were informed that although this
will most likely be Landon's last surgery, it is still a very high risk
surgery. Your prayers are our protection against all of the scary words
the doctors throw at us.<br />
Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com5tag:blogger.com,1999:blog-6163519338730923750.post-66080906139832292732013-01-01T07:24:00.000-08:002013-01-01T07:50:35.665-08:00Our hope for 2013: Two more MiraclesLast night the world said good-bye to 2012. We watched as millions of people gathered at Time Square in NY city, dressed in big blue hats and shiny glasses shaped to make the numbers 2013. The announcers walked around like they do every year and asked some of the people what their hopes are for 2013. I was disheartened by some of the answers, they seemed shallow, the kinds of things that I'm sure everyone wishes for every year. Things that don't need to even be mentioned, like losing weight, a house, a puppy (really?). None of those things are wrong, they are just so..... earthly.<br />
<br />
You see, 2012 gave me more then I ever bargained for. It ruined me for a normal life. As Ryan and I sat in the comfort of our home, playing games, sipping sparlkling cider, and somewhat listening to what was being brodcasted from Time Square, I couldn't help but think about the wishes that matter. The wishes that wont be heard by the world because their hiding in hospital rooms, locked away in their mama's tummy, or adandoned in orphanages.<br />
<br />
Wishes for life.<br />
<br />
Some parents couldn't care less, about the size of their house, all they want is to bring their child into something that they could together, as a family, call home.<br />
<br />
Some babies speak their wish, not with words, but the fact that everyday their tiny body is growing and developing in miraculous ways. Ways that are meant to sustain them for a lifetime that their mother is contemplating not allowing them to have.<br />
<br />
There were children that went to bed last night, not even knowing that a new year is upon them. Every year, everyday is the same for them, hopeless and alone. They have no family to teach them of the joys of change. They have no idea what it means to pass from one thing into something different. <br />
<br />
What about them?<br />
<br />
Can we so easily forget about them because our focus is on, getting that new job or building that dream house? Or here's a noble cause, actually doing some of the Pinterest projects you have pinned?<br />
<br />
2012 led us to a strange place. In a sense, we feel like God is offering us our normal back. We have been told that after Landon's next surgery he will have a two ventricle, normal functioning heart and will not need anymore surgeries in his future. This is such a miracle! I can't lie, my heart almost burst when it heard the word "normal".<br />
<br />
It was like the mention of an old friend. <br />
<br />
But the more I had time to think about it the more I realized that "normal" is no friend to us at all. All she did was distract us from the things that really mattered. "Normal" made us selfish and shallow. Don't get me wrong, everybody has their own normal, but the normal I'm talking about is the one that society tries to pin us with. The one that can never be attained, but is like a mirage in our minds and leads us to believe that every one else has already attained it.<br />
<br />
I don't want that for our family. Call me crazy, but I don't want that for Landon. We want him to know that there's so much more to life then just his accomplishments.<br />
<br />
So we're not going back to "normal", not even just to look around and remember what it was like to not be burdened by the injustices and pain of this world. Yes, it might make for a nice little vacation, but we know that it's way to enticing. Ryan and I know that we could so easily get sucked back into the stress
of our old life. Chasing things that don't matter because they promise
to make us happy, but only leave us unsatisfied because we also need
this "other" thing to actually seal the deal to happiness. Nope, we're not falling for that one. You're sly "normal", but you underestimate the power of the cross.<br />
<br />
Sorry church, but God didn't call us to pick up our la-z boy recliners and follow him. What?!? Nope, He didn't even call us to pick up our 72" TV and follow him. No, it doesn't even make a difference if you got it on a Black Friday special and you paid for it with cash. That might make Dave Ramsey proud, but it's not going to get you any crowns in the Kingdom of Heaven... sorry.<br />
<br />
We are called to pick up our crosses. There's no getting around it... we're called to suffer in this life. We're called to put others needs in front of our own. We're called to die to ourselves. We're called to not conform to the world. We're called to be transformed into the likeness of Christ. <br />
<br />
So as much as Ryan and I would like to live carefree lives, where we could ignore the fact that innocent life is being abused and murdered,<br />
<br />
<b>we can't.</b><br />
<br />
I wasn't planning on telling you guys this until after Landon's surgery, but I feel like God is saying "do it." so here goes...<br />
<br />
2013 holds so much hope for us. We feel as though God is closing one chapter, but it leads so perfectly into the next it's as though one chapter is ending mid sentence and the next chapter is picking up right where it left off. <br />
<br />
Our sleepless nights, our fears, our need to be our child's advocates are far from over. In fact, we feel as though they are truly only beginning. <br />
<br />
God has brought us face to face with children no different then Landon. Children that have been labeled because they have some kind of special need. The difference between these children and our Landon is the fact that we chose to love whereas these children's parents chose to abandon. For the most part, society has looked on our Landon with lovingly concerned eyes, but for these children, their society has looked on them, pointed a finger, and said "worthless." Landon has been able to get some of the best medical treatment out there, but these children have been transferred to a mental institution at the age of 5, where they will spend the rest of their short life confined to a crib.<br />
<br />
God has BROKE our hearts more over the past 6 months then I can even explain with words. Each episode of brokenness has led us further and further down a path of total surrender. A path that feels so right, it's as though we are taking steps into footprints that God already fitted perfectly for our feet.<br />
<br />
Ryan and I have known since we were dating that someday we would adopt. We knew that we would likely have more adopted children then biological. We had even talked about adopting our first child. That plan obviously didn't pan out since I got pregnant a month into our marriage.<br />
<br />
But here is the part I am very ashamed of.<br />
<br />
Before Landon, I NEVER would have considered adopting a child with special needs. I justified my prejudice with thoughts like, <i>God calls special people to parent children like that. </i>Then God did something I thought was mean, He didn't even give me the choice. He just placed a special heart in my womb and through it, He taught me what unconditional love truly looks like. It looks like loving your child, not for their looks or their abilities, but just because they are your child and there's nothing that could quench the love you have for them. <br />
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We were all labeled special needs before Christ died for us. We were helpless, ugly, and had no worth, but God didn't care. He loved us despite our sin. He reached down and chose us, not because of what we could do for Him, but simply because he loved us. (period!)<br />
<br />
God has asked us if we are willing to demonstrate this kind of love for a child. <br />
<br />
Armed with everything God has taught us about love and life in 2012, we are entering 2013 as completely different people then we were New Years day last year. Last year, I held a change in my womb that I didn't choose nor want, but this year, God is giving us the choice between "normal" and "transformation" and we're happy to announce we're choosing the latter.<br />
<br />
This is going to mean a lot of things for our family.<br />
<br />
It means that we need your support more then ever before.<br />
<br />
I know many of you are going to exit out of our blog in this new year, yelling at us in your head, telling us that we are absolutely nuts! That's okay, we probably are, but we have no doubt that God is going before us down this crazy path, leading our way.<br />
<br />
Soooooo..... <br />
<br />
We're adopting.<br />
<br />
No, it is not the ideal time for us. We told God when we would pursue adoption....<br />
<br />
After I'm done with school.<br />
<br />
After Landon's last surgery.<br />
<br />
After we get a house.<br />
<br />
After we pay off our student loans.<br />
<br />
Then he replied by showing us the faces of two precious boys that may not have a year.<br />
<br />
So yes, we may be crazy, but if Landon's life depended on some family across the world being crazy and adopting him when everyone else was just waiting for him to die, we wouldn't care how crazy and how uncomfortable it may make their life. We would just beg them saying, "this is our son! Please go to him. Please love him."<br />
<br />
That is exactly what God has told us. <i>"These are my boys Ryan and Natalie. They don't have time. Please go to them. Please love them. I will give you everything you will need, all I need from you is your willing heart." </i><br />
<br />
Our hope for 2013 is for a miracle. A miracle that will bring two more miracles into our home.<br />
<br />
<br />
<br />
<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com6tag:blogger.com,1999:blog-6163519338730923750.post-19731147673235317602012-12-10T08:17:00.001-08:002012-12-10T08:17:26.576-08:00What I couldn't say then..It is so hard to believe that at this time last year. We were grieving the loss of our baby. We couldn't see then that God had to take away our dreams so that he could give us something better then we could have ever imagined.<br />
<br />
Thank you Lord for our child. No matter what we may face with him, we praise You for creating him and knitting him together just the way You did. He is beautiful and perfect.<br />
That scar down his chest is a constant reminder to us that he is fearfully and wonderfully made. You don't make mistakes. I don't know where or who I would be without his precious heart.<br />
<br />
So today I'm choosing to say what I couldn't say last year...<br />
<br />
Thank you!<br />
<br />
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<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-11686892045526522392012-12-04T07:08:00.000-08:002014-10-01T22:42:36.281-07:00To think some people miss this..I've been pretty emotional the last couple days. Maybe it's the stress of school or maybe it's the fact that our baby boy turned 8 months old yesterday!<br />
<br />
This morning I was in the kitchen and I peaked over the corner to look at him, there he was, sitting up all by himself, happily pulling one toy after another out of his bucket. In that moment I was just blown away at how he has grown. It feels like it was just days ago that we finally moved out of NB clothes, gave him his first real bath and heard him babble for the first time, and now we're quickly approaching that 1st birthday. I just don't know how it's possible!! As I was thinking about these things and watching my big boy from a distance, a thought entered my mind. A thought that brought me to tears...<br />
<br />
<i>To think that some people miss this...</i><br />
<br />
I thought of not only all of the babies diagnosed with CHD's or any other kind of disease or disability, but of EVERY baby who's ever been aborted.<br />
<i> </i><br />
I thought of what our life today would be like if we didn't have this precious child and that thought is truly... <b>unthinkable.</b><br />
<br />
To think that some people miss out on this <b>beauty</b>.<br />
<br />
To think that some people miss out on the chance to taste something that is so <b>heavenly</b>, so <b>pure</b>, so <b>life changing</b>.<br />
<br />
To think that some people choose to miss out on the change that these helpless little ones bring.<br />
<br />
Isn't that why people get abortions? They don't want the change that a child will bring into their lives?<br />
<br />
If you are one who has made this choice, please don't think that I am condemning you... I get it. I've been there in that moment and while I was there, for the first time, I understood.<br />
<br />
After we found out I was pregnant, I was devastated.<br />
<br />
In that moment you're not thinking clearly. I remember laying in bed and just praying that I would wake up the next day and find that it was all a dream, that I really wasn't pregnant, and that our life could stay the same. In that moment I thought to myself, <i>I understand why people get an abortion.</i><br />
<br />
In that moment it did sound easy. It sounded like it would be simple to just walk into a clinic carrying change in my womb and to leave without it and return home to the nice little life I was living before a pregnancy test rocked it.<br />
<br />
<i>To think that some people miss this.</i><br />
<br />
No, I'm not sharing this to condemn anyone, I'm sharing it because our world is traveling quickly into a very scary place. A place where a person's worth is based on their abilities. a place where voices are only heard if they possess the ability to speak.<br />
<br />
This terrifies me! What will our world look like without all the beauty and change that these little bundles of "imperfection" bring?<br />
<br />
I say "imperfection" because now a days there are multiple tests that pregnant women can have to tell them if there may be something "wrong" with their child. 90% of children diagnosed with Down Syndrome are aborted. God help us! God help us that we are given the choice to opt out of the beauty and change that He so desperately wants to bring into our lives. <br />
<br />
My prayer is that, through this blog, people's eyes are opened to how beautiful different can be. I pray that our journey has taught you that along with pain, comes healing.<br />
<br />
On that day when I found out I was pregnant, I didn't know that my heart needed to be broken. I didn't know my world was lacking beauty. I didn't know that I was blind... but I do now. <br />
<br />
<i>To think that some people miss this...</i><br />
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Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-72147770885418981422012-11-29T12:03:00.000-08:002012-11-29T12:09:04.494-08:00Better than a hallelujah kind of daySometimes 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.<br />
<br />
This is one of those days.<br />
<br />
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...<br />
<br />
but I can't...<br />
<br />
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...<br />
<br />
But none of those things are working today.<br />
<br />
My heart is so heavy. Tears have permanently made their residence on the cliff of my lower eye lid today.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
But now we're home... and it's all hitting me at once.<br />
<br />
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. <i>How can he still smile?</i> <i>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><br />
<br />
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.<br />
<i> </i><br />
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.<br />
<br />
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.<br />
<br />
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 <b>"why"</b>.<br />
<br />
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.<br />
<br />
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?"<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
<br />
So today I'm allowing myself to be a mess.<br />
<br />
today I'm not going to force a hallelujah.<br />
<br />
and ya know what... I believe that's okay. <br />
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<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-25696723178999186432012-11-27T13:48:00.002-08:002012-11-27T14:07:59.751-08:00Possible Christmas surgeryHello 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.<br />
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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.<br />
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Since today has been pretty low key and uneventful I figured I should let you guys know what we were told yesterday.<br />
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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.<br />
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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?<br />
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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. <br />
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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.<br />
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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.<br />
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Here's some pics from our hospital stay...<br />
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This was taken while Landon was on the board in the PACU yesterday. He was obviously not himself :(<br />
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Last night when he was finally starting to wake up and be himself :) </div>
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Sleeping with his new giraffe that his heart pal Cameron got him.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAaib2AOUJWZ0nHCZnie6s40RoM6h-_bts9znxjzCLFm0MJEzGZH8D2I7RqMmGe9zxmQ1oIuLpTuGNVpE9qWUmxI9CJQj6B47PL-a2M2uBzvh9mYUl84cCWLMSC2LxDdZDpakzYNncB2E/s1600/IMG_0498.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="426" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAaib2AOUJWZ0nHCZnie6s40RoM6h-_bts9znxjzCLFm0MJEzGZH8D2I7RqMmGe9zxmQ1oIuLpTuGNVpE9qWUmxI9CJQj6B47PL-a2M2uBzvh9mYUl84cCWLMSC2LxDdZDpakzYNncB2E/s640/IMG_0498.JPG" width="640" /></a>Watching morning cartoons with papa. Feeling MUCH better today! </div>
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Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-49168545848376736022012-11-26T19:40:00.004-08:002012-11-26T19:46:22.808-08:00UpdateI'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.<br />
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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.<br />
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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.<br />
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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. <br />
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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.<br />
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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 :(<br />
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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.<br />
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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.<br />
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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.<br />
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Well got to go, nurses are back to try to find that stinkin pulse again.<br />
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The only thing that encouraged me all day was reading that so many of you were lifting our family up in your prayers.Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com1tag:blogger.com,1999:blog-6163519338730923750.post-785967369850870542012-11-26T08:39:00.001-08:002012-11-26T08:41:18.536-08:00It'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.<br />
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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.<br />
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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.<br />
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Today is our D Day.<br />
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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 :(<br />
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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 :(<br />
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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.<br />
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The horrid screen! Landon is Ma..IL he went into pre op at 6:29 and the OR at 7:46.<br />
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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.<br />
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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. <br />
<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com1tag:blogger.com,1999:blog-6163519338730923750.post-3867750609821038712012-11-23T20:25:00.003-08:002012-11-27T11:52:48.069-08:00Beautiful<style>
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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.</div>
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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. </div>
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When we were all finished it looked like this</div>
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When the kids walked in this is what they saw... </div>
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Then if they walked around the corner into the play room they saw this!! I wish you could of seen their faces brighten!! <br />
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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. </div>
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They were priceless.</div>
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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.</div>
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I have so many stories, but these are a few of the ones that
REALLY hit my heart.</div>
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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.</div>
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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. </div>
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While we were setting all of them out, I saw the Thomas the
train mini one. I thought <i style="mso-bidi-font-style: normal;">oh this one
would be perfect for his baby</i>, so I set it aside.</div>
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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.</div>
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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.</div>
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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.</div>
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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!</div>
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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.</div>
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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!)</div>
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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. </div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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Okay, I’ll close this project with one last story…</div>
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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.</div>
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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.</div>
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We serve an AWESOME God!!</div>
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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. </div>
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Seeing all of these things and meeting all these children
and their families did not only make our day… it’s changed our lives. </div>
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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. </div>
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Today these kids got to be kids.</div>
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Can you believe we have a God that loves like that?????</div>
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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. </div>
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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. </div>
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Thank you Father for what you did today... You’re beautiful.</div>
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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.</div>
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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.<br />
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Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com4tag:blogger.com,1999:blog-6163519338730923750.post-462748024843957822012-11-22T10:26:00.001-08:002012-11-22T10:26:06.291-08:00Happy 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 :)<br />
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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.<br />
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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.<br />
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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.<br />
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Pass laptop to Ryan so he can explain the technical stuff...<br />
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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.<br />
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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 :)<br />
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.<br />
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Prayer requests<br />
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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.<br />
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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.<br />
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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.<br />
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.<br />
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We are dreading Monday, but we have so much that we are enjoying and looking forward to.<br />
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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!!<br />
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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!<br />
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It is now morning so I will update on how Landon did last night. <br />
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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.<br />
<br />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.<br />
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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 :(<br />
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He was having so much fun last night though. He made a new friend...<br />
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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.<br />
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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. <br />
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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. <br />
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Hoping this blog finds each of you surrounded by family and yummy smelling food. We are blessed beyond measure!<br />
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Praise God from whom all blessings flow. HAPPY THANKSGIVING everyone!!!Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-37954797864229937372012-11-19T09:20:00.001-08:002012-11-19T09:24:45.067-08:00Pillow 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.<br />
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So here you go...<br />
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This was taken a couple days ago. Shortly after taking this pic the wall of pillow pets came tumbling down.<br />
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We decided the next day it was time to start packing!!<br />
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The jumbo space bags fit about 10 pillow pets in them!!<br />
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We had family come to visit this past weekend so the pillow pets got moved into our bedroom. <br />
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Not all of the bags have been vacuumed yet. <br />
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There's about 30 pillow pets scrunched into those little bags!!<br />
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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.<br />
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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!!<br />
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<b>Plans changed a little bit again.</b><br />
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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.<br />
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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 :)<br />
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<b>We ran into a small downer.</b><br />
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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.<br />
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After I got over my initial discouragement I determined before God that we will show His love in whatever way we can. It <b>IS</b> because of Him that we are doing this after all. <b>HE IS</b> the one who wants these kids to get these special gifts.<b> HE IS</b> the only one who knows each of their names and <b>HE IS</b> 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... <b>BUT THEY CAN'T</b> take Christ out of our hearts. I realized that God is relying on <b>US</b>, 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 <b>SHOUT</b> his name loud and clear simply <b>BY OUR LOVE</b>.<br />
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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 <b>ONE TRUE LIVING GOD </b>speaks to their hearts.<br />
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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).<br />
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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).<br />
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<b>WE NEED YOUR PRAYERS</b><br />
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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.<br />
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<b>ABOVE ALL, pray that GOD'S WILL BE DONE.</b><br />
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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.<br />
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We love him so much more than words can say!!!<br />
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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.<br />
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Sending LOVE from the Maxwell's!!Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com1tag:blogger.com,1999:blog-6163519338730923750.post-88143611968742416302012-11-05T09:40:00.003-08:002012-11-14T18:19:25.418-08:00Wide 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 :)<br />
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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.<br />
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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. <br />
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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.<br />
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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 :)<br />
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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.<br />
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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<br />
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It's also SHOE BOX TIME people! If you're not familiar with Operation Christmas Child you can go to their link <a href="http://www.samaritanspurse.org/index.php/OCC/Pack_A_Shoe_Box/">here</a>. 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 <a href="http://www.focusonthefamily.com/radio.aspx">focus on the family</a> 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.<br />
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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.<br />
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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.<br />
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Click on the link below and watch this families story and the ministry they have created.<br />
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<a href="http://vimeo.com/46569777#">Bring Love In</a><br />
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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.<br />
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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.<br />
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In this world is<b> pain.</b><br />
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In this world is <b>hearbreak</b>.<br />
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In this world is <b>death</b>, but in this world we have also found...<br />
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<b>LIFE</b>.<br />
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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 <b>DONE</b> putting God in a box.<b> DONE</b> 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 <b>WIDE AWAKE</b>!<br />
<br />
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"<br />
<br />
Hope to see you there!!<br />
<br />
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 :)<br />
<br />
Happy Monday!!Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-28065641706642953312012-10-29T16:23:00.000-07:002012-10-29T16:23:37.564-07:00This Crazy Life We Live (yet ANOTHER update on Landon)I appoligize ahead of time that my family is so confusing and hard to follow. Don't feel bad you're not alone. Most of the time, it seems that I don't really know what's going on either.<br />
<br />
Okay read on... <br />
<br />
I had a feeling there might be a reason why I just didn't feel peace about Landon not going to Amplatz this month...<br />
<br />
I FINALLY got to talk to Dr. Kochilas. We've been playing phone tag for the past couple days. Do doctors ever go home?? I would call him in the morning and he'd finally return my call at like 7:30PM. By that time I had given up hope of hearing from him and didn't have my phone on me. I've learned my lesson, doctors obviously don't have personal lives. We all need to show ALOT more gratitude to these special people because I can't imagine what they sacrifice so that they can save lives and change the future of our children.<br />
<br />
Sorry, that was a tangent and I didn't even give you a warning.<br />
<br />
He was very easy to talk to and seemed very interested in how Landon is doing. I was surprised by this because I was expecting him to tell me that Landon is fine and they're not going to worry about him unless he takes a turn for the worse. Instead, he told me that he wishes he could get a better evaluation of Landon and that his postponment of the cath was simply based on what Fernandez told him about Landon. "You mean you haven't even seen his last echo?" I asked. "Not his most recent one, no" he told me and the one he did get sent to him didn't show everything he would of liked to see (I guess I'm going to have to be that mom who's picky about who does his echos from now on). He told me that they will want to see Landon anytime between now and his first birthday, but he didn't want to ask us to make the long trip since right now it doesn't seem urgent. I told him that we are planning on being in Minneapolis over Thanksgiving if any time around that would work for them. He was VERY happy with this news and I was amazed at how he said he could get Landon in.<br />
<br />
So as of now "the plan"(no guarantees it wont change AGAIN) is to bring Landon to Amplatz the day before Thanksgiving to have a COMPLETE evaluation. Do our pillow pet project Thanksgiving and the day after. Then most likely Landon will have a heart catheterization done on Monday.<br />
<br />
OH MAN!!!<br />
<br />
I'm kind of in shock and don't know how to comprehend all these changes. It seems like just when I get used to an idea BOOM!! It changes!!<br />
<br />
This is the crazy life we live. <br />
<br />
Prayer requests:<br />
<br />
Pray for our sanity. I don't know how many more changes I can take!<br />
<br />
Pray for SPACE BAGS. We thought we would have time to purchase pillow pets in Minneapolis the day before we hand them out but now I'm sure we'll be at the hospital all day. Maybe we can go down another day sooner, but Ryan does have a job so it's difficult. We don't know how much work he will have to miss because of Landon so we want to use his vacation time wisely.<br />
<br />
Pray that Landon's eval. goes well. Maybe there's a chance (I don't believe in chances I believe in miracles) he wont even need the heart cath.<br />
<br />
Continue to pray for the special kids God is going to bless. We are still VERY... OH SO VERY excited about the pillow pet project. I just read an article in the brochure we get from the Ronald McDonald house and it told the story of a little boy named Isaac. Isaac is only 3 years old and has had to endure 30 surgeries already. After spending 4 months in the NICU after he was born, he suddenly took an extreme turn for the worst and was close to death. He was then transferred from his hometown in Virginia to Amplatz Childrens hospital in Minneapolis where his family stayed with him for 14 months (14 months!!!) His family lived in the same Ronald McDonald house that Ryan and I stayed at. They are still, to this day, making once a month trips to Minneapolis. As sad as it would be for them to have to spend Thanksgiving there. I so hope that I can hug this sweet child and give him one of these special gifts!<br />
<br />
Reading that story gets me even more excited for what God is allowing us to do. It's helps us put a face and a story to these pillow pets. <br />
<br />
The article also says this, "The Twin Cities medical community is treating some of the world's most complex cases, sometimes involving extensive surgeries and procedures, requiring patients to stay nearby for weeks or even months. Due to the critical nature of the diseases treated in this community, the Ronald McDonald House - Oak Street (Me and Ryan's home for a week) supports families for longer average stays than any other Ronald McDonald House program in the world."<br />
<br />
(Hot Dish From Our House To Yours, Fall/Winter 2012)<br />
<br />
How awesome is that! Ryan and I can't wait to go back there. My only concern is... that we wont have ENOUGH pillow pets to go around. This House provides rooms for 48 families, assuming each of those families has one or two children...well that pretty much wipes out our pillow pets without even getting to Amplatz. I'm not sure if we will go to the House or the hospital first. I almost think it would be better to go to the house on Thanksgiving and the hospital the next day... so you can see my concern.<br />
<br />
We are so grateful for all of you and how you have blessed these special children, but there are so many of them and I can't imagine what I would do if we didn't have enough for them. I'll leave it between you and the Lord, but know that if you have already given, we are SO grateful. I never want this to come across as begging or ingratitude for what has already been accomplished through each of you.<br />
<br />
God has got it.. we can't forget what He did with barley loaves... I'm not worried :)<br />
<br />
Some may think that the news we received today was bad. I wouldn't call it that, in fact, I'm relieved. I'm relieved that Landon is going to be evaluated by some of the best cardiologists in the country. We are his advocates and that means doing the hard things to make sure our little man gets the absolute best care possible. I'm choosing to look at this as an answer to prayer. Thank God He put that mommy instinct in me to keep calling until I got through. <br />
<br />
Yes, this IS a crazy life we live, but one look at this face makes it ALL WORTH IT.<br />
<br />
<a href="http://sphotos-a.xx.fbcdn.net/hphotos-prn1/150519_10151099222466924_715369544_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" class="fbPhotoImage" height="640" id="fbPhotoImage" src="http://sphotos-a.xx.fbcdn.net/hphotos-prn1/150519_10151099222466924_715369544_n.jpg" width="480" /></a><br />
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Thank you for your support and your continued prayers.<br />
We love you!!Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-22850868385727722032012-10-29T04:17:00.001-07:002012-11-23T21:17:28.227-08:00Even If<div class="separator" style="clear: both; text-align: center;">
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/cEKd8HToCfM?feature=player_embedded' frameborder='0'></iframe><br />
<br />
This is the video we made to show for church yesterday.<br />
<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-31817829463390510692012-10-29T03:48:00.004-07:002012-10-29T03:55:29.117-07:00The Great Exchange<div class="MsoNormal">
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{page:WordSection1;}</style>When we lay down our heads on our pillows at night I may not
feel like I’ve changed the world or made huge accomplishments, but Lord flood
my heart with peace in knowing… we HAVE changed the world simply by our love.
Whether tough or tender love ALWAYS counts. A man yesterday came up to me after
church and gave me a check for the pillow pet project. He told me that you gave
him something for me. He leaned over and showed me what he had written on the
memo of the check, “Landon’s Legacy of Love.” I didn’t think much of it at the
time, but when I told Ryan he said, “maybe that is what our new website should
be called?” Since then I’ve thought about it a lot. Yes Lord, that is what we
want our life to be… a legacy of love. It all started with that tiny 6 month
old that’s sound asleep on the other side of the wall I’m sitting by. That
small, brave child who, just yesterday, had an entire congregation in tears, I
am so amazed Lord. I am so amazed how You have used our child, even as young as
he is, even with him never leaving the confinement of this apartment, you have
used Him to immensely touch and inspire others. I am blown away and the only
words I can find are the small words that this English language I speak uses to
express gratitude, but I know you deserve so much more… so take my heart Lord.
I know that is what You are always after anyway. Words are nice, but only if
they're inscribed on a heart that lays in outstretched hands. Here I am Lord.
Have me. Wreck me for Your purposes. Break this heart and sew it back together
with Your thread of passion, each time giving me a little more of Your heart Lord.
Because you see… we are both after the same thing… You want my heart and
Abba, Oh Abba, all I want is YOURS.</div>
Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com1tag:blogger.com,1999:blog-6163519338730923750.post-82322040207248342192012-10-27T06:13:00.001-07:002012-10-27T06:24:46.680-07:00What are you doing Lord?That was my response when I hung up the phone with Dr. Fernandez yesterday. Seconds later a sick queasy feeling overtook my body which hasn't left yet. I am the type of person that needs to know the plan. And once I know the plan, you better not change it on me! I've been this way since I was a child. The ONLY way I actually like change is if I make it happen myself, like if I make the decision to get a new comforter for our bed or arrange the living room furniture, that kind of change... I like. That kind of change... I welcome. The kind of change that happened yesterday... I don't really know what to do with it. <br />
<br />
Okay okay okay, I wont leave you hanging any longer. This is what happened... So last Friday I got sick of waiting and I called U of M and asked what the heck was taking them so STINKIN long??? Not in those exact words of course, but that's what the bolder silent me said. A woman called me back shortly and told me that they didn't seem to have any information saying that Landon needed a heart cath done.<br />
<br />
WHAT!!!<br />
<br />
I actually said that and I used that many exclamation points too.<br />
<br />
She told me that she would call Dr. Fernandez and get back to me early the following week (this week).<br />
<br />
I waited...<br />
<br />
Nothing.<br />
<br />
So I called Dr. Fernandez on Monday<br />
<br />
waited...<br />
<br />
Nothing.<br />
<br />
So I called the lady at U of M back on Tues. She told me that Dr. Fernandez said he would call me. I explained to her that he didn't. Then she told me that as far as she knew the doctors and surgeons were still discussing Landons case. I took that to mean, they were still trying to find a date that works for the heart cath. I told her thank you and hung up.<br />
<br />
Continued to wait to hear back from them...<br />
<br />
Nothing.<br />
<br />
FINALLY Dr. Fernandez called me yesterday (Thursday) and told me that... get ready for it... He talked with Dr. Kochilas (Landon's cardiologist at Amplatz) and he told him that because Landons oxygen saturation levels have been so good they want to wait a year to do the cath and the Bi-directional Glen.<br />
<br />
WHAT!!!<br />
<br />
I didn't know what to say.<br />
<br />
I asked some questions to which Fernandez threw back some quick replies. He told me that he will continue to do echos on Landon once a month and if his sats drop at all, they will make plans to get him to Amplatz right away.<br />
<br />
We hung up and I just felt sick.<br />
<br />
What are you doing Lord??<br />
<br />
This doesn't make sense at all!<br />
<br />
What are you doing Lord?? <br />
<br />
Our apartment is getting overrun with pillow pets that need to get to their kids.<br />
<br />
What are you doing Lord???<br />
<br />
Fernandez was just freaking us out a couple weeks ago and telling us that Landon will most likely need the Glen very soon.<br />
<br />
What are you doing Lord??<br />
<br />
I don't understand.<br />
<br />
It's a day later and I still don't understand. I still feel sick, but truthfully I think that's more a side effect of the flu shot I got yesterday. I called Dr. Kochilas today and was told he would get back to me. It's 5:42PM and I haven't heard anything yet. I have so many questions I need answered.<br />
<br />
Will the heart cath be in a year or when Landon is a year old?<br />
<br />
How much do his sats need to drop before they will want to do something?<br />
<br />
Why has our cardiologist here in Bismarck been giving us such a different picture. <br />
<br />
Is it safe to take him to places like church if we don't let anyone hold him or let him be near anyone who hasn't had their flu shot?<br />
<br />
So many questions...<br />
<br />
<br />
I woke up today with a different perspective then yesterday. This is GOOD news. UNEXPECTED news... but good news nonetheless.<br />
<br />
This is what we've been praying for. This truly is a miracle!! Landon is doing SO WELL!! He will only get bigger and stronger so if he does need another surgery in a year, he will be more ready for it. We wont be any more ready for it and we just wanted to get it over with, but we're just going to take one day at a time, keep praying, and cross each bridge and climb every mountain as they come.<br />
<br />
This is a HUGE blessing for the pillow pet project!! At first I was worried, but God has worked it all out. My family was already planning on gathering at my aunts for Thanksgiving so, as of now, our plans (do I dare even say "our plans" anymore?) are to travel to the Cities the day before Thanksgiving (Ryan was already planning on taking a lot of work off this month so that works perfect) and spending the day scouring Minneapolis and the surrounding areas for pillow pets. We will spend most of Thanksgiving Day at Amplatz bringing smiles and giving the families who are forced to spend their holiday cooped up in a hospital room, something to be thankful for. Not that a pillow pet from strangers makes up for family, turkey and mashed potatoes, but it's something. I can't really think of a better day that these families will need to be encouraged and feel the presence of God. If we still have pillow pets that need little arms to cuddle them, we will go to the Ronald McDonald house and give them to the kids there the next day. I would love for this to happen because the atmosphere is much more relaxed there so we could play with the kids and really get to know them and their families. Yesterday (before we received our unexpected news) I was able to get connected to the childrens administrator at Amplatz. She told me that they usually only accept donations and they don't allow people to deliver the gifts in person, but she LOVED the pillow pet idea. She told me her two children have pillow pets and they love them. "What an awesome thing for these kids to have in their rooms with them." she told me. She said to call her when we know when we'll be there and she will personally escort us around so we can give them out.<br />
<br />
HOW AWESOME IS THAT!!<br />
<br />
God is just blowing open doors for this thing. I didn't really think we would make our goal, but now we just may go above and beyond... so like God :)<br />
<br />
It seems like (especially this past month) I am constantly standing back (more like getting blown back in shock and knocked on my keister) at God. He is so STINKIN AMAZING!!! I tell Him this on a daily basis so if you have a problem with me using the word "STINKIN" in my praise to God, don't worry He's used to it :) <br />
<br />
God is doing so much in our life right now. He has been speaking very loudly to us and making some things very clear. I SO want to share with all of you the direction God seems to be leading our family, but the time just isn't right quite yet. One thing is for sure... "As the Heavens are higher then the earth, so are His ways higher then our ways and His thoughts then our thoughts." Isaiah 55:9<br />
<br />
You will want to stay posted :)<br />
<br />
Just a footnote for those of you who jump to conclusions and make everything baby news... no I'm not pregnant :)<br />
<br />
<br />
<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com2tag:blogger.com,1999:blog-6163519338730923750.post-11817172727661926582012-10-23T05:36:00.000-07:002012-10-23T05:36:21.702-07:00NO SMALL thing!!I cannot believe that I once thought this pillow pet idea God laid on our hearts was something small. We quickly realized last night that this is definitely no "small" en devour. We bundled Landon up yesterday and went out in search of these cuddly creatures. We only found 3 left at Walmart and 4 left at Target. We took that as our confirmation that kids LOVE these things! After noticing that it only took 3 to fill up our grocery cart Ryan asked, "Babe ummm do we plan on bringing anything besides pillow pets to MN? Don't you think we might want to bring some extra clothes or something?" He was right!! How are we going to fit all of these in our vehicle???<br />
<br />
We bought a couple x large space bags, but we're going to need a whole lot more than a two.<br />
<br />
Having exhausted Walmart and Targets pillow pet selection, Landon and I ventured out again today to try some other stores. Having been to two with no luck I was getting a little discouraged. We really don't want to be stopping at every Walmart from Bismarck to Minneapolis to buy pillow pets, but if that's what it comes down to, that is exactly what we'll do.<br />
<br />
Kmart I owe you an apology. I've never liked you and I've even said before that your stores have weird layouts and your stuff is cheap... sorry. YOU CAME THROUGH FOR US!!! BIG TIME!! I will forever return to you with all of my pillow pet needs!<br />
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SCORE!!<br />
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I practically screeched with delight when I rounded the corner of an aisle and my eyes fell on a large tower stuffed FULL of pillow pets!! There was a woman who was searching through them... the poor soul. I would love to know what she was thinking when I proceeded to STUFF my cart full of every different one I could find. "OH look Landon! They have a butterfly! Isn't it pretty?" STUFF in cart. I hope she thought I was some kooky lady who collects them for a hobby LOL. Seriously I had to walk on my tip toes to the checkout because I couldn't see over them. Good thing Landon had his helmet on because I'm sure that ride wasn't the safest haha.<br />
<br />
There it is folks! The growing wall of pillow pets that is invading our apartment. Don't feel sorry for us though, they're very welcome guests :) Ryan's favorite of course is the blue dino in the back. According to him, "We have to get a lot more of those because all the boys will want them." I'm loving the neon pink hippos and how cute is that little Thomas the train!! <br />
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I think Landon is a little confused by them. He may think we're going a little overboard and spoiling him a bit... I don't know haha.<br />
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I cannot tell you how excited we are... (pause for dramatic effect) WE ARE SO EXCITED!!!!!! Something has happened in me and Ryan now that these things are actually residing in our home. We are beginning to understand why God has called us to do this. We feel like God has an invisible name on each of these animals. A name that belongs to some special little child out there who is going through a lot of junk that kids shouldn't have to worry about. We know that we can't answer their prayers or give them a normal childhood, but we can make this special delivery from God and tell them that they are loved by Him. He knows their name, their story, the waiting list their on, how many rounds of chemo they've had etc. It's blowing our minds that God is giving us this opportunity to not only bless these amazing children, but be blessed by them.<br />
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This would NOT be happening if it wasn't for You!<br />
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Thank you just doesn't seem like a big enough word to tell you guys how grateful we are. Your support is what made this possible. I know we still have a ways to go to make it to our goal, but you guys believed in this, when to us it seemed like an out of reach, crazy idea. Now look!! It's taking shape and taking over our home!!<br />
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So THANK YOU THANK YOU THANK YOU!!!! (hopefully the caps and the repetition help you get the picture... we're extremely grateful!)<br />
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With that said, it's time to really roll up our sleeves, link arms and get going. These are the things we need to really make this thing happen for these kids.<br />
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~ First and foremost PRAY! Please, pray for all of the details that have to go into this. Pray for the kids who are going to receive these. Pray for us, that we can empty ourselves and enter that hospital completely filled with the Holy Spirit. Pray that God leads more people to give and be a part of this work He's doing. <br />
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~ If any of you have space bags that you wouldn't mind giving to us we would SO appreciate it.<br />
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~ Bismarck friends, if any of you are good at using a printer and have some extra time on your hands, we would like to make tags to tie around each of the pillow pets. Pretty simple, just "Jesus loves you" on one side and landonsletters.blogspot.com on the other. I am technically challenged and can't even imagine how I could find time to print all of these, let alone figure out how. I get stressed out just thinking about it, so if this sounds "fun" to you. AWESOME!! Let us know and we'll connect.<br />
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~ Lastly, we still have a ways to go to reach our goal of 100 kids. So here is a challenge... I know so many of you have generously given already so I'm not going to ask you for another big gift, but I am going to ask that everyone who reads this give $2. That's nothing right? BUT I know that at least 100 of you are going to read this so that small $2 will easily turn into over $200. How beautiful that God can take something so small and multiply it through His people. Also PLEASE SHARE this post on your facebook, tell your friends to share it on theirs. We know WE NEED YOU.<br />
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God is so amazing! We are anxiously waiting in expectation for the works He is going to accomplish.Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com3tag:blogger.com,1999:blog-6163519338730923750.post-43034826603692354522012-10-13T14:20:00.002-07:002012-10-13T14:33:37.873-07:00A special kind of beautiful (update on Landon)Oh yesterday... how long you were. How you turned from excitement to heartbreaking disappointment, back to excitement, and eventually led me to a night of gut wrenching laughter and deep enriching conversation. Oh yesterday, how I hated you and loved you all at the same time.<br />
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Yesterday I woke up excited because I sent in my final assignments the night before and I was beginning a whole week of guilt free, no due dates living before I have to start up a brand new term of courses. I had a relaxed morning full of sitting on the floor playing with Landon, reading, and browsing the webernet (no spell check that's really what I want to say!) It's so easy to lose track of the time when you don't have a care in the world. I looked at the clock and it said 10:50. Ahh Ryan was getting off work at 11 and I had to be ready with the babe so that we could head to the hospital as soon as he got home (cue mad rush). I hurried and made Landon a bottle, packed his baby bag, got him up from his nap and into his car seat and piled everything by the door, including Landon. Ryan got home and away we went. I was SO glad that Ryan decided to take off a half day of work so he could come with me. We both knew that this was going to be a very important appointment. It was going to be our last appointment in Bismarck before we go back to Minneapolis. We checked in and headed up to heart and lung. As we were sitting in the waiting room, I leaned over and whispered in Ryan's ear, "I think Landon is the youngest one here." We both laughed because everyone besides our family and the receptionists had to be over 60. It's always such a strange disturbing thought for me to think that most of the people who are there because of their heart, have lived such long lives and their hearts are now beginning to fail them. Then there's my boy, and tons of other kids like him, who possess hearts that have failed them before they were even born. It's such a tough thought and one I try not to dwell on because it leads me to ponder questions that can't be answered this side of heaven. <br />
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Landon's echo was an... experience. I don't know what was up with him, if he was just showing off his rebellious side for his papa to witness or if his teeth were really bugging him, but he started SCREAMING when we laid him on the bed and they started the echo. Usually he just lays quietly the whole time and lets the nurse do her thing, but not yesterday. She had to stop what she was doing three times so that we could pick him up and calm him. I thought we were going to be there all day. Ryan laid down on the bed with Landon laying on his chest and that worked for quite a while, but then he got fussy (again) and everyone left us alone (again) for 15 min so we could get him calmed down. He finally decided to take his bottle and that seemed to help a lot. I sat awkward and uncomfortably on the side of the bed with my poor exhausted scantily clad babe in my arms, while they maneuvered the little cold wand around on his chest, getting every which way angled pictures of his heart. So finally after a long hard battle they were satisfied and said that we could go. Uhh what a relief after being in that small dark room with a very irritable baby for an hour and a half. The open door was a light at the end of a very long LOUD tunnel.<br />
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We then went to a different part of the hospital for our appointment with Fernandez. Have a stated how AWESOME it was to have Ryan with me. I can't imagine how I would of handled the echo by myself. By the time the nurse finished getting his sats and EKG Landon seemed much happier. Fernandez came in a little later and spoke with us about the future. Usually our checkups with Fernandez are very encouraging. I know last time I posted that he told me Landon may not need another open heart surgery because his RV has been growing. I don't know if he was just trying to give us hope at all those other appointments and this one he decided to shoot straight with us or what, but he talked with us in depth about the bidirectional Glen. He showed us pictures and gave us a bunch of medical mumbo jumbo that I tried so VERY hard to understand.<br />
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Tangent alert!<br />
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Do you ever have those moments where you wish so badly that you could go back in time and give yourself a good peptalk. This happens to me every time I listen to doctors tell me about Landon's heart. I wish I could go back to when I was still in high school, struggling through textbooks that I thought were full of boring and useless information that I would never have to know because I had 0 desire to ever be a doctor. Back then I may have thought something like, 'why does it matter if I know the names of all of these valves and arteries and what they do?" How I would answer myself today, "Oh you stupid girl! Is it not enough of a reason that God has places all these amazing organs in your body and that's what makes you able to live and breath? If that isn't enough reason for you though, how about the fact that someday you will birth a child who's life depends on you getting what is broken inside of him fixed. Someday you will look at your perfect child and hope beyond hope that you could understand what is going on inside of his special little heart. Maybe if you would pay a little more attention to these pictures in your text book and stop skimming over words that are longer than 6 letters long and actually try to learn how to say them, you wouldn't feel quite so helpless when you become me in the future!"<br />
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Fernandez told us that of all of the different forms of Pulmonary Artresia, Landon has the most mild case, but his RV may still not be strong enough to sustain his right circulation. "There is no way of knowing for sure, what needs to be done until they get him in the Cath lab. I asked him if they do the cath and they decide he needs the Glen if it's something they will wait to do for a while? He told me that they will want to do it right away. He said he would email the University that day and we could be expecting a call from them early next week. This was a lot for me to take in because we've been expecting Landon's next visit to U of M to be pretty short, BUT if they have to open his chest again, we'll be looking at a week or maybe longer stay<br />
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He went over with us about the synagis shot that Landon was going to get and why it was so necessary and important that he get it every 4 weeks now. We talked a little more and then he was gone. I watched the door close behind him and I just sat there, trying to process everything we just saw and heard. I feel like up until this appointment I was so hopeful. I was hearing that God was growing Landon's heart a little bit more every month and I couldn't imagine why He would do that if Landon was still going to end up getting the surgery that will make his RV practically useless. Truthfully I just wanted to cry. I wanted to go through my familiar ritual of going into a bathroom, locking the door, sitting down on the dirty disgusting floor and letting the tears fall where they may. "I can't do it again Ryan. I truly can not imagine watching him go through that again. It's going to kill me." Ryan was standing up bouncing Landon who had fallen asleep covered underneath his hooded monkey blanket. "It's going to be hard Natalie, but it's going to save his life. We don't have an option." I know he's right, but mommies and daddies just process this kind of stuff so differently. Ryan can see the big picture and how it is going to help Landon, but all I can see are the horrifying pictures in my mind of my baby boy sedated and covered in cords and tubes, surrounded by beeping monitors. All I can think about is watching this child, whom I have coddled and protected from every germ the world has to offer him for the past 5 months, disappearing behind an OR door that I can't follow him through. Seriously I have a hard time even writing it. I desperately hope that the surgeon will tell us, after his cath, that everything looks great and he is going to be fine, but I realized yesterday that whether I want to or not, I need to start preparing for another surgery. Right now I feel a lot like I did when I was pregnant with Landon. Like I'm just kind of holding my breath... waiting... praying like crazy... depending on Jesus... cherishing every moment of the present... and waiting.<br />
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Ryan is going to explain as best he can what Fernandez told us about the Glen surgery...<br />
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So for the Bidirectional Glenn surgery the doctors will attempt to attach the Superior Vena Cava to Pulmonary Artery and send blood directly from the head and upper body to the lungs; bypassing the heart<img align="TOP" alt="bidirectional glenn for HLHS" border="0" height="386" hspace="0" id="Picture28" src="http://www.severinbrenny.com/bidirectionalglenn.jpg" title="bidirectional glenn for HLHS" vspace="0" width="330" /><br />
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This is the only picture I could find showing the Glenn and this is for Hypoplastic Left Heart. The idea is still the same except Landon's right side is small not his left. This whole process will alleviate some of the pressure from the right side of the heart and stop the oxygen rich and poor blood from mixing. In normal cases another surgery is required to complete the process for rerouting the blood. We still don't know if that's what Landon will need so I'll wait on explaining that one.<br />
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I don't know if you guys understand that, I don't even know if I really do, but thanks babe for trying. Love you!<br />
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So after our long day at the hospital we went home, had lunch, and numb as I still was from the news, I left to go meet our pastor at the cutest little coffee shop in town. I haven't had coffee in 12 days so you better believe I got a mint mocha and OH was it heavenly! He asked me about our vision and desire for the pillow pet fund and I told him how we want to carry God's light into the hospital and offer hope and encouragement to these hurting families. He listened to my heart and he caught our vision and totally ran with it. He wants to interview me during one of our church services and have me share our story and how God has transformed (our recent series has been on transformation) our family, our hearts, and our lives forever through what we've gone through with Landon. He would love for our church to help us make this small dream into something much bigger and maybe create some kind of long term hospital ministry. We shared our stories and our passion for the hurting and I don't know when it happened, but at some point, my heart lifted out of the fog and was able to see this beautiful sunrise that God is painting with Landon's story. I truly believe that God is going to use our painful experiences with Landon to open up doors in the hospital and doors that lead into very dark and depressed hearts. His light is going to break forth and overcome the fear. He is going to bring restoration and hope back into hearts that continue to beat, but haven't lived in a long time. I don't know the answer to the how's, but we are determined to keep living the story he is writing out for us. <br />
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I left the coffee shop so encouraged and my heart on FIRE with passion and excitement because of what God is doing in and through his people. I feel so blessed to belong to a church that has accepted the radical call to follow Christ no matter what the cost. <br />
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The night continued to get better when I got invited to go to a movie with a good friend. God knew I needed a stupid comedy to watch. To leave my worries about the future at home and get out and just enjoy life. I needed to be reminded that worrying isn't going to change anything and that it's okay to laugh even when my heart is so afraid and hurt. <br />
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Isn't that what makes life so beautiful? That God in His artistic perfection ties pain and sorrow and joy and laughter all together to make this extraordinary tapestry, full of such beautiful colors. The suffering adds depth whereas the bright fragments of intense joy make it something to stare at for hours. What a shame it would be for someone to try to cut out all of the deep richness that pain brings into their tapestry, in fact if they do this, even the brightness of their joy will lose it's vibrancy. No, you need both. A life with both suffering and joy is one that people will admire. It's one that will be made into an heirloom and passed down from generation to generation. It will be hung on the wall, pointed at, and the countless inspiring stories that it holds will be told during large family get togethers as well as small intimate moments of openness and growth. It's one that will not be forgotten, but will continue to change those who see it. It will live on through the people it touches.<br />
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How blessed my Landon is that God has already sewn into his short tapestry such depth and meaning.<br />
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Sometimes my days are full of nothing but sadness and dread and then others are filled with nothing except joy, but for some reason, yesterday seemed a special kind of beautiful because it held... both.<br />
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We are calling in the masses of you to pray, pray, pray. We don't know yet when we need to be in MN. It could be a week or a month so we need to start praying now that God will change Landon's heart so that when the doctors go into it during the cath, they will just be able to take out his shunt and come and tell us that he will be fine for now.<br />
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Thank you for all of the prayers. They have not been for nothing, Landon is doing so amazingly well. Just the fact that he hasn't gotten sick is a miracle. Thank you in advance for all of your prayers. We are expecting great things. No matter what... God is faithful!!!Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com1tag:blogger.com,1999:blog-6163519338730923750.post-61404950779471188192012-10-03T12:02:00.000-07:002012-10-03T12:04:06.031-07:00Celebrating 6 Months With Our Miracle6 months ago, at this time, Ryan and I were getting settled into my hospital room. I was scheduled to be induced on April 3rd, but Landon had decided, on his own, that April 3rd would be his birthday. I had been having very mild contractions for the past 3-4 days, but I woke up at 1am from them and didn't go back to sleep. I tried to go back to sleep, knowing that the next day I was going to have this baby whether I was ready or not, but sleep didn't come. I watched the clock... my alarm was going to go off at 6. I tried to keep track of the contractions on the phone app Ryan had downloaded for this very purpose, but they weren't consistent every time. By the time we got to the hospital and they hooked me up to the monitor they found that they were coming 3 min apart. They decided they didn't need to induce me since I was already in labor. At 2 o clock they put me on pitocin (the death drug) and told me they would be back to check on me in two hours. I played bananagrams with my family, went on facebook, Ryan snuck me small bites of his muffin (they told me not to eat), I was enjoying every last moment, knowing that my life was about to change forever.<br />
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At 3 o clock the pitocin (the death drug) kicked in. Ryan was about to go get another game in the car and I told him ummmm "I don't think I can play games anymore." Our family left and for the next hour I "labored" (it's self explanatory). A nurse came in at 3:45 and I begged her to let me start pushing. She didn't believe that I was ready, but she checked me (I think more to get me to shut up) and found that I was 9cm dilated. "OH, you are ready!! Ok, just wait for 5 more contractions while I go get the doctor and the team." They were NOT ready for Landon yet! The last 5 contractions were 100x worse than painful! Landon wanted OUT and he wanted out NOW! Ryan was so amazing during the whole labor. I don't think I could of done it without his encouragement and support. Around 4 o clock tons of people came into the room and set up their stuff behind a curtain. The doctor never did make it, but the head nurse came. I started pushing at 4 and at 4:32 Landon was born. They took him immediately behind the curtain where he was evaluated. The nurse that delivered Landon told me that it was the fastest first time labor and delivery she'd ever seen. She told me I was made for having babies. hahaha<br />
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He was perfect<br />
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Then I got to meet my child, for the first time, face to face.<br />
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I will never be the same. <br />
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After a long fight we brought him home and let me tell you that first day I was scared to death of that tiny creature.<br />
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But OH how I quickly fell head over heels!!</div>
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He turned ONE month old today!<br />
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His facial expressions had me laughing out loud everyday!!<br />
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2 Months old today! AND It's our 1 year Wedding anniversary! We dressed up to celebrate.</div>
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Finally get some tummy time<br />
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Happy Fathers Day Papa!! <br />
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Starting to learn how to sit<br />
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Trying to do a back flip over his boppy. Silliest kid EVER!<br />
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Still loves his favorite book :)<br />
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I'm 4 months!!<br />
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Papa buried me in my toys! <br />
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First time sitting on my own!<br />
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5 Months Old!! <br />
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He loves his ball<br />
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Highlight of this month was getting to meet uncle Matty</div>
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Looking up at uncle Matty<br />
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I just learned to grab my toes<br />
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AND NOW I'm 6 Months OLD!!</div>
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<tr><td class="tr-caption" style="text-align: center;">WHAT I'm really 6 MONTHS OLD!!!</td></tr>
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Dear Landon,</div>
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Oh my child, it seems like just yesterday that I held you for the first time and today you're already half way to a year old. How can that be? </div>
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You are such a joy Landon. You are happy and content from the time I find you awake in your crib to the time we put you to bed. You love being held, but you are happy to play on the floor by yourself too. You love watching the cars go by outside. You love grabbing things and bringing them to your mouth. You love when we read or sing to you. You love it when daddy comes home for lunch. You love when we hold your hands and help you stand up. You love stroller rides and staring at ceiling fans.</div>
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I remember how scared I was that I would never get to cherish these moments with you Landon. We have cried countless tears and said countless prayers for you. You are our miracle baby boy. You are covered with Gods finger prints and that's clear to everyone who knows you. You amaze the doctors, Your heart has grown more than they ever thought possible. In whatever challenges you face in the future Landon, you remember that God has you here for a purpose. You are going to do great things.</div>
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You have taught us so much. You have changed us. We want to be the people that God created us to be so that as you grow and watch us, you will come to know Jesus. We long for our love for you to draw you to the love of the Father. We will make mistakes, but He never will. </div>
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Always know that there's nothing that can stop our love for you Landon. Happy 6 month birthday love bug!</div>
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Your Mama</div>
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We would love to hear how Landon's life has impacted you. I know some of you follow Landon from all over the world and we would love to know about you. If our child has inspired or encouraged you in any way, please tell us how. You can <b>leave a comment on this blog</b> or you can email me at <b>nnmaxwell03@gmail.com</b></div>
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We would love to document all of the comments and share them with Landon when he is old enough to realize how God has been using him since before he was born.</div>
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Thank you!</div>
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<br />Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-48853911353765227482012-10-02T04:07:00.001-07:002012-10-02T04:17:25.147-07:00Wide open<style>
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I have been trying for the past hour to focus on school, but
it just isn’t happening. I know myself well enough to know that when I feel
like this, there is no point in doing anything except writing and crying. The
only remedy to this is letting it play out. It does nothing to try to ignore
the feelings or run from them. The only thing that helps is sitting in the
sweet presence of Jesus and soaking in the feelings, the longings, the pain,
the fear, whatever it may be. So here I soak. Tapping my hand against the
feelings and making tiny ripples with my finger, trying to figure this thing
called life out. </div>
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Sometimes I wish I could go back… ok no I don’t, but I do
remember what it was like to not constantly be thinking of the pain of this
world. Since God gave me Landon, my eyes have been opened and I can’t ignore
the relentless world outside my door any longer. I knew of pain before, but it
didn’t feel like this. It reached my mind, but not my heart. It reaches my
heart now and let me tell you… OWWWWWWW!!!! It kills!! I understand why people
choose to stay blind to it. I understand why the only passion, trauma, and
adventure some people ever allow into their lives is what is fed to them
through the baby spoon of the television screen. I get that. It’s easy, it doesn’t
require your heart. Frankly, it doesn’t require anything of you. </div>
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I just can’t live like that anymore. </div>
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My friend Keri wrote a blog yesterday that totally relates
with what I’m feeling. I encourage you to read it<a href="http://ourlittleericksons.blogspot.com/2012/09/dinner-with-strangers-and-7.html?spref=fb"> here</a>. In it she shared the
Scripture Proverbs 24:12 Where it says, <b>“Once our eyes are opened we can’t
pretend we don’t know what to do. God who weighs our hearts and keeps our
souls, knows what we know, and holds us responsible to act.“</b> I thank God
everyday for Landon. For this tiny child, whose broken heart, taught my heart
to see. He taught me what matters in life and that life is way to short to
spend it focused on yourself. </div>
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I feel like a crazy person now. Instead of living like the
rest of the world, hung up on what is happening on Dancing With the Stars, I’m
sitting in bed tonight thinking about the mother who just found out her unborn
child has a heart defect. I balled with Ryan last night for baby Hope and her
family, whom I’ve never met. I’m wondering where the homeless men are sleeping
tonight that my friends and I had a picnic with last night. My heart breaks for
the orphans around the world and that Ryan and I aren’t in the position to
bring them all into our home. For the young girl who is contemplating abortion
because it seems like the “easy” route. I cry thinking about the children with
disabilities who get made fun of by other children. I wonder how different the playground would be if children were taught that the word "normal" isn't in God's dictionary and different isn't wrong, it's beautiful. I pray that Landon is a child that
defends them, but I know that he will need to learn through mistakes just like
his mama. I think of all of the people I have judged in my life because I
wanted to be god and decide who deserves love and acceptance. </div>
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Is this what transformation feels like God? It feels like
your ripping my heart into pieces and then sewing it back together with the
thread of passion, which by the way, passion hurts too!! Passion hurts because
it is so misunderstood. People are scared of passion. Passion demands everything
of you. People will read passionate people’s books, but few want to be their
friends. </div>
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I’m through with caring though. I’m through trying to arrange my life to fit this worlds
standards. </div>
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There, I’ve gotten some of these
feelings out.<br />
<br />
Somehow I found a way to mold them into a few words, but these
words hardly reflect everything my heart is digesting. The language of the
heart isn’t spoken through words, but actions. Now comes the hardest part…
living it. </div>
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Will you dare to join me?<br />
<br />
I dare you to look someone in the eyes today whom you normally brush off. Think about the person's soul before you choose to gossip behind her back. Show an ounce of love to someone the world would throw into the category of "ugly" or "messed up". The possibilities are endless because the pain is everywhere.<br />
<br />
What if we choose to stop talking like we love the world our Savior died for and instead go out there and show them His love? </div>
Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0tag:blogger.com,1999:blog-6163519338730923750.post-57468321007201825272012-09-29T17:23:00.002-07:002012-09-29T17:26:23.486-07:00Pray for HOPE!!Hi guys, I have to share this because I would hope that if we were in this families position with Landon, that complete strangers would be calling in the masses to pray for a miracle.<br />
<br />
I first read Amy's blog while we were at Amplatz with Landon. Amy's brother is on staff at the same YWAM base in Australia as my brother and it just so happened that they also just had a baby with a heart defect. I have never met them or even emailed Amy, but I have felt such a connection with them because Hope and Landon are so close in age and both fighting against their broken hearts.<br />
<br />
I just read Amy's latest blog post today and my heart stopped. They are at a place right now that is every parents worst nightmare. They are running out of hope and options for their precious baby girl.<br />
<br />
PLEASE read their story and hit your knees. I can only imagine what they are going through.<br />
<br />
<a href="http://mendingheartsandbendingknees.blogspot.com/2012/09/pleading-for-life.html?spref=fb">http://mendingheartsandbendingknees.blogspot.com/2012/09/pleading-for-life.html?spref=fb</a><br />
<br />
<span class="img" style="background-image: url(http://distilleryimage4.instagram.com/b478048e098a11e29b5b123138140bce_7.jpg);">
<img alt="Photo by amyakoslowski" class="photo" src="http://distilleryimage4.instagram.com/b478048e098a11e29b5b123138140bce_7.jpg" />
</span>Maxwell mamahttp://www.blogger.com/profile/15460576169473902536noreply@blogger.com0