I cannot believe that February is almost gone! Landon continues to have ultra sounds every week and gets measured every other week. Last thursday he was weighing in at 3Ib 13oz. My doctor here in Bismarck is extremely happy with how he is doing in the womb. She said there is no reason she can see why he won't go full term and be a healthy size. This is such an answer to prayer because once Landon is born it will be a fight for every once of weight gain. He will have an IV and a feeding tube placed in him right away, babies with heart defects often experience stomach issues as well. hopefully this will not be the case with him, but it just makes every once he gains while still inside of me that much more important. He remains extremely active and likes to put on shows for those around, as was the case when we were at our friends house last weekend. They were amazed that they could actually see him pounding on my stomach. It's almost like he's saying let me out of here ;) He has quite the little photo album already consisting of 23 ultrasound pictures so far. I have become spoiled and always feel as though the ultra sound tech could have gotten better pictures haha I can't wait for the day when I won't have to rely on someone else to capture his beautiful face. He is so loved and adored by me and his daddy :)
Me and Ryan shared the best Valentines Day, our first as a married couple and our last without kids :) He is my best friend and I can't imagine going through life without him. We have already been through so much in our first year of marriage, but I can honestly say that it has only made us love and appreciate each other so much more. Marriage is a remarkable thing and I am understanding more and more why God compares our relationship with Him to the relationship between a husband and wife. There is nothing on Earth that compares, nothing that satan does not love to destroy more, and nothing is more powerful and more of a testimony of God's unconditional love than a marriage that is functioning the way it was designed to. We know that we have hard times ahead, but we know that no matter how bad things seem we are in this together and we must NEVER stop fighting for our marriage.
Upcoming News:
Ryan returns from Winter Retreat tonight :D
Ryan left Sunday after church with a handful of other youth leaders and 60 teens to go snowboarding at Terry Peak located in the Black Hills of South Dakota. He did not even tell me that he was asked to go because he knew it would mean leaving me home alone. I brought it up one day after church last month and told him he should go. He was surprised and super excited that I was ok with it. I know how much he loves snowboarding and he hasn't been able to go at all this winter because we have been saving every penny for Landon. I know God will use this trip in his life. I know it was so needed, Ryan sacrifices so much for me and Landon and he never once has complained. He is amazing and I have MISSED him like CRAZY!!! These short two days were a glimpse into how hard it will be to be apart for the last month of my pregnancy.
Baby showers
This Friday after work we will be driving to Warroad! The Woodland ladies have been so kind to throw us a baby shower on Saturday. I cannot wait to see family! We still consider Woodland our family and they have been such a blessing to us since being married and especially surrounded us with love and prayers since finding out about Landon. I am looking forward to sharing in the celebration and anticipation of his birth with them. It will be a very quick trip, but we figured it will be worth it since we won't be traveling with Landon until he has recovered from his second surgery.
I was also so touched when my boss at the daycare asked if she could throw me a shower. It takes a while to start to feel at home in a new place and get connected in a church. New Song has been nothing but welcoming to me and Ryan and we are truly starting to feel at home. I am looking forward to my shower there on the 3rd of March. It will be a great way to spend my last weekend at home before leaving for Minneapolis. Krista (my boss) even personalized the invites with a jungle monkey theme... so CUTE :)
I just feel so blessed and loved by the people God has placed in our lives and I am overwhelmed by how much people care about and love Landon already. He truly is such a blessed child and we are so blessed to be his parents!
Departure Day
We are planning on leaving for Minneapolis on the 10th of March. We will both be driving vehicles down so that I will have my car while there. It is extremely overwhelming when I realize that I will not be back home before Landon is born. It's overwhelming knowing we will be married long distance for a while. I never dreamed when we were dating long distance that we would ever have to do that again, especially in our first year of marriage. Everything is going so fast and it is all leading up to the day when Landon will enter this world. We cannot wait to meet our little warrior!
Thank you for continuing to keep our family in your prayers. We love and thank God for you daily.
Our 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.
Tuesday, February 21, 2012
Tuesday, February 7, 2012
Expecting Holland
This is something I found on another heart moms blog.
WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I can relate so well with this and it hits to the core of my heart. For as long as I can remember I have dreamed of being a mother. I remember as a child I would never play "mommy" with my dolls, they were always my baby brothers or sisters. I think even way back then I knew that nothing could ever compare to the real thing and that was all I ever wanted... the real thing. As I grew up and started babysitting other peoples kids I would always feel sad when they had to leave me. Children have always brought me so much joy and I truly feel my heart is most alive when I am around them. I always dreamed and imagined the day when I would carry my own child in my body and hold that child in my arms. When you get married this dream takes on new meaning and purpose because it is now a dream you can share with the one you love the most.
Although having a child was what I always longed for the day me and Ryan found out we were expecting was not the happiest day I can remember, in fact I was terrified. I remember crying and telling him over and over again that this was going to change everything (I had no idea). We were not planning on taking our trip to Italy until we could afford it and were more situated with our new life together. It took a while, but I soon began to dream and long for Italy. Joy filled me because it was now close enough for me to grasp. We loved sharing with everyone our exciting news about our upcoming trip and everyone was SO excited for us :)
Then the day came... the day we were told we could not go to Italy, but instead were headed for Holland. My heart broke that day, my dreams shattered. I had never even heard of Holland! Who goes to Holland? I've read the books I know the chances of someone not going to Italy are so great. This had to be a mistake, why Holland, why us? What did I do wrong? Why don't we deserve to go to Italy like everyone else? Why would God place Italy on my heart and then not allow me to be able to go there?
What I didn't have the strength to understand that day was that I was never meant to go to Italy (at least not yet) I was always supposed to go to Holland and although I don't know how, God has always been preparing me for Holland. Holland is where me and Ryan are supposed to be. It is still terribly hard when I see other pregnant woman and know that they are going to Italy. I'd be lying if I said that I'm not jealous of them, but would I trade in my ticket... no. I know that life in Holland is hard and scary, but the more I learn about it the more I am realizing that Holland holds blessings that no other place on Earth does.
Landon's Momma
WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I can relate so well with this and it hits to the core of my heart. For as long as I can remember I have dreamed of being a mother. I remember as a child I would never play "mommy" with my dolls, they were always my baby brothers or sisters. I think even way back then I knew that nothing could ever compare to the real thing and that was all I ever wanted... the real thing. As I grew up and started babysitting other peoples kids I would always feel sad when they had to leave me. Children have always brought me so much joy and I truly feel my heart is most alive when I am around them. I always dreamed and imagined the day when I would carry my own child in my body and hold that child in my arms. When you get married this dream takes on new meaning and purpose because it is now a dream you can share with the one you love the most.
Although having a child was what I always longed for the day me and Ryan found out we were expecting was not the happiest day I can remember, in fact I was terrified. I remember crying and telling him over and over again that this was going to change everything (I had no idea). We were not planning on taking our trip to Italy until we could afford it and were more situated with our new life together. It took a while, but I soon began to dream and long for Italy. Joy filled me because it was now close enough for me to grasp. We loved sharing with everyone our exciting news about our upcoming trip and everyone was SO excited for us :)
Then the day came... the day we were told we could not go to Italy, but instead were headed for Holland. My heart broke that day, my dreams shattered. I had never even heard of Holland! Who goes to Holland? I've read the books I know the chances of someone not going to Italy are so great. This had to be a mistake, why Holland, why us? What did I do wrong? Why don't we deserve to go to Italy like everyone else? Why would God place Italy on my heart and then not allow me to be able to go there?
What I didn't have the strength to understand that day was that I was never meant to go to Italy (at least not yet) I was always supposed to go to Holland and although I don't know how, God has always been preparing me for Holland. Holland is where me and Ryan are supposed to be. It is still terribly hard when I see other pregnant woman and know that they are going to Italy. I'd be lying if I said that I'm not jealous of them, but would I trade in my ticket... no. I know that life in Holland is hard and scary, but the more I learn about it the more I am realizing that Holland holds blessings that no other place on Earth does.
Landon's Momma
Sunday, February 5, 2012
Last week
I'm finally going to attempt to describe how last week went for us. I was sick during the weekend and still not feeling good when Monday arrived so I took the day off of work. Besides getting packed for our trip all I did was sleep until Ryan got home. We quickly grabbed our stuff and were on our way. The trip went fast, we picked up my mom who was in Fargo because my grandma just had back surgery the day before. We made it to our hotel around ten, Ryan's parents were already there. It was so nice to be with family again. I still wasn't feeling well and I was nervous about what the next few days would be like. I really had no clue what kind of appointments I had. I knew I would have an ultra sound, fetal echo, and I was told we would be taken on a tour but I didn't know which days we would be doing what or when.
The next day we met my aunt at the hospital and headed up to the maternal fetal medicine floor. Soon after we were introduced to Dr. Thomas and led into a room with a large table in it. We all sat down and the Dr. began talking to us. To my understanding he is in charge of the neonatal section of the hospital or something like that. He explained to us what Landon will go through after he is born. We asked some questions and then we talked a little bit with the social worker who was there and another woman who kind of oversees cases like Landon's. They were all very friendly and easy to talk to.
That was all we had the first day, it went pretty fast and I was glad because it was later in the day and I was tired from not sleeping well the night before. It was refreshing to be somewhere again where Landon isn't talked about like he is abnormal. These people deal with different everyday so it is their normal, just as it has become ours.
The next day our appointment was in the morning. I woke up at 2:30 and couldn't get back to sleep because my sinuses were so out of whack and I couldn't breath well. I was very excited to have an ultra sound done and hopefully get another 3D picture to take home. I was also hoping that our family would be allowed to come to the ultra sound with us. They said that would be fine so Ryan, our moms, and my aunt all crowded into the ultra sound room. It was really special getting to share that moment with all of them. We were told that Landon is now up to 3Ib 5oz. I almost couldn't believe it! He is growing so fast! It is ironic because the doctors always tell me that I am very small and here I have this big baby boy growing like crazy inside of me :) That made me very happy and I was even more thrilled when she turned on the 3D and tried to get some good pictures for us. It is so amazing to be able to see his face. He is so beautiful and in one of the pics we got he looks like he's smiling :)
After the ultra sound I had a fetal echo and then we were led into a room to talk with Dr. Shaunti again, this time with our family. She introduced herself to everyone and then dove right in, she began with the basics about what she does and explained Landon's condition, but I could tell this time was different then the last time we talked with her. She was going into more detail and giving it to us more straight then last time. I know this is because it would of all been to much for us to handle at our first visit, we were still processing the news, but now we are more prepared and we want the details. I can't begin to explain everything she talked to us about because it is so much and so complicated, but she explained to us that the right side of Landon's heart is hardly developed at all. She told us that after he is born we will get to hold him a couple seconds and then he will be taken to the NICU. This was sad for me to hear because the day before the Dr. told me I would have a couple min. with Landon, but like I said Dr. Shaunti was giving it to us straight and I appreciated that. She told us that Ryan will be able to go with Landon to the NICU which we were both glad about. Once in the NICU Landon will have a feeding tube and an IV placed in him. He will have several tests run on him so that they can look at his heart more closely. The big thing is seeing how his coronary arteries have been affected. If they have been then there will have to be more measures taken then just the one surgery to fix that. They will for sure be performing open heart surgery on him the first week to open the valve so that blood can get to his lungs. She explained to us that this is just a temporary fix. They have to do things gradually because the lungs cannot handle a ton of change at one time. His second surgery will be when he is 3 to 4 months old. She told us how important it is that he not be introduced to new people before his second surgery because he is so susceptible to sickness. She told us that a small cold is nothing to fool around with for babies with his condition. If we wait a day to take him in to the hospital it could be too late for him. It sounds like if a situation does arise where he has some complications or gets sick we will need to bring him back to Minneapolis right away. Bismarck will be fine for his normal checkups and things, but he may still need special care that can't be found in a normal hospital. She told me again that they want me to get to 39 weeks in my pregnancy and then they will want to induce me because it could be dangerous for him to be in the womb after that. She told me that after 36 weeks they will want to keep a very close eye on me. If there is news of weather complications they will want me to come into the hospital right away because an ambulance can get through anything except bad weather. She explained to us how important it is for Landon to be born in a hospital that has the medicine (prostaglandin) that he will need to keep the valve open in his heart. Without this medicine he won't be able to breath and at the least will suffer brain damage. She told us that helicopters take at least 2 hours to get off the ground and that's too long for a baby with his condition to wait. She told us there are only a few hospitals in the country that carry this medicine because it costs 2,000 a bottle and just expires in most hospitals because the situations where it is needed are so rare. She told us that out of all of the heart defects that they treat on a day to day basis they only have about 2 a year with exactly what Landon has. That really shocked me, because I know that people fly in from all over the country to get treated there. We are very fortunate that we are so close to a hospital that can care for Landon, even though 6 hour drives don't seem overly close. We talked a little more and asked some more questions. I was so impressed by her willingness to listen and answer all of our questions. Her beeper went off once and I was expecting her to tell us she had to be somewhere else, but she just stayed and kept talking with us. Knowing that she really cares makes it a lot easier to hear what she tells us. These aren't like other doctor appointments I've had where you wait for 45 min and maybe get to see your doctor for 15. They know that you can't rush through situations like ours, we need the extra time. That's why it seems like they tell us the same things over and over again, because they know news like what we hear takes time to process and fully understand. I still can't tell you that I understand everything that is wrong with Landon's heart or what they are going to do to fix it, but I know that God has provided us with the best care and for that I am SO grateful.
After that we met with Dr. Thomas again and he began our tour with the delivery room. then he took us to the NICU, I was shocked that we were allowed to go in and actually see the babies and everything. He took us over to certain ones and told us that Landon will be on a machine like this or a feeding tube like that. I have to be honest I don't feel like I really grasped what was going on, I was just so taken by these tiny babies in their little incubators, fighting to live. It was hard for me to hold back the tears, knowing that my baby boy was going to be brought here. Each baby had someone assigned to it though, watching it and taking care of it the whole time. I think that's going to be one of the hardest times for me because I'll be recovering the first couple days he is in the NICU. I'm comforted knowing Ryan will be allowed to be with him the whole time, but it's so hard knowing I won't. From the NICU he will go to surgery and then be taken to another floor where he will stay while he's recovering. This room has a bathroom and a pull out bed so I will be able to stay with him 24/7. I know that will be so exciting when that day finally comes. There were lots of rooms on different floors and it all went so fast I know I wouldn't be able to find my way around again, but the tour really helped. It is nice to be able to picture where we will be and the new children's hospital is designed so beautifully. Every floor is bright and cheerful with safari themes, I truly do feel so blessed that Landon will be treated at such an amazing place. The second day took around 4 hours, we got some lunch together, said our good-byes and headed home. I know these next four weeks are going to go by so fast.
I'm sure there is more I could write, but I will just leave it at that for now. Thank you everyone for remembering us in your prayers as we travel and try to process everything. God has been so faithful to us and we will continue to keep you posted.
Landon's Momma
The next day we met my aunt at the hospital and headed up to the maternal fetal medicine floor. Soon after we were introduced to Dr. Thomas and led into a room with a large table in it. We all sat down and the Dr. began talking to us. To my understanding he is in charge of the neonatal section of the hospital or something like that. He explained to us what Landon will go through after he is born. We asked some questions and then we talked a little bit with the social worker who was there and another woman who kind of oversees cases like Landon's. They were all very friendly and easy to talk to.
That was all we had the first day, it went pretty fast and I was glad because it was later in the day and I was tired from not sleeping well the night before. It was refreshing to be somewhere again where Landon isn't talked about like he is abnormal. These people deal with different everyday so it is their normal, just as it has become ours.
The next day our appointment was in the morning. I woke up at 2:30 and couldn't get back to sleep because my sinuses were so out of whack and I couldn't breath well. I was very excited to have an ultra sound done and hopefully get another 3D picture to take home. I was also hoping that our family would be allowed to come to the ultra sound with us. They said that would be fine so Ryan, our moms, and my aunt all crowded into the ultra sound room. It was really special getting to share that moment with all of them. We were told that Landon is now up to 3Ib 5oz. I almost couldn't believe it! He is growing so fast! It is ironic because the doctors always tell me that I am very small and here I have this big baby boy growing like crazy inside of me :) That made me very happy and I was even more thrilled when she turned on the 3D and tried to get some good pictures for us. It is so amazing to be able to see his face. He is so beautiful and in one of the pics we got he looks like he's smiling :)
After the ultra sound I had a fetal echo and then we were led into a room to talk with Dr. Shaunti again, this time with our family. She introduced herself to everyone and then dove right in, she began with the basics about what she does and explained Landon's condition, but I could tell this time was different then the last time we talked with her. She was going into more detail and giving it to us more straight then last time. I know this is because it would of all been to much for us to handle at our first visit, we were still processing the news, but now we are more prepared and we want the details. I can't begin to explain everything she talked to us about because it is so much and so complicated, but she explained to us that the right side of Landon's heart is hardly developed at all. She told us that after he is born we will get to hold him a couple seconds and then he will be taken to the NICU. This was sad for me to hear because the day before the Dr. told me I would have a couple min. with Landon, but like I said Dr. Shaunti was giving it to us straight and I appreciated that. She told us that Ryan will be able to go with Landon to the NICU which we were both glad about. Once in the NICU Landon will have a feeding tube and an IV placed in him. He will have several tests run on him so that they can look at his heart more closely. The big thing is seeing how his coronary arteries have been affected. If they have been then there will have to be more measures taken then just the one surgery to fix that. They will for sure be performing open heart surgery on him the first week to open the valve so that blood can get to his lungs. She explained to us that this is just a temporary fix. They have to do things gradually because the lungs cannot handle a ton of change at one time. His second surgery will be when he is 3 to 4 months old. She told us how important it is that he not be introduced to new people before his second surgery because he is so susceptible to sickness. She told us that a small cold is nothing to fool around with for babies with his condition. If we wait a day to take him in to the hospital it could be too late for him. It sounds like if a situation does arise where he has some complications or gets sick we will need to bring him back to Minneapolis right away. Bismarck will be fine for his normal checkups and things, but he may still need special care that can't be found in a normal hospital. She told me again that they want me to get to 39 weeks in my pregnancy and then they will want to induce me because it could be dangerous for him to be in the womb after that. She told me that after 36 weeks they will want to keep a very close eye on me. If there is news of weather complications they will want me to come into the hospital right away because an ambulance can get through anything except bad weather. She explained to us how important it is for Landon to be born in a hospital that has the medicine (prostaglandin) that he will need to keep the valve open in his heart. Without this medicine he won't be able to breath and at the least will suffer brain damage. She told us that helicopters take at least 2 hours to get off the ground and that's too long for a baby with his condition to wait. She told us there are only a few hospitals in the country that carry this medicine because it costs 2,000 a bottle and just expires in most hospitals because the situations where it is needed are so rare. She told us that out of all of the heart defects that they treat on a day to day basis they only have about 2 a year with exactly what Landon has. That really shocked me, because I know that people fly in from all over the country to get treated there. We are very fortunate that we are so close to a hospital that can care for Landon, even though 6 hour drives don't seem overly close. We talked a little more and asked some more questions. I was so impressed by her willingness to listen and answer all of our questions. Her beeper went off once and I was expecting her to tell us she had to be somewhere else, but she just stayed and kept talking with us. Knowing that she really cares makes it a lot easier to hear what she tells us. These aren't like other doctor appointments I've had where you wait for 45 min and maybe get to see your doctor for 15. They know that you can't rush through situations like ours, we need the extra time. That's why it seems like they tell us the same things over and over again, because they know news like what we hear takes time to process and fully understand. I still can't tell you that I understand everything that is wrong with Landon's heart or what they are going to do to fix it, but I know that God has provided us with the best care and for that I am SO grateful.
After that we met with Dr. Thomas again and he began our tour with the delivery room. then he took us to the NICU, I was shocked that we were allowed to go in and actually see the babies and everything. He took us over to certain ones and told us that Landon will be on a machine like this or a feeding tube like that. I have to be honest I don't feel like I really grasped what was going on, I was just so taken by these tiny babies in their little incubators, fighting to live. It was hard for me to hold back the tears, knowing that my baby boy was going to be brought here. Each baby had someone assigned to it though, watching it and taking care of it the whole time. I think that's going to be one of the hardest times for me because I'll be recovering the first couple days he is in the NICU. I'm comforted knowing Ryan will be allowed to be with him the whole time, but it's so hard knowing I won't. From the NICU he will go to surgery and then be taken to another floor where he will stay while he's recovering. This room has a bathroom and a pull out bed so I will be able to stay with him 24/7. I know that will be so exciting when that day finally comes. There were lots of rooms on different floors and it all went so fast I know I wouldn't be able to find my way around again, but the tour really helped. It is nice to be able to picture where we will be and the new children's hospital is designed so beautifully. Every floor is bright and cheerful with safari themes, I truly do feel so blessed that Landon will be treated at such an amazing place. The second day took around 4 hours, we got some lunch together, said our good-byes and headed home. I know these next four weeks are going to go by so fast.
I'm sure there is more I could write, but I will just leave it at that for now. Thank you everyone for remembering us in your prayers as we travel and try to process everything. God has been so faithful to us and we will continue to keep you posted.
Landon's Momma
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