It's not yet 4 in the morning, but my mind and heart are very awake. Last week Ryan went out for coffee with the youth pastor from our church. He told Ryan about this organization called Early Intervention and shared how it helped him and his wife out as they were facing challenging times with their beautiful baby girl who has Down Syndrome. Just a couple days later we got a call from a woman named Roxanne. She wanted to meet with us so we arranged for her to come over to our apartment yesterday. As we were waiting for her to arrive, I was nervous. I didn't really know what to expect. I didn't know what early intervention was or what we would talk about.
Once she arrived my anxiety eased. She was very friendly and easy to talk to. She wanted to know about Landon and when we first found out about his condition. I couldn't believe it when I realized it has only been two weeks since that day in the ultra sound room when I got the news that shook our world. She began by telling us some helpful advice about what we need to put into place to make it easier on ourselves (stay caught up and organized with paperwork and medical bills, find support etc.). Then she started explaining to us the options that we have. She told us that families who go through what we are going through or similar situations often have a very difficult time asking for and accepting help. I could really relate when she said that we often feel that there are others who need it much more than us. She told us that we need to put those feelings aside and accept that asking for help is the best thing to do, for ourselves and for Landon. She told us that Early Intervention was designed by parents who have walked through these trenches and know how hard it is and how alone you can feel. They decided to make a change so that others wouldn't have to struggle or feel alone like they did. She told us about services that the government and the state offers for kids and parents with congenital heart defects. My heart was flooded with peace as she told us about how the program will help us with traveling expenses and hospital visits. Once Landon is born he will automatically be covered under medicaid which will help with his surgeries, doctors visits, and at home care for the first 3 years of his life. I cannot tell you what a relief it was for me to have her say that they will provide him with the at home care he will need the first three years as it is often hard for kids with CHD's to develop and learn as quickly as other children. There are so many things I have worried about, but I had no idea where to even start to find answers or resources. As a mother of a child with special needs (I don't know why, but I don't like saying that) you fear that you won't be able to give your child everything he will need. It is scary enough bringing home your first baby, but when that baby needs extra care and protection... it's really scary.
I am so incredibly thankful to God for providing someone who has done all the research, can answer our questions, and who I truly believe longs for Landon to have the best care possible. She told us that our focus needs to be on him not on the stress of figuring out how to provide everything he is going to need. I am blown away as I see Gods fingerprints appearing on the precious life of my baby boy already. Roxanne explained to us how she met Aaron (youth pastor) and his wife and how the same week that Aaron and Ryan went out for coffee, Aaron's wife had done some training with Roxanne about helping parents of kids with CHD's. She called it coincidence, but I know it is nothing, but the hand of God. I am comforted daily by things God shows me that prove that He knew this was coming, this did not catch Him off guard. Just last month Ryan's company started a new policy where spouses are covered under insurance with no additional cost taken out of his pay check. This blew my mind because I will begin to be covered under him the beginning of 2012 since I will have a hard time keeping my hours full time at the daycare. We also see his provision through the love of our family and loved ones. I have been brought to tears by Christmas cards with such words of love and hope and especially from those of you who have thought of us this Christmas season and blessed us financially. We cannot even tell you with words how extremely grateful and humbled we are by your love and generosity. We thank God for each of you!
One more update on our little man. He gave me the coolest birthday present! He is beginning to kick so hard that you can actually see movement from the outside. I love that I no longer have to place my hand on my belly to really feel him. I can always feel him inside of me and as every mother knows that is the most amazing thing in the world. This also means that he is growing and getting stronger, which is so very important. We are overflowing with thankfulness for so many blessings as we head home (back to MN) today. We are so excited to be with family and friends as we celebrate the birth of our Savior.
We continue to thank you for all of your prayers and support and from our family to yours, merry Christmas and a happy New Year!
Friday, December 23, 2011
Saturday, December 17, 2011
Help Explaining out doctors visit.
So at our doctors visit in the cities last wednesday was a blur of long medical words and explanations that only made sense with a doctor in the room. So now it's up to me to pass the information on to you. Landon has Pulmonary Atresia with Intact Ventricular Septum and Tricuspid Valve Hypo-plastic. In plain english this means that the blood in the heart isn't getting to his lungs like it should. It doesn't mean that he's not getting blood; it means that the blood is taking a backwards route and will only last while Landon stays in the womb.
From my knowledge Pulmonary Atresia means that the blood is flowing through his Pulmonary Artery. This is an artery that only babies have and they loose it after a couple hours once born. The doctors can keep this artery intact for about a week with a medicine called PGC-1. Also to the best of my understanding IVS means that Landon's ventricle doesn't have a hole that it should; namely the right ventricle. All babies have 3 holes in their heart that quickly close after birth. These holes help the heart to develop to full maturity while in the womb. Proper blood flow of a heart means that blood should go from his right ventricle to his lungs....I think. His hole is Intact and this means that his right ventricle isn't developing at all. The tricuspid valve is the valve that lets blood into the right ventricle, and due to the lack of development in the RV this valve isn't working properly. They plan to fix this is with a balloon shunt that will open his right ventricle. This is a temporary fix. The doctors are hoping that over the course of the pregnancy the heart will begin to develop on its own. Our doctor said that she'd like to save the right ventricle and not have to remove it and replace it. There are a lot of conditions that will determine the doctor's final decisions about what surgeries and how many, but there will be quite a few we know for sure if nothing changes. We know that anything is possible with God and he can do a miracle with our baby Landon.
-Landon's daddy
From my knowledge Pulmonary Atresia means that the blood is flowing through his Pulmonary Artery. This is an artery that only babies have and they loose it after a couple hours once born. The doctors can keep this artery intact for about a week with a medicine called PGC-1. Also to the best of my understanding IVS means that Landon's ventricle doesn't have a hole that it should; namely the right ventricle. All babies have 3 holes in their heart that quickly close after birth. These holes help the heart to develop to full maturity while in the womb. Proper blood flow of a heart means that blood should go from his right ventricle to his lungs....I think. His hole is Intact and this means that his right ventricle isn't developing at all. The tricuspid valve is the valve that lets blood into the right ventricle, and due to the lack of development in the RV this valve isn't working properly. They plan to fix this is with a balloon shunt that will open his right ventricle. This is a temporary fix. The doctors are hoping that over the course of the pregnancy the heart will begin to develop on its own. Our doctor said that she'd like to save the right ventricle and not have to remove it and replace it. There are a lot of conditions that will determine the doctor's final decisions about what surgeries and how many, but there will be quite a few we know for sure if nothing changes. We know that anything is possible with God and he can do a miracle with our baby Landon.
-Landon's daddy
Thursday, December 15, 2011
Overwhelmed in so many ways!
I think the title of this post pretty much sums up yesterday. We got to the hospital an hour early so we had plenty of time to walk around. It is huge! There was doctors everywhere. I felt out of place and scared. Thanks to Ryan we didn't get lost and found our way back to the fetal maternal medicine center. Once I filled out some papers, they called my name and it all went very fast from there. I had an ultra sound and was so excited to get a 3d picture of Landon afterwards :) Then they took me straight into another room where I had another fetal echo. I was sad when I realized everything looked the same. We have been praying that God would just open his valve and that they wouldn't find anything wrong. We are not giving up on that prayer, but it was obvious that it wasn't going to be answered just yet. Once the lady was done, another woman came in and introduced herself as Dr. Shanthi. I knew that this was the woman I was told would be my doctor. She looked through the fetal echo results and talked about what she was seeing with the intern. I could tell Ryan was watching them and listening to everything. Dr. Shanthi looked at Landon a little bit herself and then she told me I could wipe myself off and meet her in the consultant room.
We got in there before her so we just looked over our questions until she arrived. She was very professional. She began by explaining to us what she does at the hospital. To my understanding, she will not be Landon's doctor, but she oversees everything. She is the one who will review Landon's case with the doctor who will deliver him, the surgeons who will perform his surgeries, and the nurses who will care for him in the NICU. She told me that she wants me to go as close to full term as I can. 39 weeks is my goal. If I can make it to 39 weeks then I will be induced. They want Landon in the womb for as long as possible so that he is as strong as possible and his lungs and everything are developed well enough. She explained to us that they will need to see me at 30 weeks, but until then I can go to an OB in Bismarck. This was SUCH a relief!! At the 30 week appointment they will be doing a lot more testing and examine how Landon is developing. We will also get a tour of everywhere where Landon will be in the hospital. Then at 36 weeks they want me close so I will be staying in the cities for the last month of my pregnancy. Then she drew us a picture of what a "normal" heart looks like and explained how it functions and then she drew a picture of Landon's heart and explained to us how it isn't functioning the way it needs to. This is hard for a parent to hear, someone comparing their child to "normal". It was informative though and gave us a better understanding of Landon's condition. Ryan will explain more in depth about Landon's condition and the surgeries that we were told he will have to have.
After she was done, we asked the few questions we had that she hadn't already answered and then we left. The appointment only took about 2 hours. Then we were on the road again. The two pictures I got to have of Landon were the highlight of my week. We must of looked at them for half the drive home haha. We decided he has my nose and Ryan's chin, we tried to figure out what the strange creature thing next to him is in one of the pics. I think it looks like a stuffed puppy dog and Ryan thinks it looks like Gandolph from Lord of the Rings. We had a good laugh over how that got in there with him lol. It is such an odd experience to have such a mixture of joy and sorrow in your heart at the same time, but that is how I feel a lot. Even in the midst of all of hard news we hear, the tests, and the anxiety about the future, we still have so much joy because of our baby boy. We love every second we get to see him, we talk about him and pray for him constantly. He is ours and we couldn't be more proud :)
We got home... exhausted. Ryan figured that we drove over 900 miles in 24 hours. We picked up the mail on our way up. I was excited to see Christmas cards in the pile. We gathered in the kitchen to open them once we found a place to drop all our luggage. I began to cry as checks fell out of two of the cards. As we read the loving words written in them we just looked at each other in amazement. Just when life seems so overwhelming God uses someone to send the message that He's got us right in the safety of His hand. We couldn't be more overwhelmed by God's love right now and the love of our friends and family. We were wondering how we would be able to afford going home for Christmas, but now God has provided a way! I cried and hugged Ryan and we both agreed that it's ok. There is so much going on in our lives and hearts right now that I'm not even sure what "it" is, but we know that with God, it's ok :)
Landon's Momma
We got in there before her so we just looked over our questions until she arrived. She was very professional. She began by explaining to us what she does at the hospital. To my understanding, she will not be Landon's doctor, but she oversees everything. She is the one who will review Landon's case with the doctor who will deliver him, the surgeons who will perform his surgeries, and the nurses who will care for him in the NICU. She told me that she wants me to go as close to full term as I can. 39 weeks is my goal. If I can make it to 39 weeks then I will be induced. They want Landon in the womb for as long as possible so that he is as strong as possible and his lungs and everything are developed well enough. She explained to us that they will need to see me at 30 weeks, but until then I can go to an OB in Bismarck. This was SUCH a relief!! At the 30 week appointment they will be doing a lot more testing and examine how Landon is developing. We will also get a tour of everywhere where Landon will be in the hospital. Then at 36 weeks they want me close so I will be staying in the cities for the last month of my pregnancy. Then she drew us a picture of what a "normal" heart looks like and explained how it functions and then she drew a picture of Landon's heart and explained to us how it isn't functioning the way it needs to. This is hard for a parent to hear, someone comparing their child to "normal". It was informative though and gave us a better understanding of Landon's condition. Ryan will explain more in depth about Landon's condition and the surgeries that we were told he will have to have.
After she was done, we asked the few questions we had that she hadn't already answered and then we left. The appointment only took about 2 hours. Then we were on the road again. The two pictures I got to have of Landon were the highlight of my week. We must of looked at them for half the drive home haha. We decided he has my nose and Ryan's chin, we tried to figure out what the strange creature thing next to him is in one of the pics. I think it looks like a stuffed puppy dog and Ryan thinks it looks like Gandolph from Lord of the Rings. We had a good laugh over how that got in there with him lol. It is such an odd experience to have such a mixture of joy and sorrow in your heart at the same time, but that is how I feel a lot. Even in the midst of all of hard news we hear, the tests, and the anxiety about the future, we still have so much joy because of our baby boy. We love every second we get to see him, we talk about him and pray for him constantly. He is ours and we couldn't be more proud :)
We got home... exhausted. Ryan figured that we drove over 900 miles in 24 hours. We picked up the mail on our way up. I was excited to see Christmas cards in the pile. We gathered in the kitchen to open them once we found a place to drop all our luggage. I began to cry as checks fell out of two of the cards. As we read the loving words written in them we just looked at each other in amazement. Just when life seems so overwhelming God uses someone to send the message that He's got us right in the safety of His hand. We couldn't be more overwhelmed by God's love right now and the love of our friends and family. We were wondering how we would be able to afford going home for Christmas, but now God has provided a way! I cried and hugged Ryan and we both agreed that it's ok. There is so much going on in our lives and hearts right now that I'm not even sure what "it" is, but we know that with God, it's ok :)
Landon's Momma
Long journey
It is now 6:06 PM Tuesday night. We both worked all day, got home, grabbed our luggage and supper we packed the night before and now we’re on the road.
I got a call on Monday at work from U of M. The lady I talked to told me they want to see me as soon as possible. I figured as much, but I thought they would give me a week to schedule. Nope, she told me Wednesday at 8 or 11? This Wednesday? I had to catch me breath. Ummmmmm…. Yeah that will work, we’ll take the one at 11. So here we are. The most spur of the moment 6 hour drive I’ve ever taken. We’ll get to my aunts around 11 or 12, head to our appointment in the morning and then take off for home after that. We both want to miss the least amount of work as possible, so this is going to be a very fast trip.
I can’t help but feel that this trip is just the beginning of a very long journey. It’s dark and there’s not many others out traveling, but I can look over and see Ryan, my God chosen partner. I find so much comfort in knowing we are in this together. No one else is traveling in here with us, no one else could fully understand the passion and love we have for our son. We know that God is going before us and paving the way, though it may not be easy, it’s where we’re supposed to be.
Saturday, December 10, 2011
Getting through...
That was my response to my boss asking me how I was doing at work yesterday. Every hour seemed to creep by, even with how much I love each of the kids in my class, it was so difficult to be there when every thought I have is on my Landon right now.
This wound is still so fresh, I am learning how to live with it. It is hard when people tell me not to worry, that doctors can do so much now days that Landon will be fine. They may be right and I know they are only trying to encourage me... but there are just some things that words can't make right, hugs are so much better. Please just let me cry instead of dismissing my sons story and telling me about your relative who went through something even worse. I can not let the few disheartening things others have said to me hurt me when there has been thousands more encouraging, loving, and supportive things spoken and prayed over our family. Just yesterday I was reading my Bible during the kids nap time and feeling so alone when my childhood friend who now lives in Bismarck came into my room. She hugged me, there is just something about hugs, I can hold myself together most of the time around people, but hugs break me every time. Her visit was like God Himself bringing me hot chocolate just to let me know that He is with me.
I started feeling very sick towards the end of my day. I was losing my voice and my cough was becoming uncontrollable. They let me leave an hour early. I was surprised to find our door unlocked when I got home. Ryan wasn't able to make it through a full day of work either. He made me go to bed, but I couldn't sleep so I did more research and read more stories and comments people have left me. I was so excited to see a message on my Facebook from a woman I don't know, but she told me her son has the exact same condition as Landon. She told me that U of M is the best and their doctors will put me at ease. She told me that nothing anyone could say will prepare me and Ryan for what we will face ahead, but that she was here to answer any questions I may have. I thank God for brining a mother into my life who has gone down this road. I will continue to stay in contact with her.
We went to bed early, but I woke up in the middle of the night feeling horrible. I could hardly get words out, my throat felt like it was swelling shut. I could tell Ryan was getting more and more worried about me. It was a long night as we both waited for 9 o clock to arrive so I could go to the clinic. I was able to get a little sleep, but we left for the clinic this morning. The doctor listened to our story, looked me over and told me that he wishes there was more he could do for me. But, my sinuses are just all out of whack from lack of sleep and stress. He was very nice and wanted to know about Landon. He told me that U of M will give him the best care that he could get anywhere. He told me that it will be a hard road and we have many more sleepless nights ahead of us, but it's a road that can be traveled. Talking to him was very encouraging to both of us. We left and Ryan drove to Target to get a humidifier and some allergy medicine that the doctor approved. Then he drove me home, gave me a pill and shut me up our bedroom with this humidifier. I actually slept for a couple hours. I know how needed that was. I've gotten probably 12 hours of sleep the last 3 nights. I'm physically and emotionally exhausted. I don't know how I'm taking care of Landon when I'm not able to take care of myself. this thought scares me, but with every kick I'm reminded that He's safe in the arms of the Father.
We are still waiting on a call from U of M which is extremely frustrating. I just want to know what is next. I want to know when my next appointment is so I can look forward to something... to seeing my Landon again... to finding out anything we can about him... to learning whatever we have to so that we can prepare to take care of him. One of the hardest things is just this feeling of helplessness. It's why I can't sleep or do anything where I feel like I'm not doing anything. Ryan reminds me constantly that I need to just relax and trust God. He tells me that's the most important thing I can do for Landon right now. I know he's right, it's just so hard to let go.
I read this in the book "Jesus Calling" today by Sarah Young
Dec. 10
When your private world feels unsteady and you grip my hand for support, you are living in conscious dependance on Me.
Instead of yearning for a problem-free life, rejoice that trouble can highlight your awareness of My Presence. In the darkness of adversity, you are able to see more clearly the radiance of My Face. Accept the value of problems in this life, considering them pure joy. Remember that you have an eternity of trouble-free living awaiting you in heaven.
I feel like I am a long way from saying this is pure joy. But I do thank God that He is in control and my helplessness only highlights His radiance and reminds me of my dependance.
Again, thank you to everyone who is praying for our family it means more than you could know and each prayer is accomplishing something in our lives. Know that we are thanking God for you and praying he blesses you for your love.
-Landon's momma
This wound is still so fresh, I am learning how to live with it. It is hard when people tell me not to worry, that doctors can do so much now days that Landon will be fine. They may be right and I know they are only trying to encourage me... but there are just some things that words can't make right, hugs are so much better. Please just let me cry instead of dismissing my sons story and telling me about your relative who went through something even worse. I can not let the few disheartening things others have said to me hurt me when there has been thousands more encouraging, loving, and supportive things spoken and prayed over our family. Just yesterday I was reading my Bible during the kids nap time and feeling so alone when my childhood friend who now lives in Bismarck came into my room. She hugged me, there is just something about hugs, I can hold myself together most of the time around people, but hugs break me every time. Her visit was like God Himself bringing me hot chocolate just to let me know that He is with me.
I started feeling very sick towards the end of my day. I was losing my voice and my cough was becoming uncontrollable. They let me leave an hour early. I was surprised to find our door unlocked when I got home. Ryan wasn't able to make it through a full day of work either. He made me go to bed, but I couldn't sleep so I did more research and read more stories and comments people have left me. I was so excited to see a message on my Facebook from a woman I don't know, but she told me her son has the exact same condition as Landon. She told me that U of M is the best and their doctors will put me at ease. She told me that nothing anyone could say will prepare me and Ryan for what we will face ahead, but that she was here to answer any questions I may have. I thank God for brining a mother into my life who has gone down this road. I will continue to stay in contact with her.
We went to bed early, but I woke up in the middle of the night feeling horrible. I could hardly get words out, my throat felt like it was swelling shut. I could tell Ryan was getting more and more worried about me. It was a long night as we both waited for 9 o clock to arrive so I could go to the clinic. I was able to get a little sleep, but we left for the clinic this morning. The doctor listened to our story, looked me over and told me that he wishes there was more he could do for me. But, my sinuses are just all out of whack from lack of sleep and stress. He was very nice and wanted to know about Landon. He told me that U of M will give him the best care that he could get anywhere. He told me that it will be a hard road and we have many more sleepless nights ahead of us, but it's a road that can be traveled. Talking to him was very encouraging to both of us. We left and Ryan drove to Target to get a humidifier and some allergy medicine that the doctor approved. Then he drove me home, gave me a pill and shut me up our bedroom with this humidifier. I actually slept for a couple hours. I know how needed that was. I've gotten probably 12 hours of sleep the last 3 nights. I'm physically and emotionally exhausted. I don't know how I'm taking care of Landon when I'm not able to take care of myself. this thought scares me, but with every kick I'm reminded that He's safe in the arms of the Father.
We are still waiting on a call from U of M which is extremely frustrating. I just want to know what is next. I want to know when my next appointment is so I can look forward to something... to seeing my Landon again... to finding out anything we can about him... to learning whatever we have to so that we can prepare to take care of him. One of the hardest things is just this feeling of helplessness. It's why I can't sleep or do anything where I feel like I'm not doing anything. Ryan reminds me constantly that I need to just relax and trust God. He tells me that's the most important thing I can do for Landon right now. I know he's right, it's just so hard to let go.
I read this in the book "Jesus Calling" today by Sarah Young
Dec. 10
When your private world feels unsteady and you grip my hand for support, you are living in conscious dependance on Me.
Instead of yearning for a problem-free life, rejoice that trouble can highlight your awareness of My Presence. In the darkness of adversity, you are able to see more clearly the radiance of My Face. Accept the value of problems in this life, considering them pure joy. Remember that you have an eternity of trouble-free living awaiting you in heaven.
I feel like I am a long way from saying this is pure joy. But I do thank God that He is in control and my helplessness only highlights His radiance and reminds me of my dependance.
Again, thank you to everyone who is praying for our family it means more than you could know and each prayer is accomplishing something in our lives. Know that we are thanking God for you and praying he blesses you for your love.
-Landon's momma
Friday, December 9, 2011
a new kind of normal
Yesterday was.... hard, but it was also good. Ryan got up early and took the day off. I told him he didn't have to, but looking back I am so glad he did. We have never needed each other more than right now. We feel so surrounded by people's love and prayers. We know we are so blessed. At one point yesterday, I told Ryan that for how rare this condition is, God used us to create this child who is strong enough to fight it. That is a thought that humbles me. My heart has been broken by Landon's news, and what lies ahead scares me to the core, but I cannot lose sight of the fact that at the end we will have this amazing child with this amazing story.
People have asked me how I am doing? That is a hard question to answer, I still feel numb most of the time, I don't know how to get back into life and when I do find myself doing something that would of been "normal" before this news, it's as if I realize everything all over again, and it breaks me yet again. This is physically and emotionally exhausting. The sadness is so deep in my heart yesterday I found myself crying in my sleep. As the day went on, it got better, I believe I gained so much strength just by reading people's prayers for Landon and for us. I realize that although we are both grieving in our own way, we must not let this pain cripple us.
We went and picked up our Christmas cards yesterday, it was such a beautiful winter day. It was cold, but the sun was shining. We had a snowball fight on our way to the car, we laughed. At first after receiving news like we have, you feel as though you will never get normal back. It is true, we may never, but why can't we have a different kind of normal? One where we are so aware of Gods presence holding us together, one where it's ok to break down in tears at any point in the day, where although we are facing something scary and out of our control, we trust God, and continue to live and love. We need laughter, we need those moments in our day when for a couple minutes we just enjoy the love we have for each other, where we have fun together like we always have. I know Landon wants us to laugh, wants us to continue to live our lives, no matter how different it may be now. Ryan and I have realized that we can allow this to make us angry and bitter, or we can pull together and become stronger. We are choosing the later.
With that said, I am dreading today. I am dreading going to work and having to tell people in person what is going on. I don't know how I will just put all of this aside and be able to be teacher. I called Liberty yesterday and withdrew from all of the classes I had registered for next semester. Ryan told me I needed to and I know he is right, but it was hard to let go of the dream of graduating this May, having my degree, and just being able to focus on being mom after that. I realize that now I will have to take more classes in the future, once Landon is here.
Financially me not being in school will make it a little easier on us and Ryan knows me and knows that although I would of tried the added stress would of made me sick. I will be traveling every couple weeks to Minneapolis and right now I just need to focus on taking care of Landon. So although it was hard to give that up it was also a relief. I still have finals left in the classes I'm taking now and I'm already a little behind. The thought of sitting down and being able to write a 15 page research paper is extremely overwhelming right now. I don't know how I will do it. Please pray that I can finish strong.
The doctor who gave me the news about Landon called me yesterday and told me that he has talked to a fetal cardiologist at the University of Minnesota in Minneapolis and she knows all about Landon. He told me that she would give me a call that day to let me know when my first appointment is. I waited for her call all day, but it never came. I'm hoping she calls early today. I feel a need to know what our next step is going to be. This is a hard time of year, with Christmas coming up. We were planning on going to Warroad over Christmas, but if we have to be in Minneapolis sometime soon, I don't know if we will be able to make both trips. This realization is heart wrenching because we miss and need our families so much right now, but again we are realizing that life will be different now. It will be full of sacrifices, but for Landon we would give up anything.
People are asking me how Ryan is doing. He is dealing with this in his own way. He is the strongest person I know. God knew what He was doing when He put us together. We balance each other, he keeps me sane, he forces me to take breaks and still enjoy life. I need him more than I know. Our marriage has already been taken to a different level. A level of trust and reliance that we never knew before. No one besides God loves this little boy as much as us. He is ours and we are going to fight this battle... together.
People have asked me if it's alright if they put Landon and us on their churches prayer chains. YES, please. We will never deny prayer from anyone! Please share this blog and Landon's story with everyone you know. We have been amazed that people we don't even know are praying for our family. Appreciation is not a strong enough word to describe how we feel when we hear that. Prayer is our weapon against this and we need all the help we can get. If you were to tell me a week ago that we would be going through this I would of told you I'm not capable, but here it is. There is no turning back and we realize that prayer is what is holding us together. So again, thank you, thank you, thank you!
-Landon's momma
People have asked me how I am doing? That is a hard question to answer, I still feel numb most of the time, I don't know how to get back into life and when I do find myself doing something that would of been "normal" before this news, it's as if I realize everything all over again, and it breaks me yet again. This is physically and emotionally exhausting. The sadness is so deep in my heart yesterday I found myself crying in my sleep. As the day went on, it got better, I believe I gained so much strength just by reading people's prayers for Landon and for us. I realize that although we are both grieving in our own way, we must not let this pain cripple us.
We went and picked up our Christmas cards yesterday, it was such a beautiful winter day. It was cold, but the sun was shining. We had a snowball fight on our way to the car, we laughed. At first after receiving news like we have, you feel as though you will never get normal back. It is true, we may never, but why can't we have a different kind of normal? One where we are so aware of Gods presence holding us together, one where it's ok to break down in tears at any point in the day, where although we are facing something scary and out of our control, we trust God, and continue to live and love. We need laughter, we need those moments in our day when for a couple minutes we just enjoy the love we have for each other, where we have fun together like we always have. I know Landon wants us to laugh, wants us to continue to live our lives, no matter how different it may be now. Ryan and I have realized that we can allow this to make us angry and bitter, or we can pull together and become stronger. We are choosing the later.
With that said, I am dreading today. I am dreading going to work and having to tell people in person what is going on. I don't know how I will just put all of this aside and be able to be teacher. I called Liberty yesterday and withdrew from all of the classes I had registered for next semester. Ryan told me I needed to and I know he is right, but it was hard to let go of the dream of graduating this May, having my degree, and just being able to focus on being mom after that. I realize that now I will have to take more classes in the future, once Landon is here.
Financially me not being in school will make it a little easier on us and Ryan knows me and knows that although I would of tried the added stress would of made me sick. I will be traveling every couple weeks to Minneapolis and right now I just need to focus on taking care of Landon. So although it was hard to give that up it was also a relief. I still have finals left in the classes I'm taking now and I'm already a little behind. The thought of sitting down and being able to write a 15 page research paper is extremely overwhelming right now. I don't know how I will do it. Please pray that I can finish strong.
The doctor who gave me the news about Landon called me yesterday and told me that he has talked to a fetal cardiologist at the University of Minnesota in Minneapolis and she knows all about Landon. He told me that she would give me a call that day to let me know when my first appointment is. I waited for her call all day, but it never came. I'm hoping she calls early today. I feel a need to know what our next step is going to be. This is a hard time of year, with Christmas coming up. We were planning on going to Warroad over Christmas, but if we have to be in Minneapolis sometime soon, I don't know if we will be able to make both trips. This realization is heart wrenching because we miss and need our families so much right now, but again we are realizing that life will be different now. It will be full of sacrifices, but for Landon we would give up anything.
People are asking me how Ryan is doing. He is dealing with this in his own way. He is the strongest person I know. God knew what He was doing when He put us together. We balance each other, he keeps me sane, he forces me to take breaks and still enjoy life. I need him more than I know. Our marriage has already been taken to a different level. A level of trust and reliance that we never knew before. No one besides God loves this little boy as much as us. He is ours and we are going to fight this battle... together.
People have asked me if it's alright if they put Landon and us on their churches prayer chains. YES, please. We will never deny prayer from anyone! Please share this blog and Landon's story with everyone you know. We have been amazed that people we don't even know are praying for our family. Appreciation is not a strong enough word to describe how we feel when we hear that. Prayer is our weapon against this and we need all the help we can get. If you were to tell me a week ago that we would be going through this I would of told you I'm not capable, but here it is. There is no turning back and we realize that prayer is what is holding us together. So again, thank you, thank you, thank you!
-Landon's momma
Thursday, December 8, 2011
Wednesday, December 7, 2011
Landons Letters
Landon is the name of our beautiful baby boy. He is 22 weeks and already weighs 1lb 1oz. He never seems to stop moving :)
I had hopes of starting a blog to document the time I have with him inside of me, but I didn't know it would be like this. You see, Landon is a very special child. We had our first ultrasound two days ago, the 6th of Dec. It was amazing, just watching him move around and punching the whole time. Seeing that his heart is beating and that he has all of his organs was such a relief to me. She told us we were having a boy and we couldn't have been more happy! We were both hoping for our first born to be a boy. Someone to protect and look after all his future brothers and sisters. I also work with almost all boys so I felt like God was preparing me for the chaos, cars, and dinosaurs :) and there is just something about a mommies relationship with her son that is so precious. I could tell Ryan was on cloud 9. We left the ultra sound room like two giddy children and sat in the waiting room looking over and over again at our pictures. When we finally were able to see our doctor she told us that she is thrilled about Landon's weight. He is a healthy big boy. She said that, from the ultra sound everything looks great, except they had some concerns with how it looked like the blood was flowing through one of his heart valves. She told us it may be nothing, but they wanted to check it out more so she scheduled me for a fetal echo the next day at 3:00. I was not that worried about it because it seemed to be a minor thing. I figured the main thing is his heart is beating at a good rate... he's fine. Me and Ryan celebrated that night with dinner. We also went and bought Landon his first toy. We got him a small froggy pillow pet and we finally found the perfect fabric to make our baby boy a blankie. We also went to the mall and had his name put on a Christmas ornament we've been waiting to get :) We went home, had sparkling cider and made our Landon his first blankie. It was the perfect day!
Yesterday I woke up and my heart was very heavy. I think it just sunk in that there could possibly be something wrong with Landon. I tried to push the thought away and went about my normal routine. Ryan went to work early so I headed off to spin class on my own. When I got home the apartment was empty and all the lights were off except for our tree with Landon's blankie and frog sitting perfectly underneath. I walked over, sat down and grabbed the little frog and held it close to my chest, so many emotions came flooding all at once and I just broke down in tears. I told God I was scared. I was not only scared that something could be wrong, I was scared that I already have this powerful, relentless love for this child. I can't imagine him ever hurting, the thought just makes me sick. I thought of how long it took me to let Ryan in and be able to truly trust him and now I don't even have the choice to let this little guy in, he's already in, he's a part of me. I told God that whatever happens I trust Him. Landon is his not mine, he is His. I truly believe this, but it doesn't make living it out any easier.
Work went good, my boss actually scheduled someone in my room and she didn't even realize she did it or know why, so I was able to leave in time to make it to my appointment. I knew that was just God telling me that he knew this was coming, even though no one else did. I got to the hospital and as soon as I walked through the doors I wished Ryan was there with me. It felt like a hospital, not like the warm, inviting women's clinic I was used to going to. I went to the heart and lung center, signed in, and waited. There was no other pregnant women waiting with me like there usually is. I felt alone. I was so full of every kind of emotion, but the strongest was just the need to protect my child. Finally, after waiting for what seemed like eternity, my name was called. I went back into a dark room with nothing really in it except a bed and a big monitor and keyboard. I wasn't sure what this procedure would be like so I was relieved that it looked like it was just going to be another ultra sound. The nurse explained to me that she was going to get pictures of Landon's heart and then a doctor would come in, check things out, and explain what they find to me. So I laid there and watched as Landon's picture appeared on the screen, there he was, so perfect, so safe. I thought of how I can't see Him, but God is right there with Landon. Landon started putting on a show for me, which made for a fun watch for me, but the nurse was having a really hard time getting good pictures because he was moving and flipping around like crazy. She asked me if I'm ready to chase him around? I just smiled :) There was a small amount of time that he just laid still and sucked his thumb. That is a picture I will hide in my heart forever. He is so perfect, so beautiful. The nurse looked for probably 45 min or longer. Finally the doctor arrived, he was an older gentleman with a british accent. I liked him right away. He explained to me again, what he was going to be doing. He told me that I would hear them talking, but that he would explain everything when he's all done. It wasn't even 2 min into it and he was already amazed at how much Landon moves. He asked how old he is, and then in his british accent, told me that Landon is going to be a runner, the nurse had told me gymnast. I like runner better :) All of these memories I'm hiding away in my heart. I felt blessed to be able to watch my baby for close to two hours. To see his heart so closely for so long. Not many moms get to do that :) He is strong, he is perfect :) The more the doctor looked and discussed what he was seeing with the nurse, the more I began to think, ok there really might be something wrong. But how can something be wrong with his heart when I'm watching him move around with ease? The more I laid there and listened to them talk the more I wished Ryan was there beside me holding my hand. I needed his strength. Fear would flood me every time I heard them say the words massive amount.... or no flow.... or closed. I began to brace myself for the news, but knew that I was on the verge of tears. I have never been super sick I have never sat and waited knowing that there would be bad news and now I was waiting for news about this tiny little life inside of me that I care more about than my own.
I wiped the goop off my belly and sat up in the bed. I doctor pulled his chair close to the side of the bed so he could write. He told me that Landon has a very rare heart condition, but the good news is it is fixable. He went on to tell me that right now Landon is fine. He is perfectly safe because he is getting everything he needs from the placenta. I tried to listen to all of the technical terms but I was just trying to hold it together. I was crying and just shaking my head in agreement to what he was saying like I was understanding, but really I was just getting bits and pieces. Landon has what is called Pulmonary Atresia and Intact Ventricular Septum, it's a very rare heart condition where one of his heart valves is completely closed. Right now he is fine and he will most likely have a normal pregnancy, but once he is born there will be no way for blood to flow to his lungs. The doctor told me that he can live up to week with medication, but he will need surgery within the first week in order to survive. He told me that he will talk to my doctor and I will have to be moved to be treated at University of Minnesota where they have specialist that will help Landon after he is born. He told me that I can have a normal delivery and Landon will not have to go straight to surgery, but they will want to start fixing it as soon as possible. He told me that Landon may need to have up to 4 surgeries within the first 2 years of his life, depending on how successful they are. I asked if they know what causes it and he said they don't, they think it has to do with one gene, but there has not been enough research done to say for sure. He told me that he will talk to my doctor and give me a call the next day to let me know when I will have to go to Minneapolis. He told me again that is treatable and he could live a very normal healthy life. I thanked him, and then he left.
There I was in a room all by myself. I had just heard some of the scariest news a mother could get and I was numb. I couldn't hold back the tears and I wondered how I would ever be able to explain this to Ryan. On the way out I called my boss and told her I wouldn't be coming to work the next day. Ryan called while I was walking out, he could tell right away that I wasn't ok and I could tell he was scared. I told him I would be home in a little bit. I don't remember the drive home. I pulled up to our apartment, stopped the car and just laid my head on the steering wheel and sobbed and sobbed... I remembered this morning, telling God that Landon is His not mine. I looked up and saw Ryan in our patio window watching me. I couldn't look at him so I just turned the car off and walked inside. Our door was open and Ryan was there waiting. I collapsed in his arms and sobbed uncontrollably. He didn't say anything just held me. After a while he walked me to our bedroom and we sat on the side of our bed. I began to tell him everything I remembered... I could tell it was like he got the wind knocked out of him. He wasn't expecting bad news at all. Just the night before we were so full of joy and now we're clinging to each other and crying. He told me that it's going to be ok, Landon's going to be ok. He told me that God is in control and He'll take care of him, we need to trust. I just knodded my head, seems like that's all I'd been able to do for the past 3 hours. He asked if we could pray I agreed, he prayed the most honest, heart felt, scared, prayer I've ever heard. It was a daddy's prayer begging God to take care of and heal his son. When he told God that Landon belongs to Him not us we both broke down. Then we just held each other because no words could describe what God was doing in both of our hearts. I told him I couldn't believe it, babies are born everyday, why our baby?? Even now writing it the sadness is so deep I can't see through my tears. Ryan told me to stop, that Landon is our blessing, we can't ask why. I know he is right. He told me that I'm strong, but I sure don't feel it. I've never felt weaker actually. It's as if everything I thought I knew, I thought we had, has been torn away into the unknown. I know Ryan is right, we can't ask why, we can just thank God for every day that we get to have with Landon. I do thank God for the memories that I already have hidden in my heart of my precious little boy and I know that whatever the doctors tell me, his heart is strong. He is strong and he is a fighter. We are believing God for a miracle.
I am still numb. I am still processing, but I am clinging to Jesus. We know that he is the only one who knows Landon better and loves him more than we do. I will continue to write and keep you posted on what is happening in Landon's life. Please pray. Nothing is to big for our God. He is holding Landon right now and I truly believe that He's already written out his story. Our little boy is special. I have no doubt that God is going to use his life to bring glory to His name.
-Mommy
I had hopes of starting a blog to document the time I have with him inside of me, but I didn't know it would be like this. You see, Landon is a very special child. We had our first ultrasound two days ago, the 6th of Dec. It was amazing, just watching him move around and punching the whole time. Seeing that his heart is beating and that he has all of his organs was such a relief to me. She told us we were having a boy and we couldn't have been more happy! We were both hoping for our first born to be a boy. Someone to protect and look after all his future brothers and sisters. I also work with almost all boys so I felt like God was preparing me for the chaos, cars, and dinosaurs :) and there is just something about a mommies relationship with her son that is so precious. I could tell Ryan was on cloud 9. We left the ultra sound room like two giddy children and sat in the waiting room looking over and over again at our pictures. When we finally were able to see our doctor she told us that she is thrilled about Landon's weight. He is a healthy big boy. She said that, from the ultra sound everything looks great, except they had some concerns with how it looked like the blood was flowing through one of his heart valves. She told us it may be nothing, but they wanted to check it out more so she scheduled me for a fetal echo the next day at 3:00. I was not that worried about it because it seemed to be a minor thing. I figured the main thing is his heart is beating at a good rate... he's fine. Me and Ryan celebrated that night with dinner. We also went and bought Landon his first toy. We got him a small froggy pillow pet and we finally found the perfect fabric to make our baby boy a blankie. We also went to the mall and had his name put on a Christmas ornament we've been waiting to get :) We went home, had sparkling cider and made our Landon his first blankie. It was the perfect day!
Yesterday I woke up and my heart was very heavy. I think it just sunk in that there could possibly be something wrong with Landon. I tried to push the thought away and went about my normal routine. Ryan went to work early so I headed off to spin class on my own. When I got home the apartment was empty and all the lights were off except for our tree with Landon's blankie and frog sitting perfectly underneath. I walked over, sat down and grabbed the little frog and held it close to my chest, so many emotions came flooding all at once and I just broke down in tears. I told God I was scared. I was not only scared that something could be wrong, I was scared that I already have this powerful, relentless love for this child. I can't imagine him ever hurting, the thought just makes me sick. I thought of how long it took me to let Ryan in and be able to truly trust him and now I don't even have the choice to let this little guy in, he's already in, he's a part of me. I told God that whatever happens I trust Him. Landon is his not mine, he is His. I truly believe this, but it doesn't make living it out any easier.
Work went good, my boss actually scheduled someone in my room and she didn't even realize she did it or know why, so I was able to leave in time to make it to my appointment. I knew that was just God telling me that he knew this was coming, even though no one else did. I got to the hospital and as soon as I walked through the doors I wished Ryan was there with me. It felt like a hospital, not like the warm, inviting women's clinic I was used to going to. I went to the heart and lung center, signed in, and waited. There was no other pregnant women waiting with me like there usually is. I felt alone. I was so full of every kind of emotion, but the strongest was just the need to protect my child. Finally, after waiting for what seemed like eternity, my name was called. I went back into a dark room with nothing really in it except a bed and a big monitor and keyboard. I wasn't sure what this procedure would be like so I was relieved that it looked like it was just going to be another ultra sound. The nurse explained to me that she was going to get pictures of Landon's heart and then a doctor would come in, check things out, and explain what they find to me. So I laid there and watched as Landon's picture appeared on the screen, there he was, so perfect, so safe. I thought of how I can't see Him, but God is right there with Landon. Landon started putting on a show for me, which made for a fun watch for me, but the nurse was having a really hard time getting good pictures because he was moving and flipping around like crazy. She asked me if I'm ready to chase him around? I just smiled :) There was a small amount of time that he just laid still and sucked his thumb. That is a picture I will hide in my heart forever. He is so perfect, so beautiful. The nurse looked for probably 45 min or longer. Finally the doctor arrived, he was an older gentleman with a british accent. I liked him right away. He explained to me again, what he was going to be doing. He told me that I would hear them talking, but that he would explain everything when he's all done. It wasn't even 2 min into it and he was already amazed at how much Landon moves. He asked how old he is, and then in his british accent, told me that Landon is going to be a runner, the nurse had told me gymnast. I like runner better :) All of these memories I'm hiding away in my heart. I felt blessed to be able to watch my baby for close to two hours. To see his heart so closely for so long. Not many moms get to do that :) He is strong, he is perfect :) The more the doctor looked and discussed what he was seeing with the nurse, the more I began to think, ok there really might be something wrong. But how can something be wrong with his heart when I'm watching him move around with ease? The more I laid there and listened to them talk the more I wished Ryan was there beside me holding my hand. I needed his strength. Fear would flood me every time I heard them say the words massive amount.... or no flow.... or closed. I began to brace myself for the news, but knew that I was on the verge of tears. I have never been super sick I have never sat and waited knowing that there would be bad news and now I was waiting for news about this tiny little life inside of me that I care more about than my own.
I wiped the goop off my belly and sat up in the bed. I doctor pulled his chair close to the side of the bed so he could write. He told me that Landon has a very rare heart condition, but the good news is it is fixable. He went on to tell me that right now Landon is fine. He is perfectly safe because he is getting everything he needs from the placenta. I tried to listen to all of the technical terms but I was just trying to hold it together. I was crying and just shaking my head in agreement to what he was saying like I was understanding, but really I was just getting bits and pieces. Landon has what is called Pulmonary Atresia and Intact Ventricular Septum, it's a very rare heart condition where one of his heart valves is completely closed. Right now he is fine and he will most likely have a normal pregnancy, but once he is born there will be no way for blood to flow to his lungs. The doctor told me that he can live up to week with medication, but he will need surgery within the first week in order to survive. He told me that he will talk to my doctor and I will have to be moved to be treated at University of Minnesota where they have specialist that will help Landon after he is born. He told me that I can have a normal delivery and Landon will not have to go straight to surgery, but they will want to start fixing it as soon as possible. He told me that Landon may need to have up to 4 surgeries within the first 2 years of his life, depending on how successful they are. I asked if they know what causes it and he said they don't, they think it has to do with one gene, but there has not been enough research done to say for sure. He told me that he will talk to my doctor and give me a call the next day to let me know when I will have to go to Minneapolis. He told me again that is treatable and he could live a very normal healthy life. I thanked him, and then he left.
There I was in a room all by myself. I had just heard some of the scariest news a mother could get and I was numb. I couldn't hold back the tears and I wondered how I would ever be able to explain this to Ryan. On the way out I called my boss and told her I wouldn't be coming to work the next day. Ryan called while I was walking out, he could tell right away that I wasn't ok and I could tell he was scared. I told him I would be home in a little bit. I don't remember the drive home. I pulled up to our apartment, stopped the car and just laid my head on the steering wheel and sobbed and sobbed... I remembered this morning, telling God that Landon is His not mine. I looked up and saw Ryan in our patio window watching me. I couldn't look at him so I just turned the car off and walked inside. Our door was open and Ryan was there waiting. I collapsed in his arms and sobbed uncontrollably. He didn't say anything just held me. After a while he walked me to our bedroom and we sat on the side of our bed. I began to tell him everything I remembered... I could tell it was like he got the wind knocked out of him. He wasn't expecting bad news at all. Just the night before we were so full of joy and now we're clinging to each other and crying. He told me that it's going to be ok, Landon's going to be ok. He told me that God is in control and He'll take care of him, we need to trust. I just knodded my head, seems like that's all I'd been able to do for the past 3 hours. He asked if we could pray I agreed, he prayed the most honest, heart felt, scared, prayer I've ever heard. It was a daddy's prayer begging God to take care of and heal his son. When he told God that Landon belongs to Him not us we both broke down. Then we just held each other because no words could describe what God was doing in both of our hearts. I told him I couldn't believe it, babies are born everyday, why our baby?? Even now writing it the sadness is so deep I can't see through my tears. Ryan told me to stop, that Landon is our blessing, we can't ask why. I know he is right. He told me that I'm strong, but I sure don't feel it. I've never felt weaker actually. It's as if everything I thought I knew, I thought we had, has been torn away into the unknown. I know Ryan is right, we can't ask why, we can just thank God for every day that we get to have with Landon. I do thank God for the memories that I already have hidden in my heart of my precious little boy and I know that whatever the doctors tell me, his heart is strong. He is strong and he is a fighter. We are believing God for a miracle.
I am still numb. I am still processing, but I am clinging to Jesus. We know that he is the only one who knows Landon better and loves him more than we do. I will continue to write and keep you posted on what is happening in Landon's life. Please pray. Nothing is to big for our God. He is holding Landon right now and I truly believe that He's already written out his story. Our little boy is special. I have no doubt that God is going to use his life to bring glory to His name.
-Mommy
Subscribe to:
Posts (Atom)