Please keep us in your prayers as we will be leaving after work on Monday for Minneapolis. We will be having our 30 week (big) checkup. We will hopefully get to meet all of the people that will be involved in Landon's birth and after-birth care in the NICU. We will get a tour of the hospital, NICU, and Ronald McDonald house where we will live until we are told we can bring Landon home. I will have another ultra sound and fetal echo (idk if there will be other tests run yet) and we will be asking a ton of questions and hopefully getting back answers and understanding about what his birth will be like and what will happen after he's born. I am going to fight for time with him right after he's born. The most I've heard a mom of a child with his condition getting is 30 seconds. I know how important skin to skin contact between baby and mother is right after birth for his health and development so I will fight for every second they allow me to be with him.
Ryan's parents and my mom will also be coming so we are looking forward to time with family. We will have appointments Tues. and Wed. and go back home once we are done on Wed. It will be a quick trip but VERY important. Pray that we are clear minded and ask the right questions. I will write soon and let you know how it went and hopefully post a new 3D pic of Landon :D
Landon's Momma
Sunday, January 29, 2012
Life in the Maxwell house continued...
I wanted to write a post simple about our life right now, minus all the fears, chaos, and doctors appointments. We have experienced so many blessings and God continues to make it clear to us that we are exactly where he wants us right now.
A typical week in our family is very busy Monday night we come home and relax as a couple, Tuesday nights we have our small group at Josh and Heidi's place. They have become some of our closest friends here and we feel so blessed that God brought our paths together. We were thrilled to find out a couple months ago that they also are expecting their first child :) I think it's safe to say our friendship will continue to grow as we are both entering this new stage of life called parenting. They are such a gift and we always look forward to Tues. nights.
Wednesdays evenings our church has a community supper, worship, and then several small group Bible studies to choose from. Ryan has started playing bass for the worship and then helps with youth group. This has been so awesome for him! Playing guitar is a way he finds release from the stress of life and peace in Gods presence. He also really enjoys helping with the youth group and getting to know the kids there. I have started going to the courageous for women Bible study which has also been awesome and God knows how needed right now.
Thursdays are always my long days of doctors appointments and now we have started going to a child birth preparation class in the evenings. Last week was our first one and we both enjoyed it. It was fun being in a room with seven other pregnant couples. I have done so much reading and research, but I think it will be really good for Ryan to see that he plays a huge role in the birth of our baby as well. We both realize that our delivery will be different than the norm, but we agree that the more we know the better. The more prepared we are the better our chance of reaching our goal of a normal and natural delivery.
Friday nights we usually try to do something fun as a couple after work and then go home and relax. We realize that our days of being able to do this with ease are quickly approaching an end so we try to make our marriage top priority. I believe this has been so crucial to us surviving the stressors that we've been faced with. Our marriage and friendship is now stronger than ever before, we praise God for each other.
Saturdays I spend my mornings at the gym going to spin class and then to yoga then come home and nap. We usually spend the rest of the day getting things done that don't get done during the week (running errands, catching up on laundry and dishes, checking emails, writing thank-you's etc.) Weekends tend to be low key and relaxing which is super needed by the time we get through our long week days. Sundays we go to church then come home and relax (I nap and Ryan plays video games :) Before we know it it's the start of another week.
Although Landon's pregnancy has not been typical I still experience some of the normal joys of expecting. Most nights I wake up at 3 in the morning like clockwork. I can't determine if it's due to the fact that Landon's awake and moving around so much, I have to use the bathroom, back pain, or I just need my nightly glass of orange juice, but I'm lucky if I can get back to sleep before my alarm goes off at 5. My belly is becoming large and I wonder how it could possible still have two months more of growing :o My back is always sore and I often wake up screaming from the pain of leg cramps. Even with all those things, I am enjoying being pregnant with my little prince and cherishing the moments (good and bad) that I have with him inside of me. Our weeks go by so quickly and I know that we do not have much time left before our lives change forever so although it is easy to want to skip to the next big things, I am learning to be content and hold onto each moment that I am in. Life is good, God is SO faithful!
Landon's Momma
A typical week in our family is very busy Monday night we come home and relax as a couple, Tuesday nights we have our small group at Josh and Heidi's place. They have become some of our closest friends here and we feel so blessed that God brought our paths together. We were thrilled to find out a couple months ago that they also are expecting their first child :) I think it's safe to say our friendship will continue to grow as we are both entering this new stage of life called parenting. They are such a gift and we always look forward to Tues. nights.
Wednesdays evenings our church has a community supper, worship, and then several small group Bible studies to choose from. Ryan has started playing bass for the worship and then helps with youth group. This has been so awesome for him! Playing guitar is a way he finds release from the stress of life and peace in Gods presence. He also really enjoys helping with the youth group and getting to know the kids there. I have started going to the courageous for women Bible study which has also been awesome and God knows how needed right now.
Thursdays are always my long days of doctors appointments and now we have started going to a child birth preparation class in the evenings. Last week was our first one and we both enjoyed it. It was fun being in a room with seven other pregnant couples. I have done so much reading and research, but I think it will be really good for Ryan to see that he plays a huge role in the birth of our baby as well. We both realize that our delivery will be different than the norm, but we agree that the more we know the better. The more prepared we are the better our chance of reaching our goal of a normal and natural delivery.
Friday nights we usually try to do something fun as a couple after work and then go home and relax. We realize that our days of being able to do this with ease are quickly approaching an end so we try to make our marriage top priority. I believe this has been so crucial to us surviving the stressors that we've been faced with. Our marriage and friendship is now stronger than ever before, we praise God for each other.
Saturdays I spend my mornings at the gym going to spin class and then to yoga then come home and nap. We usually spend the rest of the day getting things done that don't get done during the week (running errands, catching up on laundry and dishes, checking emails, writing thank-you's etc.) Weekends tend to be low key and relaxing which is super needed by the time we get through our long week days. Sundays we go to church then come home and relax (I nap and Ryan plays video games :) Before we know it it's the start of another week.
Although Landon's pregnancy has not been typical I still experience some of the normal joys of expecting. Most nights I wake up at 3 in the morning like clockwork. I can't determine if it's due to the fact that Landon's awake and moving around so much, I have to use the bathroom, back pain, or I just need my nightly glass of orange juice, but I'm lucky if I can get back to sleep before my alarm goes off at 5. My belly is becoming large and I wonder how it could possible still have two months more of growing :o My back is always sore and I often wake up screaming from the pain of leg cramps. Even with all those things, I am enjoying being pregnant with my little prince and cherishing the moments (good and bad) that I have with him inside of me. Our weeks go by so quickly and I know that we do not have much time left before our lives change forever so although it is easy to want to skip to the next big things, I am learning to be content and hold onto each moment that I am in. Life is good, God is SO faithful!
Landon's Momma
Sunday, January 22, 2012
Heart Moms Unite!
When I got off work on Friday I was determined to do something I had been putting off for about a month. After our first meeting with Roxanne she connected me with a heart mom in Texas who has a six year old with Landon's diagnosis. I had been wanting to call her, but just never knew when a good time would be. I didn't want to interrupt her day and it is quite odd calling someone across the country, whom you've never met, to talk about personal issues. That night I was determined though so I called before I did anything else. She answered and I explained who I was and asked when a good time to talk would be. She told me that actually right now was perfect.
She asked me how I was doing and I told her that we're doing good, that's it's getting easier the more we find out and learn about everything. I could tell right away that she wasn't convinced and I realized that this is one person who truly understands and I can be completely honest with. I began to open up to her. She told me that the hardest times for her were when she was pregnant because once her son was born she had something to focus on. We shared our feelings of helplessness. She told me about their story. Her and her husband had been married five years when they found out at their first child's ultra sound that he had HRH/PA + IVS. She was very surprised that Landon is HRH (hypo plastic right heart) because this is so rare. She told me that it is very hard to find people with the same diagnosis as her son. She had to look out of her state, which is what I had to do also. We shared about how we both longed for information about our child's condition, but how scarce it is on the internet and anywhere to find.
Then I began asking questions, they just flowed. I wanted to know about her son, I wanted to know about his delivery, his surgeries, bringing him home, how he is doing now. I learned SO much from what she told me. Some things brought such encouragement and hope and others confirmed some of my fears. She told me that her son is now six years old, he has completed his three surgeries and from looking at him you would never be able to tell that he has a heart defect. He is active, plays soccer, and enjoys doing what every other six year old boy does. She told me all this and then added, but he isn't normal Natalie. You've got to understand that although his surgeries are done, he will always have HRH/ PA+IVS. It isn't something that can just be fixed, it is a part of who he is and will be who Landon is as well. She told me that although he plays soccer and is active, he can only run for short amounts of time. She said just like any child with special needs, like asthma or something, he must be carefully watched. When he overexerts himself his skin begins to turn a bluish color. This was very sad for me to hear because running is such a passion of mine. Knowing Landon will never be able to experience long distance running was disheartening.
We talked about our feelings of aloneness and how inconsiderate others can be with what they say. We agreed that others just try to relate to what we are going through, but they can't. We shared stories about hurtful things that have been said to us. It was so healing to be able to talk to someone about this and realize that I'm not silly for feeling hurt. She told me that people were quick to tell her how much doctors can do now days, she told me she would reply, yes, but they can't give my son a new heart. I was impressed by her heartfelt honesty. I have gotten to the point where I just agree with what others say and give the impression that I am fine because it is so much easier then people trying to make me feel better or knowing that I make them feel awkward because they don't know what to say to me. Seeing how she didn't stop sharing her true feelings with those around her made me realize that I often dismiss my feelings because I don't think anyone really wants to know or could possibly understand.
We shared in our feelings about our marriages and how they have been effected. She was shocked when I told her that Landon was our surprise, that me and Ryan just got married in June and found out we were expecting in August. She just sighed and said "oh hon, that's a lot." Her understanding brought much needed healing to my heart. She truly does know just how much we have gone through... so quickly. She shared about how hard it was on their marriage because they handled it so differently. She needed to talk about it and cry, but her husband didn't. She said he handled it "like a guy, and she handled it like a girl." I could really relate with that.
She told me that one of the most important things that I must do is grieve. She said I have to grieve the loss of normal, that it's ok to do that. It's ok to cry, be angry or depressed. I have to allow myself to go through the crazy emotions that rise up in me because I did lose something. She said there will continue to be disappointments to grieve. Life will not be like I imagined, but I will find that that's ok. Grieving is a process and I have to go through it so that I can embrace the life that lies ahead of me. I took this to heart.
We talked about her delivery and their time in the NICU. She told me that although my doctors will probably plan to induce me, like hers did, she advised me not to. She said that right now the MOST important thing for Landon is weight gain so it is crucial that he stay in me for as long as possible and gain as much as he can. Her son weighed 8 Ibs when he was born. She told me he was the biggest baby in the NICU, but he lost a whole pound the first week. It is very hard for babies with heart defects to gain weight once they are born. I asked her about breastfeeding because this is something I think is really important. She told me that this was also extremely important to her. She said that once her son was born they took him away and she wasn't able to hold him until days later. Hearing this broke my heart, that has been one of my biggest fears that they will just take Landon away from us right away. She told me it was devastating, but she just began to focus all of her efforts into pumping milk for him. She told me she thinks it was critical to his success that he received that nutrition and to her recovery that she had something to focus on. Another thing she warned me about that made me very sad was, she told me, that if delivery ends up being difficult in any way, meaning he is having a hard time coming out, they will do a C section. They will not want ANY extra stress on Landon's heart so if they see ANY warning signs they will do a C-section, they just will. This made me very sad because that is one thing that I really don't want to happen. I have been told that I can deliver vaginally, but what she said make sense, and happened in her case. She told me to prepare emotionally for the delivery. She said it took her a long time to get over her sadness about it not being what she imagined.
I asked her what it was like bringing her son home. She told me that he was only in the NICU for a week after his first surgery and they were able to leave the hospital with no equipment hooked up to him. She told me for that you have to be extremely careful with babies with hearts like Landon's because their immune systems are so fragile. They kept their son in what she called "lockdown" until his second surgery was completed at six months. They didn't introduce him to hardly any new people because of the likelihood of him catching something. She said after he recovered from his second surgery they threw a big party.
I asked if she has any other children and she joyfully told me that she has another son who is 8 months old. He has no heart defect. She told me she is just amazed at how easy he is. He is strong and healthy. They waited 5 years to have another child, partly because they wanted to focus all of their focus and attention on their first son and partly out of fear. She said something that I thought was really profound. She told me she had to reach the place where she felt they were strong enough to have another child with a heart defect before they started trying. She said that by the time they had their second child she would of been ok if they got that news again because, yes, it was hard, but they have seen the outcome. She told me that her son is so special and his experiences have made him who he is.
We ended our long conversation with agreements to keep in touch and share blogs with one another. I hung up the phone feeling so encouraged. I feel blessed to be a part of this strong group of woman around the world who call themselves heart moms. We don't need lengthy introductions because our hearts are already connected. It was healing for me to talk to someone who understands the fear and pain. I can only look and imagine the future, but she can look back. Look back over years of hard times and joyous times, she can recall the feelings and offer the wisdom she gained through it all. This is such a beautiful thing.
I want to share this poem that was written by a heart mom.
I could quote terminology
There's stats that I could give
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, aspirin, Captopril
It's wondering... Lord, what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks
It's feeding tubes, calories, needed weight gain
It's the drama of eating ~ and yes, it's insane!
It's the first time I held him (I'd waited so long)
It's knowing that I need to help him grow strong
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his stats as the feeding pump's beeping
It's knowing that there is just no time for sleeping
It's cats, x-rays, and boo boos to kiss
It's normalcy that sometimes I miss
It's asking, "Do his nails look blue?"
It's cringing inside at what he's been through.
It's dozens of calls to his pediatrician
(She knows me by name. I'm a mom on a mission)
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser
It's watching him sleeping ~ his breathing is steady
It's surgery day and I'll never be ready.
It's handing him over (I'm still not prepared)
It's knowing that his heart must be repaired
It's waiting for news on that long stressful day
It's praying, it's hoping that he'll be okay.
It's the wonderful friends with whom I've connected
It's the bond that we share, it was so unexpected
It's that long faded scar down my child's small chest
It's touching it gently and knowing we're blessed
It's watching him chasing a small butterfly
It's the moment I realized I've stopped asking, "Why?"
It's snowflakes that fall on a cold winter's day
(They remind me of those who aren't with us today)
It's a brave little boy who loved Thomas the Train
Or a special heart bear or a frog in the rain
It's the need to remember we are all in this plight
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow
It's finding the strength to have hope for tomorrow.
And no we'll never be the same
It's changed our family
this is what we face each day
This is a CHD
~Stephanie Husted, Heart Mom
Linda T Young, Hope for Families of Children with Congenital Heart Defects (Kindred Press, 2010)
She asked me how I was doing and I told her that we're doing good, that's it's getting easier the more we find out and learn about everything. I could tell right away that she wasn't convinced and I realized that this is one person who truly understands and I can be completely honest with. I began to open up to her. She told me that the hardest times for her were when she was pregnant because once her son was born she had something to focus on. We shared our feelings of helplessness. She told me about their story. Her and her husband had been married five years when they found out at their first child's ultra sound that he had HRH/PA + IVS. She was very surprised that Landon is HRH (hypo plastic right heart) because this is so rare. She told me that it is very hard to find people with the same diagnosis as her son. She had to look out of her state, which is what I had to do also. We shared about how we both longed for information about our child's condition, but how scarce it is on the internet and anywhere to find.
Then I began asking questions, they just flowed. I wanted to know about her son, I wanted to know about his delivery, his surgeries, bringing him home, how he is doing now. I learned SO much from what she told me. Some things brought such encouragement and hope and others confirmed some of my fears. She told me that her son is now six years old, he has completed his three surgeries and from looking at him you would never be able to tell that he has a heart defect. He is active, plays soccer, and enjoys doing what every other six year old boy does. She told me all this and then added, but he isn't normal Natalie. You've got to understand that although his surgeries are done, he will always have HRH/ PA+IVS. It isn't something that can just be fixed, it is a part of who he is and will be who Landon is as well. She told me that although he plays soccer and is active, he can only run for short amounts of time. She said just like any child with special needs, like asthma or something, he must be carefully watched. When he overexerts himself his skin begins to turn a bluish color. This was very sad for me to hear because running is such a passion of mine. Knowing Landon will never be able to experience long distance running was disheartening.
We talked about our feelings of aloneness and how inconsiderate others can be with what they say. We agreed that others just try to relate to what we are going through, but they can't. We shared stories about hurtful things that have been said to us. It was so healing to be able to talk to someone about this and realize that I'm not silly for feeling hurt. She told me that people were quick to tell her how much doctors can do now days, she told me she would reply, yes, but they can't give my son a new heart. I was impressed by her heartfelt honesty. I have gotten to the point where I just agree with what others say and give the impression that I am fine because it is so much easier then people trying to make me feel better or knowing that I make them feel awkward because they don't know what to say to me. Seeing how she didn't stop sharing her true feelings with those around her made me realize that I often dismiss my feelings because I don't think anyone really wants to know or could possibly understand.
We shared in our feelings about our marriages and how they have been effected. She was shocked when I told her that Landon was our surprise, that me and Ryan just got married in June and found out we were expecting in August. She just sighed and said "oh hon, that's a lot." Her understanding brought much needed healing to my heart. She truly does know just how much we have gone through... so quickly. She shared about how hard it was on their marriage because they handled it so differently. She needed to talk about it and cry, but her husband didn't. She said he handled it "like a guy, and she handled it like a girl." I could really relate with that.
She told me that one of the most important things that I must do is grieve. She said I have to grieve the loss of normal, that it's ok to do that. It's ok to cry, be angry or depressed. I have to allow myself to go through the crazy emotions that rise up in me because I did lose something. She said there will continue to be disappointments to grieve. Life will not be like I imagined, but I will find that that's ok. Grieving is a process and I have to go through it so that I can embrace the life that lies ahead of me. I took this to heart.
We talked about her delivery and their time in the NICU. She told me that although my doctors will probably plan to induce me, like hers did, she advised me not to. She said that right now the MOST important thing for Landon is weight gain so it is crucial that he stay in me for as long as possible and gain as much as he can. Her son weighed 8 Ibs when he was born. She told me he was the biggest baby in the NICU, but he lost a whole pound the first week. It is very hard for babies with heart defects to gain weight once they are born. I asked her about breastfeeding because this is something I think is really important. She told me that this was also extremely important to her. She said that once her son was born they took him away and she wasn't able to hold him until days later. Hearing this broke my heart, that has been one of my biggest fears that they will just take Landon away from us right away. She told me it was devastating, but she just began to focus all of her efforts into pumping milk for him. She told me she thinks it was critical to his success that he received that nutrition and to her recovery that she had something to focus on. Another thing she warned me about that made me very sad was, she told me, that if delivery ends up being difficult in any way, meaning he is having a hard time coming out, they will do a C section. They will not want ANY extra stress on Landon's heart so if they see ANY warning signs they will do a C-section, they just will. This made me very sad because that is one thing that I really don't want to happen. I have been told that I can deliver vaginally, but what she said make sense, and happened in her case. She told me to prepare emotionally for the delivery. She said it took her a long time to get over her sadness about it not being what she imagined.
I asked her what it was like bringing her son home. She told me that he was only in the NICU for a week after his first surgery and they were able to leave the hospital with no equipment hooked up to him. She told me for that you have to be extremely careful with babies with hearts like Landon's because their immune systems are so fragile. They kept their son in what she called "lockdown" until his second surgery was completed at six months. They didn't introduce him to hardly any new people because of the likelihood of him catching something. She said after he recovered from his second surgery they threw a big party.
I asked if she has any other children and she joyfully told me that she has another son who is 8 months old. He has no heart defect. She told me she is just amazed at how easy he is. He is strong and healthy. They waited 5 years to have another child, partly because they wanted to focus all of their focus and attention on their first son and partly out of fear. She said something that I thought was really profound. She told me she had to reach the place where she felt they were strong enough to have another child with a heart defect before they started trying. She said that by the time they had their second child she would of been ok if they got that news again because, yes, it was hard, but they have seen the outcome. She told me that her son is so special and his experiences have made him who he is.
We ended our long conversation with agreements to keep in touch and share blogs with one another. I hung up the phone feeling so encouraged. I feel blessed to be a part of this strong group of woman around the world who call themselves heart moms. We don't need lengthy introductions because our hearts are already connected. It was healing for me to talk to someone who understands the fear and pain. I can only look and imagine the future, but she can look back. Look back over years of hard times and joyous times, she can recall the feelings and offer the wisdom she gained through it all. This is such a beautiful thing.
I want to share this poem that was written by a heart mom.
I could quote terminology
There's stats that I could give
But I would rather share with you
A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix, aspirin, Captopril
It's wondering... Lord, what's your will?
It's monitors and oxygen tanks
It's a constant reminder to always give thanks
It's feeding tubes, calories, needed weight gain
It's the drama of eating ~ and yes, it's insane!
It's the first time I held him (I'd waited so long)
It's knowing that I need to help him grow strong
It's making a hospital home for awhile
It's seeing my reward in every smile.
It's checking his stats as the feeding pump's beeping
It's knowing that there is just no time for sleeping
It's cats, x-rays, and boo boos to kiss
It's normalcy that sometimes I miss
It's asking, "Do his nails look blue?"
It's cringing inside at what he's been through.
It's dozens of calls to his pediatrician
(She knows me by name. I'm a mom on a mission)
It's winter's homebound and hand sanitizer
It's knowing this journey has made me much wiser
It's watching him sleeping ~ his breathing is steady
It's surgery day and I'll never be ready.
It's handing him over (I'm still not prepared)
It's knowing that his heart must be repaired
It's waiting for news on that long stressful day
It's praying, it's hoping that he'll be okay.
It's the wonderful friends with whom I've connected
It's the bond that we share, it was so unexpected
It's that long faded scar down my child's small chest
It's touching it gently and knowing we're blessed
It's watching him chasing a small butterfly
It's the moment I realized I've stopped asking, "Why?"
It's snowflakes that fall on a cold winter's day
(They remind me of those who aren't with us today)
It's a brave little boy who loved Thomas the Train
Or a special heart bear or a frog in the rain
It's the need to remember we are all in this plight
It's their lives that remind us we still need to fight!
It's in pushing ahead amidst every sorrow
It's finding the strength to have hope for tomorrow.
And no we'll never be the same
It's changed our family
this is what we face each day
This is a CHD
~Stephanie Husted, Heart Mom
Linda T Young, Hope for Families of Children with Congenital Heart Defects (Kindred Press, 2010)
Saturday, January 21, 2012
Update on life in the Maxwell house
As usual much has happened since my last post so I will break this post up into the main events that have conspired since then.
Insurance
In my last post we had just discovered complications with Ryan's insurance company. Praise God I can tell you that we now (hopefully) have it all worked out, after many phone calls and much confusion I am now for sure covered under Ryan. It is illegal for a company with a group plan to not provide coverage to someone with a pre-existing condition. As I'm sure you understand, that was a HUGE relief to get figured out, but not easy and I'm sure it won't be the last of our insurance issues, but for now we have peace.
Landon's 28 week appointment
Landon had a big doctors appointment this last Thursday. We ( being me and Landon, my appointments are always while Ryan is working) first went to the hospital for a fetal echo (this was his third so far) It seems with every visit to Dr. Fernandez I have more confidence and ask more questions. I tell myself that asking questions is one of the greatest ways to gain strength through this. Knowledge is power, and I do feel like my understanding of our Landon's heart is growing. I did not ask to be a heart mom, but I am. I have always been destined to be one and everything I have experienced in my whole life has been preparing me to be one. I would not have chosen this title but it is now who I know I am and I will always be a heart mom. With this title carries great responsibility. It is my job to learn whatever I can about my child and questions are a great means by which this learning takes place. So I lay there and listen and at times interrupt to ask the Dr. what something is or if He can explain what he just told the nurse to me. I know now that the right side of Landon's heart is hypo plastic, which means it will not grow. He will essentially go through life with half a heart. This realization was very important for me to make. When it comes to Congenital heart defects the one most talked about and more common is Left Heart Hypoplastic Syndrome. This is a condition where the left side of the heart does not develop. I thought Landon had something completely different then this because most of the focus right now is on his pulmonary Artresia. I feel as though it may come across that I am babbling about medical terms and not making much sense to anyone else, but I think it is important for me to continue to document everything I learn. So as Dr. Fernandez explained to me the first surgery Landon will have (at six days old) is only a temporary fix. It will not cause the right side of his heart to develop. News like this is hard to hear, but I know that the more me and Ryan know the better we can prepare and take care of our little man. After the fetal echo was done the Dr. told me that everything looks good, but he has acquired more fluid around his heart. This is not good. Fluid around the heart (Paricardial Effusion) is what the doctors have been most worried about while Landon is in the womb. If it reaches too high of a level, much pressure is placed on the heart and he won't receive enough oxygen to grow... if this happens he may not make it to birth. It really freaked me out hearing this, but the Dr. assured me that it is now only at a level where they are concerned and will want to begin keeping a closer eye on it. He told me that he feels very confident that it will be ok because I will be going to Minneapolis in a couple weeks. He told me he will let Landon's specialists there know about the changes.
So after that I headed over to the clinic and had my ultra sound and met with my doctor. I was determined to ask them to get Landon's weight at this ultra sound since they didn't last week. So I told the young nurse who was doing the ultra sound that I want to know his weight and she told me that she was planning on getting it that day :) I LOVE being able to see Landon every week. I know this is a blessing most moms don't have while they are carrying their children. I watched with amazement as my little man was blinking his eyes. I had just read in a book that babies begin to do this at 28 weeks and I actually got to see him!! I was so excited!! He is so beautiful! When she had finished she told me that he weighs 2Ibs 8 oz. This thrilled me! He is growing :) When I met with my doctor she shared in my excitement. She told me that Landon is now in the 90th percentile for fetal growth at his age :) Our little guy is already breaking the norm and surprising the doctors. So although we received some worrisome news we also got some very very good news that day.
Second meeting with Roxanne
After my very long morning at the hospital and clinic I got to work around 12:30. I finished my shift and then hurried home because we were expecting Roxanne to come over to talk about some things and sign some papers. Another woman we had never met arrived first and Roxanne came shortly after. The new ladies name is Kristen and she explained that she works with the Department of Human Services with Developmental Disabilities. She discussed a lot of things with us. There are services that the government and the state fund that provide support for the parents and children with disabilities. This program that we are now in will set us up with a person who will handle Landon's case for the first three years of his life. After Landon is born we will meet with our case worker and write up an individualized family service plan for our family. We will together decide how often Landon will need to see his caregiver and what kind of services he will need. To our understanding we will be able to choose Landon's caregiver. Kristen told us that most care givers become a part of the family and most families are sad to have to say good bye to them once the three years are up. His caregiver will come to our home and the interactions will be done around our families normal routines and daily activities. Kristen also talked to us about Medicaid and the services they will provide for us. Medicaid is what will pay for Landon being in the Early Intervention program. It will also help with the cost of any direct therapy, equipment or other medical needs Landon may need. I can't tell you what a relief it is to know that Landon will have these special care opportunities and that we will be able to afford to give them to him. She also told us that they sometimes provide at home care for a child who is not medically able to be around other children so that the parent can go to work. This was very surprising to me. I don't know if I have written it on here before, but lots of kids with Congenital heart defects, especially ones as rare as Landon's, are instructed by their doctors to be kept out of day care or other places where they would be susceptible to sicknesses until after their three surgeries are completed, about the time they are three years of age. I had given up on our plan for me to return to working at the day care after a year, but if Landon was able to be cared for by someone we trust in the safety of our home, I think I might be ok with going back to work part time maybe a couple days a week. This realization was very exciting for me because I love my job and it opened up the idea to me that maybe I can get my internship accomplished and get my degree sooner then I thought. Things like this show me that we can still dream. Yes, our life will be different, it will be hard, but it will be beautiful. We signed a bunch of papers and then said our good-byes. After they left I just hugged Ryan. We both understood the relief that was flooding the others heart. God is so faithful, He has provided for us in such incredible ways. May His name be praised!!
There is much more to write, but I am tired and craving my Saturday nap :) Will write more at a later time. Thank you everyone for your continued thoughts and prayers. Thank you for not forgetting about us. Your words of encouragement are priceless. It may seem that we are adjusting and doing just fine... and we are... but I will not tell you for a second that this is easy or ideal. We are still completely reliant on prayer. We are doing everything we can but nothing takes away our helplessness against this. Our hope and every ounce of our strength is from God.
Landon's proud Momma
Insurance
In my last post we had just discovered complications with Ryan's insurance company. Praise God I can tell you that we now (hopefully) have it all worked out, after many phone calls and much confusion I am now for sure covered under Ryan. It is illegal for a company with a group plan to not provide coverage to someone with a pre-existing condition. As I'm sure you understand, that was a HUGE relief to get figured out, but not easy and I'm sure it won't be the last of our insurance issues, but for now we have peace.
Landon's 28 week appointment
Landon had a big doctors appointment this last Thursday. We ( being me and Landon, my appointments are always while Ryan is working) first went to the hospital for a fetal echo (this was his third so far) It seems with every visit to Dr. Fernandez I have more confidence and ask more questions. I tell myself that asking questions is one of the greatest ways to gain strength through this. Knowledge is power, and I do feel like my understanding of our Landon's heart is growing. I did not ask to be a heart mom, but I am. I have always been destined to be one and everything I have experienced in my whole life has been preparing me to be one. I would not have chosen this title but it is now who I know I am and I will always be a heart mom. With this title carries great responsibility. It is my job to learn whatever I can about my child and questions are a great means by which this learning takes place. So I lay there and listen and at times interrupt to ask the Dr. what something is or if He can explain what he just told the nurse to me. I know now that the right side of Landon's heart is hypo plastic, which means it will not grow. He will essentially go through life with half a heart. This realization was very important for me to make. When it comes to Congenital heart defects the one most talked about and more common is Left Heart Hypoplastic Syndrome. This is a condition where the left side of the heart does not develop. I thought Landon had something completely different then this because most of the focus right now is on his pulmonary Artresia. I feel as though it may come across that I am babbling about medical terms and not making much sense to anyone else, but I think it is important for me to continue to document everything I learn. So as Dr. Fernandez explained to me the first surgery Landon will have (at six days old) is only a temporary fix. It will not cause the right side of his heart to develop. News like this is hard to hear, but I know that the more me and Ryan know the better we can prepare and take care of our little man. After the fetal echo was done the Dr. told me that everything looks good, but he has acquired more fluid around his heart. This is not good. Fluid around the heart (Paricardial Effusion) is what the doctors have been most worried about while Landon is in the womb. If it reaches too high of a level, much pressure is placed on the heart and he won't receive enough oxygen to grow... if this happens he may not make it to birth. It really freaked me out hearing this, but the Dr. assured me that it is now only at a level where they are concerned and will want to begin keeping a closer eye on it. He told me that he feels very confident that it will be ok because I will be going to Minneapolis in a couple weeks. He told me he will let Landon's specialists there know about the changes.
So after that I headed over to the clinic and had my ultra sound and met with my doctor. I was determined to ask them to get Landon's weight at this ultra sound since they didn't last week. So I told the young nurse who was doing the ultra sound that I want to know his weight and she told me that she was planning on getting it that day :) I LOVE being able to see Landon every week. I know this is a blessing most moms don't have while they are carrying their children. I watched with amazement as my little man was blinking his eyes. I had just read in a book that babies begin to do this at 28 weeks and I actually got to see him!! I was so excited!! He is so beautiful! When she had finished she told me that he weighs 2Ibs 8 oz. This thrilled me! He is growing :) When I met with my doctor she shared in my excitement. She told me that Landon is now in the 90th percentile for fetal growth at his age :) Our little guy is already breaking the norm and surprising the doctors. So although we received some worrisome news we also got some very very good news that day.
Second meeting with Roxanne
After my very long morning at the hospital and clinic I got to work around 12:30. I finished my shift and then hurried home because we were expecting Roxanne to come over to talk about some things and sign some papers. Another woman we had never met arrived first and Roxanne came shortly after. The new ladies name is Kristen and she explained that she works with the Department of Human Services with Developmental Disabilities. She discussed a lot of things with us. There are services that the government and the state fund that provide support for the parents and children with disabilities. This program that we are now in will set us up with a person who will handle Landon's case for the first three years of his life. After Landon is born we will meet with our case worker and write up an individualized family service plan for our family. We will together decide how often Landon will need to see his caregiver and what kind of services he will need. To our understanding we will be able to choose Landon's caregiver. Kristen told us that most care givers become a part of the family and most families are sad to have to say good bye to them once the three years are up. His caregiver will come to our home and the interactions will be done around our families normal routines and daily activities. Kristen also talked to us about Medicaid and the services they will provide for us. Medicaid is what will pay for Landon being in the Early Intervention program. It will also help with the cost of any direct therapy, equipment or other medical needs Landon may need. I can't tell you what a relief it is to know that Landon will have these special care opportunities and that we will be able to afford to give them to him. She also told us that they sometimes provide at home care for a child who is not medically able to be around other children so that the parent can go to work. This was very surprising to me. I don't know if I have written it on here before, but lots of kids with Congenital heart defects, especially ones as rare as Landon's, are instructed by their doctors to be kept out of day care or other places where they would be susceptible to sicknesses until after their three surgeries are completed, about the time they are three years of age. I had given up on our plan for me to return to working at the day care after a year, but if Landon was able to be cared for by someone we trust in the safety of our home, I think I might be ok with going back to work part time maybe a couple days a week. This realization was very exciting for me because I love my job and it opened up the idea to me that maybe I can get my internship accomplished and get my degree sooner then I thought. Things like this show me that we can still dream. Yes, our life will be different, it will be hard, but it will be beautiful. We signed a bunch of papers and then said our good-byes. After they left I just hugged Ryan. We both understood the relief that was flooding the others heart. God is so faithful, He has provided for us in such incredible ways. May His name be praised!!
There is much more to write, but I am tired and craving my Saturday nap :) Will write more at a later time. Thank you everyone for your continued thoughts and prayers. Thank you for not forgetting about us. Your words of encouragement are priceless. It may seem that we are adjusting and doing just fine... and we are... but I will not tell you for a second that this is easy or ideal. We are still completely reliant on prayer. We are doing everything we can but nothing takes away our helplessness against this. Our hope and every ounce of our strength is from God.
Landon's proud Momma
Thursday, January 5, 2012
Whata day!!
This is proving to be another week that seems like it's lasted a month, just one thing after another. Landon had a check up on Tuesday. This was just a normal check-up, I got to hear his heart beat, had some tests done and then talked to my doctor. It was so good to see her again. I hadn't seen her since we found out about Landon's heart. She told me that everything looks good, but she wanted to call Minneapolis and check with Dr. Shaunti about what she wants them to be doing while I'm here in Bismarck.
Yesterday (Wednesday) she left a voicemail on my phone saying that she talked to Dr. Shaunti and they want me back in this week for a fetal echo. So today I got a call at work saying that I needed to go to the hospital for a fetal echo and then another call a little later saying I also need to come to the clinic for a biophysical and an ultra sound today. It is very overwhelming to get calls like this that totally disrupt my day. I feel awful about telling my boss that I need to leave, without being able to give her any time to find someone to cover for me.
I got to the hospital around 11:30 and had an ultra sound done, then I went and got hooked up to a machine that monitors Landon's heartbeat for about an hour. It was fun to be able to hear him moving around. I can feel him so good now so it always made me smile when he would kick the monitors and make a really loud noise (like when you tap a stethoscope hard with your finger). My doctor and nurse would pop in the room every now and then to check the papers that were spilling out of the machine, but for the most part it was just me and him. Just when I thought I was done and going to meet my doctor to talk about everything the nurse came back in and told me I had to go back to ultra sound so they can get Landon's weight (I wondered why they didn't do this the first time). So I went back for an ultra sound and learned that Landon is now exactly 2lbs. Then I went back and talked with my doctor. She is very pleased with how everything is looking. She said besides the little problem with his heart he is a perfect baby. She was really happy with his weight, he's in the 78th percentile. I'm not sure what that means but according to her its really good. She said he's not a puny baby which is good because a puny baby would have a much harder time surviving than a big strong baby. This made me super happy :) We have been praying for two main things. #1 that God would heal Landon and open the valve in his heart right now so he won't need surgery or anything. But if God chooses not to heal Landon in that way then we are praying that he helps him to grow and become as strong as he can be so that he can fight through the surgeries and everything he will need in the future. Hearing that Landon is growing and strong was such an answer to prayer!
After talking with my doctor I brought a paper back to the front desk that showed what weeks I needed to schedule appointments. I will now be going in weekly to have the same things done (biophysical and ultrasound). Trying to explain to the receptionist that I needed to schedule the next 8 weeks in appointments was not easy, then I told her that I'm supposed to have a weekly ultra sound and she got really confused. She told me she would talk to my nurse and send me the list of appointments. Little things like that make me realize that this isn't a "normal" pregnancy. In a way this makes me sad, but with every strange confused glance I get from other people who don't understand our story I know that I'm fighting for my son. We are his advocates, we have to know what he needs and make sure that he gets it.
By the time I got done at the front desk I had just enough time to drive across the street to the hospital, get checked in, and go up to the heart and lung center for my fetal echo. As I sat in the waiting room I thought of how I felt the last time I was there. It seems like an eternity ago but tomorrow will be just one month since we found out about Landon's heart. I know that I'm not the same person I was on that day. So much has happened so fast and me and Ryan have been forced to grow in so many ways. I wasn't a wreck laying on the bed this time. I am not surprised when I hear them talk about his heart, I just listen and sometimes ask questions. At the end Dr. Fernandez told me that there's no retaining of fluid (that is something they worry about in cases like Landon's) and that there has been no changes for the worse so that is really good news.
By the time I left the hospital it was 3:30. I failed to mention that between everything I had done, there is a longer period of waiting. I think that is what makes these appointments so exhausting. The waiting...then going to a room and waiting for someone... then going back to the waiting room... then going to a different waiting room... then going into a room and waiting for the doctor, you get the picture... exhausting. Since it wasn't yet 4 I decided to go back to work for the last hour and a half of my shift. The kids were all so glad to see me and they liked being able to see a picture of the baby in teachers belly :)
So that was my day... or so I thought. Me and Ryan just got back from supper and we went to get the mail. I like to take the things that look like letters and leave him with the bills. He opened the first one and on the way up the stairs I heard him sigh and say uh oh. I figured it was just a bigger bill then expected and I opened up one of the letters in my hand as we reached our apartment door. I was shocked to find a check from our church and a note saying they were thinking of us with their Christmas offering and praying for our family. My utter joy was quickly stolen though as Ryan showed me what he was holding. It was a letter from his insurance company explaining that I can not be covered under them because I have, what is considered, a "pre-existing condition." It was like someone just slapped me in the face. I took it from Ryan and read it myself, which only made me more sick. "How can they do that?" Then it's like the strong me that had been occupying my body all day just decided to leave. In that moment everything just became SO overwhelming. The whole page of scheduled doctors appointments hanging our fridge now terrified me.
Ryan told me not to worry that it will be ok. The weird thing is I know he's right. Just the fact that we opened a check from our church the same time we got this horrible news is evidence that God is here with us and He will take care of us. I wish I could say that realizing that filled me with peace and joy but... it didn't. Truth is, I'm still scared, overwhelmed, and exhausted from everything. Our new motto is "one day at a time" but sometimes it seems like it should be "one hour at a time." There is just so much to take in and digest and it's like right when you feel like your doing a good job at learning to cope BOOM something gets thrown at you again.
Ryan never lets me worry about our finances. He tells me that my job is to take care of Landon and his job is to take care of both of us. He is so strong and amazing, but I know this isn't as easy for him as he wants me to think. His trust and confidence in God never fails to make me feel safe and secure though.
So as of now our plans are to try to get me back onto my parents insurance which is what I was under until I started working full time. With the weekly doctors visits I will no longer be full time so hopefully that won't be a problem. Plan B is to let Roxanne (from early intervention) know about it. When we talked with her last, she told us that this could happen and if it does to contact her right away.
So that pretty much sums up where we're at right now. How I wish today was Friday because right now I have no desire to leave my bed. In the midst of all the chaos we remind ourselves that God has never failed us and our hope continues to be rooted in Him alone.
Landon's Momma
Yesterday (Wednesday) she left a voicemail on my phone saying that she talked to Dr. Shaunti and they want me back in this week for a fetal echo. So today I got a call at work saying that I needed to go to the hospital for a fetal echo and then another call a little later saying I also need to come to the clinic for a biophysical and an ultra sound today. It is very overwhelming to get calls like this that totally disrupt my day. I feel awful about telling my boss that I need to leave, without being able to give her any time to find someone to cover for me.
I got to the hospital around 11:30 and had an ultra sound done, then I went and got hooked up to a machine that monitors Landon's heartbeat for about an hour. It was fun to be able to hear him moving around. I can feel him so good now so it always made me smile when he would kick the monitors and make a really loud noise (like when you tap a stethoscope hard with your finger). My doctor and nurse would pop in the room every now and then to check the papers that were spilling out of the machine, but for the most part it was just me and him. Just when I thought I was done and going to meet my doctor to talk about everything the nurse came back in and told me I had to go back to ultra sound so they can get Landon's weight (I wondered why they didn't do this the first time). So I went back for an ultra sound and learned that Landon is now exactly 2lbs. Then I went back and talked with my doctor. She is very pleased with how everything is looking. She said besides the little problem with his heart he is a perfect baby. She was really happy with his weight, he's in the 78th percentile. I'm not sure what that means but according to her its really good. She said he's not a puny baby which is good because a puny baby would have a much harder time surviving than a big strong baby. This made me super happy :) We have been praying for two main things. #1 that God would heal Landon and open the valve in his heart right now so he won't need surgery or anything. But if God chooses not to heal Landon in that way then we are praying that he helps him to grow and become as strong as he can be so that he can fight through the surgeries and everything he will need in the future. Hearing that Landon is growing and strong was such an answer to prayer!
After talking with my doctor I brought a paper back to the front desk that showed what weeks I needed to schedule appointments. I will now be going in weekly to have the same things done (biophysical and ultrasound). Trying to explain to the receptionist that I needed to schedule the next 8 weeks in appointments was not easy, then I told her that I'm supposed to have a weekly ultra sound and she got really confused. She told me she would talk to my nurse and send me the list of appointments. Little things like that make me realize that this isn't a "normal" pregnancy. In a way this makes me sad, but with every strange confused glance I get from other people who don't understand our story I know that I'm fighting for my son. We are his advocates, we have to know what he needs and make sure that he gets it.
By the time I got done at the front desk I had just enough time to drive across the street to the hospital, get checked in, and go up to the heart and lung center for my fetal echo. As I sat in the waiting room I thought of how I felt the last time I was there. It seems like an eternity ago but tomorrow will be just one month since we found out about Landon's heart. I know that I'm not the same person I was on that day. So much has happened so fast and me and Ryan have been forced to grow in so many ways. I wasn't a wreck laying on the bed this time. I am not surprised when I hear them talk about his heart, I just listen and sometimes ask questions. At the end Dr. Fernandez told me that there's no retaining of fluid (that is something they worry about in cases like Landon's) and that there has been no changes for the worse so that is really good news.
By the time I left the hospital it was 3:30. I failed to mention that between everything I had done, there is a longer period of waiting. I think that is what makes these appointments so exhausting. The waiting...then going to a room and waiting for someone... then going back to the waiting room... then going to a different waiting room... then going into a room and waiting for the doctor, you get the picture... exhausting. Since it wasn't yet 4 I decided to go back to work for the last hour and a half of my shift. The kids were all so glad to see me and they liked being able to see a picture of the baby in teachers belly :)
So that was my day... or so I thought. Me and Ryan just got back from supper and we went to get the mail. I like to take the things that look like letters and leave him with the bills. He opened the first one and on the way up the stairs I heard him sigh and say uh oh. I figured it was just a bigger bill then expected and I opened up one of the letters in my hand as we reached our apartment door. I was shocked to find a check from our church and a note saying they were thinking of us with their Christmas offering and praying for our family. My utter joy was quickly stolen though as Ryan showed me what he was holding. It was a letter from his insurance company explaining that I can not be covered under them because I have, what is considered, a "pre-existing condition." It was like someone just slapped me in the face. I took it from Ryan and read it myself, which only made me more sick. "How can they do that?" Then it's like the strong me that had been occupying my body all day just decided to leave. In that moment everything just became SO overwhelming. The whole page of scheduled doctors appointments hanging our fridge now terrified me.
Ryan told me not to worry that it will be ok. The weird thing is I know he's right. Just the fact that we opened a check from our church the same time we got this horrible news is evidence that God is here with us and He will take care of us. I wish I could say that realizing that filled me with peace and joy but... it didn't. Truth is, I'm still scared, overwhelmed, and exhausted from everything. Our new motto is "one day at a time" but sometimes it seems like it should be "one hour at a time." There is just so much to take in and digest and it's like right when you feel like your doing a good job at learning to cope BOOM something gets thrown at you again.
Ryan never lets me worry about our finances. He tells me that my job is to take care of Landon and his job is to take care of both of us. He is so strong and amazing, but I know this isn't as easy for him as he wants me to think. His trust and confidence in God never fails to make me feel safe and secure though.
So as of now our plans are to try to get me back onto my parents insurance which is what I was under until I started working full time. With the weekly doctors visits I will no longer be full time so hopefully that won't be a problem. Plan B is to let Roxanne (from early intervention) know about it. When we talked with her last, she told us that this could happen and if it does to contact her right away.
So that pretty much sums up where we're at right now. How I wish today was Friday because right now I have no desire to leave my bed. In the midst of all the chaos we remind ourselves that God has never failed us and our hope continues to be rooted in Him alone.
Landon's Momma
Wednesday, January 4, 2012
Nightmare
It's only 1:46 in the morning and here I sit with a cup of chai and my laptop in front of me, hoping that if I get this written down maybe the emotions and fear I have right now will soften. I can't remember the last nightmare I had before tonight, but I can tell you that I will never forget this one. The pictures are still so vivid in my mind and the emotions so real. One second I remember I was having some stupid dream that made absolutely no sense and then the next I was in an operating room. It was clear to me in the dream that I had just had Landon and I could see him over on the operating table. He was so small, but so beautiful. I remember being worried that I couldn't see him breathing, but I told myself that, that is probably normal, that he's probably fine. I just watched him with all of the doctors around him. I'm not really sure now what they were doing, but in the dream I thought they were fixing him. Then my whole demenor changed as one of the doctors said, "this is what I feared with him." Then everything went chaotic and then I just knew, I knew he was gone. I became hysterical in the dream and just began screaming at God for taking my baby.
The next thing I knew Ryan was shaking me and asking me what was wrong. I just lost it, I couldn't stop sobbing. I realized soon after I awoke that Landon is still fine. He is still safe inside of me, but I couldn't shake the terror of how real the dream was for me. All I could get out in between sobs was "He died Ryan." Ryan held me and told me that no he's fine and it was only a dream, but this didn't comfort me. I remember thinking why did we ever give God permission to do whatever he wants with Landon. I actually had the thought, maybe its not too late maybe I can take it back. I know that it doesn't work like that and I was so surprised at how I was reacting.
We've been telling ourselves and others that Landon belongs to God and we trust Him, but tonight God faced me with my deepest fear, the fear I haven't been allowing myself to recognize. I truly believe that Landon is going to be ok, but tonight a whole door of "what ifs" flooded my soul. Could I really go on if God takes Landon to be with Him? Could my faith survive that? I just read in Psalm 118:8 yesterday that "it is better to take refuge in the Lord than to trust in people." Everyone keeps telling me how fantastic doctors are and how much they can do now days, but the truth is that isn't much of a comfort to me. Landon will have great doctors, the best that he could have, but above all he is in Gods hands. We have told God that Landon is His and given him permission to do whatever He chooses with the life of our baby boy. I never realized until tonight how terrifying that is to me. In the dream I did not get angry at the doctors I got angry at God.
I can't tell you right now if I could survive my nightmare if it comes true, but I pray that even in the darkest night, even through the "what ifs" I bring my anger, my fear, and my questions to God. So as I sit in our decorated nursery, with tears still falling down my face, listening to the song playing on my iTunes, i'm choosing to run to God.
You are peace, You are peace
When my fear is crippling
You are true, You are true
Even in my wandering
You are joy, You are joy
You're the reason that I sing
You are life, You are life,
In You death has lost its sting
You are more, You are more
Than my words will ever say
You are Lord, You are Lord
All creation will proclaim
You are here, You are here
In Your presence I'm made whole
You are God, You are God
Of all else I'm letting go
Oh, I’m running to Your arms,
I’m running to Your arms
The riches of Your love
Will always be enough
Nothing compares to Your embrace
Light of the world forever reign
Forever Reign -Hillsong
The next thing I knew Ryan was shaking me and asking me what was wrong. I just lost it, I couldn't stop sobbing. I realized soon after I awoke that Landon is still fine. He is still safe inside of me, but I couldn't shake the terror of how real the dream was for me. All I could get out in between sobs was "He died Ryan." Ryan held me and told me that no he's fine and it was only a dream, but this didn't comfort me. I remember thinking why did we ever give God permission to do whatever he wants with Landon. I actually had the thought, maybe its not too late maybe I can take it back. I know that it doesn't work like that and I was so surprised at how I was reacting.
We've been telling ourselves and others that Landon belongs to God and we trust Him, but tonight God faced me with my deepest fear, the fear I haven't been allowing myself to recognize. I truly believe that Landon is going to be ok, but tonight a whole door of "what ifs" flooded my soul. Could I really go on if God takes Landon to be with Him? Could my faith survive that? I just read in Psalm 118:8 yesterday that "it is better to take refuge in the Lord than to trust in people." Everyone keeps telling me how fantastic doctors are and how much they can do now days, but the truth is that isn't much of a comfort to me. Landon will have great doctors, the best that he could have, but above all he is in Gods hands. We have told God that Landon is His and given him permission to do whatever He chooses with the life of our baby boy. I never realized until tonight how terrifying that is to me. In the dream I did not get angry at the doctors I got angry at God.
I can't tell you right now if I could survive my nightmare if it comes true, but I pray that even in the darkest night, even through the "what ifs" I bring my anger, my fear, and my questions to God. So as I sit in our decorated nursery, with tears still falling down my face, listening to the song playing on my iTunes, i'm choosing to run to God.
You are peace, You are peace
When my fear is crippling
You are true, You are true
Even in my wandering
You are joy, You are joy
You're the reason that I sing
You are life, You are life,
In You death has lost its sting
You are more, You are more
Than my words will ever say
You are Lord, You are Lord
All creation will proclaim
You are here, You are here
In Your presence I'm made whole
You are God, You are God
Of all else I'm letting go
Oh, I’m running to Your arms,
I’m running to Your arms
The riches of Your love
Will always be enough
Nothing compares to Your embrace
Light of the world forever reign
Forever Reign -Hillsong
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