Oh how time is flyING!!

I cannot believe that February is almost gone! Landon continues to have ultra sounds every week and gets measured every other week. Last thursday he was weighing in at 3Ib 13oz. My doctor here in Bismarck is extremely happy with how he is doing in the womb. She said there is no reason she can see why he won't go full term and be a healthy size. This is such an answer to prayer because once Landon is born it will be a fight for every once of weight gain. He will have an IV and a feeding tube placed in him right away, babies with heart defects often experience stomach issues as well. hopefully this will not be the case with him, but it just makes every once he gains while still inside of me that much more important. He remains extremely active and likes to put on shows for those around, as was the case when we were at our friends house last weekend. They were amazed that they could actually see him pounding on my stomach. It's almost like he's saying let me out of here ;) He has quite the little photo album already consisting of 23 ultrasound pictures so far. I have become spoiled and always feel as though the ultra sound tech could have gotten better pictures haha I can't wait for the day when I won't have to rely on someone else to capture his beautiful face. He is so loved and adored by me and his daddy :)

Me and Ryan shared the best Valentines Day, our first as a married couple and our last without kids :) He is my best friend and I can't imagine going through life without him. We have already been through so much in our first year of marriage, but I can honestly say that it has only made us love and appreciate each other so much more. Marriage is a remarkable thing and I am understanding more and more why God compares our relationship with Him to the relationship between a husband and wife. There is nothing on Earth that compares, nothing that satan does not love to destroy more, and nothing is more powerful and more of a testimony of God's unconditional love than a marriage that is functioning the way it was designed to. We know that we have hard times ahead, but we know that no matter how bad things seem we are in this together and we must NEVER stop fighting for our marriage.

Upcoming News:

Ryan returns from Winter Retreat tonight :D

Ryan left Sunday after church with a handful of other youth leaders and 60 teens to go snowboarding at Terry Peak located in the Black Hills of South Dakota. He did not even tell me that he was asked to go because he knew it would mean leaving me home alone. I brought it up one day after church last month and told him he should go. He was surprised and super excited that I was ok with it.  I know how much he loves snowboarding and he hasn't been able to go at all this winter because we have been saving every penny for Landon. I know God will use this trip in his life. I know it was so needed, Ryan sacrifices so much for me and Landon and he never once has complained. He is amazing and I have MISSED him like CRAZY!!! These short two days were a glimpse into how hard it will be to be apart for the last month of my pregnancy.

Baby showers


This Friday after work we will be driving to Warroad! The Woodland ladies have been so kind to throw us a baby shower on Saturday. I cannot wait to see family! We still consider Woodland our family and they have been such a blessing to us since being married and especially surrounded us with love and prayers since finding out about Landon. I am looking forward to sharing in the celebration and anticipation of his birth with them. It will be a very quick trip, but we figured it will be worth it since we won't be traveling with Landon until he has recovered from his second surgery.

I was also so touched when my boss at the daycare asked if she could throw me a shower. It takes a while to start to feel at home in a new place and get connected in a church. New Song has been nothing but welcoming to me and Ryan and we are truly starting to feel at home. I am looking forward to my shower there on the 3rd of March. It will be a great way to spend my last weekend at home before leaving for Minneapolis. Krista (my boss) even personalized the invites with a jungle monkey theme... so CUTE :)
I just feel so blessed and loved by the people God has placed in our lives and I am overwhelmed by how much people care about and love Landon already. He truly is such a blessed child and we are so blessed to be his parents!

Departure Day


We are planning on leaving for Minneapolis on the 10th of March. We will both be driving vehicles down so that I will have my car while there. It is extremely overwhelming when I realize that I will not be back home before Landon is born. It's overwhelming knowing we will be married long distance for a while. I never dreamed when we were dating long distance that we would ever have to do that again, especially in our first year of marriage. Everything is going so fast and it is all leading up to the day when Landon will enter this world. We cannot wait to meet our little warrior!

Thank you for continuing to keep our family in your prayers. We love and thank God for you daily.

Expecting Holland

This is something I found on another heart moms blog.

WELCOME TO HOLLAND by Emily Perl Kingsley. c1987 by Emily Perl Kingsley. All rights reserved I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


I can relate so well with this and it hits to the core of my heart. For as long as I can remember I have dreamed of being a mother. I remember as a child I would never play "mommy" with my dolls, they were always my baby brothers or sisters. I think even way back then I knew that nothing could ever compare to the real thing and that was all I ever wanted... the real thing. As I grew up and started babysitting other peoples kids I would always feel sad when they had to leave me. Children have always brought me so much joy and I truly feel my heart is most alive when I am around them. I always dreamed and imagined the day when I would carry my own child in my body and hold that child in my arms. When you get married this dream takes on new meaning and purpose because it is now a dream you can share with the one you love the most. 


Although having a child was what I always longed for the day me and Ryan found out we were expecting was not the happiest day I can remember, in fact I was terrified. I remember crying and telling him over and over again that this was going to change everything (I had no idea). We were not planning on taking our trip to Italy until we could afford it and were more situated with our new life together. It took a while, but I soon began to dream and long for Italy. Joy filled me because it was now close enough for me to grasp. We loved sharing with everyone our exciting news about our upcoming trip and everyone was SO excited for us :)


Then the day came... the day we were told we could not go to Italy, but instead were headed for Holland. My heart broke that day, my dreams shattered. I had never even heard of Holland! Who goes to Holland? I've read the books I know the chances of someone not going to Italy are so great. This had to be a mistake, why Holland, why us? What did I do wrong? Why don't we deserve to go to Italy like everyone else? Why would God place Italy on my heart and then not allow me to be able to go there?


What I didn't have the strength to understand that day was that I was never meant to go to Italy (at least not yet) I was always supposed to go to Holland and although I don't know how, God has always been preparing me for Holland. Holland is where me and Ryan are supposed to be. It is still terribly hard when I see other pregnant woman and know that they are going to Italy. I'd be lying if I said that I'm not jealous of them, but would I trade in my ticket... no. I know that life in Holland is hard and scary, but the more I learn about it the more I am realizing that Holland holds blessings that no other place on Earth does. 


Landon's Momma

Last week

I'm finally going to attempt to describe how last week went for us. I was sick during the weekend and still not feeling good when Monday arrived so I took the day off of work. Besides getting packed for our trip all I did was sleep until Ryan got home. We quickly grabbed our stuff and were on our way. The trip went fast, we picked up my mom who was in Fargo because my grandma just had back surgery the day before. We made it to our hotel around ten, Ryan's parents were already there. It was so nice to be with family again. I still wasn't feeling well and I was nervous about what the next few days would be like. I really had no clue what kind of appointments I had. I knew I would have an ultra sound, fetal echo, and I was told we would be taken on a tour but I didn't know which days we would be doing what or when.

The next day we met my aunt at the hospital and headed up to the maternal fetal medicine floor. Soon after we were introduced to Dr. Thomas and led into a room with a large table in it. We all sat down and the Dr. began talking to us. To my understanding he is in charge of the neonatal section of the hospital or something like that. He explained to us what Landon will go through after he is born. We asked some questions and then we talked a little bit with the social worker who was there and another woman who kind of oversees cases like Landon's. They were all very friendly and easy to talk to.
That was all we had the first day, it went pretty fast and I was glad because it was later in the day and I was tired from not sleeping well the night before. It was refreshing to be somewhere again where Landon isn't talked about like he is abnormal. These people deal with different everyday so it is their normal, just as it has become ours.

The next day our appointment was in the morning. I woke up at 2:30 and couldn't get back to sleep because my sinuses were so out of whack and I couldn't breath well. I was very excited to have an ultra sound done and hopefully get another 3D picture to take home. I was also hoping that our family would be allowed to come to the ultra sound with us. They said that would be fine so Ryan, our moms, and my aunt all crowded into the ultra sound room. It was really special getting to share that moment with all of them. We were told that Landon is now up to 3Ib 5oz. I almost couldn't believe it! He is growing so fast! It is ironic because the doctors always tell me that I am very small and here I have this big baby boy growing like crazy inside of me :) That made me very happy and I was even more thrilled when she turned on the 3D and tried to get some good pictures for us. It is so amazing to be able to see his face. He is so beautiful and in one of the pics we got he looks like he's smiling :)

After the ultra sound I had a fetal echo and then we were led into a room to talk with Dr. Shaunti again, this time with our family. She introduced herself to everyone and then dove right in, she began with the basics about what she does and explained Landon's condition, but I could tell this time was different then the last time we talked with her. She was going into more detail and giving it to us more straight then last time. I know this is because it would of all been to much for us to handle at our first visit, we were still processing the news, but now we are more prepared and we want the details. I can't begin to explain everything she talked to us about because it is so much and so complicated, but she explained to us that the right side of Landon's heart is hardly developed at all. She told us that after he is born we will get to hold him a couple seconds and then he will be taken to the NICU. This was sad for me to hear because the day before the Dr. told me I would have a couple min. with Landon, but like I said Dr. Shaunti was giving it to us straight and I appreciated that. She told us that Ryan will be able to go with Landon to the NICU which we were both glad about. Once in the NICU Landon will have a feeding tube and an IV placed in him. He will have several tests run on him so that they can look at his heart more closely. The big thing is seeing how his coronary arteries have been affected. If they have been then there will have to be more measures taken then just the one surgery to fix that. They will for sure be performing open heart surgery on him the first week to open the valve so that blood can get to his lungs. She explained to us that this is just a temporary fix. They have to do things gradually because the lungs cannot handle a ton of change at one time. His second surgery will be when he is 3 to 4 months old. She told us how important it is that he not be introduced to new people before his second surgery because he is so susceptible to sickness. She told us that a small cold is nothing to fool around with for babies with his condition. If we wait a day to take him in to the hospital it could be too late for him. It sounds like if a situation does arise where he has some complications or gets sick we will need to bring him back to Minneapolis right away. Bismarck will be fine for his normal checkups and things, but he may still need special care that can't be found in a normal hospital. She told me again that they want me to get to 39 weeks in my pregnancy and then they will want to induce me because it could be dangerous for him to be in the womb after that. She told me that after 36 weeks they will want to keep a very close eye on me. If there is news of weather complications they will want me to come into the hospital right away because an ambulance can get through anything except bad weather. She explained to us how important it is for Landon to be born in a hospital that has the medicine (prostaglandin) that he will need to keep the valve open in his heart. Without this medicine he won't be able to breath and at the least will suffer brain damage. She told us that helicopters take at least 2 hours to get off the ground and that's too long for a baby with his condition to wait. She told us there are only a few hospitals in the country that carry this medicine because it costs 2,000 a bottle and just expires in most hospitals because the situations where it is needed are so rare. She told us that out of all of the heart defects that they treat on a day to day basis they only have about 2 a year with exactly what Landon has. That really shocked me, because I know that people fly in from all over the country to get treated there. We are very fortunate that we are so close to a hospital that can care for Landon, even though 6 hour drives don't seem overly close. We talked a little more and asked some more questions. I was so impressed by her willingness to listen and answer all of our questions. Her beeper went off once and I was expecting her to tell us she had to be somewhere else, but she just stayed and kept talking with us. Knowing that she really cares makes it a lot easier to hear what she tells us. These aren't like other doctor appointments I've had where you wait for 45 min and maybe get to see your doctor for 15. They know that you can't rush through situations like ours, we need the extra time. That's why it seems like they tell us the same things over and over again, because they know news like what we hear takes time to process and fully understand. I still can't tell you that I understand everything that is wrong with Landon's heart or what they are going to do to fix it, but I know that God has provided us with the best care and for that I am SO grateful.

After that we met with Dr. Thomas again and he began our tour with the delivery room. then he took us to the NICU, I was shocked that we were allowed to go in and actually see the babies and everything. He took us over to certain ones and told us that Landon will be on a machine like this or a feeding tube like that. I have to be honest I don't feel like I really grasped what was going on, I was just so taken by these tiny babies in their little incubators, fighting to live. It was hard for me to hold back the tears, knowing that my baby boy was going to be brought here. Each baby had someone assigned to it though, watching it and taking care of it the whole time. I think that's going to be one of the hardest times for me because I'll be recovering the first couple days he is in the NICU. I'm comforted knowing Ryan will be allowed to be with him the whole time, but it's so hard knowing I won't. From the NICU he will go to surgery and then be taken to another floor where he will stay while he's recovering. This room has a bathroom and a pull out bed so I will be able to stay with him 24/7. I know that will be so exciting when that day finally comes. There were lots of rooms on different floors and it all went so fast I know I wouldn't be able to find my way around again, but the tour really helped. It is nice to be able to picture where we will be and the new children's hospital is designed so beautifully. Every floor is bright and cheerful with safari themes, I truly do feel so blessed that Landon will be treated at such an amazing place. The second day took around 4 hours, we got some lunch together, said our good-byes and headed home. I know these next four weeks are going to go by so fast.

I'm sure there is more I could write, but I will just leave it at that for now. Thank you everyone for remembering us in your prayers as we travel and try to process everything. God has been so faithful to us and we will continue to keep you posted.

Landon's Momma

Upcoming News

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

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

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)

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