Tuesday, May 29, 2012


The shock of my brothers news is wearing off enough for me to write the post I was planning on writing today. Landon is still doing extremely well here at home. He receives a daily overflow of love and attention from everyone he's around. Ryan says he's on a high calorie and high love diet haha. My parents visited two weekends ago and Ryan's parents just left this morning. It was great to see family again. They all couldn't believe how much he's changed since they last saw him in MN.

He had another checkup with Fernandez last Friday and he weighed in at 9Ibs 6oz!! His shunt sounds great so the Dr. said that he could go down to one doze of Lasix a day. We moved his aspirin to the morning so we don't have to give him any meds in the evening now which all 3 of us are very happy about :) The Dr. also said that if he has gained a good amount of weight at his visit in two weeks we may be able to change his formula recipe to 27 cal. an ounce instead of 30. I'm hoping if his formula isn't quite so thick and chalky it may improve his reflux. Right now he is getting 7 scoops of formula in his bottle which is hard on his tummy, but it is why he is gaining so much even with how little he eats. We still hardly leave the house and I feel like I reek of bleach and hand sanitizer 24/7, but he has not gotten sick so it's all worth it.

Every morning I go into his nursery I am shocked that he can change so much over night. His hair is finally growing back and today it looks like it may be curly like his daddy's. My days are still busy, but I feel like we are in a really good routine finally. Tomorrow he has his first real visit from his OT (occupational therapist) she will be coming every other week just to check on him and help me know what I need to be doing and what I should be watching for. He scored really good at his assessment a couple weeks ago. We want to work with him a lot so he is at least starting to sit up before his next surgery so that once he recovers he can pick everything up quickly and not be too delayed since he won't be able to be on his tummy until his incision heals again. I have been told that his incision looks like it is healing very nicely. At his last appointment Fernandez said he should be able to be on his tummy in two weeks. Hopefully he will also be able to have a real bath which I'm hoping he likes better than the sponge baths he is getting now.

It is hard to believe that our little love bug will be two months on June 3rd. This will also be our 1 year wedding anniversary. Big celebration for our family!! God has been so good to us. Thank you for your love and support. I have been amazed at peoples quick responses whenever I write about him or post pictures. Your love and encouraging words makes me feel less isolated and more connected with the outside world. We love all of you! I will continue to keep you updated, but I feel like the time is getting longer in-between my posts simply because we have fallen into our new normal nicely and he is doing so well. Ryan did manage to post some recent pictures of him for those of you who don't get to see them on Facebook. Sorry about the wait!

Moments When Your World Stops

In the past year I've had many of these moments. Moments where your world seems to stand still and everything that once mattered no longer does. The first time would be when I found out I was expecting. I didn't know how a child would fit into our life at the time. I was overwhelmed and so scared of the future. Nothing else seemed to matter. The second was when I heard that Landon's heart was broken. My world stopped. Our lives were changed. Nothing else mattered. I will never be able to explain the feeling you have when your waiting outside of the OR. Life seems to be moving on, but yours is suspended in time. You don't know what to say or what you should do. Nothing else matters except that fragile little life that you know is also hanging in time.

Today I experienced another one of those moments when I saw my brothers post on Facebook, thanking God that everyone was still alive. I clicked on the link and was taken to his blog where he explained what had happened today. He was sitting at the skate shop that YWAM owns and he works at, checking emails and listening to music when all of a sudden he heard a scream and a loud crash. There was stuff flying everywhere! A woman had blacked out, hit another parked car, which redirected her SUV right through the board shop. It is a miracle that no one was killed or even injured. As I was reading this, I was shaking. I've heard of stuff like this happening on the news, but could something this crazy happen to someone I love? "

I know babies are born with defects and diseases everyday, but it couldn't actually happen to my baby. Up until this year I would say that my life had been pretty untouched by tragedy, but this year God has taught me that no one is safe from death. My brother wrote in his blog that "life is fragile." I remember writing the same thing in a past post.

I don't think that God wants us to wait around for a near death experience before we realize just how precious each breath is that he allows us and the ones we love to take is. Me and my brother had a Skype date planned for later today. I cannot imagine how I would handle it if he died today and I never got to see him one last time and tell him how much I love him. My prayer is that this post will remind all of us today that none of us are guaranteed tomorrow. We put so much focus and time into things that won't satisfy and won't last. I think my brother said it best in his blog, "If you haven't put your faith in Jesus, don't wait." Make peace with God and make peace with those you love. Life is to fragile to wait until tomorrow.

Please keep my brother and the rest of his Youth With A Mission (YWAM) team in Australia in your prayers. There was much damage done that needs to be repaired. Most of all pray that God receives glory through this. It's all over the news there, and it truly is a miracle that everyone walked out alive.

Friday, May 11, 2012

Best Mothers Day Present!!

Landon astonished everyone today with a 1Ib weight gain in 9 days. When I saw 7.11 on the scale it took a while for it to really sink in. I was just hoping for over 7Ibs. After she took his blood pressure, the nurse weighed him again because she said Dr. Fernandez wouldn't believe her that he gained that much in a week. I was blown away. That is a lot of weight gain for a heart baby. That doesn't just happen. I told the nurse it's because he has so many people praying for him. That's why he keeps amazing the doctors :)

Dr. Fernandez told me not to change his formula at all because it's obviously working. He listened to his heart and said that it sounds really good. He told me that, "I'm doing a good job, he looks really good". It meant so much to have him tell me I'm doing a good job. The only bummer to the appointment was that he said no to us going to watch my dad run the Fargo Half Marathon next weekend. Even though he would be outside, there's just going to be to many people there. Other than that it was a perfect appointment. Roxanne was able to come with and it was so nice to have someone to visit with during the long wait for his meds. He got put on one more med because his reflux has gotten worse since the switch to formula. I never thought I'd be so comfortable with a syringe, but it's amazing how you adjust your life and before you know it, it's just your daily routine.

Because Landon is doing so well, we will not need to go back next week. A week without any appointments? Could it really be true? Dr. Fernandez even said if he keeps doing so well, he will eventually only need monthly check-ups. This is such great news! We are so proud of our lil trooper.

I truly do attribute this victory completely to prayer. Thank you everyone for caring and loving our son so much and keeping him and our family in your prayers. We love being home. We love being a family. Today was such a huge day for our family and for me it was the best Mothers Day present. Just knowing that he's doing good. Just knowing that I'm doing a good job taking care of him.... it means so much.

Wednesday, May 9, 2012

My Perfect Day

This morning I was sitting on our couch feeding Landon when the topic on the radio caught my attention. The radio station I had on is having a contest where moms can write in describing their perfect day and on Mothers Day one of them will win whatever it was they wanted. Today the woman chosen described how she would love to wake up in Italy, spend her day taking a class at a culinary school, and finish up the day being with her husband with absolutely no distractions. I thought that sounded like a fun day and it lead me to ponder what I would choose if I could have a perfect day.

I looked down at Landon who was staring at me with his HUGE eyes. These eyes are filled with so much love, depth, and wonder. These are the eyes that I waited for days and days and days to see. I would stand by his bed for hours watching his motionless body, just waiting for any sign to let me know that he was still in there. Now I get to see those eyes staring back at me everyday. Even the times in the middle of the night where I'm woken by his cry, I find myself reminding my heart how I felt the first time I heard his voice. Right after he was born they took him behind a curtain where he was evaluated by a ton of hands. I remember asking over and over again "why isn't he crying?" and then I heard it. The most perfect sound coming from behind that curtain. Tears filled my eyes and a love overcame my heart, at that moment, that will reside there until the day die... the love of a mother. That was the last day I heard his voice until the day he finally got his breathing tube out (over a week later). It seemed like we'd waited forever to hear him make any sounds. Finally his breathing tube was out and we just stood there watching him... waiting. He would open his mouth so wide and wait for something to come out, but his throat was just to dry. Several minutes later we heard it, just a tiny squeak that eventually grew into a cry. I couldn't contain the overflow of emotions. I will never tire of running to that cry, even at insane hours of the night.

I have many times throughout my days where I just stare at Landon and I'm overcome with love and gratitude. I can honestly say, if I could be anywhere and be doing anything, I would choose this, hands down. My days are not glamorous. They are filled with diaper changes, feedings, multiple outfits changes because of spit ups and leaky diapers, but I refuse to take any moment for granted. When I start getting tired of changing his diaper I remind myself of how I felt when I changed his diaper for the first time in the NICU. He was 2 days old and I felt so privileged that the nurse who was working would allow me to do that. It is SO hard to have a baby and feel like you're not able to do anything for him that moms are supposed to do. That simple act of being able to change his diaper, made my day, because it made me feel like a mommy. I thank God that I can change his diapers now without having to maneuver around the cords coming out of his belly button that I always managed to get his legs tangled up in or taped into his diaper straps.

I remember waiting for hours to be able to feed him and when lifting him out of his bed to hold him was at least a two person job. I never get sick of changing his outfits because for three weeks he didn't wear clothes. I watched his tiny body shake and I wasn't able to clothe or cover and cuddle him close... I get to now. Yes, if I could choose my perfect day, I'd say I'm already living it. It's not easy and some days are so much harder than others, but I am a mother. I've dreamed all my life of having that title, and I feared that I might watch it slip through my fingers, so everyday I wake up I praise God for every little moment.

As Mothers day is coming up I just want to applaud all of you moms. It is not easy carrying around this relentless love in our hearts. I also want to remind you to not take any moment for granted. I feel blessed that God sustained me and had me endure those hard times because it's made me appreciate the small, tiny, everyday things. I know that most moms don't experience that and I know that it's easy to just go through the motions everyday, especially if your the mother of an infant and everyday seems to be the same. My prayer is that this post helps one mom change her perspective and that we're able to see all of the mundane tasks as the gifts from God that they are. Being a mother is the greatest gift!

To all the tired mommies out there, Happy Mothers Day!!! I'm so happy to be one of you!!!

Saturday, May 5, 2012

I have had many people tell me that I need to write a book. Right now, I don't see how that would be possible. I can hardly find the time to update my blog now that we're home. In the few moments that I'm not spending with Landon during the day, there seems to always be dishes to wash, laundry that needs folding, bottles to mix, thank-yous that need to be written, phone calls to make etc. Blogging just got pushed further and further down on the mental to do list I am constantly writing in my head.

With that said, the weekend is finally here. My amazing husband has taken over the full time job of catching up on laundry. Even more amazing is how he's managing it one handed since Landon seems to think that he can only sleep while being held today. I finally feel like I'm able to close our bedroom door for a while and go through the process of recalling this last week. I always prefer to blog right away while it's all still so fresh, this is much harder, but I'm learning that I have to be happy with anything I get done in a day. It is a successful day if at the end of it, Landon has been well fed, cleaned, interacted with, and loved throughout the day. Every dish that got put in a cupboard or article of clothing places in a drawer is just a bonus.

On Wednesday I took Landon to meet Dr. Fernandez for the first time. Dr. Fernandez performed my first fetal echo and he is the one who diagnosed Landon and referred us to U of M. I saw him many times during my pregnancy so he could keep an eye on how Landon's heart was developing in utero. First Landon had an echo (ultra sound of the heart) by a nurse. He is so tiny laying on a normal size hospital bed. Dr. Fernandez came in and looked at him a little himself. He told me he would speak to me in a while. After the echo we went to a different part of the hospital for a chest x ray. Landon hated being placed on a cold board and held down, but he was a trooper and it was soon over. Then we went to a different room (it's a workout lugging around a carseat) and they weighed him (6Ib 11oz, no change since Monday) and did an EKG on him (lots of little stickers and plier like objects with wires, that monitor his sats and different things). When that was over I was told Dr. Fernandez would be in soon. I asked if I could change Landon's diaper on their table the nurse said that was fine. I was SO glad! By this time, we had been there for close to 3 hours and I hated that Landon was having to go through all this while being in a dirty diaper. I changed him quick then grabbed his bottle.  I am convinced that babies just are NOT meant to have 3 to 4 hour Dr. appointments. They don't like them, nor handle them well and, on top of that, it really screws up their eating schedule.  I could tell he was exhausted and I was glad when the comfort of the bottle stopped his screaming and finally got him to calm down and fall asleep. He was still sleeping when Fernandez arrived. He told me that the echo looks really good. The shunt looks great and seems to be working exactly the way it was meant to. He said the big things now are getting him to grow and just waiting to see if the right ventricle will grow anymore by the time he turns six months, and has to return to U of M for his next surgery. I asked him if he thought he will do good on formula and he agreed with what the pediatrician had told me. He said he was going to send in a dietician to show me how to mix the formula so that he will be getting the right amount of calories. I asked him if it's ok to take him places like church. He explained that going outside is fine and running into the grocery store with him to get a few things is alright, but he needs to be kept out of smaller enclosed buildings that have a lot of people in them, especially children. He's shouldn't be around any kids younger then three. He told me that we're lucky that it's not winter, so he doesn't have to worry about flu season and he can go outside. It was nice to hear that we're not completely locked down in our apartment.

He listened to Landon's heart one more time, took out some stitches and then told me he'd see me again for a weigh in next week. Then we waited for another half hour for the dietician to come in. By the time I talked with her and got all the information I needed it was after 4 o clock so it didn't make sense to go home, unpack Landon, only to bundle him up in a few minutes to go pick up Ryan, so we just went straight to Ryan's work place. He was waiting for us outside the building. We got home, Ryan grabbed some things and then left to go help with youth group.

The isolation started to sink in after he closed the door behind him. I miss going to church together on Wednesdays, seeing our friends, eating together, the worship and fellowship. We just had a baby, and I think it's normal to want to show him off... but we can't. We were joking today that maybe we should tell our friends whenever we're planning a trip to the grocery store so that we can "accidentally" run into them there. That way we could at least let them see Landon from a distance haha. All joking aside, we knew that it was most likely going to be this way. We would never jeopardize Landon's health just so we could show him off, but I'm so proud and in love with him. I want to share him with people. I want them to see his huge bright eyes, and feel the strong grasp of his tiny hand. Especially since these people are the ones who have held him up in prayer for so long. It saddens me to think of how much he will change by the time we finally get to bring him to meet his church family. Since before he was born, I've imagined the day when we can stand up on the stage, hand him over to the pastor, and have him dedicated to God. An outward expression of the inward dedication our hearts make on a daily basis. It brings tears to my eyes when I picture the outstretched hands of the church family who have, so quickly, taken us under their wing, befriended us, loved us, encouraged us, prayed unceasingly for us, and who, I know, will love Landon and play a role in his spiritual development. I cannot wait for that day and I know that because we MUST wait so long, that day will be even more sweeter. I also look forward to the day we can bring him home (we still call it that) to meet all of his Woodland family. Where he will be dedicated by his grandpa on the same stage where I was dedicated as a baby.

Landon is such a blessed child to have already experienced such an outpouring of love from the body of Christ. I can't wait to explain to him someday that people from all around the world, all different denominations, cultures, and backgrounds, joined in prayer for him and his healing. What a beautiful lesson we can teach our son because of all of you.

Tuesday, May 1, 2012

Our Long Hill

Yesterday was a big day for Landon. It was his first appointment with his pediatrician. I was excited for a normal appointment where I could ask normal baby questions and save all the heart concerning ones for when we see his cardiologist on Wed.

We dropped Ryan off at work that morning so I could have the vehicle. I felt so proud toting Landon around all by myself. Sitting in the waiting room rocking his carseat and looking around at the other moms with their little ones. Again, I felt normal, and that was so nice.

Landon's name was called and I carried him back to a room. The nurse asked me questions about what he's gone through and how he is doing now, then she had me take off his clothes and carry him to the baby scale out in the hall. I watched as the numbers slowly increased then stopped suddenly at 6Ib 11oz. I was really shocked. I told the nurse I was really hoping for more. He weighed 6 Ib 8oz when we left the hospital last week so that's only 3 oz in a week :( We went back to the room and waited for the pediatrician. She arrived with a stack of Landon's records and other papers she'd received from U of M. Then she showed me a paper that scored where Landon is compared to other babies his age. He rates in the 3rd percentile for his height and weight. The pediatrician was obviously concerned by this, as was I. I told her I thought his feedings were going well. Aside from the first couple days we've been home, he's met his caloric goal each day. They want him to be taking at least 50 ml every feedings and he usually takes at least that. She asked if I was bottle feeding still and I said yes. I told her that he actually nursed for the first time for me the night before and I was so excited. I told her I got up that night determined to keep trying with him until he got it again, but he just got so upset. He was too tired to suck so I finally just gave him a bottle. The next times I tried were the same way. I told her I know that breast milk is the absolute best thing for him, but I hate pumping. I thought it would be easier to find time for it once I got home, but it's close to impossible. Every time I try to pump he starts to cry and I have to stop. I told her I don't know if it's just stress or what, but my milk supply has decreased significantly since coming home. I told her I really wanted to nurse him. She looked at me with sympathy and told me that they rarely ever have to do this, but this is one of those rare cases where she can't encourage breastfeeding. She said he just needs more calories, thats why they have me fortifying his milk with formula. With all of the effort it is for him to even try to nurse, he's probably already burned the calories he would consume. I asked her what I should do then because I don't think I can pump much longer. She asked me if I have enough frozen milk to last him until he goes to see Dr. Fernandez. I told her I do and she told me to keep fortifying and giving him that and the Dr. will probably prescribe a high calorie formula at his visit on Wed. A part of me was relieved to hear that I could stop pumping, but more than relief I felt sadness, that I can't give Landon what he needs. That I will never have that bonding time with him that other mothers talk about as such an amazing experience. I hid my disappointment and asked the Dr. some other questions.

I told her that I had it in my birth plan to get him circumcised, but they didn't do it in MN. She told me that she would call Dr. Fernandez and see if he thinks it's a good idea if they got that done today. She told me it doesn't take any longer than 5 min. She left and came back in and said that he gave her the ok. She asked me if I wanted it done today. I thought about it, and I hated the thought of him having to hurt again, but I knew that he had to get it done at some point so may as well do it today. They asked me if I wanted to stay or leave and I opted to stay. They were surprised, but I told them that it can't be any worse than when he got his chest tube out. They agreed. I just put my head down by Landon's and whispered to him while he squeezed my finger and cried. They had his legs strapped down and I watched as his cry turned into a scream. He was so upset and in so much pain. I tried to calm him down, but he began to turn blue around his eyes nose and mouth. I was on the verge of tears. I kept standing by his side and soon began to realize that this was taking a lot longer than five minutes. The nurse asked me to sit down and she brought him to me to hold to get him to calm down, while they continued to try to stop the bleeding. By now an hour had passed and I asked the nurse if it was normal for it to bleed this much. She told me no, that most boys hardly bleed at all, but not to worry (yeah right!) Finally the pediatrician came in and explained to me that because of one of the meds he's on to prevent blood clots from forming around his shunt, his body isn't able to form a blood clot to stop the bleeding. She said she ordered in some special stuff that will go over the cut and form a blood clot for him. She said that he hasn't lost a horrible amount of blood, they just don't want to send me home with him before it stops bleeding.

Once the stuff finally arrived they put it on him and then everyone left the room because it takes some time for it to start working. So it was just me and Landon. He had finally fallen asleep after screaming for nearly two hours. I looked down at him and couldn't stop the anger from building inside of me.

Why does everything have to be so hard God? Is this how it's always going to be for him? Am I always going to have to watch him be in pain? With every question I placed before Him, God reminded me of the same thing... long hill.

They finally got the bleeding to stop enough for us to go home. I could barely hold it together as I walked out to our jeep. I put Landon, who was still sound asleep, in the back seat and climbed into the drivers seat and shut the door. I finally gave myself permission to let it go... I sobbed. I didn't care who was looking at me. I was so exhausted, angry, and heartbroken. I looked at the clock and it read 4:52. Our appointment began at 1. I had been in there for hours trying to calm my screaming baby while he continued to bleed. It was all just too much. I drove to Ryan's work place feeling numb. Ryan was outside waiting for me. I had texted him to tell him what was going on so he knew that we didn't have an easy day. I drove us home, keeping the subject on his day. I parked our jeep and asked Ryan to carry Landon in. He met me on my side as I got out and pulled me close. I just broke down... again. He told me that it's going to be ok. That I'm doing a great job. I told him that everything is so hard. Even something that is a normal procedure that most baby boys have done, couldn't be easy for him. Gaining weight is so hard. We try to get him to take enough at every feeding, but we can't let him eat for too long or he burns the calories and it's pointless. We can't even let him cry like most babies can because that also is too much work for him. I told Ryan I knew that it would be this way, that he would have these struggles, but it's just so hard. Ryan's eyes were so filled with understanding as he pulled me close again and told me that we're doing the best we can do.

I was on the verge of tears the rest of the day. Whenever I look at Landon it just hurts me to the core because I know what he's been through. He is our first baby and when we look at him we think he is absolutely perfect. He was healthy enough for us to take home so we forget that when other people see him to them he still looks sick. I forget that other babies skin isn't grayish blue. We forget that it's not right for him to be the size of a newborn when he's a month old because for us it seems like he is a newborn that we just got to bring home. All of these realizations hit me yesterday. Maybe it's just the baby blues I'm feeling, but I think it's better explained as the blue baby blues. Just as I had to grieve my losses when I was pregnant, I now find myself having to grieve again. I'm grieving that I can't nourish my child like other mothers can. I feel like I've failed him because I'm giving up on pumping. I grieve that I missed the first weeks of his life, times I will never get back with him. I grieve that we can't go show him off to all our friends for fear of him catching something. I grieve that he never got to experience a happy welcome into this world. His experience has been so hard, he is so tiny, fragile, and undeserving of all this pain. And yet even with all this grief I find myself amazed by him. I watch him smile and stare up at his daddy. I see how happy and content he is and I'm just blown away by his resilience. God reminds me again... long hill.

Landon's name means "long hill". I am someone who always found the meanings of names very interesting and significant. We almost didn't call him Landon because I didn't think it had a significant meaning. Ryan and I both have plaques with our names and the meanings of them hanging in our hallway that my cousins wife made for us for a wedding gift. I always wanted our kids names to go underneath, but I didn't see how Landon's name could be made into something meaningful. Who wants to be named hill? Our love for how the name sounded won out and we both agreed finally that Landon Anthony would be his name if he was a boy. Fast forward to my baby shower in Warroad, long after we had found out about Landon's heart defect, I opened the gift from my cousins wife and was so thrilled to find Landon's plaque. As I read what it said tears welled in my eyes. She could not have known how God would use that gift to speak to us about Landon.

It now hangs proudly in our hallway underneath mine and Ryan's and reads:

Landon "long hill; ridge"  Anthony "priceless"

The one whose life becomes a priceless testimony and encouragement to others because he climbs the long hard roads of life while holding God's hand.

Life Verse:

"For I the Lord your God will hold your right hand, saying to you, fear not; I will help you"
Isaiah 41:13

On days like yesterday God reminds me that He has a plan for Landon. That his pain is not in vain. That He is right there with him holding his tiny hand, as well, and he will NEVER let him go.

So many of you have written to me, telling me how your life has been impacted by Landon's story. I can't tell you how much that means to us. We can already see how God is using our son to be His priceless testimony and encouragement to others.

Please continue to pray. I know it's tempting to forget now that we're home and he seems to be doing so well. As I was reminded yesterday, we still have a long hill ahead of us. Landon needs to grow. Right now he is swimming in newborn sizes and he will be a month old on Thurs. We're going to be switching to formula so pray that that's a good transition for him. Also, if you could pray for me. I've stopped pumping and I knew that it would be painful, but I didn't anticipate being physically sick.  It's very hard for me right now to find the energy and strength to care for Landon. When Ryan's home he is amazing and takes over most everything. He even gave Landon his meds before he went to work today so that I wouldn't have to get up and do it ten min after he left. Hopefully this will pass quickly so I can start to feel like myself again.