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.