Saturday, October 13, 2012

A special kind of beautiful (update on Landon)

Oh yesterday... how long you were. How you turned from excitement to heartbreaking disappointment, back to excitement, and eventually led me to a night of gut wrenching laughter and deep enriching conversation. Oh yesterday, how I hated you and loved you all at the same time.

Yesterday I woke up excited because I sent in my final assignments the night before and I was beginning a whole week of guilt free, no due dates living before I have to start up a brand new term of courses. I had a relaxed morning full of sitting on the floor playing with Landon, reading, and browsing the webernet (no spell check that's really what I want to say!) It's so easy to lose track of the time when you don't have a care in the world. I looked at the clock and it said 10:50. Ahh Ryan was getting off work at 11 and I had to be ready with the babe so that we could head to the hospital as soon as he got home (cue mad rush). I hurried and made Landon a bottle, packed his baby bag, got him up from his nap and into his car seat and piled everything by the door, including Landon. Ryan got home and away we went. I was SO glad that Ryan decided to take off a half day of work so he could come with me. We both knew that this was going to be a very important appointment. It was going to be our last appointment in Bismarck before we go back to Minneapolis. We checked in and headed up to heart and lung. As we were sitting in the waiting room, I leaned over and whispered in Ryan's ear, "I think Landon is the youngest one here." We both laughed because everyone besides our family and the receptionists had to be over 60. It's always such a strange disturbing thought for me to think that most of the people who are there because of their heart, have lived such long lives and their hearts are now beginning to fail them. Then there's my boy, and tons of other kids like him, who possess hearts that have failed them before they were even born. It's such a tough thought and one I try not to dwell on because it leads me to ponder questions that can't be answered this side of heaven.

Landon's echo was an... experience. I don't know what was up with him, if he was just showing off his rebellious side for his papa to witness or if his teeth were really bugging him, but he started SCREAMING when we laid him on the bed and they started the echo. Usually he just lays quietly the whole time and lets the nurse do her thing, but not yesterday. She had to stop what she was doing three times so that we could pick him up and calm him. I thought we were going to be there all day. Ryan laid down on the bed with Landon laying on his chest and that worked for quite a while, but then he got fussy (again) and everyone left us alone (again) for 15 min so we could get him calmed down. He finally decided to take his bottle and that seemed to help a lot. I sat awkward and uncomfortably on the side of the bed with my poor exhausted scantily clad babe in my arms, while they maneuvered the little cold wand around on his chest, getting every which way angled pictures of his heart. So finally after a long hard battle they were satisfied and said that we could go. Uhh what a relief after being in that small dark room with a very irritable baby for an hour and a half. The open door was a light at the end of a very long LOUD tunnel.

We then went to a different part of the hospital for our appointment with Fernandez. Have a stated how AWESOME it was to have Ryan with me. I can't imagine how I would of handled the echo by myself. By the time the nurse finished getting his sats and EKG Landon seemed much happier. Fernandez came in a little later and spoke with us about the future. Usually our checkups with Fernandez are very encouraging. I know last time I posted that he told me Landon may not need another open heart surgery because his RV has been growing. I don't know if he was just trying to give us hope at all those other appointments and this one he decided to shoot straight with us or what, but he talked with us in depth about the bidirectional Glen. He showed us pictures and gave us a bunch of medical mumbo jumbo that I tried so VERY hard to understand.

Tangent alert!

Do you ever have those moments where you wish so badly that you could go back in time and give yourself a good peptalk. This happens to me every time I listen to doctors tell me about Landon's heart. I wish I could go back to when I was still in high school, struggling through textbooks that I thought were full of boring and useless information that I would never have to know because I had 0 desire to ever be a doctor. Back then I may have thought something like, 'why does it matter if I know the names of all of these valves and arteries and what they do?" How I would answer myself today, "Oh you stupid girl! Is it not enough of a reason that God has places all these amazing organs in your body and that's what makes you able to live and breath? If that isn't enough reason for you though, how about the fact that someday you will birth a child who's life depends on you getting what is broken inside of him fixed. Someday you will look at your perfect child and hope beyond hope that you could understand what is going on inside of his special little heart. Maybe if you would pay a little more attention to these pictures in your text book and stop skimming over words that are longer than 6 letters long and actually try to learn how to say them, you wouldn't feel quite so helpless when you become me in the future!"

Fernandez told us that of all of the different forms of Pulmonary Artresia, Landon has the most mild case, but his RV may still not be strong enough to sustain his right circulation. "There is no way of knowing for sure, what needs to be done until they get him in the Cath lab. I asked him if they do the cath and they decide he needs the Glen if it's something they will wait to do for a while? He told me that they will want to do it right away. He said he would email the University that day and we could be expecting a call from them early next week. This was a lot for me to take in because we've been expecting Landon's next visit to U of M to be pretty short, BUT if they have to open his chest again, we'll be looking at a week or maybe longer stay

He went over with us about the synagis shot that Landon was going to get and why it was so necessary and important that he get it every 4 weeks now. We talked a little more and then he was gone. I watched the door close behind him and I just sat there, trying to process everything we just saw and heard. I feel like up until this appointment I was so hopeful. I was hearing that God was growing Landon's heart a little bit more every month and I couldn't imagine why He would do that if Landon was still going to end up getting the surgery that will make his RV practically useless. Truthfully I just wanted to cry. I wanted to go through my familiar ritual of going into a bathroom, locking the door, sitting down on the dirty disgusting floor and letting the tears fall where they may. "I can't do it again Ryan. I truly can not imagine watching him go through that again. It's going to kill me." Ryan was standing up bouncing Landon who had fallen asleep covered underneath his hooded monkey blanket. "It's going to be hard Natalie, but it's going to save his life. We don't have an option." I know he's right, but mommies and daddies just process this kind of stuff so differently. Ryan can see the big picture and how it is going to help Landon, but all I can see are the horrifying pictures in my mind of my baby boy sedated and covered in cords and tubes, surrounded by beeping monitors. All I can think about is watching this child, whom I have coddled and protected from every germ the world has to offer him for the past 5 months, disappearing behind an OR door that I can't follow him through. Seriously I have a hard time even writing it. I desperately hope that the surgeon will tell us, after his cath, that everything looks great and he is going to be fine, but I realized yesterday that whether I want to or not, I need to start preparing for another surgery. Right now I feel a lot like I did when I was pregnant with Landon. Like I'm just kind of holding my breath... waiting... praying like crazy... depending on Jesus... cherishing every moment of the present... and waiting.

Ryan is going to explain as best he can what Fernandez told us about the Glen surgery...

So for the Bidirectional Glenn surgery the doctors will attempt to attach the Superior Vena Cava to Pulmonary Artery and send blood directly from the head and upper body to the lungs; bypassing the heartbidirectional glenn for HLHS

 This is the only picture I could find showing the Glenn and this is for Hypoplastic Left Heart.  The idea is still the same except Landon's right side is small not his left. This whole process will alleviate some of the pressure from the right side of the heart and stop the oxygen rich and poor blood from mixing.  In normal cases another surgery is required to complete the process for rerouting the blood. We still don't know if that's what Landon will need so I'll wait on explaining that one.

I don't know if you guys understand that, I don't even know if I really do, but thanks babe for trying. Love you!

So after our long day at the hospital we went home, had lunch, and numb as I still was from the news, I left to go meet our pastor at the cutest little coffee shop in town. I haven't had coffee in 12 days so you better believe I got a mint mocha and OH was it heavenly! He asked me about our vision and desire for the pillow pet fund and I told him how we want to carry God's light into the hospital and offer hope and encouragement to these hurting families. He listened to my heart and he caught our vision and totally ran with it. He wants to interview me during one of our church services and have me share our story and how God has transformed (our recent series has been on transformation) our family, our hearts, and our lives forever through what we've gone through with Landon. He would love for our church to help us make this small dream into something much bigger and maybe create some kind of long term hospital ministry. We shared our stories and our passion for the hurting and I don't know when it happened, but at some point, my heart lifted out of the fog and  was able to see this beautiful sunrise that God is painting with Landon's story. I truly believe that God is going to use our painful experiences with Landon to open up doors in the hospital and doors that lead into very dark and depressed hearts. His light is going to break forth and overcome the fear. He is going to bring restoration and hope back into hearts that continue to beat, but haven't lived in a long time. I don't know the answer to the how's, but we are determined to keep living the story he is writing out for us.

I left the coffee shop so encouraged and my heart on FIRE with passion and excitement because of what God is doing in and through his people. I feel so blessed to belong to a church that has accepted the radical call to follow Christ no matter what the cost.

The night continued to get better when I got invited to go to a movie with a good friend. God knew I needed a stupid comedy to watch. To leave my worries about the future at home and get out and just enjoy life. I needed to be reminded that worrying isn't going to change anything and that it's okay to laugh even when my heart is so afraid and hurt.

Isn't that what makes life so beautiful? That God in His artistic perfection ties pain and sorrow and joy and laughter all together to make this extraordinary tapestry, full of such beautiful colors. The suffering adds depth whereas the bright fragments of intense joy make it something to stare at for hours. What a shame it would be for someone to try to cut out all of the deep richness that pain brings into their tapestry, in fact if they do this, even the brightness of their joy will lose it's vibrancy. No, you need both. A life with both suffering and joy is one that people will admire. It's one that will be made into an heirloom and passed down from generation to generation. It will be hung on the wall, pointed at, and the countless inspiring stories that it holds will be told during large family get togethers as well as small intimate moments of openness and growth. It's one that will not be forgotten, but will continue to change those who see it. It will live on through the people it touches.

How blessed my Landon is that God has already sewn into his short tapestry such depth and meaning.

Sometimes my days are full of nothing but sadness and dread and then others are filled with nothing except joy, but for some reason, yesterday seemed a special kind of beautiful because it held... both.

We are calling in the masses of you to pray, pray, pray. We don't know yet when we need to be in MN. It could be a week or a month so we need to start praying now that God will change Landon's heart so that when the doctors go into it during the cath, they will just be able to take out his shunt and come and tell us that he will be fine for now.

Thank you for all of the prayers. They have not been for nothing, Landon is doing so amazingly well. Just the fact that he hasn't gotten sick is a miracle. Thank you in advance for all of your prayers. We are expecting great things. No matter what... God is faithful!!!

1 comment:

The Kings said...

Beautifully Written Natalie!

Praying for Landon!