Thursday, January 5, 2012

Whata day!!

This is proving to be another week that seems like it's lasted a month, just one thing after another. Landon had a check up on Tuesday. This was just a normal check-up, I got to hear his heart beat, had some tests done and then talked to my doctor. It was so good to see her again. I hadn't seen her since we found out about Landon's heart. She told me that everything looks good, but she wanted to call Minneapolis and check with Dr. Shaunti about what she wants them to be doing while I'm here in Bismarck.

Yesterday (Wednesday) she left a voicemail on my phone saying that she talked to Dr. Shaunti and they want me back in this week for a fetal echo. So today I got a call at work saying that I needed to go to the hospital for a fetal echo and then another call a little later saying I also need to come to the clinic for a biophysical and an ultra sound today. It is very overwhelming to get calls like this that totally disrupt my day. I feel awful about telling my boss that I need to leave, without being able to give her any time to find someone to cover for me.

I got to the hospital around 11:30 and had an ultra sound done, then I went and got hooked up to a machine  that monitors Landon's heartbeat for about an hour. It was fun to be able to hear him moving around. I can feel him so good now so it always made me smile when he would kick the monitors and make a really loud noise (like when you tap a stethoscope hard with your finger). My doctor and nurse would pop in the room every now and then to check the papers that were spilling out of the machine, but for the most part it was just me and him. Just when I thought I was done and going to meet my doctor to talk about everything the nurse came back in and told me I had to go back to ultra sound so they can get Landon's weight (I wondered why they didn't do this the first time). So I went back for an ultra sound and learned that Landon is now exactly 2lbs. Then I went back and talked with my doctor. She is very pleased with how everything is looking. She said besides the little problem with his heart he is a perfect baby. She was really happy with his weight, he's in the 78th percentile. I'm not sure what that means but according to her its really good. She said he's not a puny baby which is good because a puny baby would have a much harder time surviving than a big strong baby. This made me super happy :) We have been praying for two main things. #1 that God would heal Landon and open the valve in his heart right now so he won't need surgery or anything. But if God chooses not to heal Landon in that way then we are praying that he helps him to grow and become as strong as he can be so that he can fight through the surgeries and everything he will need in the future. Hearing that Landon is growing and strong was such an answer to prayer!

After talking with my doctor I brought a paper back to the front desk that showed what weeks I needed to schedule appointments. I will now be going in weekly to have the same things done (biophysical and ultrasound). Trying to explain to the receptionist that I needed to schedule the next 8 weeks in appointments was not easy, then I told her that I'm supposed to have a weekly ultra sound and she got really confused. She told me she would talk to my nurse and send me the list of appointments. Little things like that make me realize that this isn't a "normal" pregnancy. In a way this makes me sad, but with every strange confused glance I get from other people who don't understand our story I know that I'm fighting for my son. We are his advocates, we have to know what he needs and make sure that he gets it.

By the time I got done at the front desk I had just enough time to drive across the street to the hospital, get checked in, and go up to the heart and lung center for my fetal echo. As I sat in the waiting room I thought of how I felt the last time I was there. It seems like an eternity ago but tomorrow will be just one month since we found out about Landon's heart. I know that I'm not the same person I was on that day. So much has happened so fast and me and Ryan have been forced to grow in so many ways. I wasn't a wreck laying on the bed this time. I am not surprised when I hear them talk about his heart, I just listen and sometimes ask questions. At the end Dr. Fernandez told me that there's no retaining of fluid (that is something they worry about in cases like Landon's) and that there has been no changes for the worse so that is really good news.

By the time I left the hospital it was 3:30. I failed to mention that between everything I had done, there is a longer period of waiting. I think that is what makes these appointments so exhausting. The waiting...then going to a room and waiting for someone... then going back to the waiting room... then going to a different waiting room... then going into a room and waiting for the doctor, you get the picture... exhausting. Since it wasn't yet 4 I decided to go back to work for the last hour and a half of my shift. The kids were all so glad to see me and they liked being able to see a picture of the baby in teachers belly :)

So that was my day... or so I thought. Me and Ryan just got back from supper and we went to get the mail. I like to take the things that look like letters and leave him with the bills. He opened the first one and on the way up the stairs I heard him sigh and say uh oh. I figured it was just a bigger bill then expected and I opened up one of the letters in my hand as we reached our apartment door. I was shocked to find a check from our church and a note saying they were thinking of us with their Christmas offering and praying for our family. My utter joy was quickly stolen though as Ryan showed me what he was holding. It was a letter from his insurance company explaining that I can not be covered under them because I have, what is considered, a "pre-existing condition." It was like someone just slapped me in the face. I took it from Ryan and read it myself, which only made me more sick. "How can they do that?" Then it's like the strong me that had been occupying my body all day just decided to leave. In that moment everything just became SO overwhelming. The whole page of scheduled doctors appointments hanging our fridge now terrified me.

Ryan told me not to worry that it will be ok. The weird thing is I know he's right. Just the fact that we opened a check from our church the same time we got this horrible news is evidence that God is here with us and He will take care of us. I wish I could say that realizing that filled me with peace and joy but... it didn't. Truth is, I'm still scared, overwhelmed, and exhausted from everything. Our new motto is "one day at a time" but sometimes it seems like it should be "one hour at a time." There is just so much to take in and digest and it's like right when you feel like your doing a good job at learning to cope BOOM something gets thrown at you again.

Ryan never lets me worry about our finances. He tells me that my job is to take care of Landon and his job is to take care of both of us. He is so strong and amazing, but I know this isn't as easy for him as he wants me to think. His trust and confidence in God never fails to make me feel safe and secure though.

So as of now our plans are to try to get me back onto my parents insurance which is what I was under until I started working full time. With the weekly doctors visits I will no longer be full time so hopefully that won't be a problem. Plan B is to let Roxanne (from early intervention) know about it. When we talked with her last, she told us that this could happen and if it does to contact her right away.

So that pretty much sums up where we're at right now. How I wish today was Friday because right now I have no desire to leave my bed. In the midst of all the chaos we remind ourselves that God has never failed us and our hope continues to be rooted in Him alone.

Landon's Momma


All in a Day said...

((((Hugs to you all!))))

Annie said...

I'm thanking God right now for Ryan--I'm truly thankful for his Godly leadership in your little family--you do indeed have a good man. So thankful for that.

I'm also thanking God for Roxanne, that you have an advocate who knows the ins and outs of the "system".

Listening to your description of all the waiting brought back the same heavy feeling I had at Mayo as I was seeing doctors about my tumor and later waiting for surgery. I will be praying for you as your appointments go on, that God will comfort you during those times.

I'm eager to see how God will work the whole insurance thing out. I will pray hard! He will never leave His children forsaken or the righteous seeking for bread. (Hope I'm not misquoting that too badly...) This verse just came to me as I was typing this.

Take care, Natalie, and know that you're not alone. You have an army of prayer warriors fighting by your side.

Love you guys--Annie