Wednesday, April 4, 2012

Landons First Day

I cannot believe it was only yesterday that Landon was born. He has already experienced so much in his short amount of time here. This morning Ryan and I went down to the NICU right away and there was our bright eyed boy, wide awake. The nurse he had today calls him "the thinker" because he is just so aware and curious about everything that's going on around him. She told me I could sit down and hold him which I was thrilled about because I really didn't get to see him very long yesterday. I sat down and she carefully placed him in my arms. I could of stayed there all day! He stared at me then he'd stare up at his daddy who was busy taking a ton of pictures. He makes the silliest faces, I've never seen a newborn make so many different expressions. Me and Ryan just watched him and laughed, he's so silly :) He also likes to keep his hand up by his face all the time, which I think is so cute because thats always how he was in the ultra sound pictures. He eventually fell asleep in my arms... he looked so peaceful and happy.

I reluctantly gave him back to the nurse. When she took him she accidentally grabbed my IV cord along with all of his cords. I thought about how annoying that one tube is for me and here is my baby boy only 1 day old having to be hooked up to a dozen different cords. He is such a lil trooper.

We went back to our room and shortly after a man came in and introduced himself. He told us he would be the head surgeon during Landon's heart catheterization today. He explained the procedure to us and informed us of the risks. He confirmed the hope we gained from our knowledge yesterday that if this surgery went successfully Landon would not need open heart surgery. He said that he would still need to stay two weeks to recover, but no other surgeries would be needed at this time. He explained that what they would do is place a long tiny tube up into Landon's thigh all the way to his heart. This tube will give them a better idea of how his blood is flowing and their hope is that they can use it to make an opening where the valve should be that Landon does not have. This shunt would then allow blood to flow to the lungs and would be a temporary fix until the next surgery. He explained that this will not make his heart "normal", this will only fix the problem temporarily. He told us that Landon will be sedated and will have breathing tubes inserted, but they should be able to come out shortly after the surgery. He made it very clear that this is not an easy procedure. The spot where the tube has to enter is very small and often hard to find. There is a risk of them going through the walls of his heart which would not be good at all. He explained more risks, answered our questions, we signed some consent forms, and off he went. The surgery was scheduled for 10:50 and he told us that it should only take an hour. The nurse in the NICU told us she would call after his surgery when we could go down and see him. 

Ryan and I were very hopeful. Just the thought of him not having to have an open heart surgery yet and maybe being able to take him home so much sooner was more than we hoped for. So we went about our day which consisted of meeting with different people, signing different papers, calling insurance companies, and trying to pump milk every couple hours in between all the interruptions... not easy. Our day went so fast and before we knew it, it was 2:30 and we had yet to here from the NICU. I was beginning to get a little worried, but I told myself that the surgeon probably just exaggerated on how fast the procedure would take. We were in the room when he arrived. I could tell right away that it didn't go as well as expected. He sat down in the chair across from us and began to tell us that they could not find the place where the shunt needed to go. He said he tried until he just wasn't comfortable putting Landon through anymore so it was unsuccessful. He gave us a couple images of Landon's heart and showed us where the blood flow just stops. This grown man with so much experience was clearly exhausted and disappointed. He told us they would probably be looking at doing the open heart surgery on Friday or Monday, but he needs to meet and discuss the future plans with a lot of people tomorrow. We thanked him for trying. I know it couldn't of been easy for him to quite after trying for 3 and a half hours and I'm so glad he didn't risk Landon's safety over it. After he left Ryan and I just sat there for a while letting the hope we had go. We called our parents to let them know then all of them came over. We talked for awhile while we waited to hear from the NICU that Landon was back down there. I finally got the number and called down there. After being on hold for a long time a nurse came on the line and told me that he was just waking up and they had to give him more medicine to keep him sedated that's why it took her so long. She said we could come down and see him now though. Ryan took our parents down and I stayed so I could pump since I got interrupted by the surgeons visit last time.

When they got back I could tell that Ryan was sad. I asked him if it was going to make me sad seeing him and he said probably. They want to keep him sedated and he's on a ventilator now so it's different. After our parents left we went down there together. I thought I was prepared to see him, but nothing can prepare you to see your baby who was so awake and aware, sedated. His little face is all squished together by tape so the tube in his throat doesn't move. He is still trying to breath on his own so sometimes his little chest will pause for a couple seconds and then the machine will kick in and it'll kind of convulse quickly. I couldn't help but tear up when I looked at him. I know he's safe. I know God is holding him and so near to him. His nurse tonight told us that there will be a big meeting with all the teams tomorrow to discuss future plans, but it sounds like if the surgery is scheduled for Friday or Monday they will probably want to keep him sedated and on the ventilator until after. This broke my heart to hear. I know now God was giving me such a gift this morning when I got to be with him and he was so happy and silly and then he just fell into a peaceful sleep all of a sudden. I feel like it was Gods way of showing me that he is at peace. He's still our silly, beautiful, little boy inside that little body covered with tubes, cords, and bandages. He is our lil trooper. So strong, so brave. 

Please pray for wisdom for the doctors as they meet tomorrow and decide what the next steps are. Pray for strength for Ryan and I. It is so hard to watch our baby go through this, we feel helpless. Pray for our Landon, that his little body will continue to be strong.


Daniel and Rachel said...

Natalie I can't imagine how hard it must be to see your tiny son like this!!! I'm so sorry the catheterization didn't work...I know this is all a part of God's plan for Landon, but it's hard when you can't see the whole picture. Praying that God will hold you close and let His peace and love wash over you!!! Nothing can separate you (or Landon!!) from HIS love!!!

All in a Day said...

Tearing up...I'm so glad you got to hold him. Still praying!

The K. Family said...

We will continue to pray for the doctors wisdom and lots of miracles for little Landon! He is so precious and I'm so glad you had a special time with him! Love you all!

joanne said...

Dear Maxwell Family..I am one among many praying for you....Landon is the crown of God's creation...and he has been given to Landon the exact parents God knows he needs. "The secret things belong to the LORD, the things revealed belong to us and to our children forever" Deut. 29:29
Joanne Thompson

Anonymous said...

Landon is so cute! I'll keep praying for you all.
Miriam K.

Roger & Patty said...

Prayers continue for baby Landon and the rest of the family. Be assured you are in many thoughts and prayers.