Day 90: Off of feeding tube and oxygen .. Surgery for Maurice

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When you look at something everyday .. eventually you stop “seeing” it. Mia started school last week. Being in a new place with her ..watching her sit at her desk for the very first time .. really reminded me of this. Think about your first day in a new classroom. You take every bit of it in .. each picture on the wall .. the colors the sounds.. you can’t help your eyes from roaming around each and every corner. Your senses are heightened. But as time goes on, the space is just there. It is what it is.. the colors don’t look so bright and sounds ( like the bell signaling you to change classes) no longer sound as loud. The strong smells from the lunch room and gymnasium are barely even noticeable.

You get comfortable. You become less aware. The same thing happens when you sing your favorite song.. or say your prayers .. do you even hear the words anymore .. what they mean .. it becomes a reflex. When our senses are exposed to the same thing over and over again.. even the taste of your favorite food … you start to get desensitized.

This progression is something that happens unconsciously. It is human nature. After months in the NICU, you develop this strange comfort. Each day hardens you a little more than the last. The pain is still there.. for me the pain gets worse .. but the place itself changes. In the beginning it’s just terrifying and overwhelming. You can’t help but memorize each wire.. trace them from your babies body to their corresponding machine. .. the loud vibrations of water through the Cpap machine and the drone of endless beeps .. it is all deafening. Everything smells like hand sanitizer. You are always cold… a chilling cold to your bones. You are “mommy.” At least that’s what everyone calls you. But you don’t feel anything like a mother. You are there to be with your baby. A baby you can barely see or touch. I was wheelchair bound the first few days and could barely stand up long enough to look inside the holes of the isolette. I would reach up and hold their tiny hands as long as I could. I would always try to time it and make sure I spend the same amount with each of my boys when they were in separate rooms. I knew both rooms inside and out.. even how many steps it took to get to them.

But time goes by .. you stop “seeing” it all. Staring at the walls and monitors when you are alone in a room for hours at a time becomes the norm. You no longer feel the same paralyzing fear when you see their translucent skin hanging on their small bony body… The nurses would tell me, when I would ask to hold them, “one day you will be able to just reach in and pick them up yourself. ” It sounded so foreign and impossible.. but sure enough ..days turned into weeks and I was able to do it. I would monotonously detach the tubes, leads and wires.. pick up my baby .. put him on my chest .. and then begin quickly reattaching everything while he was lying on me. I can reach in and change their diapers. I can give them baths. I can pick out their outfits and dress them.

The fear started to fade.. the environment the same ..but my perception evolving.

It has been 90 days. My son Maurice has been in the NICU for an entire season .. summer came and went.. we are still here. The room isn’t as cold. The machines a little less scary and many times I don’t even look at the monitors. The tubes on his face …almost a part of him.. I never saw him without them.

I walked in a few days ago .. as I have literally done a hundred times before ..and peeked at him quickly before rounds. My sweet nurse asked me if I noticed anything different. I didn’t… I had to go back and look again. I stopped “seeing” what was in front of me. My boy .. my strong precious baby boy didn’t have his oxygen in. We were anticipating him going home with it. The doctor decided to give him a trial off “just to see what he does.” He has been on two different medications three times a day and I can see a change in him. Well, he did it! I am not surprised at my Superman! It has been almost 4 days now without any respiratory support. My boy is still breathing fast but he was doing that even with the oxygen on. His doctor explained to me that because of his chronic lung disease he has difficulty getting co2 out and having supplemental oxygen won’t change that. His lungs just need time to grow. There is scar tissue built up that will never go away. We don’t know what the future holds but at this moment .. my strong Maurice is breathing on his own.

About 48 hours after that, his feeding tube was taken out too. He is eating and breathing. When you have a baby .. do you ever think about that baby not being able to eat or breathe ? Forget the torment of not having them with you .. not being able to hold them each night… but to think your baby might not be able to do the basic things needed for survival .. to watch him struggle for months ..how I prayed for you my angel. How proud of you I am .. you are my warrior.

We would have been going home. On Saturday the doctor and I discussed his progress.. and our plan was to go home today. She then got up to examine him. I saw the look on her face and knew it wasn’t good. His hernia is much larger than we thought. He is having surgery tomorrow. The past 72 hours have been filled with so many emotions. To know my baby is now ok.. he is no longer the one pound preemie requiring countless measures for survival. He doesn’t sleep in a temperature controlled box.. he doesn’t need a machine to breathe.. he doesn’t need a tube to eat.. my boy ..his face free of all the apparatus.. you belong with me now. How seeing you here .. leaving you here has become so much more than I can bare.

I stopped “seeing” so many things around me for a while now. I almost can’t remember what it felt like to hold your bony one pound body… how many hands would shake. I’m so sad that I can’t be with you .. I’m so so sad and I almost am not able to celebrate your progress because of it. I’m sorry my love. It will pass.. I’m afraid of surgery. I’m so tired of always being so afraid.

In the midst of this.. my dear talented friend Maegan sent me pictures. Pictures she took on my wedding anniversary July 4. The boys were about 3 weeks old. It was just about the time when I started to get some of that comfort. But this day was also very special because it was the very first time James ever held them. I have taken thousands and thousands of pictures. But there is something about these.. I can feel every emotion looking at them. They are a reminder of where we were and allow me to celebrate a little today. When she sent them she said, I hope there’s some reason why today is meant to be the day I send these to you. It was the day I was told he could come home and then minutes later told we need to have surgery. It was a one of my hardest days. These pictures remind me of what I stopped seeing. When I feel like I can’t do anymore .. it reminds me of how strong I really am. It reminds me of the miracle I have been blessed to live. I’m so grateful for them.. so grateful for my sons.

Please keep Maurice a little closer in your prayers for the next few days .

6 thoughts on “Day 90: Off of feeding tube and oxygen .. Surgery for Maurice

  1. Judy landano says:

    I have the chills hearing all the good news. So very happy for all of you. You did it Maurice! Strong little boy. Tomorrow I will light a candle for your successful surgery. Tell mommy to keep us posted on your progress. This little fighter will be home before you know it. Love all the pictures. Stay strong for your little fighter. Love and hugs.πŸ’™πŸ’™πŸ’™πŸ™πŸ™πŸ™

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  2. Diana Walsh says:

    I can’t believe this progress. This is supermoms son for sure! Victoria and I have been praying for Maurice and Peter every night together. I can’t wait to tell her in the morning how well he’s doing. We will pray for him and his doctors. πŸ’™

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  3. Aunt Susan says:

    Nothing brings more joy than to see Maurice looking up at James. That little warrior brings such warmth to my heart. God bless him and prayers will be sent your way for a quick procedure and speedy recovery.
    We love you!πŸ™πŸ’™πŸ˜˜

    Like

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