Home. It felt so good to walk into my house with Reid and sit on my couch and look at my stuff and not hear monitors beeping, kids crying, nurses chatting. It was glorious. Until 30 minutes later when I had to cath Reid. The first day it took 3 people to cath it. One to hold him down and try to distract him, one to cath him, and one to hold the cup where the pee went into. This sucked. The first time the cath wasn't going in as easy as before and I starting freaking out. Was I pushing too hard, he was screaming so much I didn't know what to do. I couldn't get it in. I was ready to give up, he was sweaty and screaming, and I was on the verge of a panic attack. I couldn't do this, was this my new normal? I didn't want to do it and he hated me doing it. Finally after a few minutes of trying I felt the cath move into his bladder and pee started to come out. EXHALE. We made it, we did our first cathing outside of the hospital. It was scary but we did it, unfortunately not alone. I hate asking for help, and I needed help. Every 3 hours I needed 2 other people to help me. Luckily I have an AMAZING family who were here for me. Every 3 hours, they coordinated between themselves who was going to help me. It is so humbling even when it's your own family. The first day was the hardest. Michael and I woke Reid up at 3am to cath him and hope that it didn't wake up Parker… which it didn't. Everytime I touched Reid I would grab his diaper and hope and pray that there would be urine in the diaper. I didn't know if I could do this forever and it was wearing on me. It was difficult and he screamed so much I hated doing it. After 2 days I was able to cath him with only 2 people thanks to my amazing husband and his ability to rig stuff up that works in the oddest ways. He cut a hole in the lid of the cup that Reid's urine goes into and we were able to thread the cath through the lid so that we didn't have to hold the cup and pee wouldn't get everywhere! Thank you Michael :) I also found that if I cathed him while he was in his bath net (Reid could only be sponge bathed) it trapped his legs underneath and I could cath him myself. I was pretty flipping proud of myself. And the mirror distracted him enough to not make him scream. After cathing him for 5 days I picked him up and laid him on his changing pad for him morning cath but this time was different and life changing. HE HAD PEED IN HIS DIAPER!!! I cried. I cried and yelled for Michael and he was just as happy as I was.
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| It's adorable how much they love each other. |
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| Parker gets Starbucks when he stays at Papa and Gigi's. |
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| Two TV watchers. |
That week went by so fast. One thing that I knew I needed to do was see a therapist. After the awful time I had mentally and emotionally during our last hospital stay I knew that I needed some help. So I saw someone. It helped to talk… but they couldn't get my any medication to help during the really scary moments quick enough :(
I had created such a bubble for Reid and I that it was nice to just talk to someone new. I don't know if it was because of the new events in my life or the effect of sleep deprivation but my personality and soul changed. Ever since returning from the NICU I felt like I wasn't as socially pleasant as I used to be. It was like I had so much to worry about that societal norms went out the window. I found myself being very self centered and only talking about Reid to others and what we went through… without then asking about other people. I didn't like this, I didn't like the person that these life experiences had made me. I felt tainted. I felt as if because of all this I had a dark spot in my soul that could never be taken away or resolved. Why did this happen to me. Before all of this I prided myself on always having a positive perspective on things. Even in the worst of situations I found the silver lining. I was able to still be happy and unaltered by negativity in my life. But not anymore. Don't get my wrong my heart warmed when I looked at Reid and I truly loved adding him to our lives, but that didn't erase the emotions that I had felt. I had never felt anything like that before, I never knew what fear was until our NICU stay and then Reid's first surgery. Eventually I hope that I will be able to look back on this time in our lives and feel grateful that we made it. We made it out of this scary time and have conquered. One day.
As the week at home was coming to an end I started to get very panicky again. I was worried about Reid going under anesthesia again so quickly, but I trusted our surgeons. I was happy that this surgery was going to be performed by Dr. Sullivan who we loved. Since Reid had started peeing on his own we were hoping to be able to stop cathing him while we were in the hospital. I didn't want to think about how long we were going to stay for this surgery. I didn't want to get my hopes up about going home so I just packed for 2 weeks and was hoping to not have to request new clothes from my family. I was hoping to soak up as much Parker time as I could…. but 2 days before leaving he spiked a fever. :( This meant he had to go stay at my parents because Reid absolutely could not get sick. If he had a fever or cough during that week his surgery was going to be canceled. This would push his colostomy reversal farther back and my return to work. I was over his colostomy. I was so over him leaking out of his diapers at least once a day and up to 4 times a day on a bad day. So we had to say goodbye to Parker early and just FaceTime with him to say bye. I hated this. I hated being away from Parker. If you would have asked me when I was pregnant with Parker or Reid if Parker would even be staying at my parents house for 2+ weeks I would say you were crazy. But life throws curve balls and I am being thankful that I have such great parents to be able to take him in without a second thought and then go see him his first night back at home because they miss him. We are so lucky.
The night before leaving for Reid's surgery I couldn't sleep. I was so scared about what was going to happen during this surgery and hospital stay. I couldn't take anymore surprises. But the sun came up, and the day went on. I checked Reid into the pediatric ward and sat with him while he played in the crib. This was happening and instead of being scared and wanting to run I embraced it and decided try and make this a positive thing. Looking at the positive: Reid does not have any life threatening complications. He has an amazing team working on him and the nurses ADORE him. Everyone talks about how cute he is and regardless of if they say that to everyone, it made me feel like they really believed he was the cutest. We were lucky enough to be able to stay at the JW house again which only houses 4 families at a time. The hospital that Reid has had all his procedures at is a teaching hospital so while the residents and nurses are being taught I am learning with them. I really liked this because I think education is so important. It means that our hospital is up to date with the current research and has knowledgable surgeons to be able to teach future surgeons. Reid, he was my biggest positive. Throughout all this crap; surgeries, procedures, needles, catheters, all of it he stills smiles. He was still such a happy boy. I am most grateful for this. I think that if he wasn't as happy this would be more difficult. If I had to see him in pain and not enjoying life I would hate life as well. But he has no idea that anything is wrong with him. To him the hospital is just another place where people smile and talk to him. Sure he gets a needle prick every once in a while but he forgives quickly. So here we were waiting for surgery # 3 (really 3!)
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| Walking up to the Pedi floor. |
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| Reid kept trying to pull out his IV so he had to get a "NO NO" band to keep his hands straight. They didn't work. |
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