Monday, October 28, 2013

How I'm REALLY doing

I try really hard to keep a completely positive attitude on this NICU journey with Chase. I try to be strong for him, and have a positive outlook. I hesitate to share bad news, and try to hang onto enthusiasm over the baby steps in the right direction for as long as possible because sometimes I don't know when the next little bit of progress will come along to rekindle that fire.
Last night, in the car on the way home after some pretty bad news my mom told me it's OK to be real. I said I was afraid if I allow myself to be negative then more negative things would happen. I'm not trying to be negative, but for just one moment... one blog post... I need to be real.

Sometimes I hate it when people ask how I'm doing. I know everyone means well, and really I'm touched by how much support and genuine care people have shown our family through everything. But...I went through three years of infertility, planned a perfect home birth I was excited about, was excitedly counting down the days until my baby would be born at home, spent YEARS making every little decision, only to have all of that go down the drain. Now I sit by an incubator and watch a monitor full of numbers pleading with God  that this tiny miracle might remember to breathe a little better tonight than he did last night, pleading that none of the flashing numbers dip down again that hour, knowing that if they do my skin-to-skin time will be cut short as they assess him and determine if his care regimen needs to change. I wake up every hour through the night, hoping that he's OK, knowing that a bad news phone call could come in at any given time. My phone ringing is all it takes to make MY heart stop beating, my body to break into a nervous sweat, and my mind starts racing. How the Hell do you THINK I'm doing? I'm a new mother separated from my newborn. My baby is in NICU. I'm not OK, and I won't be until he's strong, healthy, and home.

Sometimes, I'm angry. I'm angry that my baby has to get poked and prodded every day. I'm angry that he has to go through tests, blood transfusions and exams every day. I'm angry that his little body looks battered and bruised from all the needle pokes. I'm angry that he is so bothered by all the things taped to his body all the time. I'm angry that he's not home in mama's arms, which is the ONLY place new babies belong. I'm angry that I have to ask permission to hold my own baby. I'm angry that I don't always understand exactly what's going on and what is best for him. I'm angry that I didn't get to spend those first few minutes of his life with him, as I was knocked out and he was rushed off to NICU. I'm angry that we can't be together all the time. I'm angry that he gets a revolving door of nurses rather than a team that gets to know him. I'm angry at my body for not cooperating, for letting this happen, for failing him. I'm angry my c-section isn't healing properly. I'm angry that the pain involved makes it unsafe for me to drive, and that I'm so reliant on rides and other people.

Sometimes I'm sad. My heart breaks for him every time he has to go through yet another traumatic experience. He's only three weeks old and he's been through way too much already. I'm sad that I can't protect him from all this. I'm sad that I am missing out on so much because I can't be at the hospital 24/7. I'm sad that he's in pain.

Sometimes I'm afraid. I'm afraid of infections. I'm afraid of him getting sick. I'm afraid of feeding issues. I'm afraid of apnea. I'm afraid of brady spells. I'm afraid of all the things that keep babies reliant on machines for longer, which in turn keeps them in the hospital longer. I'm afraid of RSV, I'm afraid of the flu. I'm afraid of making wrong decisions and him suffering for it. I'm afraid of letting him down and I'm afraid of not being good enough.

So, when you ask me how I'm doing, and I tell you I'm fine... know that it's a lie. It's a big fat lie. I'm going to continue saying it, in hopes that it eventually becomes the truth. I'm going to keep trying to be positive, and I'm going to continue to have faith it will all eventually turn out OK. I'm going to continue believing that Chase will come home strong and healthy someday, and I'm going to keep dreaming of the day I can hold my son and not stare at the flashing numbers on the screen to know when he needs help breathing. I won't allow the anger, sadness, and fear completely take over... but they are always there, sometimes in the back of my mind, and sometimes front and center.

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