I'd like to think we've handled this with grace. I'd like to think we've done a pretty good job of making choices, getting up each day, of looking at our son with an open chest, of still trying to see our daughter. I'd like to think, under the circumstances, we've done pretty ok. I don't cry every day, I try my very hardest not to complain, I try my very hardest not to be jealous or envious. I try my very hardest not to ask God "Why" all the time, because truth is, He doesn't owe me crap. He's God.
So why is it that the thought of sending us home with a g-tube pushes me over the edge?
I can't even type up how this all makes me feel without sounding like I'm straight up complaining. I can't even begin to tell you why it would mean so much to me to breast feed, especially in a culture that devalues it. Already we are facing huge odds. Already we are working against tubes and feedings and the threat of weight loss. Already we have come through a major heart surgery. And this just the start.
I am terrified of going home, because this all doesn't stop here. We have to learn CPR, have to know and practice how to give him his medications, have to know when his oxygen saturation levels have dropped, how to watch his breathing. Plus we will be back with our lovely beautiful toddler who likes to be part of everything. (I can see it now, "No Ellie, don't touch your brothers feeding tube") Let's add to this that next month my husband will be gone for two weeks. While I'm not working. While I have our heart baby home. With our toddler.
I am overwhelmed.
And we have choices to make. Big choices. Yes, no, what should we do. I wish this was easier, I wish there was a magic button. I wish my son could nurse at my breast and cuddle and snuggle and not have a freaking tube shoved down his esophagus or inserted into his stomach. I wish that when we went home it could be done.
I am terrified that people will think home means ok. It doesn't. It just means we are home and I become a nurse as well as a mom and a wife and sister and Maddie feels like she will be lost in there somewhere.
Tonight I want to break things. I want to smash glass, or drive along Skyline Drive, or have a beer, or paint, or anything else. What will I do? I will pump. Again. Even though my milk will not be enough calorie intake for my baby, and I will sleep, and I will go back to the hospital, again, and I will hold him while he THROWS up, violently from withdrawal, while machines beep, while I can't walk away more than a foot with him, while I will try again and again to put his socks on so that the pulse ox doesn't go off. I will ask the nurses for water, constantly, I will watch and re-watch the same movies. I will watch life go by outside on the window and I will live for the texts and pictures I get of Ellie. I will put him to my chest and see if he is interested in nursing again, knowing that as the week has gone on, he has become less and less interested...I can see him starting to hate anything put to his mouth. Hello oral aversion.
I have clenched and un-clenched my fists today. Ground my teeth together. Called my incredibly supportive Mom and wanted to hear the logical voice of my Mother in Law and my Daddy. I have wondered if my push to breast feed is selfish...if I'm the one holding my family back from being together because I want this so badly. Look, I get it, fed is best. I want this for my son. I want him to feel like a normal little baby who can eat from his mouth. This one thing. I want this for him. More than I can tell you.
I have tried to be graceful about what God has given me. Worked so hard to accept things, to let Him lead us and to guide us. Have prayed and prayed, begged, knowing that the first three years of Dean's life will never be normal. A g (gastronomy) tube makes me feel more than defeated.
It makes me feel like I have failed. Like what I'm doing is not enough.
Like I should quit. Accept that he won't nurse, and that it would be "better" to "just" give him formula and quit pumping and forget about the crap tons of oatmeal I eat to help milk production and just do whatever. Because we are told to accept that doctors know what's best, always...and god help you in you disagree.
They don't tell you about this part when you are diagnosed with HLHS. They tell you "yeah, it'll be hard" and "yeah you should try to breast feed" but the truth is...it harder than hell. The truth is you have to fight like mad to get them to lay off feeds so that your baby will be hungry enough to nurse, knowing the whole time that if your baby starts to lose that's not good news. They don't tell you that when you see your baby after surgery laying there with a piece of cellophane looking thing over their open beating heart, that your child looks dead. Pale and immobile and dead. With wires and tubes and it's the scariest crap you've ever seen and no matter what, you can never ever get that image out of your head...
I want what's best for my son AND my family. I want to give him the world and all the things that his sister got to do, knowing that he might never get to do those things.
Choices. Big huge hard choices that are making me sick to my stomach...that make me cry...that make me call my Mama, who I have to assure instantly that nothing is wrong because she can hear in my "Hey" that something is off.
I don't want opinions unless I ask. I don't want to be told how this is happening for a reason, I don't want to be told how God will use this, I don't want to hear those things right now. I want to be told that you're sorry. That you know no baby should have to go through all this madness just so they won't die. I want to hear you tell you that you couldn't do this. I want to be told that it's ok for me to be so angry tonight that I can't sleep or talk nicely to two thirds of the world. I want to be told that it's ok that I see other babies in their mama's arms without tubes and wires and things and I want to scream. Clench and un-clench. Deep shuddering breaths. Fear and Joy and emotions and crying. And thoughts going round and round in my head...
I promised myself to write about our journey. The good, the bad, the ugly. The days when I have faith and the day when my wells feel dry and I just want someone to listen to me cry. The days when I feel hopeful and the days when I'd rather be anywhere else doing anything else.
I can feel this storm in me brewing, welling up, threatening to burst. Trust me, I'm not holding back from it, I am trying to bring it forward, because afterwards, on the other side, I just want to feel the sunshine in my soul.
I feel like I'm past a breaking point.
I just feel worn down.
And I'm tired of these choices.
I just wish this could be easier.
I just wish I could break things.
Clench and un-clench.
Deep shuddering breaths.
Tomorrow is not today.
And today is almost done...
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