Some days I find myself walking through the day with blinders on, just trying to focus on the task at hand and nothing else. When people ask me how Isabelle is doing I never know what is going to come out of my mouth. Of course, I find that to be true of many conversation topics lately but in this area I am particularly unpredictable. Sometimes I say “She’s doing good!” with a smile and move onto the next conversation. Other days, like yesterday morning for example, I say “She’s ok, wish she would gain some weight and stop pulling out the NG tube. We spent last night at the ER for a second weekend in a row and I am at my wits end.” The elevator doors can’t close fast enough.
Yes, this is hard. Our lives with CHD is hard, and it isn’t going to get easier for a long time. I compare our life right now to walking through a minefield. On the outside everything looks natural. You can’t tell where the mines are and by all appearances, the field looks innocent. But you know looks are deceiving. Underneath the grass lurks a danger that you can’t predict and there isn’t a map to show you where to step. You have to go on what appears to be the right path until you step the wrong way and all hell breaks loose. All around you bombs are going off and you can see your fellow heart families losing the battle, mothers struggling with where they went wrong on their journeys. Some days I feel shell-shocked from all of the loss I see on these pages. Other days I can see the ones who have made it across the field and I retrace their steps the best I can. I know it’s possible to get there but it seems so far away right now. It’s hard to imagine myself being there because when I do I immediately have to change my thought for fear that I am jinxing our outcome.
As each day passes and she smiles more, reaches for her toys, and becomes more a part of our family, I get more afraid. I can’t breathe, my throat hurts and tears simultaneously come to my eyes. My mind goes to the What If place. I am grateful I don’t stay there very long. I take a deep breathe and push myself to step forward. The compass we have been given doesn’t exactly point to north, but we have faith that we are moving in the right direction.
Our latest trip to the ER became a new fight. After 2 hours of not seeing a soul other than people looking in watching us try to soothe her crying, found myself at the nurses station asking if anyone, ANYONE knew how to drop the tube on our baby. I don’t have any patience when I am in the minefield. After posing the question, the answer I received was “Only physicians can put an NG in.” Ok, where is the physician? “Someone will be right with you.” I am out of time, she has cried long enough. They look at me like I am crazy. I don’t care. Get someone in. Now.
The doctor who comes isn’t wearing a mask and we find out after he has already taken out his stethoscope that he has a cold. I’m speechless as he tells me the last time he dropped a tube is when he was a resident. He decided to call the neonatalogist. The calvary in the form of the nurses from the Birth unit came and in less than a minute, dropped the tube in and had it secured. The battle has been won, but we are exhausted and head home after the chest x-ray.
The fight goes on and we keep fighting for her. Chris is the level-head that keeps me from getting thrown out of these places but he is battle weary too. The truth is if I didn’t storm out to the desk, if I didn’t come out swinging, we may still be waiting for someone to see us. I run the risk of looking a lunatic, but this lunatic wants her daughter to stay alive. I don’t care if it costs me my dignity or is embarrassing. I’d rather be embarrassed than at her funeral. People think I am a tad crazy about germs, too bad. It’s either that or the alternative. Walk through this minefield with us, see the casualties that we see and then come back and tell me I am crazy.
I love my Isabelle. I love my girls and I’d be crazy if I didn’t fight for them.