I know I may sound like a broken record constantly talking about my son's heart defect, but it has become my life. His health is my primary concern. My day revolves around him. He needs to eat every three hours which means I pump every two (he's too weak to breastfeed). He needs his lasix (diuretic) twice a day to keep his breathing regulated, and I need to sterilize his soother and bottle nipples constantly. Hand washing has taken on a whole new level of compulsion and we are now homebound other than doctors appointments because an illness will put him back in the PICU...or worse. He has doctors appointments every week to ensure he's still gaining weight and cardiology appointments every month. Then there is the typical care all infants need (diaper changes, sleeper changes, baths, belly button cleanings...etc) On top of all that I also have two other little ones to care for. I have to find time to make their meals, get them dressed, bathe them, brush their teeth, and put them to bed. Additionally, it's also important that I keep my house clean. Overwhelmed would not accurately describe how im feeling. It's hard.
Truthfully I have no idea how I have managed all this. I'm surprised I still have the energy to blog or write about any of it. But it's the one thing I do for myself. I have this NEED to keep a journal of this journey for my kids. I need to explain to them why I haven't been as attentive as they want or need. I know they are still young and probably won't remember mommy walking around on auto pilot, or that I couldn't play cars or dolls with them because I had to do laundry, or feed puck, or pump. But I still feel guilty about it. My kids never signed on for this. No one asked them if they wanted another sibling and a sick one at that.
So I guess what I'm trying to say, Gabe and Edie, is that i'm sorry. You two are still the other half of my heart. You are still my world. And if I could split myself into two people I would in a heartbeat. I can only hope that one day you will understand. It may take until you have children of your own, especially if Puck is sick for years to come, to understand why I have had to compromise my time with you. Please know that I don't love Puck any more than I love you two, but he requires a little more attention just to keep him healthy...to keep him alive. I'm doing all this for the benefit of our family. We need him. You deserve to have your baby brother by your side for the rest of your life. I need to keep our family whole because living without any of you would be like living without a piece of my soul.
I love all of you. More than I could ever hope to put into words and I will do anything I have to in order to ensure you all remain happy, healthy and whole.