Just need to get this off my chest

This one single entry will take the place of the therapy I probably need but can not leave my house to get. I am so afraid of sounding self-depricating because nothing annoys me more than that quality in others...

Reflecting on the past year has been a rough reality for Brett and I. I often sugar coat my blogs as I never want to come off as a complainer or overly negative. We swore we would not be victims of circumstance and I don't ever want my entries to be interpretted that way. However, the raw truth is that this is an almost impossible situation. It feels so wrong to use the word "nightmare" when referencing anything having to do with my kids but this experience truly has been one. You all know how truly, madly, deeply I love my kids but this is just not the way this was supposed to go. Right now we should have 9 month olds, not 1 year olds. We should have delivered them in anticipation, not fear. We should have all been together at our house to celebrate a double bris, not in a NICU. We shouldn't have had to wait until the last minute to know if my baby shower would be on or not because we still were so unsure if we would lose one of the boys. I should have been able to show off my big belly with pride. I should have felt my babies kick. We were supposed to take them to their first Phillies game already and spend our summer weekends with our little guys at the shore. They should be able to leave the house and play with other kids. I should be able to take them to all of the fun mommy and me classes our friends are going to. We thought we would feel some relief around their first birthday but it is still just so hard.

 I have not seen any of your faces in a very very long time. I can never leave the house unless it is for a doctor's appointment and barely know what season it is. I wear my "uniform" every day... comfy t-shirt pants and a v-neck t-shirt, black headband, glasses and no makeup... for those of you who know my normal look... this is NOT me. I am lucky to wake up at 5:30am and barely have the opportunity to eat until the boys go to sleep and by then I'm too tired. As much as Brett and our moms try, I am the single caretaker for Brody who is capable of saving his life (and I do so almost on a weekly basis). At the same time Cameron responds best to mommy with difficult feedings or calming down his overtired cries, but most of the time I need to be available to Brody so I have to deny him of that soothing mommy way that he deserves. I have given up my career that I loved so very much as well as those lovely pay/bonus checks which is very hard on many levels. I rush every shower I have taken in the past 12 months and have never closed my eyes to sleep without anxiety. I get sick every few weeks as I am so run down but I have no other option. There is no one more who is qualified to help so if I am sick unfortunately I have to expose my immune compromised kid on a ventillator to it. It is gut wrenching to think he could wind up much much more ill from my simple cold but I have no choice.

Our first house has become more of a hospital than a house but I remind myself that doesn't matter because we can't have guests anyway. I can't go out and no one can come in. I fight for hours each day with insurance companies and doctor's offices and rely on nursing that I'm often waiting to not show (except my amazing Lisa Marie and Tracey!) When I'm not on the phone screaming or crying to get my kids what they need I am researching surgeries, therapies, alternative treatments, everything shy of a witch's brew that can help them. The time that is left for them is spent giving meds, feedings (not the type your all used to, I feed my kid through a hole in his stomach), vision therapy, physical therapy, speech therapy, trach care, etc. Our days change by the minute. As soon as I'm celebrating a milestone or accomplishment more often than not the day makes a significant turn around and ends on a challenging note. I am more proud than words can describe when they do something new and never ever take it for granted, but will always have an underlying fear of what they may not do in the future. I have to believe that our family will have a happy ending but I'm just so scared of the alternative. We will be facing serious challenges for years.

I wonder when Brett and I will ever be able to leave the house together. When will we be able to go to dinner together? Laugh again, really laugh? See our friends? Share holiday dinners with family? Take a vacation...a girl can dream!

My favor to all of you is this... please don't stop calling... even if I can't call back. Please be patient with us as we are doing what is best for our kids and miss you all immensely.  Please keep the love and support coming as we get pretty lonely and sad over here at times.