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Monday, October 31, 2011
Arent kids supposed to be happy to get dressed for Halloween?
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Sunday, October 30, 2011
Cams such a big
Love. Amazing kid!
Cam LOOKING at Snow for the first time! Tears.
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Cam LOOKING at Snow for the first time! Tears.
- Posted using BlogPress from my iPhone
Friday, October 28, 2011
Thursday, October 27, 2011
Poop on the bed
10pm Cameron Sleeping in my arms on new sheets after waking up writhing in teething pain just like he has every night for the last week and amidst a diaper change turned around and sat his poopy toosh on my crisp linens. Lovely!
Things are getting better with the kids health in general. Brody is on room air most of the day now which is huge. He has never breathed room air in his 13 months of life. His gross motor skills are really coming along and he is getting so strong. Sitting ip by himself but still a little weeble, lotta wobble. He has had some frustrating delays with mechanical malfunctions causing problems for his developmental prepgression (ie ill fitting trachs causing an array of other therapeutic problems) but we are doing our best to work through them. All in all doing awesome. He has two teeth on the bottom in the front that are making him super uncomfy. Tracy ( his daytime nurse/BFF) has introduced him to the peanut butter jelly song... He's obsessed
Just learned that Brody will also need glasses... For very different and much les severe issues than Cameron. He has astigmatism but we will not be getting lenses until he hopefully gets his trach out in the spring. Just what the poor kid needs is more plastic!
Brody taking in a good book
Teaching him how to take what he wants
Cameron doing just that
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Things are getting better with the kids health in general. Brody is on room air most of the day now which is huge. He has never breathed room air in his 13 months of life. His gross motor skills are really coming along and he is getting so strong. Sitting ip by himself but still a little weeble, lotta wobble. He has had some frustrating delays with mechanical malfunctions causing problems for his developmental prepgression (ie ill fitting trachs causing an array of other therapeutic problems) but we are doing our best to work through them. All in all doing awesome. He has two teeth on the bottom in the front that are making him super uncomfy. Tracy ( his daytime nurse/BFF) has introduced him to the peanut butter jelly song... He's obsessed
Just learned that Brody will also need glasses... For very different and much les severe issues than Cameron. He has astigmatism but we will not be getting lenses until he hopefully gets his trach out in the spring. Just what the poor kid needs is more plastic!
Brody taking in a good book
Teaching him how to take what he wants
Cameron doing just that
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Wednesday, October 19, 2011
Good things
Brody is home from the hospital and on just room air during most of his awake hours! And Cameron has a second tooth and is climbing the stairs! I repeat... Must baby proof immediately.
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Monday, October 17, 2011
Friday, October 14, 2011
CHOP
Brody was having tummy issues and we were scared that his diaphragmatic hernia or his yeast was back so we decided to finally make the switch to CHOP. we could not be happier with our decision. It's hard enough having sick kids, why subject ourselves to the environment we were in at St Chris on top of it all. It is absolutely beautiful here... And clean! Everyone smiles and really hears you when you speak. They all love the munchkin cause he's the cutest ever. He will definitely be here until early next week as we try to uncover what the source of his current issues are. He's a work in progress but he's happy and thriving... Just in need of another tune up.
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Tuesday, October 4, 2011
The love of a mother
For once I'm not talking about how the boys situation affects me... Im speaking of the often undermentioned grandmothers who I COULD NOT do this without. El and Jude are here every waking minute of every day to love, hug, feed, get puked on my whichever child I am not with. They work so very hard to carry out my parenting wishes with their grandsons and expect no thanks or apologies. They are the only two people on this earth who the boys respond to as a substitute for mommy and live, breathe,and sleep these children. It gets pretty tense around here... Lots of fun watching them grow but a very stressful environment but they just keep on working to make my life easier without complaint. When they are not here they are running errands for this household. They are my salvation and I want to give a formal long overdue thank you from all of us for loving Brody and Cameron unconditionally and sacrificing so much to make this easier for Brett and I.
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- Posted using BlogPress from my iPhone
Sunday, October 2, 2011
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.
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.
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