10-4-2010
We'll call this entry "JK" because when the docs told us that Demetri would not need surgery on his heart until he was older due to his little leaky heart, they were JUST KIDDING, because now a week or so later, they are saying in a certain blunt and awkward tone that they "will need to do open heart surgery on Demetri this week." WTH... Now I am tired and frustrated. Just stick a fork in me, cause I am done! I was so sure that this was all about to be behind us and now another surgery. Open-heart surgery! Remember the "talk" that followed our last surgery...The "we don't think he is going to make it" talk... This is horrible!!! Back to square one: another trip and stay in the frickin PICU, possible death, loads of IV poles filled with dangerous meds, another scary, scary scar, days of horror and intubated again. This is the pits. So I guess I should switch my prayer back from "speedy healthy trip home" to "survive another second." I am allowed to say at this point that I am exhausted and so frickin mad at CDH and ASD and everything that I just wanna run as fast and as far as I can from it all. No family should have to go through this. The baby is suffering, the kids are all suffering, and Hector and I are barely hanging onto consciousness let alone our sanity. This experience gets crazier every darn day.
I am so happy for the families that we meet who all give us inspiration, prayers and love. On the other hand, I am sick of seeing them watch that darn car seat video and get to leave with their baby. Why God, why won't you just let this be fixed and let us go home.Why hasn't God forgiven us yet. I do feel forgiven and blessed every single moment that I get to spend with our angels (Isabel and Demetri) but why must we all suffer like this? Oh I remember, and now I call it our life lesson, the only one we all will ever need.... Never ask the man, the man, the G..O...D, God, never ever ask him, "What else!" Because ladies and gentlemen, he WILL show you what else in ways you can never imagine!!! For the record, I asked God "what else" just days before our 20 week ultrasound. It was something to do with $$$ and bills. Stupid! Well, he told me... he is still telling me. Guess he wants to make sure that I REALLY get it. So, again, NEVER ask God, "what else."
In the meantime, we prepare again for another round of paralytics, surgery, fear, crying, joy, thankfulness, uncertainty, etc. Today as I wonder, why us, I thought I knew the life lesson and learned from it, but I guess the real life lesson [in addition to, maybe even trumping the one above] is that NOTHING is certain, nothing ever. I love. I love a lot. And that is all I can do to try to fullfill my spirit as I let God take care of the rest. Now let's do this and get the heck home...
Friday, August 26, 2011
Friday, August 5, 2011
Sophie's Choice: good film but could have done w/o the real life experience
9-25-10 It doesn't matter that every possible awaken moment is spent as Hopkins or whether the nurses and doctors tell me to leave b/c I need a break too, I can't get enough of the little guy and I can't help feeling disgusted by the fact that I am not the baby's primary care giver. I am like an extra special guest or visitor to him. It's degrading, as a self respecting mother, to leave your child at the end of everyday, or call and check on you child as someone else cares for him, especially when he is sick! When Isy is sick, I do not leave her side. Wouldn't think of it, but I am force to leave him.
Speaking of Isy, the love of my life and best friend, I have had to leave her too. Can someone say, SOPHIE'S CHIOCE! I have an amazing sister in law, who has made my life a million times easier this summer by taking awesome care of my angel girl, but that doesn't change the fact that my angel girl is not with me. I hate this SO much it stinks!
I guess my reason for this nagging entry is that I am leaving the Children's House this week. No more will I be steps away from my son. I must return to Frederick. I have to get back to some normalcy. I must return to my daughter. But returning to my daughter means leaving my son and it hurts like hell. LOL, and what am I talking about "normalcy"!? I will get home to Isabel and start to prepare her for 1st grade, but not without making a trip to this hellish city [a city I truly adore, its just hot, humid and dangerous here right now] everyday, at least once a day and sometimes twice. My plan is to get Isabel and Jared on the bus and then head straight to Baltimore, visit the baby, then make it home for the bus by 4pm, and then some nights return after I get Isabel to bed at 8. This will get me back to the hospital around 9:30. And then I will head back to Frederick around 12am. But on school days (Mondays and Thursdays) I will take them to the bus, get to the hospital by 10ish, leave for class around 12, get done with classes at 10:45pm, catch a cab back to Hopkins and sit with baby until about 12am and then drive home...Guess I won't see Isy on those nights. But I promise her that I will climb right in her bed to snuggle when I do make it home on my school nights. Another thing not normal about all this is the frickin $$$. Gas! I shall say no more.... but I will....eating every meal downtown...and not hood downtown where one can get some slammin chow!!!, no we are talking university downtown...where apparently someone hasn't gotten the memo that us college kids...especially JHH students are BROKE!!!... and in addition to the food and gas, there is parking. I have to park my car and pay for 12 hours of parking everyday and then take a cab back and forth to school which also costs about $20 a day. Regradless, its time for me to go home.I must prepare for the little man to come home! Not that anyone has breathed a word of such nonsense.... however, if the lord allows,Demetri will continue to heal and be home soon, snuggling with me and Isabel!
In the meantime we are still in this up and down, up and down world. Residents have moved on, meds have disappeared!, reappeared, and disappeared again. I am starting to get a little pushier with the docs because, though I respect them, I am the mom... Therefore, I AM THE BOSS! Ha! Who am I kidding! Demetri is the boss, and that is the Golden Rule these days!
Tomorrow will be a blessed awesome day, if you are willing Demetri! Isabel has picked a book to read to you as she courageously holds your precious little body still covered in cords. I can't wait!
Speaking of Isy, the love of my life and best friend, I have had to leave her too. Can someone say, SOPHIE'S CHIOCE! I have an amazing sister in law, who has made my life a million times easier this summer by taking awesome care of my angel girl, but that doesn't change the fact that my angel girl is not with me. I hate this SO much it stinks!
I guess my reason for this nagging entry is that I am leaving the Children's House this week. No more will I be steps away from my son. I must return to Frederick. I have to get back to some normalcy. I must return to my daughter. But returning to my daughter means leaving my son and it hurts like hell. LOL, and what am I talking about "normalcy"!? I will get home to Isabel and start to prepare her for 1st grade, but not without making a trip to this hellish city [a city I truly adore, its just hot, humid and dangerous here right now] everyday, at least once a day and sometimes twice. My plan is to get Isabel and Jared on the bus and then head straight to Baltimore, visit the baby, then make it home for the bus by 4pm, and then some nights return after I get Isabel to bed at 8. This will get me back to the hospital around 9:30. And then I will head back to Frederick around 12am. But on school days (Mondays and Thursdays) I will take them to the bus, get to the hospital by 10ish, leave for class around 12, get done with classes at 10:45pm, catch a cab back to Hopkins and sit with baby until about 12am and then drive home...Guess I won't see Isy on those nights. But I promise her that I will climb right in her bed to snuggle when I do make it home on my school nights. Another thing not normal about all this is the frickin $$$. Gas! I shall say no more.... but I will....eating every meal downtown...and not hood downtown where one can get some slammin chow!!!, no we are talking university downtown...where apparently someone hasn't gotten the memo that us college kids...especially JHH students are BROKE!!!... and in addition to the food and gas, there is parking. I have to park my car and pay for 12 hours of parking everyday and then take a cab back and forth to school which also costs about $20 a day. Regradless, its time for me to go home.I must prepare for the little man to come home! Not that anyone has breathed a word of such nonsense.... however, if the lord allows,Demetri will continue to heal and be home soon, snuggling with me and Isabel!
In the meantime we are still in this up and down, up and down world. Residents have moved on, meds have disappeared!, reappeared, and disappeared again. I am starting to get a little pushier with the docs because, though I respect them, I am the mom... Therefore, I AM THE BOSS! Ha! Who am I kidding! Demetri is the boss, and that is the Golden Rule these days!
Tomorrow will be a blessed awesome day, if you are willing Demetri! Isabel has picked a book to read to you as she courageously holds your precious little body still covered in cords. I can't wait!
Monday, August 1, 2011
Some Smiles & Welcoming L!
9-15-2010 What a glorious day! After two days more of putting my beautiful son through hell, we now have word that his brain and heart are working pretty good. I have been well trained now, like batman style training, (harsh!), to follow statements like, "brain and heart are working pretty good", with the very specific phrase, "FOR NOW"... Because I officially know now that everything can change in seconds. But I can't help but think, despite my hardening/realist training, that everything is going to be just fine. Days like this bring the spark back into my eyes. I do know that we have a looooooong road ahead but you, my dear boy, smiled today!!! They have all said that you have smiled before. Hard to believe with all the withdrawing and sedation and sickness and poking and pronging, but they say you have (nurses and daddy). I know that today you smiled at me, and you weren't even terribly stoned. Stop now, whomever may read this. Please pause and really think about how awesome and how life altering, one tiny little smile can be. LOOK and STOP, for just a minute and think about someone you love and how awesome being able to see their smile anytime is. To my babies, smile at yourselves...You have made it through hellish circumstances. Smile every second you have here. Back to the present...Demetri, you smiled such big beautiful and meaningful smile at me today. What a sight! You must know (with all intentions that you and your sister will read this someday), that I literally worship you two. You both are my entire being, my desire for being, and under the worst of cases, you are the root of my desire for not wanting to be as I could simply not "be" without you two. Thank you both for smiling, you Isy, every single day simply because you know it makes mommy happy, and Demetri, thank you dear for this first smile, this first smile being your way of preparing me for a long lifetime more to come. I love you both.
Another CDH baby was born tonight. To see things happen from this end was overwhelming to say the least. I saw Sam and other transport nurses and RT running out of the NICU and felt more mumble-jumble than ever before. Happy and joyful-there is a baby being born...Sick-that baby has a CDH....I wanted to break through those labor and delivery doors and hug and squeeze those parents and foresee and withdraw all of the pain that I knew they were about to face. Crap. But that wasn't happening, b/c 1. everyone would assume that I had finally lost it...and 2. I may not be able to visit my SMILING boy anymore. Instead, I will pray, pray and pray some more for that family and their new baby. I will pray that they be granted the strength that we have all been granted.
Speaking of strength, your father Demetri, that big brown thing that apparently has ants in his pants b/c he cannot sit in here for more than ten minutes, but yet he can't sit in the waiting room for more than ten minutes, oh and yet he can't walk around for more than ten minutes because then he starts wondering about you again. Yeah, that guy, he is the biggest, baddest warrior ever. This is part of where you get it from..you are strong like him...Mostly from me though. lol.Your father, no matter how much of a fricken handful he can be, is a true warrior. With that other CDH baby being born tonight, made me think a lot about the night you were born. When I pushed you into this glorious world, I couldn't hear you or feel you but I saw your beauty. Oh God what beauty. Then you were ripped away with great intensity. Horrifying but lovely. Now look at you!!! You are one tough cookie. I love you and your equally as strong sister with all my heart and body and pray that the lord have mercy and allow us a long life together on this earth. You get to go into a crib!!!! For the first time!!! Amen! Can't wait to come back to see you tomorrow.
Update: That CDH baby born on 9/15 and his awesome family turned out to be just as blessed and as strong as Demetri and our family. The two, Demetri and his buddy L, spent months upon months moving about Hopkins together and even slept just feet away from one another in some of their most turbulent weeks in the PICU. Demetri and this CDH pal are today BFF's and are planning their first play date since attending NICU graduation together. And to his mommy, I love you girl, and could not have made it through this year without you.
Another CDH baby was born tonight. To see things happen from this end was overwhelming to say the least. I saw Sam and other transport nurses and RT running out of the NICU and felt more mumble-jumble than ever before. Happy and joyful-there is a baby being born...Sick-that baby has a CDH....I wanted to break through those labor and delivery doors and hug and squeeze those parents and foresee and withdraw all of the pain that I knew they were about to face. Crap. But that wasn't happening, b/c 1. everyone would assume that I had finally lost it...and 2. I may not be able to visit my SMILING boy anymore. Instead, I will pray, pray and pray some more for that family and their new baby. I will pray that they be granted the strength that we have all been granted.
Speaking of strength, your father Demetri, that big brown thing that apparently has ants in his pants b/c he cannot sit in here for more than ten minutes, but yet he can't sit in the waiting room for more than ten minutes, oh and yet he can't walk around for more than ten minutes because then he starts wondering about you again. Yeah, that guy, he is the biggest, baddest warrior ever. This is part of where you get it from..you are strong like him...Mostly from me though. lol.Your father, no matter how much of a fricken handful he can be, is a true warrior. With that other CDH baby being born tonight, made me think a lot about the night you were born. When I pushed you into this glorious world, I couldn't hear you or feel you but I saw your beauty. Oh God what beauty. Then you were ripped away with great intensity. Horrifying but lovely. Now look at you!!! You are one tough cookie. I love you and your equally as strong sister with all my heart and body and pray that the lord have mercy and allow us a long life together on this earth. You get to go into a crib!!!! For the first time!!! Amen! Can't wait to come back to see you tomorrow.
Update: That CDH baby born on 9/15 and his awesome family turned out to be just as blessed and as strong as Demetri and our family. The two, Demetri and his buddy L, spent months upon months moving about Hopkins together and even slept just feet away from one another in some of their most turbulent weeks in the PICU. Demetri and this CDH pal are today BFF's and are planning their first play date since attending NICU graduation together. And to his mommy, I love you girl, and could not have made it through this year without you.
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