I can't believe I've had this blog for only a few weeks and I'm already slacking with how often I post!I am uber exhausted.I work in retail (for those of you who don't know) for a prominent costume jewlery chain.I don't want to mention the name since this is the interwebz and all.They have been short handed at one of our sister stores,so I've been helping out.The store is in complete disaster,so I've been on edge and stressed out all week.
However,I thought I'd write a few positives since I didn't have time to throw together an actual journal-type entry.I actually ended up with a surprise weekend off!I was on call for the sister store saturday for a few hours in the morning,and they ended up not needing me.The last time I had a Saturday and Sunday off together was when I went on leave when Adria passed away.
I also got to hang out with my amazing grandparents today,and my grandma made the most delicious spiral ham.
I'm also thinking of a new hobby.My mother makes hand wire-crocheted jewelry,and I am thinking of partnering with her and making my own line.Something more steampunk/geek chic vs.her more traditionally elegant,together in one shop.Wish me luck!I'll be back later this week with a more substantial post when I'm more rested!
Sunday, January 22, 2012
Wednesday, January 11, 2012
This day last year.
This day last year was all around horrible.This year,I think about last year's events and feel lucky that I had the time with Adria that I did;and how it could have been so much shorter.
I was at home for my one full day a week that I would go home.Adria had been stable and there had been no issues,so I wasn't worried (at least not more than usual).I called in the morning for my update,and the nurses(one of her regulars) said she was doing ok;but was a little swollen and would probably need another chest tube put in.As crazy as it sounds,she had so many chest tubes put in and taken out that I just said "ok,go ahead,put in the chest tube" without a worry.They put in the chest tube,it went fine, and she seemed to get better at first.I called again in the early afternoon and they let me know she was having a rough day,and wanted to give her extra sedation and let her sleep.I said that was fine,she needs her rest.I called again around 5:30; and they said she was still not doing well but (in the doctor's words) it was "not a major setback".
Fast forward not even 20 minutes later, maybe 5:48 pm,and my husband is just walking in the door from work so we can get ready to go back up to Boston.Another doctor calls me and tells me that she coded and there's a possibility she may need ECMO again (ECMO,in simple terms,is an extremely invasive bypass machine that helps to oxygenate the body when the body can't do it on its own),and do we want to take those extrodinary measures?It is unthinkable how fast things can change when your child is sick.A minute can change everything.
Luckily,as sick as Adria was (they told us that night she would likely not make it through the night),she managed to somehow pull through it,without needing ECMO.It was a long road to get her back to being herself,and took alot of physical therapy and help from all the doctors and nurses,but she got better.I got another 8 wonderful months with her,when I could have lost her that day on her 4 month birthday.I'm so thankful that I had some time to know her and watch her grow.
On a separate note,there is a fellow baby-loss mama that I have gotten to know over the past few months(Hi Kelly!).On this day last year,around the same time that Adria coded,she lost her almost 2 month old son, Adam.I am lighting a candle in Adam's memory tonight.I know that he and Adria are taking good care of each other.
I was at home for my one full day a week that I would go home.Adria had been stable and there had been no issues,so I wasn't worried (at least not more than usual).I called in the morning for my update,and the nurses(one of her regulars) said she was doing ok;but was a little swollen and would probably need another chest tube put in.As crazy as it sounds,she had so many chest tubes put in and taken out that I just said "ok,go ahead,put in the chest tube" without a worry.They put in the chest tube,it went fine, and she seemed to get better at first.I called again in the early afternoon and they let me know she was having a rough day,and wanted to give her extra sedation and let her sleep.I said that was fine,she needs her rest.I called again around 5:30; and they said she was still not doing well but (in the doctor's words) it was "not a major setback".
Fast forward not even 20 minutes later, maybe 5:48 pm,and my husband is just walking in the door from work so we can get ready to go back up to Boston.Another doctor calls me and tells me that she coded and there's a possibility she may need ECMO again (ECMO,in simple terms,is an extremely invasive bypass machine that helps to oxygenate the body when the body can't do it on its own),and do we want to take those extrodinary measures?It is unthinkable how fast things can change when your child is sick.A minute can change everything.
Luckily,as sick as Adria was (they told us that night she would likely not make it through the night),she managed to somehow pull through it,without needing ECMO.It was a long road to get her back to being herself,and took alot of physical therapy and help from all the doctors and nurses,but she got better.I got another 8 wonderful months with her,when I could have lost her that day on her 4 month birthday.I'm so thankful that I had some time to know her and watch her grow.
On a separate note,there is a fellow baby-loss mama that I have gotten to know over the past few months(Hi Kelly!).On this day last year,around the same time that Adria coded,she lost her almost 2 month old son, Adam.I am lighting a candle in Adam's memory tonight.I know that he and Adria are taking good care of each other.
Monday, January 9, 2012
5 Months
Today makes 5 months that Adria left us to go to heaven.
I don't really have much to say today,but I'll leave you with a quote that I rediscovered last night in one of my old Mortuary books.
"When we bury the old, we bury the known past, the past we imagine sometimes better than it was, but the past all the same, a portion of which we inhabited. Memory is the overwhelming theme, the eventual comfort.
But burying infants, we bury the future, unweildy and unknown, full of promise and possibilities, outcomes punctuated by our rosy hopes. The grief has no borders, no limits, no known ends, and the little infant graves that edge the corners and fencerows of every cemetery are never quite big enough to contain that grief. Some sadnesses are permanent. Dead babies do not give us memories. They give us dreams."
--Thomas Lynch, from The Undertaking:Life Studies from the Dismal Trade
I don't really have much to say today,but I'll leave you with a quote that I rediscovered last night in one of my old Mortuary books.
"When we bury the old, we bury the known past, the past we imagine sometimes better than it was, but the past all the same, a portion of which we inhabited. Memory is the overwhelming theme, the eventual comfort.
But burying infants, we bury the future, unweildy and unknown, full of promise and possibilities, outcomes punctuated by our rosy hopes. The grief has no borders, no limits, no known ends, and the little infant graves that edge the corners and fencerows of every cemetery are never quite big enough to contain that grief. Some sadnesses are permanent. Dead babies do not give us memories. They give us dreams."
--Thomas Lynch, from The Undertaking:Life Studies from the Dismal Trade
Saturday, January 7, 2012
A different kind of "about my daughter"
I have observed in myself that when speaking about my daughter,I tend to quantify large bits of her life with medical terminology.Procedures, surgeries, blood draws, lab results , endless IV's , tubes and wires.
So today,I have decided to express here that she was SO much more than this by making an entry with (most) of the medical jargon unattatched.
Adria was completely bald when she was born.I remember thinking "I wonder when her brown hair will start growing".I never really thought she'd have any other hair color.When she was maybe a week old,I remember telling my husband she had red eyebrows.He thought I was crazy and didn't really see it.By the time she was maybe 2 months old,she had a pretty good amount of dark strawberry blonde hair.When I think about her hair color,it makes me happy and sad at the same time.It was breathtaking.It makes me sad that it was probably a one time deal,since red hair is a reccessive trait.If we were to have another child with the same haircolor,I would definitely feel like it's a way that she's saying hello to us.
Her personality and perservereance for someone so sick amazed me on a daily basis.She knew her nurses very well and was very aware of what went on in her room.She didn't like new or unfamiliar nurses,and they would get what everyone fondly called the "stink eye".She was very popular on the unit;everyone knew her since she was there for so long.The nurses and doctors liked to "chat" with her when she would sit up in her bumbo chair(and subsequently fall asleep in it).She was so strong and stubborn.Once she discovered her hands,I can't even count how many times she tried to rip out her n-g (nasogastric) tube.I would redirect her and every time she'd go back to the damn tube.I would also like to clarify that although she was sick;she was also happy.She did not spend her entire life miserable or in pain.We had happy times and smiles along with the days of utter hell.
Adria was truly a one of a kind.That is one place where her medical isses and personality come together.Many of the issues she faced were anomalies-they had been seen never or rarely by doctors at one of the top hospitals in the country.
I am overwhlemed at the amount of love and personality and beauty that could be held in such a small person.She was magnetic to those around her.I miss her so much.
So today,I have decided to express here that she was SO much more than this by making an entry with (most) of the medical jargon unattatched.
Adria was completely bald when she was born.I remember thinking "I wonder when her brown hair will start growing".I never really thought she'd have any other hair color.When she was maybe a week old,I remember telling my husband she had red eyebrows.He thought I was crazy and didn't really see it.By the time she was maybe 2 months old,she had a pretty good amount of dark strawberry blonde hair.When I think about her hair color,it makes me happy and sad at the same time.It was breathtaking.It makes me sad that it was probably a one time deal,since red hair is a reccessive trait.If we were to have another child with the same haircolor,I would definitely feel like it's a way that she's saying hello to us.
Her personality and perservereance for someone so sick amazed me on a daily basis.She knew her nurses very well and was very aware of what went on in her room.She didn't like new or unfamiliar nurses,and they would get what everyone fondly called the "stink eye".She was very popular on the unit;everyone knew her since she was there for so long.The nurses and doctors liked to "chat" with her when she would sit up in her bumbo chair(and subsequently fall asleep in it).She was so strong and stubborn.Once she discovered her hands,I can't even count how many times she tried to rip out her n-g (nasogastric) tube.I would redirect her and every time she'd go back to the damn tube.I would also like to clarify that although she was sick;she was also happy.She did not spend her entire life miserable or in pain.We had happy times and smiles along with the days of utter hell.
Adria was truly a one of a kind.That is one place where her medical isses and personality come together.Many of the issues she faced were anomalies-they had been seen never or rarely by doctors at one of the top hospitals in the country.
I am overwhlemed at the amount of love and personality and beauty that could be held in such a small person.She was magnetic to those around her.I miss her so much.
Tuesday, January 3, 2012
So it begins.
I have been mulling about deciding whether or not to create a blog for quite a while.I first had the idea while I was staying up in Boston with Adria,and kept not doing it for the fact that I almost never finish what I start.
I decided to say screw it and just start writing;and hope the result is at least readable and entertaining.And if it can't be that,I hope it will at least have some theraputic value for myself.
I have been having the same thought for some time now,and I think it will feel good to get it written down.
Some people know that I was an impatient at the hospital that Adria ended up passing away at.She was at Boston Children's until May of 2011,and we were then transferred to Connecticut Children's Medical Center,since Boston couldn't really do anything more helpful at that point and she was stable.
I was a patient at CCMC when I was 14 years old.I had Gallstones,something horrible.I kept telling my doctor I thought I had them.He laughed in my face and said "14 year olds DO NOT get gallstones.You DO NOT have gallstones".The short version of the story(because the long one will bore you to death):My gallbladder burst.I had stones migrate into my stomach,spleen,and pancreas,and fluid built up in my lungs from all the excess lyphatic fluid in my body.I coded in the ambulance due to toxic shock.I was rescusitated back to life,but things looked grim.They told my mother she should think about making funeral arrangments,because at this point they still hadn't tested me for gallstones and couldn't figure out why all my organs were starting to fail.I ended up getting acute (and later chronic) pancreatitis,and type 1 diabetes due to the extensive damage to my pancreas.I spent 3 and a half months of my life in that hospital in the summer of 1996.
And I was back,15 years later,in the same ICU.For another 3 months,with my daughter.
I sometimes wonder if the universe meant to take me,15 years ago,and somehow got distracted.When it/whomever came back to complete its task,the wrong person was in the hospital bed-my daughter.
I have thought about this so many times,and I just can't shake it.I hope writing it down makes it leave my mind,if only for a short while.
I decided to say screw it and just start writing;and hope the result is at least readable and entertaining.And if it can't be that,I hope it will at least have some theraputic value for myself.
I have been having the same thought for some time now,and I think it will feel good to get it written down.
Some people know that I was an impatient at the hospital that Adria ended up passing away at.She was at Boston Children's until May of 2011,and we were then transferred to Connecticut Children's Medical Center,since Boston couldn't really do anything more helpful at that point and she was stable.
I was a patient at CCMC when I was 14 years old.I had Gallstones,something horrible.I kept telling my doctor I thought I had them.He laughed in my face and said "14 year olds DO NOT get gallstones.You DO NOT have gallstones".The short version of the story(because the long one will bore you to death):My gallbladder burst.I had stones migrate into my stomach,spleen,and pancreas,and fluid built up in my lungs from all the excess lyphatic fluid in my body.I coded in the ambulance due to toxic shock.I was rescusitated back to life,but things looked grim.They told my mother she should think about making funeral arrangments,because at this point they still hadn't tested me for gallstones and couldn't figure out why all my organs were starting to fail.I ended up getting acute (and later chronic) pancreatitis,and type 1 diabetes due to the extensive damage to my pancreas.I spent 3 and a half months of my life in that hospital in the summer of 1996.
And I was back,15 years later,in the same ICU.For another 3 months,with my daughter.
I sometimes wonder if the universe meant to take me,15 years ago,and somehow got distracted.When it/whomever came back to complete its task,the wrong person was in the hospital bed-my daughter.
I have thought about this so many times,and I just can't shake it.I hope writing it down makes it leave my mind,if only for a short while.
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