God I'm so nervous. Aurelia has been in surgery for two hours now, the first being spent with anesthesia and this last having her chest open, tubes and lines placed, and getting through her scar tissue. Reports from the team are positive so far, but I cannot fathom how Aurelia endures this. I cry thinking about how strong and determined she has to be, without choice, in order to live. I would do everything and anything to take this burden from her, to let her live without this pain and trauma.
I know some people believe that young children do not remember events such as these, but I believe they do. I believe that any person, no matter how young, remembers these traumatic events and that they are imprinted, that their development as people is changed forever. I don't fear these difficulties impeding Aurelia's development and personality, but rather I think the courage and strength and happiness she shows now will only be magnified, increasing as she ages, as these traits have served her best today and so far.
When she comes back from surgery Aurelia will have a number of lines placed in her body. She will have a chest drain, an arterial line, pacing lines, foley catheter, and an IV. Her chest will hopefully be closed, packed, and covered. Our primary concern then will be two fold (if all else goes well): will Aurelia's smaller left ventricle be capable of pumping blood for her entire body without assistance and will her heart's electrical tissue be damaged, requiring a pacemaker? Unfortunately, one of her VSDs is located in and around a place where her heart's electrical tissue exists. It is possible that Dr. Spray will have to stitch in that area, and if so, it may disrupt her heart's normal rhythm.
So for now, all we do is sit and wait.
Wednesday, July 13, 2011
Monday, July 11, 2011
Different than any other day
Jillian posted this on Facebook, but I wanted to be sure we recorded it here as well.
Today feels different than most other days.
With Wednesday approaching quicker and quicker, I have fears and a feeling of helplessness. I am looking forward to the surgery being over with for many reasons. Aurelia’s heart will be whole. Complete. Healed. For that I am thankful to the hundreds of doctors, nurses, surgeons, and others who will have taken part in her care. Today’s feelings aren’t about the upcoming surgery though; they focus more-so on our daughter, Madison, who has been such a trooper through all of this. Don’t get me wrong, Aurelia is my little heart warrior and I think that she is the bravest person that I know. Madison though, has been through every bit of this with us. And she has weathered it all very well. I am very proud of the caring, sweet girl that she has become. She is the best big-sister in the world and I absolutely treasure her.
I am looking forward to normalcy in our family. Of the last 10 months, I have spent 116 nights away from home, at three different Ronald McDonald Houses. That is nearly 1/3 of a year. This next stay will likely be a week or two and this one I am dreading the most. Madison has been with me for nearly every night for the last year, but this time Charley and I are opting to leave her at home with my parents taking care of her. But leaving her behind is tearing me apart. I know that it will be better for all of us in the long run. Charley and I can spend all of our time at the hospital with Aurelia, especially during the first few days post-op. We won’t have to rush back to the RMH for dinner or worry that we aren’t splitting our time equitably between both girls. For Madison though, hopefully it will be a time for her to enjoy time at home with her grandparents. She can play in her pool or in the sprinkler and have all of her toys and books close by. She can sleep in her own bed. She will have her Uly and Shy (our cats) and she will have time for arts and crafts and the undivided attention of her grandparents.
For my part though, I am going to miss her dearly. Having her with me for those first 11 weeks of Aurelia’s life (and the week before, when we went to Philly early) was such a blessing. She was a wonderful distraction on tough days. It was good to go “home” in the evenings and have her to be with, especially when Charley wasn’t there. I think that I was able to be with her more and to see her grow and change more than I would have if I had been working all of that time. It really was very special. But this time, I think that we need to focus on Aurelia and to spend our time and energy on her. I guess that anyone that has more than one child feels torn when they can’t be with both kids at the same time. This just feels so painful though. And while there are still 2 surgeries ahead, I don’t have the same sense of angst when thinking about them. Maybe that is because they are not right in front of me yet. In the grand scheme of things, they will be minor compared to many of the other surgeries that Aurelia has already faced. They will also be much shorter stays in the hospital, and hopefully they won’t have the risk of as many complications as are possible with this upcoming surgery.
No matter what, right now I am feeling scared about the next two weeks. I would love for Aurelia’s surgery and recovery to be as smooth as possible, but I know our girl and there is bound to be some sort of a complication. I take solace in knowing that Madison is just a car ride away. And perhaps when Aurelia is stable, I’ll go home for a night. Or maybe bring her back to Philly. After all, I’m sure that she will be missing her sister (and her Mama and Daddy) just as much as we’ll be missing her.
Today feels different than most other days.
With Wednesday approaching quicker and quicker, I have fears and a feeling of helplessness. I am looking forward to the surgery being over with for many reasons. Aurelia’s heart will be whole. Complete. Healed. For that I am thankful to the hundreds of doctors, nurses, surgeons, and others who will have taken part in her care. Today’s feelings aren’t about the upcoming surgery though; they focus more-so on our daughter, Madison, who has been such a trooper through all of this. Don’t get me wrong, Aurelia is my little heart warrior and I think that she is the bravest person that I know. Madison though, has been through every bit of this with us. And she has weathered it all very well. I am very proud of the caring, sweet girl that she has become. She is the best big-sister in the world and I absolutely treasure her.
I am looking forward to normalcy in our family. Of the last 10 months, I have spent 116 nights away from home, at three different Ronald McDonald Houses. That is nearly 1/3 of a year. This next stay will likely be a week or two and this one I am dreading the most. Madison has been with me for nearly every night for the last year, but this time Charley and I are opting to leave her at home with my parents taking care of her. But leaving her behind is tearing me apart. I know that it will be better for all of us in the long run. Charley and I can spend all of our time at the hospital with Aurelia, especially during the first few days post-op. We won’t have to rush back to the RMH for dinner or worry that we aren’t splitting our time equitably between both girls. For Madison though, hopefully it will be a time for her to enjoy time at home with her grandparents. She can play in her pool or in the sprinkler and have all of her toys and books close by. She can sleep in her own bed. She will have her Uly and Shy (our cats) and she will have time for arts and crafts and the undivided attention of her grandparents.
For my part though, I am going to miss her dearly. Having her with me for those first 11 weeks of Aurelia’s life (and the week before, when we went to Philly early) was such a blessing. She was a wonderful distraction on tough days. It was good to go “home” in the evenings and have her to be with, especially when Charley wasn’t there. I think that I was able to be with her more and to see her grow and change more than I would have if I had been working all of that time. It really was very special. But this time, I think that we need to focus on Aurelia and to spend our time and energy on her. I guess that anyone that has more than one child feels torn when they can’t be with both kids at the same time. This just feels so painful though. And while there are still 2 surgeries ahead, I don’t have the same sense of angst when thinking about them. Maybe that is because they are not right in front of me yet. In the grand scheme of things, they will be minor compared to many of the other surgeries that Aurelia has already faced. They will also be much shorter stays in the hospital, and hopefully they won’t have the risk of as many complications as are possible with this upcoming surgery.
No matter what, right now I am feeling scared about the next two weeks. I would love for Aurelia’s surgery and recovery to be as smooth as possible, but I know our girl and there is bound to be some sort of a complication. I take solace in knowing that Madison is just a car ride away. And perhaps when Aurelia is stable, I’ll go home for a night. Or maybe bring her back to Philly. After all, I’m sure that she will be missing her sister (and her Mama and Daddy) just as much as we’ll be missing her.
Thursday, July 7, 2011
Phew!
I'm sure I've used that title before, but man am I tired. It has been a whirlwind these last three days. Aurelia and Madison are adopting to life at home again, and for the most part that's going smoothly. Aurelia does her best to be good natured even as we turn screws in her jaw every day, disinfect and slather up her ears in ointment. Madison is coming around to once again be the girl we knew in April and May, but this is the first time I've seen her adaptation slowed somewhat by jealousy. Her needs have visibly intensified for the first time since this odyssey began.
Our poor cat Ulysses had a serious infection on his hindquarters. Due to stress, we hope, he started rubbing his ass along the rug while we were gone. He rubbed his skin raw. He was a bloody, swollen, infected mess. Now he's still swollen, but he's shaved, bathed three times a day (which he loves), and instead of bloody he's all covered in a sheen of ointment. Yes, that's right, I get to rub ointment all over my cat's privates, including his butt. Be jealous. In the pity category, he is a cone head kitty for a few weeks and has to stomach the indignity of being given two different medicines throughout the day. That's a fun time for everyone, let me assure you.
It has been an interesting time for me and Jillian as caretakers during this week long hospital respite. Aurelia's care schedule is so complicated and covers so many medicines with changing dosages each day that we had to make up medicine and care charts, different ones for each day, so that we can be sure she comes off her pain medication comfortably. It's been challenging to balance those needs (which are frequent), Uly's needs (less frequent), and Madison's increasing needs (less frequent still, but more than ever before), with our needs to catch up with and take care of everything here at the house from our recent stay away.
Now that we are on the second half of the week and moving toward our next stay at CHOP things are beginning to shift into planning mode for our time gone. We think we'll have Madison stay here at the house with my in-laws to reduce the burden of travel on her. We are also thinking about how we'll handle Ulysses and the other household issues that my in-laws would have to take care of while we're gone; we are appreciative of their help, but we certainly don't want to abuse their good will!
As the pace quickens I hope we don't forget anything. We'll see!
Our poor cat Ulysses had a serious infection on his hindquarters. Due to stress, we hope, he started rubbing his ass along the rug while we were gone. He rubbed his skin raw. He was a bloody, swollen, infected mess. Now he's still swollen, but he's shaved, bathed three times a day (which he loves), and instead of bloody he's all covered in a sheen of ointment. Yes, that's right, I get to rub ointment all over my cat's privates, including his butt. Be jealous. In the pity category, he is a cone head kitty for a few weeks and has to stomach the indignity of being given two different medicines throughout the day. That's a fun time for everyone, let me assure you.
It has been an interesting time for me and Jillian as caretakers during this week long hospital respite. Aurelia's care schedule is so complicated and covers so many medicines with changing dosages each day that we had to make up medicine and care charts, different ones for each day, so that we can be sure she comes off her pain medication comfortably. It's been challenging to balance those needs (which are frequent), Uly's needs (less frequent), and Madison's increasing needs (less frequent still, but more than ever before), with our needs to catch up with and take care of everything here at the house from our recent stay away.
Now that we are on the second half of the week and moving toward our next stay at CHOP things are beginning to shift into planning mode for our time gone. We think we'll have Madison stay here at the house with my in-laws to reduce the burden of travel on her. We are also thinking about how we'll handle Ulysses and the other household issues that my in-laws would have to take care of while we're gone; we are appreciative of their help, but we certainly don't want to abuse their good will!
As the pace quickens I hope we don't forget anything. We'll see!
Monday, July 4, 2011
Ah piss
Note: I wrote this yesterday in my diary, only now am I getting it posted.
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Ah piss. Aurelia continues to improve and I continue to worry. Our girl begins to sit on her own, even in a hospital bed, and I freak out over her needing a 1/4 liter of oxygen at night to sleep. Everything, all my fears, are based off of past experience. It seems every time we approach discharge something happens that may delay our leaving.
This morning we arrived at the hospital to find Aurelia with bandages over her ears. It appears that some sort of infection has settled in over her distractor sites and we are waiting to see what, if anything, will come of it. We have, too, begun the usual dance around Aurelia and her oxygen. As such a difficult ween, it seems we may convince the doctors to send us home on oxygen - only if her ears look O.K.
Still, I do believe they will let us go home tomorrow or Tuesday. Even a little break would be so very welcome.
----
Ah piss. Aurelia continues to improve and I continue to worry. Our girl begins to sit on her own, even in a hospital bed, and I freak out over her needing a 1/4 liter of oxygen at night to sleep. Everything, all my fears, are based off of past experience. It seems every time we approach discharge something happens that may delay our leaving.
This morning we arrived at the hospital to find Aurelia with bandages over her ears. It appears that some sort of infection has settled in over her distractor sites and we are waiting to see what, if anything, will come of it. We have, too, begun the usual dance around Aurelia and her oxygen. As such a difficult ween, it seems we may convince the doctors to send us home on oxygen - only if her ears look O.K.
Still, I do believe they will let us go home tomorrow or Tuesday. Even a little break would be so very welcome.
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| Hi everyone! I hope I get to go home today! |
Saturday, July 2, 2011
A fast few days
We have made our way to the step-down unit in CHOP. In brief, Aurelia chugs along, improving with each passing day. Her pain medication woes lessen, her strength increases, and her oxygen doses decrease over time. Today she's needed no additional tylenol or ibuprofen, she is down to 1/2 a liter of oxygen, and she managed to sit upright on her own with limited support for nearly a minute. All these are wonderful milestones.
We are pushing the doctors to let us go home for even a bit before her next surgery on the 13th. We have to return here on the 12th as it is, so any time at all would be welcome. Some sense of normalcy brings with it amazing relief, even for a few days. I imagine we will be back here for two weeks more starting on the 12th, so I pray for a break soon. Our family was together at home for only a week after school ended for me before we traveled to Connecticut and found ourselves here two weeks ago.
Let me say thank you to so many of you who have supported us; your facebook messages, blog comments, phone calls, caring for our cats and one helluva hardy fish at our house in Gettysburg, and the countless prayers, positive thoughts, and well-wishes have sustained us mightily. One day last week more than 100 people read our blog, sending their good thoughts and prayers Aurelia's way, and for that we say 'thank you.'
It has been brought home to us time and again, this most recent stay no exception, that our employers, the Northeastern School District and Carroll County Public Library System, are amazingly compassionate. Colleagues have sent cards and gifts, offered help and support, and have made themselves available to us in this, and all our other, times of need. Thank you. You have helped raise our daughter and have made sure that Aurelia not only lives, but lives well and strong. You are a part of her family and we look forward to the time she meets you all.
I want to add, too, that so many of you have asked after our other daughter, Madison. Although only two, in the last year and a half she's had live-in house guests for nearly twelve weeks when my wife was on bed-rest with Aurelia, she has had to live away from home in a hotel room for nearly four of the last ten months, and she spent nearly three months with her dad two hours away in Gettysburg, as I had to work immediately after Aurelia's birth. Madison endures with great poise, and determination, and joy. Such pure, happy joy as only a two year old can have. She has been a gift to all of us, helping us laugh and smile, and encouraging us to always remember that family, no matter the challenge it endures, is most important. You have all helped raise her as well as Aurelia, in your own way. Thank you.
We are pushing the doctors to let us go home for even a bit before her next surgery on the 13th. We have to return here on the 12th as it is, so any time at all would be welcome. Some sense of normalcy brings with it amazing relief, even for a few days. I imagine we will be back here for two weeks more starting on the 12th, so I pray for a break soon. Our family was together at home for only a week after school ended for me before we traveled to Connecticut and found ourselves here two weeks ago.
Let me say thank you to so many of you who have supported us; your facebook messages, blog comments, phone calls, caring for our cats and one helluva hardy fish at our house in Gettysburg, and the countless prayers, positive thoughts, and well-wishes have sustained us mightily. One day last week more than 100 people read our blog, sending their good thoughts and prayers Aurelia's way, and for that we say 'thank you.'
It has been brought home to us time and again, this most recent stay no exception, that our employers, the Northeastern School District and Carroll County Public Library System, are amazingly compassionate. Colleagues have sent cards and gifts, offered help and support, and have made themselves available to us in this, and all our other, times of need. Thank you. You have helped raise our daughter and have made sure that Aurelia not only lives, but lives well and strong. You are a part of her family and we look forward to the time she meets you all.
I want to add, too, that so many of you have asked after our other daughter, Madison. Although only two, in the last year and a half she's had live-in house guests for nearly twelve weeks when my wife was on bed-rest with Aurelia, she has had to live away from home in a hotel room for nearly four of the last ten months, and she spent nearly three months with her dad two hours away in Gettysburg, as I had to work immediately after Aurelia's birth. Madison endures with great poise, and determination, and joy. Such pure, happy joy as only a two year old can have. She has been a gift to all of us, helping us laugh and smile, and encouraging us to always remember that family, no matter the challenge it endures, is most important. You have all helped raise her as well as Aurelia, in your own way. Thank you.
Thursday, June 30, 2011
Ouch! Quit it! Ouch! Quit it....
Strange is the word I use to describe the previous 36 hours. Aurelia's condition steadily improves, but at the same time managing her care becomes increasingly difficult. Since last writing, Aurelia lost her breathing tube, ended all IV pain medications (minus a small dose of morphine through her g-tube), resumed normal feeds, lost her central line, avoided any fevers, and is weening off oxygen.
I should jump for joy! At the same time, this is no three month old largely devoid of personality; Aurelia is nine months now and tremendously capable of self-expression. Discomfort, impatience, pain, exhaustion, irritability, all these and more our girl now shares, vociferously, with entire pod of babies.
Let me clarify. As Aurelia came off her breathing tube she expressed joy, but suffers irritably from a terrible cough and partially collapsed left lung (not something unusual - it often occurs in little ones who are kept sedated for some time). Angrily, Aurelia fights against her high flow nasal canula, the treatment for her lung problems. Fed up as she was with the breathing tube, the canula must feel like torture - she had this big tube removed, she fought to breathe on her own, and now they are forcing even more air into her lungs.
Now that the majority of her pain medication has stopped, Aurelia's color and personality return vigorously, but with that comes increased jaw sensitivity and discomfort in her leg from her central line. I would almost trade away the smiles that arrive as her pain medication stops, especially if it meant no longer watching her twitch, shake, and moan constantly from narcotic withdrawal. For some reason watching her filled with addiction fueled agitation and ache breaks my heart near as much as seeing her sedated into a stupor.
And if any of you know an addict, you know how terribly difficult it can be to rest. Aurelia has managed only six hours of sleep in the last 36 and that came thanks to diazepam's ability to take the edge off her craving. Hopefully, the combination of getting her central line out and maximum doses of ibuprofen will give her some rest.
Of course I know that this is all preferable to where she was four days ago, but seeing her so distressed, watching those emotions play across her face, it breaks my heart in ways surgery and long term stay hasn't in the past. Here's to hope! Maybe the step down unit soon. Maybe a chance at getting home, even for a few days, before we have to return for her open heart surgery. It's possible!
I should jump for joy! At the same time, this is no three month old largely devoid of personality; Aurelia is nine months now and tremendously capable of self-expression. Discomfort, impatience, pain, exhaustion, irritability, all these and more our girl now shares, vociferously, with entire pod of babies.
Let me clarify. As Aurelia came off her breathing tube she expressed joy, but suffers irritably from a terrible cough and partially collapsed left lung (not something unusual - it often occurs in little ones who are kept sedated for some time). Angrily, Aurelia fights against her high flow nasal canula, the treatment for her lung problems. Fed up as she was with the breathing tube, the canula must feel like torture - she had this big tube removed, she fought to breathe on her own, and now they are forcing even more air into her lungs.
Now that the majority of her pain medication has stopped, Aurelia's color and personality return vigorously, but with that comes increased jaw sensitivity and discomfort in her leg from her central line. I would almost trade away the smiles that arrive as her pain medication stops, especially if it meant no longer watching her twitch, shake, and moan constantly from narcotic withdrawal. For some reason watching her filled with addiction fueled agitation and ache breaks my heart near as much as seeing her sedated into a stupor.
And if any of you know an addict, you know how terribly difficult it can be to rest. Aurelia has managed only six hours of sleep in the last 36 and that came thanks to diazepam's ability to take the edge off her craving. Hopefully, the combination of getting her central line out and maximum doses of ibuprofen will give her some rest.
Of course I know that this is all preferable to where she was four days ago, but seeing her so distressed, watching those emotions play across her face, it breaks my heart in ways surgery and long term stay hasn't in the past. Here's to hope! Maybe the step down unit soon. Maybe a chance at getting home, even for a few days, before we have to return for her open heart surgery. It's possible!
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| Like my new blanket? |
Tuesday, June 28, 2011
Can you spot the differences?
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| Before |
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| After |
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