The last week or so has been hell. Started off with a town official coming to my home and shutting down my backyard remodeling project. While an expensive pain in the ass, that really doesn't mean anything in view of the news I received today, which is that my 2 week old daughter has a life threatening congenital heart defect.
The good news is that the defect she has (ventricular septal defect - essentially a hole in the wall dividing the left and right ventricles of the heart) is not terribly uncommon and can be treated. The bad news is her defect is particularly severe and very likely will need open heart surgery to correct. A small VSD would be under 3 mm. A large one would be between 3 and 5 mm. My daughters VSD? It's 7mm.
I'm not looking for pity or for sympathy. I'm just struggling to deal with the implications of this and talking/writing about it seems to help. If anyone else has any experience with this type of defect and has had a positive outcome, I would love to hear your story.
Anyway, the only thing to do now is wait until she starts showing signs of heart failure. Once that starts, her cardiologist said that we will have the option of open heart surgery or putting her on medication. The meds could cause her to go deaf or worse, but they might allow her to grow some more (she is only 6 lbs 2oz today), increasing the chances that she will survive the (likely inevitable) surgery intact. But once the meds stop working, surgery is the only option.
F*ck.
F*CK! F*CK! F*CK!
God damn it. Life just isn't fair.
[image deleted to make room for new pics]
Update 1 (04/11/2012) - Started our daughter (Olivia) on Lasix (Furosemide) two days ago. For those unfamiliar with Lasix, its basically a high power diuretic. In my daughters case, it is being administed to help remove fluid from her lungs, allowing her to breathe easier and buy some more time to grow. Thankfully she is growing. She's gained 2 lbs since birth (now 7lbs, up from 5lbs, 1oz at birth), which is great. First follow up with the cardiologist is tomorrow. Will update the post if there is anything interesting to report.
Update 2 (04/12/2012) - Went to the Cardiologist today. The good news is that he is happy to see that Olivia is growing. The bad news is that she is now starting to show signs of infant heart failure (rapid breathing, a "gallop" heartbeat, distended liver). As a result, we decided to increase the Lasix from 1X a day to 2X a day. FWIW, he did say that she was "doing reasonably well" given her heart disease. I also learned that getting her out to two months of age is very important, because performing the surgery before that time can interfere with natural changes in pulmonary physiology that occur during that time (e.g., natural reduction in pulmonary vascular resistance). The risks of side effects of the surgery go way down after that point too. Already starting to look at doctors at Boston Children's. That in and of itself is a bit nerve wracking (it makes the whole situation a lot more "real"), but at least it is giving me something to focus on.
New pic:
[image deleted to make room for new pics]
Update 05/04/2012
Took Olivia to the cardiologist for the third time on 05/02/2012. An EKG and echocardiogram were performed to determine the state of her VSD. Surprise! It hasn't closed at all. Its still 7-8 mm across. Doppler measurements showed increased blood volume and velocity through the hole, which is consistent with reduced PVR (pulmonary vascular resistance). That is both good and bad. The bad part is that reduced PVR means that even more blood is now able to flow to Olivia's lungs. That raises the blood pressure in her lungs, causes them to work harder etc. In sum, it makes it more difficult for her to breathe. The good part is that PVR naturally lowers in the first few months of life, and bottoms out at around 2 months of age. The fact that Olivia's PVR is lower than it was is an indication that normal physiological changes that take place in the lungs are occurring, which is not always the case when a child has a large VSD.
More on the "worrisome but expected side," the echocardiogram showed that the left side of Olivia's heart is enlarged. The enlargement is due to the fact that her left ventricle has to work harder to pull in more blood from the right side of the heart, and pump out sufficient blood to the rest of the body. Unfortunately this means that in addition to having a VSD she now has some limited regurgitation through the mitral valve (the valve between the left atria and left ventrical). Like a VSD, regurgitation lowers the efficiency of the left side of the heart. Thus, multiple issues are now causing her left ventricle to to work much harder than it should.
Ultimately, this combination of factors has lead the cardiologist to recommend that we have Olivia's VSD surgically repaired as soon as possible. My wife and I are in full agreement, and have asked the cardiologist to make the necessary arrangements with Boston Children's. The only issue now is that at 8 lbs, Olivia is significantly below the minimum weight requirement for the surgery (10lbs), at least according to the hospital protocols. We are therefore trying to stuff her with as many calories as possible. Perhaps one of the few times a woman will be told that she really, really needs to pack on the pounds.
In any event, surgery will likely happen in the next 2-6 weeks. I'll post when I know more.
Thanks again to everyone for the positive thoughts and well wishes.
Update 05/16/2012
I wish I could report that things are going well, but unfortunately they are not. About two weeks ago, my daughter decided that she was no longer interested in eating. She has gained a whopping two ounces in the last two weeks, and exactly 0 ounces in the past 7 days. Not good, considering that she needs to gain 2 lbs to have a good chance of making it through corrective surgery without significant problems.
While I have not been able to contact her cardiologist yet today, I am certain that we will be headed to the hospital this afternoon to have an NG (feeding) tube placed. As a former EMT, I know that NG tubes are not really a big deal, though they are uncomfortable. But as a father, I am nervous, worried, and downright scared for my little girl. I don't think I have every felt this helpless. Two steps forward, three steps back.
I'll post as things develop and when I can actually bring up the nerve to write more.
Update 05/16/2012 part 2
As expected, Olivia's cardiologist asked us to bring her in to have a feeding tube placed. She went through the procedure like a champ. Barely cried at all. Very weird to see her with a tube in her nose. While the feeding tube introduces a whole host of other issues, one good thing is that we can strongly supplement her feedings with formula and try to pack on the pounds. Here is to hoping it works.
<crosses fingers>
Update 05/21/2012
Everyone please cross your fingers and say a prayer for my little girl. Her conditioned significantly worsened last week, and she is now scheduled to undergo corrective open heart surgery on Friday, May 25 at Boston Children's. It has been a nerve wracking couple of months, but it feels very good to finally "do" something to correct the problem, instead of simply treating symptoms.
New pic:
[image deleted to make room for new pics]
Update 05/24
So we arrived a Boston children's hospital today. Sigh. What a looooooooong day. Chest X-ray, EKG, sedated echocardiogram, meeting with the surgeon/anastesioogist/icu nurses, etc. Started at 4 am and just got to the hotel now (6pm). Little Olivia is scheduled for open heart surgery tomorrow at 7AM. Crossing my fingers that all goes well.
Update 05/26
Surgery went well yesterday. Surgeon was able to close the hole in Olivia's heart, and her heart is beating well on its own. We are in the ICU until Monday, and the hospital until Thursday or Friday. Will post more when I have a chance and when I have access to a real computer.
Thanks for the support everyone.
Update 5/27
2 days post op, and everything is looking pretty good. Olivia is still in the pediatric cardiac ICU at Boston Children's, but she is progressing normally. Her heart is beating well, and tubes/monitors are slowly but surely being removed. Yesterday the arterial line and chest tubes came out, leving only a few IV's, an NG (feeding) tube, and ventilator tube. We were hopeful that the ventilator tube would come out this morning, but there is so much fluid in Olivia's lungs (normal side effect from the heart lung machine) that the attending physician has decided to leave it for a while longer. Maybe it will come out tomorrow. That would be wonderful, as the vent tube is the last thing preventing us from picking her up.
To give you all some perspective on this process, I've posted a few post op pics below. They are not too terribly graphic, but they do so some blood, pus, etc. and so are not for the squeamish.
Also, I firmly believe that anyone and everyone should at some point take a tour of a pediatric ICU at some point in their lives. Words cannot express the perspective it brings. My wife and I thought we had it tough when we came in. But there are parents and children who are FAR, FAR worse off than we are. At least Olivia had a fixable defect. Some poor kids in the ICU are struggling every hour to stay alive. A couple across the hall from us lost their 2 week old son yesterday, and it was the saddest thing I have ever seen in my life. Makes me want to quit my job and do nothing but try and raise money for this heroic hospital. No one and I mean no one should be denied access to the care that is available here.
1st image post op (5/25):
2nd image post op (lots of machines 5/26)
3rd image post op (5/27) - I'm awake!
Update 5/30
Sigh. We are still in the icu. Not for heart related issues, bt rather respiratory issues. Spent the last two days trying to re-inflate one of Olivia's lungs, which collapsed after surgery. Docs weren't too worried, as lungs apparently often collapse after bypass surgery. Thankfully we got the lung up today. Now we just have to clear out tons of mucous from her upper airway and then we can be downgraded.
Here is to hoping for a significant improvement over the next few days.
Update 5/31
Huzzah! We are out of the ICU! After some meds, lots of chest percussion therapy, and an upper airway endoscopy, Olivia has been upgraded from "serious" to stable condition. As a result, we were ousted from the ICU and put in the general surgical recovery ward. A very significant step towards going home. Goal now is to establish consistent feeding, weight gain, and normal bodily functions (poops, pees, etc.). We've got the bodily functions down, so feeding and weight gain are the primary goals.
Follow up echocardiogram will take place tomorrow. Docs want to check the integrity of the patch and look at a residual hole that had to remain after the surgery (around the periphery of the patch). Will update when there is more to report, but right now things are looking good!
Update 08/08/2012
Just thought I would post a quick follow up for those who might still be following or interested in Olivia's story.
Two and a half months post op, and Olivia is doing incredibly well. Although she is still very underweight (she's a whopping 12lbs), she is in the 75th percentile for length. Motor skills,cognitive skills, etc. all seem to be fine. She will always have the scars from the surgery, but all in all they aren't too bad either (would post pics, but I don't have them).
Anyway, here are some pics showing her progresss post op:
detached from all tubes and almost ready to go home
1 month post op - I can sit up!
Two months post op. Ok, I'm just darn cute.
Now, if she would just SLEEP!
Thanks again to everyone on this site who supported me. Olivia's ordeal was easily the toughest thing I have ever had to cope with in my life, and it was nice to know that a bunch of people cared, even if it was a (for the most part) a bunch of internet pseudo-strangers. You guys and gals are good people. Even the trolls. Thanks again.
Edit 11/8/2012
Saw that this thread got bumped again, so I thought I would take the time to update the OP and give you all an update on Olivia's progress. As many of you know, we took Olivia for a follow up appointment with her cardiologist a little while ago, and I am ecstatic to report that her VSD is now completely healed. Apart from the scars (which are now extremely faint), she is a perfectly normal little girl.
Thanks again to everyone for the support. Now, on to the pics!
Hi Everyone!
Olivia and her brother, Soxfan Jr - all decked out for Halloween 2012
Yes, she smiles all the time
Life is better when viewed upside down
The good news is that the defect she has (ventricular septal defect - essentially a hole in the wall dividing the left and right ventricles of the heart) is not terribly uncommon and can be treated. The bad news is her defect is particularly severe and very likely will need open heart surgery to correct. A small VSD would be under 3 mm. A large one would be between 3 and 5 mm. My daughters VSD? It's 7mm.
I'm not looking for pity or for sympathy. I'm just struggling to deal with the implications of this and talking/writing about it seems to help. If anyone else has any experience with this type of defect and has had a positive outcome, I would love to hear your story.
Anyway, the only thing to do now is wait until she starts showing signs of heart failure. Once that starts, her cardiologist said that we will have the option of open heart surgery or putting her on medication. The meds could cause her to go deaf or worse, but they might allow her to grow some more (she is only 6 lbs 2oz today), increasing the chances that she will survive the (likely inevitable) surgery intact. But once the meds stop working, surgery is the only option.
F*ck.
F*CK! F*CK! F*CK!
God damn it. Life just isn't fair.
[image deleted to make room for new pics]
Update 1 (04/11/2012) - Started our daughter (Olivia) on Lasix (Furosemide) two days ago. For those unfamiliar with Lasix, its basically a high power diuretic. In my daughters case, it is being administed to help remove fluid from her lungs, allowing her to breathe easier and buy some more time to grow. Thankfully she is growing. She's gained 2 lbs since birth (now 7lbs, up from 5lbs, 1oz at birth), which is great. First follow up with the cardiologist is tomorrow. Will update the post if there is anything interesting to report.
Update 2 (04/12/2012) - Went to the Cardiologist today. The good news is that he is happy to see that Olivia is growing. The bad news is that she is now starting to show signs of infant heart failure (rapid breathing, a "gallop" heartbeat, distended liver). As a result, we decided to increase the Lasix from 1X a day to 2X a day. FWIW, he did say that she was "doing reasonably well" given her heart disease. I also learned that getting her out to two months of age is very important, because performing the surgery before that time can interfere with natural changes in pulmonary physiology that occur during that time (e.g., natural reduction in pulmonary vascular resistance). The risks of side effects of the surgery go way down after that point too. Already starting to look at doctors at Boston Children's. That in and of itself is a bit nerve wracking (it makes the whole situation a lot more "real"), but at least it is giving me something to focus on.
New pic:
[image deleted to make room for new pics]
Update 05/04/2012
Took Olivia to the cardiologist for the third time on 05/02/2012. An EKG and echocardiogram were performed to determine the state of her VSD. Surprise! It hasn't closed at all. Its still 7-8 mm across. Doppler measurements showed increased blood volume and velocity through the hole, which is consistent with reduced PVR (pulmonary vascular resistance). That is both good and bad. The bad part is that reduced PVR means that even more blood is now able to flow to Olivia's lungs. That raises the blood pressure in her lungs, causes them to work harder etc. In sum, it makes it more difficult for her to breathe. The good part is that PVR naturally lowers in the first few months of life, and bottoms out at around 2 months of age. The fact that Olivia's PVR is lower than it was is an indication that normal physiological changes that take place in the lungs are occurring, which is not always the case when a child has a large VSD.
More on the "worrisome but expected side," the echocardiogram showed that the left side of Olivia's heart is enlarged. The enlargement is due to the fact that her left ventricle has to work harder to pull in more blood from the right side of the heart, and pump out sufficient blood to the rest of the body. Unfortunately this means that in addition to having a VSD she now has some limited regurgitation through the mitral valve (the valve between the left atria and left ventrical). Like a VSD, regurgitation lowers the efficiency of the left side of the heart. Thus, multiple issues are now causing her left ventricle to to work much harder than it should.
Ultimately, this combination of factors has lead the cardiologist to recommend that we have Olivia's VSD surgically repaired as soon as possible. My wife and I are in full agreement, and have asked the cardiologist to make the necessary arrangements with Boston Children's. The only issue now is that at 8 lbs, Olivia is significantly below the minimum weight requirement for the surgery (10lbs), at least according to the hospital protocols. We are therefore trying to stuff her with as many calories as possible. Perhaps one of the few times a woman will be told that she really, really needs to pack on the pounds.
In any event, surgery will likely happen in the next 2-6 weeks. I'll post when I know more.
Thanks again to everyone for the positive thoughts and well wishes.
Update 05/16/2012
I wish I could report that things are going well, but unfortunately they are not. About two weeks ago, my daughter decided that she was no longer interested in eating. She has gained a whopping two ounces in the last two weeks, and exactly 0 ounces in the past 7 days. Not good, considering that she needs to gain 2 lbs to have a good chance of making it through corrective surgery without significant problems.
While I have not been able to contact her cardiologist yet today, I am certain that we will be headed to the hospital this afternoon to have an NG (feeding) tube placed. As a former EMT, I know that NG tubes are not really a big deal, though they are uncomfortable. But as a father, I am nervous, worried, and downright scared for my little girl. I don't think I have every felt this helpless. Two steps forward, three steps back.
I'll post as things develop and when I can actually bring up the nerve to write more.
Update 05/16/2012 part 2
As expected, Olivia's cardiologist asked us to bring her in to have a feeding tube placed. She went through the procedure like a champ. Barely cried at all. Very weird to see her with a tube in her nose. While the feeding tube introduces a whole host of other issues, one good thing is that we can strongly supplement her feedings with formula and try to pack on the pounds. Here is to hoping it works.
<crosses fingers>
Update 05/21/2012
Everyone please cross your fingers and say a prayer for my little girl. Her conditioned significantly worsened last week, and she is now scheduled to undergo corrective open heart surgery on Friday, May 25 at Boston Children's. It has been a nerve wracking couple of months, but it feels very good to finally "do" something to correct the problem, instead of simply treating symptoms.
New pic:
[image deleted to make room for new pics]
Update 05/24
So we arrived a Boston children's hospital today. Sigh. What a looooooooong day. Chest X-ray, EKG, sedated echocardiogram, meeting with the surgeon/anastesioogist/icu nurses, etc. Started at 4 am and just got to the hotel now (6pm). Little Olivia is scheduled for open heart surgery tomorrow at 7AM. Crossing my fingers that all goes well.
Update 05/26
Surgery went well yesterday. Surgeon was able to close the hole in Olivia's heart, and her heart is beating well on its own. We are in the ICU until Monday, and the hospital until Thursday or Friday. Will post more when I have a chance and when I have access to a real computer.
Thanks for the support everyone.
Update 5/27
2 days post op, and everything is looking pretty good. Olivia is still in the pediatric cardiac ICU at Boston Children's, but she is progressing normally. Her heart is beating well, and tubes/monitors are slowly but surely being removed. Yesterday the arterial line and chest tubes came out, leving only a few IV's, an NG (feeding) tube, and ventilator tube. We were hopeful that the ventilator tube would come out this morning, but there is so much fluid in Olivia's lungs (normal side effect from the heart lung machine) that the attending physician has decided to leave it for a while longer. Maybe it will come out tomorrow. That would be wonderful, as the vent tube is the last thing preventing us from picking her up.
To give you all some perspective on this process, I've posted a few post op pics below. They are not too terribly graphic, but they do so some blood, pus, etc. and so are not for the squeamish.
Also, I firmly believe that anyone and everyone should at some point take a tour of a pediatric ICU at some point in their lives. Words cannot express the perspective it brings. My wife and I thought we had it tough when we came in. But there are parents and children who are FAR, FAR worse off than we are. At least Olivia had a fixable defect. Some poor kids in the ICU are struggling every hour to stay alive. A couple across the hall from us lost their 2 week old son yesterday, and it was the saddest thing I have ever seen in my life. Makes me want to quit my job and do nothing but try and raise money for this heroic hospital. No one and I mean no one should be denied access to the care that is available here.
1st image post op (5/25):
2nd image post op (lots of machines 5/26)
3rd image post op (5/27) - I'm awake!
Update 5/30
Sigh. We are still in the icu. Not for heart related issues, bt rather respiratory issues. Spent the last two days trying to re-inflate one of Olivia's lungs, which collapsed after surgery. Docs weren't too worried, as lungs apparently often collapse after bypass surgery. Thankfully we got the lung up today. Now we just have to clear out tons of mucous from her upper airway and then we can be downgraded.
Here is to hoping for a significant improvement over the next few days.
Update 5/31
Huzzah! We are out of the ICU! After some meds, lots of chest percussion therapy, and an upper airway endoscopy, Olivia has been upgraded from "serious" to stable condition. As a result, we were ousted from the ICU and put in the general surgical recovery ward. A very significant step towards going home. Goal now is to establish consistent feeding, weight gain, and normal bodily functions (poops, pees, etc.). We've got the bodily functions down, so feeding and weight gain are the primary goals.
Follow up echocardiogram will take place tomorrow. Docs want to check the integrity of the patch and look at a residual hole that had to remain after the surgery (around the periphery of the patch). Will update when there is more to report, but right now things are looking good!
Update 08/08/2012
Just thought I would post a quick follow up for those who might still be following or interested in Olivia's story.
Two and a half months post op, and Olivia is doing incredibly well. Although she is still very underweight (she's a whopping 12lbs), she is in the 75th percentile for length. Motor skills,cognitive skills, etc. all seem to be fine. She will always have the scars from the surgery, but all in all they aren't too bad either (would post pics, but I don't have them).
Anyway, here are some pics showing her progresss post op:
detached from all tubes and almost ready to go home
1 month post op - I can sit up!
Two months post op. Ok, I'm just darn cute.
Now, if she would just SLEEP!
Thanks again to everyone on this site who supported me. Olivia's ordeal was easily the toughest thing I have ever had to cope with in my life, and it was nice to know that a bunch of people cared, even if it was a (for the most part) a bunch of internet pseudo-strangers. You guys and gals are good people. Even the trolls. Thanks again.
Edit 11/8/2012
Saw that this thread got bumped again, so I thought I would take the time to update the OP and give you all an update on Olivia's progress. As many of you know, we took Olivia for a follow up appointment with her cardiologist a little while ago, and I am ecstatic to report that her VSD is now completely healed. Apart from the scars (which are now extremely faint), she is a perfectly normal little girl.
Thanks again to everyone for the support. Now, on to the pics!
Hi Everyone!
Olivia and her brother, Soxfan Jr - all decked out for Halloween 2012
Yes, she smiles all the time
Life is better when viewed upside down
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