Iz had her biannual cardiology workup this morning. She had an EKG and Echocardiogram and then we visited with her cardiologist.
She has no changes to her treatment plan and no restrictions, which is fantastic. We like hearing that things are fairly stable. We like hearing that we don't need to add in any medications or monitoring. We like hearing that she can stay on her every two years schedule.
But I'd be lying if I said this visit hasn't left me with some pretty severe anxiety. Yes, she's doing well. Yes, she gets to continue living her life as she has been these last few years. Yes, she's clear to keep on keeping on.
But for the first time since she recovered from surgery, for the first time in over five years, for the first time since she left the hospital, her heart is worse than it was the last visit. The changes are minor, so minor that her cardiologist isn't worried, so minor that she doesn't need to come back early for monitoring, so minor that she doesn't need to do anything differently, but it is still a step in the wrong direction. It is still an undesirable trend. It is still not as good as last time.
Her echo was great. Her EKG is showing some issues with the electrical system. We got a list of symptoms to watch for--if we see any of them, we go back for a checkup. We got a reminder of the importance of her scheduled checkups. More than one reminder--Dr B may have said its not really a big deal right now but he repeated four times throughout the visit that we MUST keep her next appointment to get a new EKG and checkup. Which, of course I was going to do anyway. I keep a reminder in my phone about setting up the new appointment when the time comes (Oct 2019 will remind me to schedule the next November appointment).
So I keep reminding myself it was a good visit. Don't borrow trouble. And in two years, hope things have swung back to the "getting better" side of things.
Showing posts with label heart. Show all posts
Showing posts with label heart. Show all posts
Friday, November 10, 2017
Wednesday, April 19, 2017
It has been five years
Five years ago today, I handed my daughter over to her medical team.
They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way. She came back to us a maze of tubes and lines and machines and medicine. She was sedated and on a ventilator and it was such a long long night waiting for her to wake up.
Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath. She was still a maze of tubes and wires and had to be sedated often to keep her calm
By April 22nd, she was spending more time awake and even gave me a teensy tiny smile
I spent a lot of time reading to her, particularly Winnie the Pooh, because it helped her stay calm and drift off to sleep.
Finally, on April 23rd, we said goodbye to the maze! She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable
On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got
By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!
The 25th was also an extra special day because we were finally discharged from ICU and went home! She was so very happy to be back in her own bed
She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery
We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about
Before her surgery, she had pretty much stopped growing. Just breathing took so much energy there wasn't much left over for eating. After surgery, though? It was like having a newborn! She nursed alllllllll the time and being asked if she was ready to eat got the best reaction
By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)
Five weeks and one day after surgery, her scars were looking really good!
Today, five years later, she still shows off her scars to people :) She is at cardiologist visits every two years and has no restrictions. Oh, how far we have come!
They put her to sleep, stopped her heart, and sewed in a little gortex patch so her heart could work the right way. She came back to us a maze of tubes and lines and machines and medicine. She was sedated and on a ventilator and it was such a long long night waiting for her to wake up.
Two days after surgery she still required oxygen but they were able to switch to blow by (the blue tube) so it just blew oxygen in her face to help her breath. She was still a maze of tubes and wires and had to be sedated often to keep her calm
By April 22nd, she was spending more time awake and even gave me a teensy tiny smile
Finally, on April 23rd, we said goodbye to the maze! She just has an IV in her foot and her pulse ox but was free from chest tubes and central lines and all the other things that made her so uncomfortable
On April 24th, she was determined to stay awake and not miss anything, no matter how sleepy she got
By April 25th, she was feeling pretty good--she was finally able to get dressed and spent some time playing!
The 25th was also an extra special day because we were finally discharged from ICU and went home! She was so very happy to be back in her own bed
She was a little grumpy, though, because she still had to take a bunch of meds and had to add back thumping to her routine because of the surgery
We had our first outing ten days after surgery on the 29th and she had a wonderful time getting out and about
Before her surgery, she had pretty much stopped growing. Just breathing took so much energy there wasn't much left over for eating. After surgery, though? It was like having a newborn! She nursed alllllllll the time and being asked if she was ready to eat got the best reaction
By May 4th, her steri strips were almost gone and her incisions were looking really good (she has the zipper, two chest tube scars (she calls them her buttons), and faint scarring on her neck from the central line)
Five weeks and one day after surgery, her scars were looking really good!
Today, five years later, she still shows off her scars to people :) She is at cardiologist visits every two years and has no restrictions. Oh, how far we have come!
Sunday, April 19, 2015
Three years ago today......
At this time exactly three years ago, I was sitting by my daughter's side in the PICU watching her chest rise and fall, hearing the whoosh of the ventilator that breathed for her, watching the various monitors that told me her vital signs, seeing the steady drip drip drip of many medications feeding into her lines. It had been a long and emotional day and we had been quietly sitting together for a couple hours at this point. Early that morning I had handed her over to a surgical team, they stopped her heart, they repaired her heart, and they restarted that heart. She had some rough moments that day--when they tried to bring her off bypass, she had heartblock and came back to me with pacer wires embedded in her chest and every so often the alarms would blare, telling us her heart rate had either dropped very low or soared very high. But she was there, she was alive, and I waited.
Today, three years later, I sit beside her as she draws her pictures on scrap paper. She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper. She loves ponies and transformers, cars and twirly skirts. She wants to dance her way everywhere and hates to take a nap in case she misses anything. She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball. She is stubborn and sweet and energetic and just full of awesome.
Happy surgeversary, my love.
Today, three years later, I sit beside her as she draws her pictures on scrap paper. She loves to draw and it doesn't matter to her if she covers the backside of a piece headed for the recycling bin or draws all over a brand new sheet of paper. She loves ponies and transformers, cars and twirly skirts. She wants to dance her way everywhere and hates to take a nap in case she misses anything. She loves to cuddle as much as she loves to go outside and practice kicking the soccer ball. She is stubborn and sweet and energetic and just full of awesome.
Happy surgeversary, my love.
Sunday, August 17, 2014
Yearly cardio visit!
Izzy had her yearly cardio visit last week. There were some very heavy rains the night before so there was a lot of flooding and getting to the hospital was a bit of an adventure! When we finally got there, parts of the hospital, including the parking garage, had been flooded and were being cleaned up and dried out. We were sent up the road a bit to park and then shuttled to and from the hospital--I'm pretty sure the shuttling was Izzy's favorite part :)
Izzy went silent during the appointment and spent most of the time either staring at the floor or hiding her eyes. However, she was mostly cooperative and did respond with head shakes and nods and didn't hide under any chairs or tables ;-) She didn't completely shut down so it's an improvement!
Her echo looks great so we have clearance for another year.
Izzy went silent during the appointment and spent most of the time either staring at the floor or hiding her eyes. However, she was mostly cooperative and did respond with head shakes and nods and didn't hide under any chairs or tables ;-) She didn't completely shut down so it's an improvement!
Her echo looks great so we have clearance for another year.
Friday, July 25, 2014
B has a heart murmur
He did fantastic :) He was very cooperative and followed directions really well. His EKG was normal but the cardio wanted an echo as well because Iz and S both had CHD. It turns out that B has a heart murmur--first I've heard about it! But his echo went beautifully and they got many really clear pictures that show no defects :) Our tech was very thorough and it took a long time but they wanted to be really sure he was okay! So his murmur is being classified as an innocent murmur and he does not need follow-up care and it shouldn't effect him at all.
I was hoping for everything being normal but I'll take an innocent murmur over a more serious diagnosis :)
Thursday, April 17, 2014
Our schedule is getting way too full.....
Its like the floodgates have opened. I spent so long trying to get referrals, trying to find places that could give us some answers, trying to find out the reasons behind why I had this feeling things were "off". And since we switched to this new pediatrician, things have slowly trickled in. We got therapy started for Iz and S for their anxiety, S has been getting special ed services at school to help him with his problem areas, S went to cardiology (where we found out those symptoms chalked up to "FTM worry" all those years ago were actual due to a CHD), we got a referral to genetics for all three kids, a referral to neurology for Iz, we started the evaluation process for B (and kept hitting roadblocks *sigh*). Seems like a lot, eh?
But now? All of that stuff up there was over the course of almost a year. But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations. We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function. Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues. And she has her ophthalmologist appointment coming up as well. B had his intake appointment with neuropsych and is scheduled for a full evaluation. S is scheduled for an intake appointment with the same neuropsych. I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too. Plus all of our normal appointments :p The next month is busy busy busy busy busy :p
But now? All of that stuff up there was over the course of almost a year. But now we have Iz getting a full genetic workup and the geneticist is referring her to neuropsych to get some evaluations. We discovered a problem neurologically so she's got that 24 hour EEG coming up plus her MRI found that cyst in her brain so she has a pediatrician appointment soon to follow-up on that and decide whether we are going to test her pituitary function. Her Early Intervention coordinator and EI playgroup teacher are moving forward with repeating her evaluations to see if she qualifies for special ed services next year to keep her in the program because of her speech/social/anxiety issues. And she has her ophthalmologist appointment coming up as well. B had his intake appointment with neuropsych and is scheduled for a full evaluation. S is scheduled for an intake appointment with the same neuropsych. I finally found a dentist willing to see all three kids (as soon as they hear heart kid, ADHD/SPD, and autism-like behaviors, the dentist offices are "full" or "not equipped") so those appointments are coming up, too. Plus all of our normal appointments :p The next month is busy busy busy busy busy :p
Thursday, August 8, 2013
Cardiology
Iz's cardiology appointment was fantastic.
When we got there, we were the only ones in the waiting room and she had fun walking around and bringing me magazines off the tables :p She loves to just go, pick one up, bring it to me, go back, repeat, over and over LOL The tech came out and called us back and she did NOT like being in the EKG room. She fussed and cried as soon as we walked in and so we got a weight of "about 37 pounds" because she wouldn't hold still long enough for a more accurate weight. Height was a no-go as well so they got a ballpark figure from the one time she held still for a second :\
She was not having any of it when it came to getting the stickers on for the EKG so the tech asked if he could get her a sucker--we didn't even open it, she just held it and looked at it and he got the EKG first try :p
Next we headed to Dr. E's office--she opened her sucker and started licking it and when the doc came in, she fussed at him about having to lay down for an echo until we reminded her she had a sucker. She HATES having people touching her scar so echoes are usually one long scream-fest but that sucker kept her calm and quiet and she laid there watching the screen working her way through that tootsie pop ;-)
The extra heart sounds the doctors were hearing and the clicking I sometimes hear are expected and normal for her--her cardio said that some of it is caused by the fact that she has two superior vena cavas instead of just one (a normal one has a branch from the left and one from the right and they come together in a y before entering the heart. Iz's branches never came together so she has two separate single vessels that feed into her heart. They come from the correct places and both connect to the proper chamber of the heart, they just are separate instead of a y) and some of it is simply a side effect of having surgery and having heart tissue disturbed and "remapped". He says it isn't something to take for granted that the extra sounds are always OK and that is one reason why she has yearly appointments so we can take a good look at her EKG and echo and make sure there are no other problems causing extra sounds. As long as her tests look good (for her), the sounds are just her normal.
The best news of all? Her right pulmonary artery stenosis is GONE. Her surgeon thought there was a chance the narrowed artery could open on its own and grow to match the left once her heart was fixed and the right side was being used normally (the left was overworked because of the blood flowing the wrong way through her VSD and being overcirculated through her lungs) and he was right! It has caught up and her function is beautiful :)
Dr. E said that her heart will never be "normal" because her anatomy and surgery means her EKGs and heart sounds will always be "off" but her function right now is great and at the moment, she has no restrictions. She has her own "normal" and he is optimistic that she will hold steady for a long while. Just don't forget to keep those yearly appointments to make sure ;-)
When we got there, we were the only ones in the waiting room and she had fun walking around and bringing me magazines off the tables :p She loves to just go, pick one up, bring it to me, go back, repeat, over and over LOL The tech came out and called us back and she did NOT like being in the EKG room. She fussed and cried as soon as we walked in and so we got a weight of "about 37 pounds" because she wouldn't hold still long enough for a more accurate weight. Height was a no-go as well so they got a ballpark figure from the one time she held still for a second :\
She was not having any of it when it came to getting the stickers on for the EKG so the tech asked if he could get her a sucker--we didn't even open it, she just held it and looked at it and he got the EKG first try :p
Next we headed to Dr. E's office--she opened her sucker and started licking it and when the doc came in, she fussed at him about having to lay down for an echo until we reminded her she had a sucker. She HATES having people touching her scar so echoes are usually one long scream-fest but that sucker kept her calm and quiet and she laid there watching the screen working her way through that tootsie pop ;-)
The extra heart sounds the doctors were hearing and the clicking I sometimes hear are expected and normal for her--her cardio said that some of it is caused by the fact that she has two superior vena cavas instead of just one (a normal one has a branch from the left and one from the right and they come together in a y before entering the heart. Iz's branches never came together so she has two separate single vessels that feed into her heart. They come from the correct places and both connect to the proper chamber of the heart, they just are separate instead of a y) and some of it is simply a side effect of having surgery and having heart tissue disturbed and "remapped". He says it isn't something to take for granted that the extra sounds are always OK and that is one reason why she has yearly appointments so we can take a good look at her EKG and echo and make sure there are no other problems causing extra sounds. As long as her tests look good (for her), the sounds are just her normal.
The best news of all? Her right pulmonary artery stenosis is GONE. Her surgeon thought there was a chance the narrowed artery could open on its own and grow to match the left once her heart was fixed and the right side was being used normally (the left was overworked because of the blood flowing the wrong way through her VSD and being overcirculated through her lungs) and he was right! It has caught up and her function is beautiful :)
Dr. E said that her heart will never be "normal" because her anatomy and surgery means her EKGs and heart sounds will always be "off" but her function right now is great and at the moment, she has no restrictions. She has her own "normal" and he is optimistic that she will hold steady for a long while. Just don't forget to keep those yearly appointments to make sure ;-)
Wednesday, December 12, 2012
I think the universe is out to get me.....
S had his surgery yesterday--he was very nervous but he was a champ about it all. He was very cooperative and they asked him if he wanted a parent to come back with him until he fell asleep. He asked me to come and held my hand until he was asleep.
We took Izzy downstairs to feed her some breakfast and while waiting in line, I started feeling a little sick. I felt perfectly fine up until that point but soon afterwards, I was in the bathroom throwing up. I felt a little off and spent most of the next hour or so in the waiting room with my eyes closed while the mister entertained Izzy.
When the surgery was done and S was in recovery, we met with the surgeon in a consult room--they successful placed titanium rods in S's two bones so they are nice and straight and have the extra strength to stay in place as they heal. There was one small complication--he had a bump on one of the bones from the healing of the first time he broke it and that was preventing the rod from going in. So they had to open up his arm and repair the bump so he does have an incision along his arm instead of just the two holes at his wrist.
At that point, I commented on how hot the room was and the mister and the doctor thought it was cool. Someone, I'm not sure who, said I was really pale, and the next thing I know, I am on a bed with people poking at me and I have no idea what is going on. I lost huge portions of yesterday and have only scattered memories of most of the rest of the day. I have been told I collapsed and was very confused. My blood pressure was a tad bit high, I had a fever, and I was in tachycardia for many hours. They did not know how long I was in tachycardia before I collapsed and were worried that my heart was going to be damaged so I was admitted to the hospital for observation. I remember waking up in the Children's ER and asking if I hit my head because it hurt (they said no). And then I was in an ambulance but I have no memory of being loaded up in it. I spent some time in the adult hospital ER. I know I was moved to the cardiac observation unit but I don't remember being moved there. I had many EKGs and blood draws and was hooked up to heart monitors all night. At some point overnight my heart rate finally came back to normal and once it has stayed normal for several hours they did one last check of my heart--no damage. It appears I had a perfect storm of a virus, stress, the onset of a migraine, slight dehydration, and the pain from the infection in my arm that led to the tachycardia and collapse. Scary stuff, my friends. I really do not ever want to wake up full of tubes and wires again and not know what is happening or why :/
I was told that S was sick from the anesthesia and threw up a lot most of the evening but he feels much better today and is glad I am home. He was very worried because he knew something bad must have happened to keep me from taking care of him while he was recovering. Poor little guy :( Izzy had a hard time of it, too, and has not left my side since I got home this afternoon. B just thought he got a fun sleepover at Grandma and Grandpa's LOL
Sunday, September 9, 2012
The Birthday Girl
A year ago today, I went in for my regularly scheduled appointment at Maternal Fetal Medicine for one last ultrasound before Iz was scheduled to be born. It was Friday morning and I had just been released from L&D the night before where I had been admitted Wednesday morning for abnormal lab work. They had run a bunch of labs, monitored us overnight, treated me for fetal tachycardia that they never could explain, and then discharged me when everything came up normal again. MFM was surprised to see me because they figured having spent the past two days in the hospital being monitored, I would skip my appointment. We did my NST and headed for ultrasound and within moments we were being ushered out of the office and told to go straight for the hospital, to not even stop for a coffee (for the husband), and to please hurry. My amniotic fluid had gone down dangerously low and Iz needed to be born on the ninth instead of the twelfth. It wasn't a case of she must come out right now but it was a case of she must be monitored immediately while we wait in case it does become a case of RIGHT NOW.
So off we went and we waited. And waited. And waited. Originally, we were just waiting for an eight hour window since I had last eaten but we kept getting bumped for emergency c-sections. I was hungry and uncomfortable (those beds in pre-op? awful awful things.....) but I was glad to not be an emergency--meant my girl was doing ok in there, despite the problems (kinda prophetic, huh? We would spend months being glad that while things were bad, they weren't as bad as they could be....). Finally, at 7:52pm all 7lbs 8oz 19inches of her was born and we had many cuddles :) It would be nearly twelve hours before someone would say the words "heart murmur" to us and two days before the words "open heart surgery" were first heard. For those few hours that closed out the ninth, though, we were getting to know this perfect little being who was a champion nurser and cuddler with the pink skin and blue eyes and dark hair.
One year later and she has lived through and conquered more than some people do in a lifetime and I am in awe of her. Heart failure, failure to thrive, open heart surgery, recovery. For the moment, she is doing great and that is enough. Whatever problems may arise in the future, whatever complications or delays may or may not happen, they are something to worry about another day. Today was all about doing the things Iz likes most :)
First up, her favorite meal of the day--breakfast. We took her out and she enjoyed packing away more food than normal :p She usually sticks to eggs and toast or pancakes but today she was feeling adventurous and she snitched bacon off my plate and became a fan, she tried a couple kinds of sausage, she ate some quiche, she tried some yogurt again (last time she was so not a fan, this time she asked for more), and some ham (which she does like but for dinner or lunch).
Next up was the zoo :) She loves activities that involve being pushed around in her stroller LOL
Today was also the zoo's Day of Honor so we got to see firefighters, police, military dogs, the navy, the marines and I am sure there are more I am forgetting. Iz flirted with everyone and the boys enjoyed getting into every vehicle they could ;)
Iz's favorite part of the zoo has always been the elephants and our zoo has four of them so we spent a lot of time watching them :) Usually if we stop walking, she will squawk at us to get moving but if there are elephants, she will happily sit there and just watch.
She slept all the way home :) Being pushed around looking at animals is exhausting!
Next activity was to play in the yard. She loves to try to climb her brother's toddler slide and to crawl around and to try and pick my tomatoes :p
Next stop was Grandma and Grandpa's for some BBQ and then home for presents!
She had lots of help from her brothers ;)
And in the end only really cared about the ribbons.....
I think the whole cake thing may have scared her
But before we could even get her dress off, she had leaned forward and helped herself to a big handful of cake :p She was quite mad at us for cleaning her hands so we could get her dress off unstained :p A piece of cake calmed her right down, though
So off we went and we waited. And waited. And waited. Originally, we were just waiting for an eight hour window since I had last eaten but we kept getting bumped for emergency c-sections. I was hungry and uncomfortable (those beds in pre-op? awful awful things.....) but I was glad to not be an emergency--meant my girl was doing ok in there, despite the problems (kinda prophetic, huh? We would spend months being glad that while things were bad, they weren't as bad as they could be....). Finally, at 7:52pm all 7lbs 8oz 19inches of her was born and we had many cuddles :) It would be nearly twelve hours before someone would say the words "heart murmur" to us and two days before the words "open heart surgery" were first heard. For those few hours that closed out the ninth, though, we were getting to know this perfect little being who was a champion nurser and cuddler with the pink skin and blue eyes and dark hair.
One year later and she has lived through and conquered more than some people do in a lifetime and I am in awe of her. Heart failure, failure to thrive, open heart surgery, recovery. For the moment, she is doing great and that is enough. Whatever problems may arise in the future, whatever complications or delays may or may not happen, they are something to worry about another day. Today was all about doing the things Iz likes most :)
First up, her favorite meal of the day--breakfast. We took her out and she enjoyed packing away more food than normal :p She usually sticks to eggs and toast or pancakes but today she was feeling adventurous and she snitched bacon off my plate and became a fan, she tried a couple kinds of sausage, she ate some quiche, she tried some yogurt again (last time she was so not a fan, this time she asked for more), and some ham (which she does like but for dinner or lunch).
Next up was the zoo :) She loves activities that involve being pushed around in her stroller LOL
Today was also the zoo's Day of Honor so we got to see firefighters, police, military dogs, the navy, the marines and I am sure there are more I am forgetting. Iz flirted with everyone and the boys enjoyed getting into every vehicle they could ;)
Iz's favorite part of the zoo has always been the elephants and our zoo has four of them so we spent a lot of time watching them :) Usually if we stop walking, she will squawk at us to get moving but if there are elephants, she will happily sit there and just watch.
She slept all the way home :) Being pushed around looking at animals is exhausting!
Next activity was to play in the yard. She loves to try to climb her brother's toddler slide and to crawl around and to try and pick my tomatoes :p
Next stop was Grandma and Grandpa's for some BBQ and then home for presents!
She had lots of help from her brothers ;)
And in the end only really cared about the ribbons.....
I think the whole cake thing may have scared her
But before we could even get her dress off, she had leaned forward and helped herself to a big handful of cake :p She was quite mad at us for cleaning her hands so we could get her dress off unstained :p A piece of cake calmed her right down, though
Wednesday, August 8, 2012
3 month post-op cardiologist visit
Iz was mostly cooperative during her EKG but she let it be known that she did NOT like the Echo. She does not like her scar to be touched by anyone but me and occasionally Daddy and even then, its only when she asks for it to be touched (she loves to be massaged and asks for it daily). Poor little mite looked so betrayed when we let Dr E continue to press the wand on her scar :/
It was a great appointment, though! Her blood pressure was really great, 94/60. She was 29.5 inches and 19 lbs 13 oz--gains in length and weight :) Last appointment back in May two weeks after surgery she was 29 in and 14 lbs 4 oz so Dr E was quite pleased with her growth.
The echo shows that her right pulmonary artery is still half the size of the left one. But it does not affect her at all so as long as it doesn't start restricting further, we should be fine. Dr E said that even if it does start restricting, the left will pick up the slack and we wouldn't see any outward signs and it would have to be picked up on echo. Fingers crossed that it just hangs out as is and never needs intervention :p
There are no leaks around her patch and he can see where her heart tissue is growing over and across it--he said eventually it would be completely surrounded by her heart. Reminds me of a tree we saw one day when we took the kids to the natural history museum; it was growing around and over a sign pegged to it. Won't be too long before the sign is completely enclosed by the tree.
The best news of all was that her heart is back to normal size :) We were warned that the enlargement would persist for months, maybe even a year, so I was hopeful that it would have gone done some but was not expecting to hear it went all the way :)
We have been cleared for yearly visits. One hand, that is fantastic! On the other hand, eek, I have to wait an entire year to be reassured that nothing has gone wrong? OY.
It was a great appointment, though! Her blood pressure was really great, 94/60. She was 29.5 inches and 19 lbs 13 oz--gains in length and weight :) Last appointment back in May two weeks after surgery she was 29 in and 14 lbs 4 oz so Dr E was quite pleased with her growth.
The echo shows that her right pulmonary artery is still half the size of the left one. But it does not affect her at all so as long as it doesn't start restricting further, we should be fine. Dr E said that even if it does start restricting, the left will pick up the slack and we wouldn't see any outward signs and it would have to be picked up on echo. Fingers crossed that it just hangs out as is and never needs intervention :p
There are no leaks around her patch and he can see where her heart tissue is growing over and across it--he said eventually it would be completely surrounded by her heart. Reminds me of a tree we saw one day when we took the kids to the natural history museum; it was growing around and over a sign pegged to it. Won't be too long before the sign is completely enclosed by the tree.
The best news of all was that her heart is back to normal size :) We were warned that the enlargement would persist for months, maybe even a year, so I was hopeful that it would have gone done some but was not expecting to hear it went all the way :)
We have been cleared for yearly visits. One hand, that is fantastic! On the other hand, eek, I have to wait an entire year to be reassured that nothing has gone wrong? OY.
Monday, July 16, 2012
Lessons
S takes after his Daddy--they are both very mechanical and need to know how things work. Documentaries are a favorite in our house, especially ones that cover how things are made or how they work. When S found out Miss Iz was ill, he had to know how and why and as many of the details as he could find out. He needed a run down of her surgery before it happened, had to know where she would be cut, how they would get to her holes, what they would do to fix it. It was hard enough just wrapping my mind around the fact that the surgery was going to happen and then I had to do a step-by-step in kid language :p But until he felt he understood what would happen and why, S could not be calm about it. Once he knew, for him it was simply a matter of waiting for it to happen.
Our experiences have sparked an interest in surgeons of all types and surgeon has made it onto his list of things to be when he grows up (along with garbage man, race car driver, policeman, Indiana Jones, fireman, and a Jedi. But not a pilot since he says he would get sick if he had to go up in the air and have turbulence every day...). Not too long ago, he was picking out something to watch together on Netflix and we settled on Gifted Hands: The Ben Carson Story. Ben Carson is a neurosurgeon and S was fascinated with the different procedures Carson helped to develop and/or perfect. We checked out some books from the library about Carson and one of them, Think Big, has been making my brain turn and turn and turn ;)
In a lot of ways, Carson reminds me of our heart surgeon, Dr W--the kind manner, the humble demeanor where you feel as though he thinks of you as equals, just with different strengths. Carson stresses often the fact that just being blessed with gifts that make him an excellent surgeon is not enough. He relies on all manner of people around him--those that influenced him as a child, those that mentored him, those that support him, the parents and patients who place their trust in him. He writes of the good and the bad, his successes and failures. He talks about the good things that have come from patients he lost--the knowledge gained, the specialized equipment that was available later to save others, etc. I can't help but think of Iz as I read--so many came before her. Whether the child lived or died, the surgeons were learning and gaining experience and perfecting the techniques that today save so many. My uncle was a CHD baby; he died around a week old. I wonder what things his doctors learned from him--was their experiences with him instrumental in another baby living?
Carson often deals with the cases no one else will take. He writes about how sometimes, the only response he has to a parent wondering about whether or not their child has a chance is to think of the alternative. Certain death versus a chance. Even if hope is slim, it is still hope. I can't help but think of all the heart parents before me who had the same choice--think of the alternative. Their choices to go for it, whether successful or not, helped my Iz. Parents today are still making the hard choices, still losing their little ones, still taking the chance. Surgeons are still learning. Perhaps helping Iz through her complications helped her surgeon for the next time. Perhaps the heart babies lost recently in the online community helped their surgeons learn and do more in the future.
I wish to thank those who came before, who are walking this journey now, who will do so in the future. Each surgery, each outcome, each complication, each loss, each success, all of them help build the knowledge that will make things better in the future. When my grandmother gave birth, her baby couldn't be saved. By the time I had my babies, many have been saved. Perhaps by the time my babies have their babies, all will be saved.
Our experiences have sparked an interest in surgeons of all types and surgeon has made it onto his list of things to be when he grows up (along with garbage man, race car driver, policeman, Indiana Jones, fireman, and a Jedi. But not a pilot since he says he would get sick if he had to go up in the air and have turbulence every day...). Not too long ago, he was picking out something to watch together on Netflix and we settled on Gifted Hands: The Ben Carson Story. Ben Carson is a neurosurgeon and S was fascinated with the different procedures Carson helped to develop and/or perfect. We checked out some books from the library about Carson and one of them, Think Big, has been making my brain turn and turn and turn ;)
In a lot of ways, Carson reminds me of our heart surgeon, Dr W--the kind manner, the humble demeanor where you feel as though he thinks of you as equals, just with different strengths. Carson stresses often the fact that just being blessed with gifts that make him an excellent surgeon is not enough. He relies on all manner of people around him--those that influenced him as a child, those that mentored him, those that support him, the parents and patients who place their trust in him. He writes of the good and the bad, his successes and failures. He talks about the good things that have come from patients he lost--the knowledge gained, the specialized equipment that was available later to save others, etc. I can't help but think of Iz as I read--so many came before her. Whether the child lived or died, the surgeons were learning and gaining experience and perfecting the techniques that today save so many. My uncle was a CHD baby; he died around a week old. I wonder what things his doctors learned from him--was their experiences with him instrumental in another baby living?
Carson often deals with the cases no one else will take. He writes about how sometimes, the only response he has to a parent wondering about whether or not their child has a chance is to think of the alternative. Certain death versus a chance. Even if hope is slim, it is still hope. I can't help but think of all the heart parents before me who had the same choice--think of the alternative. Their choices to go for it, whether successful or not, helped my Iz. Parents today are still making the hard choices, still losing their little ones, still taking the chance. Surgeons are still learning. Perhaps helping Iz through her complications helped her surgeon for the next time. Perhaps the heart babies lost recently in the online community helped their surgeons learn and do more in the future.
I wish to thank those who came before, who are walking this journey now, who will do so in the future. Each surgery, each outcome, each complication, each loss, each success, all of them help build the knowledge that will make things better in the future. When my grandmother gave birth, her baby couldn't be saved. By the time I had my babies, many have been saved. Perhaps by the time my babies have their babies, all will be saved.
Sunday, July 15, 2012
A post in which I think too much....
My first pregnancies, I could always tell I was pregnant long before I could get a positive test. The changes I felt physically were pretty clear and it was only a matter of waiting a few weeks before we got that positive. Unfortunately, for those first few times, miscarriage was waiting for us, once on the same day we got our positive and the others within a few days. By the time I was pregnant with S, I refused to acknowledge the tell-tale signs. I was insistent that it was coincidence, that my husband was wrong about the fact that we were, indeed, pregnant again. But things kept on. We tested and still they kept on. We waited and still they kept on. We passed the point of our longest pregnancy and still they kept on. We had a baby :)
Three years later and the familiar symptoms sent us to get a test and like before, things kept keeping on. We had a baby :)
Almost two years later, I had a strange burning pain in my right thigh. The only time I had ever felt that pain was in my second trimester with B. But I always knew early on when I was pregnant so it couldn't be, could it? A positive test said it could. I went to my doctor to confirm and when I got home from the office, bleeding. This pregnancy was surprising--I never got a period back because I was breastfeeding--and here it was, leaving almost as soon as I suspected it. My doctor asked me to come back in in a few days and have another blood draw, just to check. Despite the bleeding, my numbers were still going up. Things kept on. The bleeding stopped. I saw the OB and we found out that we were not a few weeks along, we were several months along....good thing I take a prenatal every day, pregnant or not, eh? We had a baby :)
Several doctors have told me that the most common reason for miscarriage is because the baby isn't developing correctly. That the children I will never hold in my arms most likely couldn't have made it and that is why they miscarried. Sometimes I think about that dark week after we found out about Iz, the week of bleeding and cramping and sadness and tears and pain. The week where we rejoiced at the thought of a new baby and mourned that baby, thinking that we had to say good-bye once again. I look at her now and I wonder if it was connected to her heart and the fact that it didn't completely form? I can't imagine not having her here with us. I can't imagine not loving her and holding her and crying over her and worrying about her and rejoicing over her. I can't imagine saying good-bye to her before I even met her. I think, too, about the little ones who were not meant to be. I wonder if their little hearts didn't fully form and if that is why we lost them right around the time those little hearts should have started to beat.
I think perhaps I think too much. But the thoughts rattling around in my head often quiet down after I write them out so perhaps I can now stop thinking about that week where we, for the first time of many, worried that our little Iz wouldn't make it....
Three years later and the familiar symptoms sent us to get a test and like before, things kept keeping on. We had a baby :)
Almost two years later, I had a strange burning pain in my right thigh. The only time I had ever felt that pain was in my second trimester with B. But I always knew early on when I was pregnant so it couldn't be, could it? A positive test said it could. I went to my doctor to confirm and when I got home from the office, bleeding. This pregnancy was surprising--I never got a period back because I was breastfeeding--and here it was, leaving almost as soon as I suspected it. My doctor asked me to come back in in a few days and have another blood draw, just to check. Despite the bleeding, my numbers were still going up. Things kept on. The bleeding stopped. I saw the OB and we found out that we were not a few weeks along, we were several months along....good thing I take a prenatal every day, pregnant or not, eh? We had a baby :)
Several doctors have told me that the most common reason for miscarriage is because the baby isn't developing correctly. That the children I will never hold in my arms most likely couldn't have made it and that is why they miscarried. Sometimes I think about that dark week after we found out about Iz, the week of bleeding and cramping and sadness and tears and pain. The week where we rejoiced at the thought of a new baby and mourned that baby, thinking that we had to say good-bye once again. I look at her now and I wonder if it was connected to her heart and the fact that it didn't completely form? I can't imagine not having her here with us. I can't imagine not loving her and holding her and crying over her and worrying about her and rejoicing over her. I can't imagine saying good-bye to her before I even met her. I think, too, about the little ones who were not meant to be. I wonder if their little hearts didn't fully form and if that is why we lost them right around the time those little hearts should have started to beat.
I think perhaps I think too much. But the thoughts rattling around in my head often quiet down after I write them out so perhaps I can now stop thinking about that week where we, for the first time of many, worried that our little Iz wouldn't make it....
Thursday, June 14, 2012
9 Month Well Child Check
I was so dreading this visit :p I dread all dr's visits now--always expecting bad news..... But things were fine. Iz is up to 17 pounds 1.4 ounces, she has hit all the milestones the ped was looking for, her lungs and heart sound good and there is still no murmur (yay!) so the ped thinks that there is no leakage around the patch :) Or at least if there is, it is minor enough not to sound like anything ;)
While we were there, she also checked out my Busy Little B's ears, again. He has not been able to pass the hearing test through Early Intervention and they have tried once a month for a while now. At first we thought it may have been due to the ear infection he had the month before his first hearing test but the next month, he still failed. Last month I took him to the ped, she checked him out and made sure his ears were all clear and EI did the hearing test again. Failed. So the ped is referring him to the Children's Hospital to get a more in-depth hearing test.
I have mixed feelings about this. Not that I don't want him to get his hearing checked--I do! If there is a problem, I want to know so we can treat it (and if there isn't, I also want to know so I don't have to worry about it). But going to the Children's Hospital makes me nervous, anxious, a little scared. Its completely irrational, I know. After all, they gave Iz back her quality of life. They fixed her. She is doing so great and is happy and growing and awesome. But the CH is also filled with tears and fear and panic and very dark moments. At the moment, the dark places are winning. Keep reminding me of all the good there is, too, so when it comes time to take B I won't be a basket case ;0)
I should have charged the laptop earlier--I have some nice photos of the kids from our walk today that I would like to post. Perhaps I will have time tomorrow if I can convince the kidlets to both nap at the same time (which happens almost never). Last day of school for S! Summertime has arrived :D
While we were there, she also checked out my Busy Little B's ears, again. He has not been able to pass the hearing test through Early Intervention and they have tried once a month for a while now. At first we thought it may have been due to the ear infection he had the month before his first hearing test but the next month, he still failed. Last month I took him to the ped, she checked him out and made sure his ears were all clear and EI did the hearing test again. Failed. So the ped is referring him to the Children's Hospital to get a more in-depth hearing test.
I have mixed feelings about this. Not that I don't want him to get his hearing checked--I do! If there is a problem, I want to know so we can treat it (and if there isn't, I also want to know so I don't have to worry about it). But going to the Children's Hospital makes me nervous, anxious, a little scared. Its completely irrational, I know. After all, they gave Iz back her quality of life. They fixed her. She is doing so great and is happy and growing and awesome. But the CH is also filled with tears and fear and panic and very dark moments. At the moment, the dark places are winning. Keep reminding me of all the good there is, too, so when it comes time to take B I won't be a basket case ;0)
I should have charged the laptop earlier--I have some nice photos of the kids from our walk today that I would like to post. Perhaps I will have time tomorrow if I can convince the kidlets to both nap at the same time (which happens almost never). Last day of school for S! Summertime has arrived :D
Wednesday, June 13, 2012
Will there come a day when I am not so nervous?
Iz has a doctor's appointment tomorrow. Just her nine month well check. Height, weight, milestone checklist. No biggie, right? Then why do I fell so sick to my stomach? Why am I waiting for the bad news? Why am I so nervous about a perfectly ordinary well baby visit? I wonder if the day will come when taking her to a doctor is no big deal, just another stop along the way? Or will each visit bring that breathless feeling? Will she be fifty years old and I wait by the phone, worried, until she calls me and says she got another ok? (or at least I hope she wants to call me.....I have a feeling I will worry about this daughter of mine and her heart til the day I die.....)
Wednesday, May 30, 2012
The Mommy Wars
Iz is my third child so she is my third round of The Mommy Wars (and if you don't know what that is, consider yourself lucky). It seems as though everywhere I go, either online or in real life, I run across moms who fall into one of two camps: my kid is better than yours or my kid is worse off than yours. My preference? To run into moms who do not believe they are in a competition ;) Unfortunately, I run into far more who are trying to "win." I am pround when my kids do something early.....but it doesn't make them better. Just early in one area and probably behind in another LOL. When my boys were little and I'd run across another mom who wanted to one-up me by having the better kid, I could usually be found walking away and going to play with my little guys.
I expected more of the same with Isabelle only maybe a little worse since her heart made her too tired to develop most of those "bragable" skills and she was and still is behind. I am pretty matter-of-fact about it--nope, she has not hit X or Y milestone yet and that's okay. Sometimes that is enough to stop the War in its track but I have been caught by surprise a few times and gotten the seemingly smug "oh, yeah, well MY baby hasn't done X, Y OR Z yet." Um, okay. We are competing in the other direction, I guess?
One thing that I am very grateful for is those moms I have run across who don't care who is first or last--they just care about sharing experiences and stories and offering support. My friend C who has a girl just eight days older than Iz and loves to share and worry and watch along with me as both our girls (and boys) grow and explore and figure out the world. Dear D who tells the stories of her own boys and their ups and downs. S who celebrates each belated milestone and is just happy Iz made it :) And the wonderful online heart baby community where so much love and advice and support is given. I cannot think of one time where anyone has pulled the "but my baby" card. In the heart world, Izzy's VSD is "minor", not as severe or scary as some of the other defects--but parents with babes with much scarier defects never say they have more reason to fear. They empathize, they offer encouragement, they recognize that fear is fear and we all need someone to share in that. The entire group rejoices when a baby is born and the heart is better than expected, they pray just the same for open heart surgery as they do for a cath, they offer support no matter what. While I wish no one ever had to deal with the uncertainty and worry and grief of a CHD, how wonderful that we have a "war-free zone" to retreat to for support.
I expected more of the same with Isabelle only maybe a little worse since her heart made her too tired to develop most of those "bragable" skills and she was and still is behind. I am pretty matter-of-fact about it--nope, she has not hit X or Y milestone yet and that's okay. Sometimes that is enough to stop the War in its track but I have been caught by surprise a few times and gotten the seemingly smug "oh, yeah, well MY baby hasn't done X, Y OR Z yet." Um, okay. We are competing in the other direction, I guess?
One thing that I am very grateful for is those moms I have run across who don't care who is first or last--they just care about sharing experiences and stories and offering support. My friend C who has a girl just eight days older than Iz and loves to share and worry and watch along with me as both our girls (and boys) grow and explore and figure out the world. Dear D who tells the stories of her own boys and their ups and downs. S who celebrates each belated milestone and is just happy Iz made it :) And the wonderful online heart baby community where so much love and advice and support is given. I cannot think of one time where anyone has pulled the "but my baby" card. In the heart world, Izzy's VSD is "minor", not as severe or scary as some of the other defects--but parents with babes with much scarier defects never say they have more reason to fear. They empathize, they offer encouragement, they recognize that fear is fear and we all need someone to share in that. The entire group rejoices when a baby is born and the heart is better than expected, they pray just the same for open heart surgery as they do for a cath, they offer support no matter what. While I wish no one ever had to deal with the uncertainty and worry and grief of a CHD, how wonderful that we have a "war-free zone" to retreat to for support.
Tuesday, May 29, 2012
I'll Be Leaving Now....
I was reading an online discussion the other day about the morning of surgery and how people react. Some talked of wanting to pack up their kiddo and go home, even though they knew deep down that it was irrational because their little one needed the surgery. But the urge is still there to just go and pretend all is well. I was thinking back to the morning of Izzy's surgery--did I start to gather her up and take her home? No, but I think the main reason was because I kept thinking of my Uncle Jeff. Born in the fifties with heart defects, he never made it home from the hospital and died about a week after he was born. I thought of my Grandmother so much in those days and weeks and hours leading up to surgery and afterwards.
The morning of surgery was such an odd mix of fear and giddiness. I don't think the fear needs any explanation but the giddiness stemmed from such relief that it was time, no more postponements, no more waiting. It was time. Time for a repair, time for the chance Jeff never got, time to trust that the surgeon we loved so very much was as good as he said he was.
We had about an hour in pre-op with her before they took her back and we met with the surgeon again, we met with nurses who would be looking after us and nurses who would be looking after Iz. We met with people I can't even remember ;) I think, though, that the most important person at that moment that we met with was the anesthesiologist and her nurse. They came to talk about what would happen on their end (again, since we had met with someone the day before for an overview. But that morning was the two people who would actually be right there, watching over my baby). The anesthesiologist nurse stayed with us most of the hour, chatting, asking questions about Iz, making small talk. We laughed over things, she eased our fears, she got to know us. We felt comfortable with her. She reminded me of the wonderful anesthesia nurse I had for my surgery when Iz was born. When it was time for Iz to go back, she carried her because Iz was already comfortable with her and was happy to be cuddled by her. If I couldn't be there for Iz, at least a friendly familiar face was while she went to sleep. I will be forever grateful to that nurse for keeping the fear at bay and letting the giddiness come through. It meant that my last hour with Iz before surgery was filled with cuddles and kisses and laughter instead of tears (there were PLENTY of those after she left us.....).
Giddiness seems such a strange word for the situation but it is the best one I can think of.
The morning of surgery was such an odd mix of fear and giddiness. I don't think the fear needs any explanation but the giddiness stemmed from such relief that it was time, no more postponements, no more waiting. It was time. Time for a repair, time for the chance Jeff never got, time to trust that the surgeon we loved so very much was as good as he said he was.
We had about an hour in pre-op with her before they took her back and we met with the surgeon again, we met with nurses who would be looking after us and nurses who would be looking after Iz. We met with people I can't even remember ;) I think, though, that the most important person at that moment that we met with was the anesthesiologist and her nurse. They came to talk about what would happen on their end (again, since we had met with someone the day before for an overview. But that morning was the two people who would actually be right there, watching over my baby). The anesthesiologist nurse stayed with us most of the hour, chatting, asking questions about Iz, making small talk. We laughed over things, she eased our fears, she got to know us. We felt comfortable with her. She reminded me of the wonderful anesthesia nurse I had for my surgery when Iz was born. When it was time for Iz to go back, she carried her because Iz was already comfortable with her and was happy to be cuddled by her. If I couldn't be there for Iz, at least a friendly familiar face was while she went to sleep. I will be forever grateful to that nurse for keeping the fear at bay and letting the giddiness come through. It meant that my last hour with Iz before surgery was filled with cuddles and kisses and laughter instead of tears (there were PLENTY of those after she left us.....).
Giddiness seems such a strange word for the situation but it is the best one I can think of.
Friday, May 4, 2012
When does it seem real?
For almost six months I have given medicines twice a day, have gone to countless doctor's appointments, have worried and watched as Iz had trouble breathing, felt her heart thudding in her chest as it worked too hard, heard her swish-swish-swish heartbeat from her murmur, been through surgery, daily see her OHS scar, see the numerous little wounds from her various IVs and lines, see the spots where various leads were attached and the adhesive has not yet worn off. There are numerous little signs and memories of all of it.
So why, in those first few moments after waking, do I still think it must all be a dream because surely all of those things couldn't have happened to us?
For almost six months I have given medicines twice a day, have gone to countless doctor's appointments, have worried and watched as Iz had trouble breathing, felt her heart thudding in her chest as it worked too hard, heard her swish-swish-swish heartbeat from her murmur, been through surgery, daily see her OHS scar, see the numerous little wounds from her various IVs and lines, see the spots where various leads were attached and the adhesive has not yet worn off. There are numerous little signs and memories of all of it.
So why, in those first few moments after waking, do I still think it must all be a dream because surely all of those things couldn't have happened to us?
Wednesday, May 2, 2012
Cardiology Checkup
Today was Izzy's one week from discharge cardiology appointment (tomorrow will be two weeks out from surgery). She is healing great :) Dr E was very pleased with her EKG and her echo and says her incision is healing nicely. He said to finish out her blood pressure meds and lasix and when these bottles are gone, go ahead and take her off them. If she shows any signs of heart distress, bring her in and they'll check her over to see if she needs the meds for a bit longer but he's pretty confident that once the next few weeks of meds are over, she will be okay without them. Best of all, she has been cleared to wait three months before her next appointment :D YAY!
Tuesday, May 1, 2012
One week, two weeks
Tomorrow, Wednesday, will be one week since Iz was discharged from the hospital. She has her cardiologist appointment in the afternoon and we had better see some weight gain on this girl :p I cannot believe how much she has been eating this past week--its like she is making up for all the times she was just too tired and didn't eat all that she could have. A few weeks back, she gained in length but not weight so her cute little pudgy thighs slimmed down and she no longer had the little leg rolls. During her bath tonight, what did I see? Little pudge leg rolls! Not as big as before but they are coming back so surely that means a nice gain, right? Unless she slimmed down somewhere else so she could grow her leg rolls back :p
On Thursday, she will be two weeks out from open heart surgery. It is hard for us to believe since she is twisting and turning and bouncing and rocking and rolling and sometimes even sleeping on her tummy/chest. It seems like she should be taking it easier but our girl is ready to play hard and long. Amazingly enough, even with all of her movement and play today, she did not need painkillers until bedtime when it all caught up to her.
She is amazing :)
On Thursday, she will be two weeks out from open heart surgery. It is hard for us to believe since she is twisting and turning and bouncing and rocking and rolling and sometimes even sleeping on her tummy/chest. It seems like she should be taking it easier but our girl is ready to play hard and long. Amazingly enough, even with all of her movement and play today, she did not need painkillers until bedtime when it all caught up to her.
She is amazing :)
Monday, April 30, 2012
Amazing :)
Part of our discharge instructions were to give Iz a bath every day (either sponge or in her baby tub with just her butt in the water since her incision can't be submerged) so we can gently wash the incision site with warm water and baby soap and then rinse and gently pat dry. Dr W says he uses a plastic surgeon's closure to minimize scarring so there are no external sutures, just the steri strips. The strips are starting to peel off--none have come off completely yet but we are getting a few tiny glimpse of the incision underneath.
The little bit we are seeing looks AMAZING. It looks like someone drew a line on her chest with a pen. We were warned that some people, even though the initial scarring is thin and light, will grow scar tissue and make it bigger and wider and raised but we are hoping Iz takes after me--my first c-section scar was nearlly non-existent. You had to look really really closely to see the very faint line. Of course, crappy closure work by my next surgeon means I had a big ugly bumpy scar--the surgeon who delivered Iz repaired a little bit of that and the scar, while not as faint and fine as the first time around, looks better. Anyway, back from the sidetrack ;) At this point, we are very optimistic about Iz's chances of having almost no noticeable scarring. We've good luck with Vitamin E creams and oils in the past with clearning up small scars from our klutzy boys and Dr W says that he has seen them help and encourages us to go ahead and use it after she is all healed for a few times a day for the next year to help shrink the scar down.
I know it seems vain to be worried about her scar. It probably is. But my girl has been through so much already and will continue to go through so much--even though her main defects are "fixed", she will see a cardiologist for the rest of her life. The RPA stenosis could require procedures in the future. Her cardio team told us she is at higher risk for valve and heart muscle problems later on and she has to be monitored for those issues for her entire life. She has months of meds and checkups she hates ahead of her. When she is a teenager, I would really like if she didn't feel self-consious about the scarring. She may be one of those who view it as a badge of triumph. Or she could be one of those who feels like it just screams she is different when she doesn't want to be. I don't know. I'd rather she not have to worry about it.
The little bit we are seeing looks AMAZING. It looks like someone drew a line on her chest with a pen. We were warned that some people, even though the initial scarring is thin and light, will grow scar tissue and make it bigger and wider and raised but we are hoping Iz takes after me--my first c-section scar was nearlly non-existent. You had to look really really closely to see the very faint line. Of course, crappy closure work by my next surgeon means I had a big ugly bumpy scar--the surgeon who delivered Iz repaired a little bit of that and the scar, while not as faint and fine as the first time around, looks better. Anyway, back from the sidetrack ;) At this point, we are very optimistic about Iz's chances of having almost no noticeable scarring. We've good luck with Vitamin E creams and oils in the past with clearning up small scars from our klutzy boys and Dr W says that he has seen them help and encourages us to go ahead and use it after she is all healed for a few times a day for the next year to help shrink the scar down.
I know it seems vain to be worried about her scar. It probably is. But my girl has been through so much already and will continue to go through so much--even though her main defects are "fixed", she will see a cardiologist for the rest of her life. The RPA stenosis could require procedures in the future. Her cardio team told us she is at higher risk for valve and heart muscle problems later on and she has to be monitored for those issues for her entire life. She has months of meds and checkups she hates ahead of her. When she is a teenager, I would really like if she didn't feel self-consious about the scarring. She may be one of those who view it as a badge of triumph. Or she could be one of those who feels like it just screams she is different when she doesn't want to be. I don't know. I'd rather she not have to worry about it.
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