And what did Will think of the festival...well, let's just say he was not impressed.
Saturday, June 19, 2010
At the Festival
We went to the festival at my church last night. It was the first time Julianna has really been old enough to go on rides (she went on one at the county fair last year, but really didn't care). She went down the big slide, jumped in the bouncy dragon and rode on the "horsies" a bunch. The horsies were her favorite. Even now as I am typing my post she is pointing at the picture of her on the horsie yelling "I want to ride the horsie mommy!".
And what did Will think of the festival...well, let's just say he was not impressed.
And what did Will think of the festival...well, let's just say he was not impressed.
Tuesday, June 15, 2010
That Darn Aorta
Will's cardiology appointment had its ups and downs today. Some of the ups were that he is now 10lbs 2oz (that's almost a 1lb weight gain in 2 weeks!), his EKG was good, both his blood pressures were good & his O2 was 100%. But the best up of all came during his echo.
Just like every echo Will has had, Dr. Awesome came in after the tech was done and did some "looking around" of his own. He said that if he didn't know Will's history of a hypoplastic and mis-shapen left ventricle, he would never know there was a problem. His left ventricle is now normal size and shape and is functioning completely normally. NORMAL! Normal not just in function, but in size and shape! He said that is an amazing thing that he could have never predicted. I'll chalk that one up to prayer! Because his heart is functioning normally now, he was taken off of his captopril, lasix & potassium chloride. This means his only meds now are his digoxin (for heart function), zantac for reflux and his vitamin! This also means I no longer have to wake him in the morning or at 11pm to give him meds! He will only have meds at 8am and 8pm! WOOHOO!!
The down also came during the echo. Since Will's coarctation could not be completely repaired during his surgery, it is one of the main areas of concern for Will. Dr. Awesome was hoping it would grow along with Will and not become a problem, but unfortunately it is getting slightly worse. At his last appointment the highest gradient they measured across the remaining coarc was 55...today it was 78. The things that baffles Dr. Awesome is that the echo and Will's exam are not matching up.
According to the echo, the still narrow part of Will's aorta should be causing a whole host of problems for him. He should be having trouble breathing, the blood flow to the lower half of his body should limited and we should see blue limbs and weak pulses, he should not be gaining weight, he should get tired very easily, and his left ventricle should be working much harder than it is. But he is not having any of those problems. He breathes fine, he is pink all over with strong pulses, he is gaining weight at a good rate and is awake for long stretches during the day, and his left ventricle is not hypertrophied (bigger due to overworking). His little heart and body is compensating for the still narrowed aorta.
Dr. Awesome is concerned that it may start causing problems. The plan, as of when we left the office, is to go back in 6 weeks for another exam, EKG and echo. In the meantime, Dr. Awesome is going to confer with the other ped. cardiologist and see what they think. If they feel something needs to be done about the aorta, then Will will get scheduled for another cath. That cath would be to get a better look and possibly try to balloon (stretch) the aorta. From what I understand (which still isn't much) that is pretty much the only option as of right now as far as intervention goes. The area that is still narrowed is too close to the blood vessels for his brain and surgery isn't an option.
We are praying that his aorta starts to grow better between now and his next appointment and that he does not need the cath and that his mild stenosis in the aortic and mitral valves stays mild. But we are also celebrating his normal 4 chamber heart! That still amazes me! 4 functioning chambers! We never imagined that would be how things would go when he was first diagnosed. Thank you to everyone praying for him and please keep it up!
*Also, please say a prayer for our heart friend Kolsen, he is still in the hospital.
Just like every echo Will has had, Dr. Awesome came in after the tech was done and did some "looking around" of his own. He said that if he didn't know Will's history of a hypoplastic and mis-shapen left ventricle, he would never know there was a problem. His left ventricle is now normal size and shape and is functioning completely normally. NORMAL! Normal not just in function, but in size and shape! He said that is an amazing thing that he could have never predicted. I'll chalk that one up to prayer! Because his heart is functioning normally now, he was taken off of his captopril, lasix & potassium chloride. This means his only meds now are his digoxin (for heart function), zantac for reflux and his vitamin! This also means I no longer have to wake him in the morning or at 11pm to give him meds! He will only have meds at 8am and 8pm! WOOHOO!!
The down also came during the echo. Since Will's coarctation could not be completely repaired during his surgery, it is one of the main areas of concern for Will. Dr. Awesome was hoping it would grow along with Will and not become a problem, but unfortunately it is getting slightly worse. At his last appointment the highest gradient they measured across the remaining coarc was 55...today it was 78. The things that baffles Dr. Awesome is that the echo and Will's exam are not matching up.
According to the echo, the still narrow part of Will's aorta should be causing a whole host of problems for him. He should be having trouble breathing, the blood flow to the lower half of his body should limited and we should see blue limbs and weak pulses, he should not be gaining weight, he should get tired very easily, and his left ventricle should be working much harder than it is. But he is not having any of those problems. He breathes fine, he is pink all over with strong pulses, he is gaining weight at a good rate and is awake for long stretches during the day, and his left ventricle is not hypertrophied (bigger due to overworking). His little heart and body is compensating for the still narrowed aorta.
Dr. Awesome is concerned that it may start causing problems. The plan, as of when we left the office, is to go back in 6 weeks for another exam, EKG and echo. In the meantime, Dr. Awesome is going to confer with the other ped. cardiologist and see what they think. If they feel something needs to be done about the aorta, then Will will get scheduled for another cath. That cath would be to get a better look and possibly try to balloon (stretch) the aorta. From what I understand (which still isn't much) that is pretty much the only option as of right now as far as intervention goes. The area that is still narrowed is too close to the blood vessels for his brain and surgery isn't an option.
We are praying that his aorta starts to grow better between now and his next appointment and that he does not need the cath and that his mild stenosis in the aortic and mitral valves stays mild. But we are also celebrating his normal 4 chamber heart! That still amazes me! 4 functioning chambers! We never imagined that would be how things would go when he was first diagnosed. Thank you to everyone praying for him and please keep it up!
*Also, please say a prayer for our heart friend Kolsen, he is still in the hospital.
Monday, June 14, 2010
Worries About Will
I've posted before about being a worrier. Having kids made it worse. Having kids with medical issues has made it phenomenally worse. Tomorrow, Will has his second check-up with Dr. Awesome since coming home from the hospital. I am trying to look at it as just a routine check-up, but as I am quickly learning, nothing with a heart baby is routine.
I worry every day if Will is eating enough. If he doesn't eat his whole bottle, was it because he just didn't want it or did he get too tired to finish (a sign his heart is working too hard)? I worry if he sleeps too much. Is he just going through a growth spurt or is his heart working overtime and wearing him out? I worry if he doesn't have a certain number of wet diapers, he should have lots due to his lasix.
And then I have my random every once in awhile worries. Worries about what could happen in the future, about what could happen if Will's heart doesn't continue to function as well as it is. Worries I don't want to have or even think about.
I am worried about Will's check-up tomorrow. Will he have gained enough weight? Will his echo still show his left ventricle is functioning normally? Will his coarc repair have narrowed again (he has a 20% chance of that happening)? Will his valves still be opening enough?
I've already realized my life will constantly be filled with worry now. It's just a matter of learning to control my worries.
I worry every day if Will is eating enough. If he doesn't eat his whole bottle, was it because he just didn't want it or did he get too tired to finish (a sign his heart is working too hard)? I worry if he sleeps too much. Is he just going through a growth spurt or is his heart working overtime and wearing him out? I worry if he doesn't have a certain number of wet diapers, he should have lots due to his lasix.
And then I have my random every once in awhile worries. Worries about what could happen in the future, about what could happen if Will's heart doesn't continue to function as well as it is. Worries I don't want to have or even think about.
I am worried about Will's check-up tomorrow. Will he have gained enough weight? Will his echo still show his left ventricle is functioning normally? Will his coarc repair have narrowed again (he has a 20% chance of that happening)? Will his valves still be opening enough?
I've already realized my life will constantly be filled with worry now. It's just a matter of learning to control my worries.
Sunday, June 13, 2010
Laid Back Sunday Morning
We stayed in PJ's a little longer than usual this morning and just had a laid back Sunday morning.
Friday, June 11, 2010
A Lot Can Change in 4 Years, But the Important Things Don't
Yesterday, Joe and I celebrated our 4th wedding anniversary. How did we celebrate you may ask. Let's see, Joe was working a 24 (actually a 48, still haven't seen him), I was working our garage sale with Erin, and eventually when one of us (darn it, it was Joe) remembered it was our anniversary lovely sentiments were sent via text message...
Joe: Happy Anniversary! I loave you! Are we rich yet? (inquiring about the garage sale).
Me: Happy Anniversary to you too! Not rich yet, but I sold our crappy broken mowers to our neighbor!
Nice, huh?
Lately, we have been thinking a lot about our life together since we were married in 2006. The first year and a half was picture perfect newlywed life. We got married, moved to SC, had a brand new house built and moved in, got a boat, had really fun friends that we loved hanging out with, generally just enjoyed life together, and got pregnant with our first little bundle of joy. Everything was going great! We seriously could not imagine things getting any better (unless we some how became the recipients of copious amount of money to pay off our debt).
The past 2 and a half years have been equally filled with love, but have definitely not been picture perfect. And the last year has been the most stressful of all. A year ago I had my miscarriage, followed by a ridiculously crazy pregnancy, and after Will's birth things did not get any less stressful.
We were looking at pictures on the computer the other night, and noticed a DRASTIC change in the pictures of us before Julianna's birth (we looked young, extremely happy and awesome if I do say so), after Julianna's birth (we looked older and although extremely happy, not quite so awesome) and after Will's birth (we look really stinkin old, still extremely happy, but definitely not awesome...haha!). People joke that their kids aged them, ours REALLY have!!!
Our kids are the best things since sliced bread, but boy oh boy they can cause you to pack on the grey hairs, lose your hair, gain weight, lose weight, quit taking the time to make yourself look awesome on a daily basis (ok, like ever), and generally quit caring about yourself as long as they are happy, healthy (as healthy as can be), and loved.
Although A LOT has changed in the 4 years we have been married, there are 3 important things that have not...I love Joe...he loves me...and we are still extremely happy.
Joe: Happy Anniversary! I loave you! Are we rich yet? (inquiring about the garage sale).
Me: Happy Anniversary to you too! Not rich yet, but I sold our crappy broken mowers to our neighbor!
Nice, huh?
Lately, we have been thinking a lot about our life together since we were married in 2006. The first year and a half was picture perfect newlywed life. We got married, moved to SC, had a brand new house built and moved in, got a boat, had really fun friends that we loved hanging out with, generally just enjoyed life together, and got pregnant with our first little bundle of joy. Everything was going great! We seriously could not imagine things getting any better (unless we some how became the recipients of copious amount of money to pay off our debt).
The past 2 and a half years have been equally filled with love, but have definitely not been picture perfect. And the last year has been the most stressful of all. A year ago I had my miscarriage, followed by a ridiculously crazy pregnancy, and after Will's birth things did not get any less stressful.
We were looking at pictures on the computer the other night, and noticed a DRASTIC change in the pictures of us before Julianna's birth (we looked young, extremely happy and awesome if I do say so), after Julianna's birth (we looked older and although extremely happy, not quite so awesome) and after Will's birth (we look really stinkin old, still extremely happy, but definitely not awesome...haha!). People joke that their kids aged them, ours REALLY have!!!
Our kids are the best things since sliced bread, but boy oh boy they can cause you to pack on the grey hairs, lose your hair, gain weight, lose weight, quit taking the time to make yourself look awesome on a daily basis (ok, like ever), and generally quit caring about yourself as long as they are happy, healthy (as healthy as can be), and loved.
Although A LOT has changed in the 4 years we have been married, there are 3 important things that have not...I love Joe...he loves me...and we are still extremely happy.
Thursday, June 10, 2010
It's PT Time Again
Julianna has had relatively few preemie related issues. We are so thankful for that. She does have some long term issues though since she was born so early. At some point early in her life she had a lack of oxygen (doctors think it was during the c-section when her cord prolapsed before they could deliver her). That lack of oxygen caused some parts of her brain (areas related to motor skills) to die and cysts formed. The presence of these cysts is how she was diagnosed with PVL (periventricular leukomalacia).
Julianna's cysts are mostly on the right side of her brain which affects her motor skills and development on her left side. She sees a neurologist to follow her PVL and that diagnosis is how she got into her early childhood center. Today, she had a physical therapy evaluation. We've always noticed some mild issues with her left side, but lately they have started to affect her development. She is about 6 months behind on her gross motor skill development.
She has some overall weakness in the muscles on her left side, her left ankle rolls inward a little, she has some issues extending her arms upward and balancing. She's going to have PT added to her IFSP, but not until after her speech evaluation in 2 weeks. It's a lot easier to have 1 meeting to change her IFSP rather than 2. We're all hoping that by working to strengthen her muscles on the left side we can get her caught up developmentally. I think she's going to love the fact that they are bringing out a mini trampoline for her to "play" with.
Her teacher also gave me Will's paperwork to get him officially into the center. We're pretty sure he is going to get PT or OT since he's had such limited tummy time and is already behind on some of his developmental milestones. But we'll do whatever our kiddos need!
Julianna's cysts are mostly on the right side of her brain which affects her motor skills and development on her left side. She sees a neurologist to follow her PVL and that diagnosis is how she got into her early childhood center. Today, she had a physical therapy evaluation. We've always noticed some mild issues with her left side, but lately they have started to affect her development. She is about 6 months behind on her gross motor skill development.
She has some overall weakness in the muscles on her left side, her left ankle rolls inward a little, she has some issues extending her arms upward and balancing. She's going to have PT added to her IFSP, but not until after her speech evaluation in 2 weeks. It's a lot easier to have 1 meeting to change her IFSP rather than 2. We're all hoping that by working to strengthen her muscles on the left side we can get her caught up developmentally. I think she's going to love the fact that they are bringing out a mini trampoline for her to "play" with.
Her teacher also gave me Will's paperwork to get him officially into the center. We're pretty sure he is going to get PT or OT since he's had such limited tummy time and is already behind on some of his developmental milestones. But we'll do whatever our kiddos need!
Tuesday, June 8, 2010
Deep Conversations
When we're the only 2 up in the middle of the night, Will and I have deep conversations. We discuss the politics, the oil spill, the weather and lots of other important subjects. Today, Will decided we should have one of those conversations during the day. This time I let him do all the talking.
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