What do they have in common you ask? Nothing. One scares the shit out of me, and the other is my perfect comfort food. I suppose without one, I'd have no excuse for the other. Maybe that's as close as they come to being in common.
I had another echo this afternoon. No change, which I suppose is good. You'd think by now it would have sunk in that he's not going to just get better on his own. Yet I pray every day for just that very thing. The tech asked me if I was grateful for having received his diagnosis ahead of time. I told her it was a mixed blessing. I admitted that I can finally be thankful, knowing that I will deliver in a room full of people who already know what is going on and can step in and help. But on the other hand, this is the last pregnancy for me, and I find myself too worried to just enjoy and appreciate it for what it is. So that's hard.
Dr. Adel came in for a few, answered a couple of questions and then sent us off. We toured "labor and delivery" which consisted of 2 labor and recovery rooms, and 1 operating room. With Mason, I was wheeled in, drugged to the hills, with really no idea of what my surroundings looked like. Today, staring into that cold and sterile operating room, it really hit me. And it hit me hard. Chris toured the Cardiac ICU area and I sat and had a good cry. It's like, one day I am fine. Better than fine. I am hopeful and optimistic and nothing can touch me. And then reality comes and slaps me in the face, like a cold stinky fish tail and all of a sudden my mind is where my mind does not belong. Those are the times I come home and make tapioca pudding. And wish my mother was here.
We met very briefly with Dr. Campbell, one of the surgeons. There had been an emergency transplant case, and all three surgeons were scrubbed in. So our conversation with him was short. I mostly just wanted to see if he agreed with what we are hearing, and also just to meet him. He is also optimistic that we will get the PA Band and not the Norwood surgery, which is wonderful news. I continue to pray.
So that's all for now. I go see the OB on Friday, re-taking my gestational diabetes test then. For now, I will go drown my worries and fear and sorrows in a bowl of tapioca pudding.
Friday, August 24, 2012
Sunday, August 19, 2012
Summer Fun!
Mason loves summer. He loves helping in the yard and riding his bike. Now, if I could just convince him to mow the yard!! That would be great!
Elmo Backpack - thanks Grandma!
I guess Grandma thinks he needs to be ready for school. Mom think he needs to stay home a while longer. I am not ready to think about sending my baby off to school yet.
Friday, August 17, 2012
OB Update
Chris was off work today, so I drug him with me to the OB. We had an ultrasound first, mostly to check growth. Jodi is the tech there, and we have really come to have a friendship over the years, with my pregnancy with Mason, and now with Jackson too. All of the measurements looked good. He's come up to the 56th percent over all. She checked and double checked everything and gave us an A. She put his weight at 3 pounds 14 ounces. She tried to get some fun 3D pics of his face, but much like his brother, he likes to keep his hands in his face. 3 weeks ago he was head down. But today I knew he was breech before she even hooked up the ultra sound. He flipped last weekend. Hurt like hell! He is "butt breech" she called it, with his butt cheeks down. He had both fists and both feet in his face. Silly kid was pretty much curled into a circle. So, no good pics to share. I have another ultra sound in 4 weeks. Maybe then.
Then we wandered down the hall to meet with my OB. I had my gestational diabetes test 2 weeks ago. No one called me, so I assumed "no news is good news". Well, we all know what happens when you assume! My test result was 129. A flunked test is 135. So, yes, I passed, but just barely. And, she said I have a little extra fluid. And the only thing that causes extra fluid is gestational diabetes. So, I left with another "cool aid" and instructions to come back in 2 weeks and be tested again. YUCK! Seriously, can't I catch a break?!?!
My c-section is being scheduled for 10-11-12. No official word yet, but everyone tells me it should be fine. There are only 2 operating rooms at Childrens for adults, so it's just a matter of making sure we schedule one.
Emotionally I am feeling better. I have found a few good "heart momma" chat boards, and some local friends for support. In fact, one friend is at Children's today for her son's 2nd surgery. I have been praying for Liam (and his mom and dad) all day. Chris and I check in with each other on a somewhat frequent basis. He seems to be doing pretty good too. I am not sure if it's total denial, or what, but I feel good about things. Ask me again when I flip the calendar from September to October, and chances are I'll tell you I am loosing my shit. But, today, I am doing alright.
Then we wandered down the hall to meet with my OB. I had my gestational diabetes test 2 weeks ago. No one called me, so I assumed "no news is good news". Well, we all know what happens when you assume! My test result was 129. A flunked test is 135. So, yes, I passed, but just barely. And, she said I have a little extra fluid. And the only thing that causes extra fluid is gestational diabetes. So, I left with another "cool aid" and instructions to come back in 2 weeks and be tested again. YUCK! Seriously, can't I catch a break?!?!
My c-section is being scheduled for 10-11-12. No official word yet, but everyone tells me it should be fine. There are only 2 operating rooms at Childrens for adults, so it's just a matter of making sure we schedule one.
Emotionally I am feeling better. I have found a few good "heart momma" chat boards, and some local friends for support. In fact, one friend is at Children's today for her son's 2nd surgery. I have been praying for Liam (and his mom and dad) all day. Chris and I check in with each other on a somewhat frequent basis. He seems to be doing pretty good too. I am not sure if it's total denial, or what, but I feel good about things. Ask me again when I flip the calendar from September to October, and chances are I'll tell you I am loosing my shit. But, today, I am doing alright.
Friday, July 20, 2012
Finally, a Little Good News
We headed back to Children's today. It's amazing how walking through those front doors can make me want to go back outside and cry. But, I also look around and see so many kids, some with handicaps and issues I can't even grasp and most of them all have smiles. It does make me appreciate what we are facing, and know it could be worse. It's a good reality check, that's for sure.
They took lots of echo pics of Jackson's heart and measured all kinds of things. I think I was in there over an hour. He kicked the tech quite a few times, some hard enough to make her jump a little. He's feisty, no doubt about it.
We met Dr. Adel. He's another one of the cardiologist docs. He reviewed all my pics and even came in and got a few of his own. He was looking to see if things had changed or grown. I was busy studying his face for answers. He felt like starting over was a good idea. Our initial meeting, with the diagnosis, was awful. The doctor was nice enough, very smart, very professional. But she had horrible awful no good delivery. Chris and I sat there, listening, but not hearing, not understanding, not processing. It was awful. There's no other way to say it.
So, we started over. He even took the time to go draw Jackson's heart on the computer so he could print it out. He doesn't have a text book condition, so there aren't many photos to use to help us understand. The good news is that his Double Outlet Right Ventricle has made it so that his aorta is (hopefully) regular size and shape without any flow issues. Knock on wood, best case scenario, we could deliver Jackson and the first surgery (a) could be put off for a few days, or even weeks and (b) would be to simply place a band around his aorta so that they could slow the flow down, otherwise, he'd drown in too much blood to his lungs. Even better, if he's stable enough, there's even a chance we could bring him home for a few days or weeks before he went back for surgery number one. My god, I am almost afraid to hope for something as amazing as that. But even if he had to stay, and get the band done, it would be so freaking amazing to have it be just the band.
He will still get the 2nd and 3rd surgeries. He will still be a single ventricle kid. He will still face all of those issues. But, to avoid the "norwood" surgery, the riskiest of the 3, well, that would simply be a gift from god, and one I would love and appreciate. Very very much.
We go back in a month, for another echo, and to meet one of the surgeons. There are 3 on staff, and I'd like to meet at least 2 of them.
And, for sure, I think we've settled on Dr. Adel as our cardiologist.
He did a great job of again reassuring us that this wasn't something we did. Or didn't do. It just happened. There is no rhyme or reason to why congenital heart defects happen. They are just a crappy luck of the draw. Some kids get em. Some don't. But I tell you, mom guilt is some nasty shit. They can tell me 100 times that this isn't my fault, and there will still be a part of me that is sure it is. I am trying to wrestle through those feelings and emotions.
For now, tonight, I think I'll put my feet up and relax. Maybe even get a good nights sleep. This appointment found me full of hope and promise, both of which have been seriously lacking in my life.
They took lots of echo pics of Jackson's heart and measured all kinds of things. I think I was in there over an hour. He kicked the tech quite a few times, some hard enough to make her jump a little. He's feisty, no doubt about it.
We met Dr. Adel. He's another one of the cardiologist docs. He reviewed all my pics and even came in and got a few of his own. He was looking to see if things had changed or grown. I was busy studying his face for answers. He felt like starting over was a good idea. Our initial meeting, with the diagnosis, was awful. The doctor was nice enough, very smart, very professional. But she had horrible awful no good delivery. Chris and I sat there, listening, but not hearing, not understanding, not processing. It was awful. There's no other way to say it.
So, we started over. He even took the time to go draw Jackson's heart on the computer so he could print it out. He doesn't have a text book condition, so there aren't many photos to use to help us understand. The good news is that his Double Outlet Right Ventricle has made it so that his aorta is (hopefully) regular size and shape without any flow issues. Knock on wood, best case scenario, we could deliver Jackson and the first surgery (a) could be put off for a few days, or even weeks and (b) would be to simply place a band around his aorta so that they could slow the flow down, otherwise, he'd drown in too much blood to his lungs. Even better, if he's stable enough, there's even a chance we could bring him home for a few days or weeks before he went back for surgery number one. My god, I am almost afraid to hope for something as amazing as that. But even if he had to stay, and get the band done, it would be so freaking amazing to have it be just the band.
He will still get the 2nd and 3rd surgeries. He will still be a single ventricle kid. He will still face all of those issues. But, to avoid the "norwood" surgery, the riskiest of the 3, well, that would simply be a gift from god, and one I would love and appreciate. Very very much.
We go back in a month, for another echo, and to meet one of the surgeons. There are 3 on staff, and I'd like to meet at least 2 of them.
And, for sure, I think we've settled on Dr. Adel as our cardiologist.
He did a great job of again reassuring us that this wasn't something we did. Or didn't do. It just happened. There is no rhyme or reason to why congenital heart defects happen. They are just a crappy luck of the draw. Some kids get em. Some don't. But I tell you, mom guilt is some nasty shit. They can tell me 100 times that this isn't my fault, and there will still be a part of me that is sure it is. I am trying to wrestle through those feelings and emotions.
For now, tonight, I think I'll put my feet up and relax. Maybe even get a good nights sleep. This appointment found me full of hope and promise, both of which have been seriously lacking in my life.
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