January 26, 2011
Everytime someone from Egleston or Sibley calls me, that is how they greet me. This morning, I was waiting for the call. At our last cardiology check-up, Jack's heart looked great. The pressures were lower, the right ventricle was thinned and pumping better than before, and the shunt was still open and functional. Everything looked so good that the doctor said that she wanted to send the data to the "Cath Conference" so that the doctors could evaluate it and determine whether Jack needed his next surgery in February. But she said that she thought that they would conclude that he didn't need it. I crossed my fingers and prayed, but dared not plan on avoiding another heartbreak.
When the phone rang, I was at City Cafe and Bakery, enjoying the first breakfast with a friend that I had had in I can't remember how long. I recognized the first few digits in the phone number as belonging to Sibley, and I caught my breath for just a moment. When I answered the call, I felt confident that the news would be good, but I had trained myself not to hope to big, and so I braced myself, saying "Hello?"
The nurse who spoke was sweet, and delivered the results like an angel anchoring the evening news in Heaven. "The doctors believe that Jack's heart is operating well at this time, and they see no need to do a cath at this time." Aaaaaahhhh. And then I breathe again. Slowly at first, to calm myself. Then I begin to barrage the poor nurse who drew the short straw and was assigned to call "Jack's Mama," for now the interrogation begins. I was thrilled that Jack wouldn't need a surgery in the near future, but since I had planned on it, I needed to know the reasons, the risks, and what the new plan was.
In short, Jack's heart is recovering from the months of damage it endured while the valve was fused closed. They have no idea why (my words) but it's positive, and the pressures are lower than they were a few months ago. Without the cath, they can't tell for sure how well the valve is opened, but the echo's show that the pressures are low, and so it's open enough to allow sufficient blood flow to support his organs. If they went in anyway, they could damage the heart, or the valve. Types of damage include opening the valve too much, causing leakage back into the right ventricle, (which would necessitate a valve replacement sooner) all the way up to rupture of the arteries or chambers. Plus, in order to even do the cath, Jack would have to be put under and intubated, both of which are dangerous for a baby.
Now, in the meantime, they will "manage his case medically, in the clinic until circumstances warrant further scrutiny at the cath conference." This essentially means that we will continue to visit the cardiologist regularly to have ekg's and echo's done on Jack's heart. Our next appointment is in early March, and at that time we will assess the heart function and determine how frequently Jack will need to be seen. The nurse couldn't tell me how frequently the doctor would want to see us, but I suspect that it may be every other month or so. The changes we will look for are increased pressures in the heart, specifically the "gradient" across the pulmonary valve, which is how fast the blood speeds up going through the bottleneck that the narrowed opening causes. Also, I will monitor his oxygen saturations at home to look for signs that the blood flow is not supporting his growing body, as well as monitoring his appetite, weight, mood and appearance.
The good news is that he doesn't need surgery next month. The bad news is that his heart isn't really "healed" and he will still need surgery at some point. But the longer he can wait, the bigger he will be and the better able his body will be to handle the sedation. They warned me a while ago that the worst part of this defect was the waiting. That the repairs would be slow and deliberate in order to avoid doing damage that would make the life-long management more difficult. So I'm prepared for the waiting.
Really, I am......
But it's still hard. I just keep looking at this sweet, fat little baby with the rosy cheeks and know that everything is alright. He's amazed everyone with how well he's done thus far. If it's okay with everyone else, I'm going to keep hoping to be amazed again, and again. It never gets old, does it?
Love
Maggie and Jack
Wednesday, January 26, 2011
Sunday, January 23, 2011
Hey! I'm here, too, you know....
January 23, 2011
If you'll notice, the title of this blog is "Maggie and Jack." But as you'll also notice, most of the posts are about our dear boy, Jack. He has seemed to monopolize the blog, much as he has my life. And for the past nine months, that was completely as it should have been. I have taken brief respites here and there for a doctors appointment, or a solo visit to the coffee shop, but in great, large swaths, my life has been turned over to Jack and his needs.
All over the world, there are women and mothers who give everything they have to the love and caretaking of those in their lives. And from firsthand experience, I can tell you that there is no greater joy, worthy calling, or exhausting, thankless job. But in the long term, I, and these women begin to lose something of themselves. We become "someone's something." I have become "Jack's Mom." I am no longer Maggie, the MBA in marketing, or the sales rep who grew sales in her territory by X%, or the go-to gal for writing SOP's or job descriptions. I am someone's something.
That is all changing. I know, in my heart, that in order to care for someone with special needs, I have to take care of myself, as well. There's no one here to back me up if I collapse from fatigue, or injure myself. No one to get up in the middle of the night if Jack is crying, or in the morning with him, so that I can sleep late. I haven't slept late in over nine months. So in order to make sure that I don't lose me, I am "Bringing Maggie Back." I will again be known as Maggie, (insert awesome knowledge, skill or ability here). I will always be Jack's Mama, but I also need to be my own person. It'll make me a far better mama. It already has.
Since the beginning of the year, I have been making big changes in my life. I have found a sitter to keep Jack so that I can go to work a few hours a week, alone. I am working in an accounting firm, and have been able to focus on my projects, completing them more rapidly and with better clarity. This feeds my need to be focused and capable. By exercising my mind, outside of reading children's books (which are really boring after the 27th time you read them) I am excited about work, and learning again. I will gradually increase the number of hours we are apart, so that I can work and not have separation anxiety. I know I'm not the only one who can keep Jack safe, but my gut hasn't gotten the message yet.
I have also begun running. This is something I never thought I'd ever do. Who runs for fun?!? You run because a bad guy, or an animal is chasing you, right? But I absolutely love it. I have had a recurring dream for years. In it, I am running. I am running in a city, in the country, all over the world. And I feel free. I never feel tired, or winded, and I'm always enjoying the dream. So I thought I'd give it a try, and aside from the wonky gait and chest searing shortness of breath, I am the beautiful vision in my dream. I even bought cute new shoes (which a running expert fit me for ;-) and a matching headband. I am training for a 5K now, and hope to combine my philanthropic efforts and running in the near future.
Jack has also been "sleep trained." Two weeks ago, Atlanta had an ice storm and we were shut-in for several days. Since I had nowhere to go, I decided that after a lifetime (his-actually, mine-seemingly) in my bed, it was time for him to begin sleeping in his. I braced myself for hours, even days of crying, on both sides of his bedroom door. But this amazing creature took to it like a fish to water. The first night, he took about an hour and a half to finally fall asleep. I'd let him cry for 10 minutes at a time before going in and soothing him. Then he woke up twice during the night. The next night, he took 20 minutes, and the third night, he took 4 minutes. FOUR MINUTES!! Now he is regularly going to bed at 7pm, waking for a bottle sometime before midnight, then sleeping until morning. This has given me back HOURS of my life!
So there you go. It is a start, and I have big plans for the rest of the year, too. You only have to start somewhere in order to make a huge change take place. And me being me, I have a big list of things I want to do, and how I can get them done. I think 2011 is going to be one of Maggie's best years ever.
Love
Maggie
If you'll notice, the title of this blog is "Maggie and Jack." But as you'll also notice, most of the posts are about our dear boy, Jack. He has seemed to monopolize the blog, much as he has my life. And for the past nine months, that was completely as it should have been. I have taken brief respites here and there for a doctors appointment, or a solo visit to the coffee shop, but in great, large swaths, my life has been turned over to Jack and his needs.
All over the world, there are women and mothers who give everything they have to the love and caretaking of those in their lives. And from firsthand experience, I can tell you that there is no greater joy, worthy calling, or exhausting, thankless job. But in the long term, I, and these women begin to lose something of themselves. We become "someone's something." I have become "Jack's Mom." I am no longer Maggie, the MBA in marketing, or the sales rep who grew sales in her territory by X%, or the go-to gal for writing SOP's or job descriptions. I am someone's something.
That is all changing. I know, in my heart, that in order to care for someone with special needs, I have to take care of myself, as well. There's no one here to back me up if I collapse from fatigue, or injure myself. No one to get up in the middle of the night if Jack is crying, or in the morning with him, so that I can sleep late. I haven't slept late in over nine months. So in order to make sure that I don't lose me, I am "Bringing Maggie Back." I will again be known as Maggie, (insert awesome knowledge, skill or ability here). I will always be Jack's Mama, but I also need to be my own person. It'll make me a far better mama. It already has.
Since the beginning of the year, I have been making big changes in my life. I have found a sitter to keep Jack so that I can go to work a few hours a week, alone. I am working in an accounting firm, and have been able to focus on my projects, completing them more rapidly and with better clarity. This feeds my need to be focused and capable. By exercising my mind, outside of reading children's books (which are really boring after the 27th time you read them) I am excited about work, and learning again. I will gradually increase the number of hours we are apart, so that I can work and not have separation anxiety. I know I'm not the only one who can keep Jack safe, but my gut hasn't gotten the message yet.
I have also begun running. This is something I never thought I'd ever do. Who runs for fun?!? You run because a bad guy, or an animal is chasing you, right? But I absolutely love it. I have had a recurring dream for years. In it, I am running. I am running in a city, in the country, all over the world. And I feel free. I never feel tired, or winded, and I'm always enjoying the dream. So I thought I'd give it a try, and aside from the wonky gait and chest searing shortness of breath, I am the beautiful vision in my dream. I even bought cute new shoes (which a running expert fit me for ;-) and a matching headband. I am training for a 5K now, and hope to combine my philanthropic efforts and running in the near future.
Jack has also been "sleep trained." Two weeks ago, Atlanta had an ice storm and we were shut-in for several days. Since I had nowhere to go, I decided that after a lifetime (his-actually, mine-seemingly) in my bed, it was time for him to begin sleeping in his. I braced myself for hours, even days of crying, on both sides of his bedroom door. But this amazing creature took to it like a fish to water. The first night, he took about an hour and a half to finally fall asleep. I'd let him cry for 10 minutes at a time before going in and soothing him. Then he woke up twice during the night. The next night, he took 20 minutes, and the third night, he took 4 minutes. FOUR MINUTES!! Now he is regularly going to bed at 7pm, waking for a bottle sometime before midnight, then sleeping until morning. This has given me back HOURS of my life!
So there you go. It is a start, and I have big plans for the rest of the year, too. You only have to start somewhere in order to make a huge change take place. And me being me, I have a big list of things I want to do, and how I can get them done. I think 2011 is going to be one of Maggie's best years ever.
Love
Maggie
Thursday, January 20, 2011
The Archer
January 20, 2011
I am a Sagittarius, or at least I was before that professor decided that there were thirteen astrological signs, and I became an Ophiucus, whatever that is. I have decided to remain a Sagittarius, in part because I have begun to visualize a particular metaphor regarding Jack. The Sagittarius is also known as "The Archer," possessing the body of a horse, and the torso and head of a man. He is always shown with a bow and arrow, and that is the crux of the metaphor.
I am intimately, inexorably, completely bonded with Jack. It's no wonder. Since the very beginning, it's been us against the world, or at least a very scary heart defect. I stayed in his hospital room with him for weeks, and we're still together nearly 24/7. While most of this is wonderful, I realized that I had convinced myself that by being with him all the time, I could protect him from any pain or ill. I thought that if I stayed home with him I could ensure that no small warning sign would be missed. If I obsessively monitored his oxygen saturations, breath rates and pulse, then no change in his heart function could ever progress to heart failure, or even heart attack. But I was deluding myself. I can no more protect Jack from every risk of hurt and fear than I can protect airplanes I see flying above my house by willing them to just stay up there.
I am but an archer, carrying a bow. And Jack is the arrow in my quiver. I have merely been entrusted with him. By God, by the Universe, by the Fates. He has been put in my care, but I do not own him. I can't protect him from pain, bullies, or even heart failure. All I can do is love him and prepare him as best as possible; drawing back the bow. I can provide him food and shelter, and remind him frequently that he is loved and secure; further back I draw. I can provide access to the best education and exposure to the arts, athletics and travel; aiming towards the Heavens. And then, eventually, I have to release the bow. Sending him out into the world. Alone.
Certainly, I have hopes for the path that the arrow will travel. I have trained and researched the best way to shoot an arrow in the proper direction, and with the speed intended. But here is where the metaphor must end. Jack is not an arrow. He will not always follow the path I have prepared and cleared and made safe for him. Sometimes he will take a wrong turn, or someone or something will enter his path and cause him pain. But all I can do is hope that I prepared the arrow in the best way I know how. That I have made it strong and flexible, and able to fly far and strong. And if not, if instead of soaring to his dreamed destination he falls short and crashes, what can I do?
I will pick him up, dust him off, and remind him that he is the strong, true, capable arrow that I spent a lifetime polishing. But that the strength is inside, and it is intact, and he can fly again, confident that should he fall from the sky again, the Archer will be there to check his path and ready him to fly again.
Love
Maggie
I am a Sagittarius, or at least I was before that professor decided that there were thirteen astrological signs, and I became an Ophiucus, whatever that is. I have decided to remain a Sagittarius, in part because I have begun to visualize a particular metaphor regarding Jack. The Sagittarius is also known as "The Archer," possessing the body of a horse, and the torso and head of a man. He is always shown with a bow and arrow, and that is the crux of the metaphor.
I am intimately, inexorably, completely bonded with Jack. It's no wonder. Since the very beginning, it's been us against the world, or at least a very scary heart defect. I stayed in his hospital room with him for weeks, and we're still together nearly 24/7. While most of this is wonderful, I realized that I had convinced myself that by being with him all the time, I could protect him from any pain or ill. I thought that if I stayed home with him I could ensure that no small warning sign would be missed. If I obsessively monitored his oxygen saturations, breath rates and pulse, then no change in his heart function could ever progress to heart failure, or even heart attack. But I was deluding myself. I can no more protect Jack from every risk of hurt and fear than I can protect airplanes I see flying above my house by willing them to just stay up there.
I am but an archer, carrying a bow. And Jack is the arrow in my quiver. I have merely been entrusted with him. By God, by the Universe, by the Fates. He has been put in my care, but I do not own him. I can't protect him from pain, bullies, or even heart failure. All I can do is love him and prepare him as best as possible; drawing back the bow. I can provide him food and shelter, and remind him frequently that he is loved and secure; further back I draw. I can provide access to the best education and exposure to the arts, athletics and travel; aiming towards the Heavens. And then, eventually, I have to release the bow. Sending him out into the world. Alone.
Certainly, I have hopes for the path that the arrow will travel. I have trained and researched the best way to shoot an arrow in the proper direction, and with the speed intended. But here is where the metaphor must end. Jack is not an arrow. He will not always follow the path I have prepared and cleared and made safe for him. Sometimes he will take a wrong turn, or someone or something will enter his path and cause him pain. But all I can do is hope that I prepared the arrow in the best way I know how. That I have made it strong and flexible, and able to fly far and strong. And if not, if instead of soaring to his dreamed destination he falls short and crashes, what can I do?
I will pick him up, dust him off, and remind him that he is the strong, true, capable arrow that I spent a lifetime polishing. But that the strength is inside, and it is intact, and he can fly again, confident that should he fall from the sky again, the Archer will be there to check his path and ready him to fly again.
Love
Maggie
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