Yeah -- we didn't know what that was either until recently.
We found out though after Zachary's right arm started turning blue. Turns out a bruit is the sound that blood makes when it rushes past an obstruction, like a blood clot. Not sure that's what it is yet, but the pediatrician and cardiologist are sufficiently concerned that they've decided to do an ultrasound to find out.
His arm started turning purplish-blue a couple weeks ago. Sometimes just for a few minutes. Sometimes for half an hour or so. The thought is that maybe some blood on the way back to the heart is being blocked from leaving his arm because of an obstruction somwehere.
He had an U/S a while back because he has some prominent veins in his neck and chest that his cardiologist thinks may be the result of previous clots, which are not uncommon in kiddos who have had risk factors like central lines, of which he had three for many, many months. Too soon to speculate on what the path forward will be if clots are found, though the good news is that it appears not to be cardiac related.
The coming month is going to be important because, in addition to the U/S, he has another sleep study scheduled mid-month. The study will require an overnight in the hospital and help determine whether he still needs to be on he ventilator when sleeping.
If not, we will probably be able to start weaning that in hopes of shedding it for good in the Fall. If he still needs the vent, probably will be vent-dependent at night through year's end, when the sleep study will be repeated.
Keep your fingers crossed!
Thursday, July 26, 2012
Tuesday, July 17, 2012
another one?
Let me start by providing the following disclaimer: Erin authorized and approved this post, so I'm not betraying a marital confidence or anything like that. You paying attention now?
So here it is: I want Zachary to have a brother or sister. There are lots of reasons not to have another baby. I'm too old (and let me be clear on this point: I'm just referring to me, not Erin). Zachary's medical conditions are a LOT of work and will be for some time. And the most important: there's a 25 percent chance that the same problems that led to Zachary's early birth could happen again.
I don't think I could ever put another child through what Zachary had to go through, and what he continues to deal with. He was in so much pain for so long that well-meaning doctors, who had taken an oath to do no harm, raised the subject of taking him off life support because it might be the more humane thing to do, both to stop his suffering and avoid the profound mental and physical disabilities that could accompany a child born so soon who was subjected to such invasive medical interventions.
We would have (and almost did) if we would have thought all hope was lost and he didn't have any fight left in him. But I'll swear to my dying day that he wanted us to keep fighting for him. Maybe that was just wishful thinking to assuage our guilt, but he proved tougher and more resilient than anyone expected. So the idea of a one-in-four chance that something like that might happen again scares the hell out of me and should extinguish any idea about trying to have another one.
But . . .
Zachary has given my life a new meaning and direction that was lacking before his arrival. I feel like I've finally done something with my life that means something to someone. I have a purpose, each and every day, and it's very simple: love my little boy and take care of his needs, whatever they are and however I can.
We missed most of the fun pregnancy stuff, like readying the baby's room, waiting for labor to start, wheeling mom and baby out of the hospital after three days for the big homecoming. I'd like to have those experiences. I don't blame anyone for thinking that sounds selfish. Maybe it is.
We were more than three months from his due date when the doctor told Erin on a Saturday morning "we have to get the baby out, NOW!" Then a half dozen doctors and nurses showed up. We asked them to clear the room for a minute so we could collect our thoughts. They gave us about 15 seconds.
I feel guilty when I feel sorry for myself about what happened, how it happened, and how it has impacted out lives. I know we're lucky he's alive and doing so well. Some parents aren't as fortunate, as we saw firsthand too many times. And don't get me wrong, it's not that I'm not satisfied with having just him. Hard to explain I guess.
Erin is not of the same mind as me on the matter. Not upset at all. Can totally understand her perspective. So unless she wants a sister wife (and why would any guy want more than one wife anyway?) we won't be having another one.
Disappointing.
So here it is: I want Zachary to have a brother or sister. There are lots of reasons not to have another baby. I'm too old (and let me be clear on this point: I'm just referring to me, not Erin). Zachary's medical conditions are a LOT of work and will be for some time. And the most important: there's a 25 percent chance that the same problems that led to Zachary's early birth could happen again.
I don't think I could ever put another child through what Zachary had to go through, and what he continues to deal with. He was in so much pain for so long that well-meaning doctors, who had taken an oath to do no harm, raised the subject of taking him off life support because it might be the more humane thing to do, both to stop his suffering and avoid the profound mental and physical disabilities that could accompany a child born so soon who was subjected to such invasive medical interventions.
We would have (and almost did) if we would have thought all hope was lost and he didn't have any fight left in him. But I'll swear to my dying day that he wanted us to keep fighting for him. Maybe that was just wishful thinking to assuage our guilt, but he proved tougher and more resilient than anyone expected. So the idea of a one-in-four chance that something like that might happen again scares the hell out of me and should extinguish any idea about trying to have another one.
But . . .
Zachary has given my life a new meaning and direction that was lacking before his arrival. I feel like I've finally done something with my life that means something to someone. I have a purpose, each and every day, and it's very simple: love my little boy and take care of his needs, whatever they are and however I can.
We missed most of the fun pregnancy stuff, like readying the baby's room, waiting for labor to start, wheeling mom and baby out of the hospital after three days for the big homecoming. I'd like to have those experiences. I don't blame anyone for thinking that sounds selfish. Maybe it is.
We were more than three months from his due date when the doctor told Erin on a Saturday morning "we have to get the baby out, NOW!" Then a half dozen doctors and nurses showed up. We asked them to clear the room for a minute so we could collect our thoughts. They gave us about 15 seconds.
I feel guilty when I feel sorry for myself about what happened, how it happened, and how it has impacted out lives. I know we're lucky he's alive and doing so well. Some parents aren't as fortunate, as we saw firsthand too many times. And don't get me wrong, it's not that I'm not satisfied with having just him. Hard to explain I guess.
Erin is not of the same mind as me on the matter. Not upset at all. Can totally understand her perspective. So unless she wants a sister wife (and why would any guy want more than one wife anyway?) we won't be having another one.
Disappointing.
Thanks for everything, Miss Cat!
Zachary had his last session today with his favorite therapist who is leaving the area, unfortunately.
We are all sad to see her go. She has played a very instrumental role in helping Zachary overcome his early birth and catch up to where most kids are developmentally at his age. His fantastic progress over the past year is due in large part to her work with him and the guidance she gave us.
She's helped him roll over, sit, stand, climb stairs, and walk, way before we thought he'd reach any of these milestones. She always had a positive attitude, even when Zachary was tired and fussy and uncooperative. We will make sure to tell Zachary when he gets older how lucky he was to have such a talented and dedicated physical therapist.
Everyone at the White House wishes her well and will miss her, especially Zachary, even if he doesn't know it just yet.
We are all sad to see her go. She has played a very instrumental role in helping Zachary overcome his early birth and catch up to where most kids are developmentally at his age. His fantastic progress over the past year is due in large part to her work with him and the guidance she gave us.
She's helped him roll over, sit, stand, climb stairs, and walk, way before we thought he'd reach any of these milestones. She always had a positive attitude, even when Zachary was tired and fussy and uncooperative. We will make sure to tell Zachary when he gets older how lucky he was to have such a talented and dedicated physical therapist.
Everyone at the White House wishes her well and will miss her, especially Zachary, even if he doesn't know it just yet.
Saturday, July 14, 2012
we have an eater . . . and a screamer . . . and happy parents
The tube wean is over.
And the results? He's now an eater, according to his occupational and speech therapists. He's not exactly eating everything or as much as he should be for his age, but he's eating, which he wasn't three weeks ago.
His favorites are vanilla yogurt, mixed with some purees, like pears or prunes (when, you know, he needs a little extra help), and rice cereal. He'll eat a whole bowl full. I'm embarrassed to say it's not too bad, even the prunes. We even mix some mashed avocado in every now and again, just to give him a few extra calories, which he doesn't seem to mind.
The process was full of ups and downs and tears and cheers. And lots of food. On the floor. On the carpet. On the walls. On . . . well, you get the picture. Things weren't looking so good about a week ago. He had made some progress but still wasn't a willing participant. But the last week has seen the little guy go from unhappily tolerating a few bites of purees to putting a death grip on the spoon and shoveling the grub in faster than he can swallow it.
He still has trouble with solids, even meltable ones, and usually gags and sometimes barfs when he gets a crumb or two in his mouth and has to swallow them. But we think all the practice he's getting with the pasty mixture he's now eating will get him used to chewing and swallowing, hopefully soon. And his therapists think that as he develops better oral and motor skills he will be willing to bite and chew some substantial solids since he'll be more in control of what and how much goes in his mouth.
So all-in-all, I'd have to say the wean was reasonably successful. Didn't achieve all the goals we had hoped for, but made some great progress and hopefully established a solid foundation for future gains. And he only lost about 1/2 a pound during the process, or about 2.5 percent his body weight.
We've also learned that, as he has gained more control over his feeding, he has decided to exert this new found independence in other areas, like screaming to make his intentions known. Sometimes he screams when he wants something, like to go outside, and sometimes he screams because he's happy, or tired, or hungry, or who knows why. I thought it was funny at first. Not so much anymore.
We're really happy though that he's getting all his nutrition from real food and not from the sugary synthetic formula he had been drinking. We still give him a couple bottles of whole milk each day to make sure he's getting enough calories, but we haven't had to use his feeding tube for weeks, except to give him medicine and a little extra water when he's been dehydrated.
So we have an eater, and a screamer, and a couple happy parents.
And the results? He's now an eater, according to his occupational and speech therapists. He's not exactly eating everything or as much as he should be for his age, but he's eating, which he wasn't three weeks ago.
His favorites are vanilla yogurt, mixed with some purees, like pears or prunes (when, you know, he needs a little extra help), and rice cereal. He'll eat a whole bowl full. I'm embarrassed to say it's not too bad, even the prunes. We even mix some mashed avocado in every now and again, just to give him a few extra calories, which he doesn't seem to mind.
The process was full of ups and downs and tears and cheers. And lots of food. On the floor. On the carpet. On the walls. On . . . well, you get the picture. Things weren't looking so good about a week ago. He had made some progress but still wasn't a willing participant. But the last week has seen the little guy go from unhappily tolerating a few bites of purees to putting a death grip on the spoon and shoveling the grub in faster than he can swallow it.
He still has trouble with solids, even meltable ones, and usually gags and sometimes barfs when he gets a crumb or two in his mouth and has to swallow them. But we think all the practice he's getting with the pasty mixture he's now eating will get him used to chewing and swallowing, hopefully soon. And his therapists think that as he develops better oral and motor skills he will be willing to bite and chew some substantial solids since he'll be more in control of what and how much goes in his mouth.
So all-in-all, I'd have to say the wean was reasonably successful. Didn't achieve all the goals we had hoped for, but made some great progress and hopefully established a solid foundation for future gains. And he only lost about 1/2 a pound during the process, or about 2.5 percent his body weight.
We've also learned that, as he has gained more control over his feeding, he has decided to exert this new found independence in other areas, like screaming to make his intentions known. Sometimes he screams when he wants something, like to go outside, and sometimes he screams because he's happy, or tired, or hungry, or who knows why. I thought it was funny at first. Not so much anymore.
We're really happy though that he's getting all his nutrition from real food and not from the sugary synthetic formula he had been drinking. We still give him a couple bottles of whole milk each day to make sure he's getting enough calories, but we haven't had to use his feeding tube for weeks, except to give him medicine and a little extra water when he's been dehydrated.
So we have an eater, and a screamer, and a couple happy parents.
Wednesday, July 4, 2012
derecho
Don't know what a derecho is? Neither did I until last Friday when one blew through the DC-area, wreaking havoc, outing the power, and extinguishing the AC during a string of 100-plus degree days.
For the record, a derecho is a wide-spread and long-lived straight-line windstorm. Got that? It plunged Northern Virginia into chaos temporarily, darkening traffic lights, downing trees, and closing gas stations, hotels, and most places to get coffee.
We had about a 1/2 hour warning of its impending arrival and were able to get the emergency batteries ready to be connected when we lost power, which was almost immediately as the storm arrived. But the battery that was supposed to last 9 hours lasted only one. Had another back-up that lasted through the night, until we were able to get to a friend's house (thanks Ally!) who had power.
Fortunately the power came back on after a couple days, though not before all our food spoiled and the cat almost wilted. We were lucky compared to some who five full days after the storm still don't have power. I could live without any additional derecho's for a while. Weather guys say this happens in our area about once every five years, though I don't ever remember experiencing one in my many years in DC.
The disruption really impinged upon the tube weaning. We did our best to keep Zachary focused and moving forward, however. He kept trying (licking) new solids and even accidentally swallowed a tiny bit of wheat bread and pita chip, though he choked and gagged. He even had some really spicy cheese and pepperoni, though he has gotten into the habit of licking something once then tossing it wherever, like on the floor, wall, or couch.
We've started replacing the remaining formula he's getting with whole milk. He hasn't seemed to notice. Probably will cut back further on the formula in a day or two. He's been remarkably well behaved throughout this ordeal (both the storm and starvation) though he has had his inconsolable moments.
So we're making slow progress. Hope he picks up the pace soon.
For the record, a derecho is a wide-spread and long-lived straight-line windstorm. Got that? It plunged Northern Virginia into chaos temporarily, darkening traffic lights, downing trees, and closing gas stations, hotels, and most places to get coffee.
We had about a 1/2 hour warning of its impending arrival and were able to get the emergency batteries ready to be connected when we lost power, which was almost immediately as the storm arrived. But the battery that was supposed to last 9 hours lasted only one. Had another back-up that lasted through the night, until we were able to get to a friend's house (thanks Ally!) who had power.
Fortunately the power came back on after a couple days, though not before all our food spoiled and the cat almost wilted. We were lucky compared to some who five full days after the storm still don't have power. I could live without any additional derecho's for a while. Weather guys say this happens in our area about once every five years, though I don't ever remember experiencing one in my many years in DC.
The disruption really impinged upon the tube weaning. We did our best to keep Zachary focused and moving forward, however. He kept trying (licking) new solids and even accidentally swallowed a tiny bit of wheat bread and pita chip, though he choked and gagged. He even had some really spicy cheese and pepperoni, though he has gotten into the habit of licking something once then tossing it wherever, like on the floor, wall, or couch.
We've started replacing the remaining formula he's getting with whole milk. He hasn't seemed to notice. Probably will cut back further on the formula in a day or two. He's been remarkably well behaved throughout this ordeal (both the storm and starvation) though he has had his inconsolable moments.
So we're making slow progress. Hope he picks up the pace soon.
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