The House of Horrors...that name came to me the other day as I stood next to my daughter, Eva, who was in the NICU and surrounded by loads of equipment. She is in an incubator, which they call an Isolette, but that is really just a product name. Call it an incubator or just a big plastic box for all I care. It is like an acrylic, or more likely Lexan, prison for infants. Or, maybe a toaster oven on very low heat. It is a big box on wheels that has an air warmer built in and a bunch of holes of various sizes in it so that wires, tubes, and hands can get to the baby. The kid just hangs out inside, sleeping mostly, while the outside world periodically interrupts to mess with her. People stick needles in her, change her diaper, flip her over, wipe her mouth, but none of these automatons in hospital scrubs ever show her the kind of TLC that she really needs.
As a parent, you are stuck with the choice of either hanging out in an amazingly depressing place so that you can look at and periodically touch your kid or of staying home and calling nurses to get updates on her health. It wears on you...the visits to the NICU. You have to wear an ID band for security. I guess people might try to steal a sick baby or that a parent who can't afford the care might attempt some weird healthcare version of a "Dine & Ditch". The band gets you access, but only after you stand at a door and have someone call the NICU to check if it is okay for you to come in and visit. If they are doing something serious to your child, like shoving another IV in her arm, they don't want you around. And, since you never know when they might be doing something like that, you always have to call ahead. They also don't want any parents in the room when they are admitting a new baby. But, oddly enough, they don't have a problem with parents being in the room while they do what seem like basic operations on other people's children. It is rather disconcerting to be with your kid while doctors seem to be working on another person's child.
The worst part is the look on other parents' faces. The red swollen eyes of a mother who has been crying all night as her son tries to fight off some infection. The look of passive resignation as someone else's child struggles for each breath or heartbeat. The line between hopeful future and lost cause is so thin you can't even see it.
Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts
Monday, March 19, 2007
Regaining a Voice
I did lose my voice at one point in the past few months, but this really more about the fact that I haven't posted since early December. Things have been rather hectic and while I've had a lot going on in my life and a lot to think about, there hasn't really been an easy way to put it down in words. As my family and I seem to be coming to the end of the road (even if this is more like a long on-ramp to a major highway), I think I actually have cogent and interesting things to say about this experience.
So, I think I'll start blogging again. I should start with a bit of a recap and an update as to where we are at this juncture. For the few readers that I do have, some of this may be old news. Just over four months ago, my wife and I were living our life and happily waiting for the arrival of our second child. But, not long after Thanksgiving, we found out a number of things that changed our expectations and plans dramatically. First, we found out we were having twins, something I like to refer to as the "buy one, get one free" sales event. Second, we found out they were monoamniotic, meaning that it was a hig-risk pregnancy and that the suggested course of action was for Audrey to be admitted to the hospital at 24 weeks. And, third, we found out that one of the twins had a congenital heart defect known as Hypoplastic Left Heart Syndrome.
At 24 weeks, Audrey entered the hospital and I took over manning the fort, so to speak. It was like being a single dad except that I went to the hospital almost every day to visit my wife. There were a lot of ups and downs - regarding the surgery for one of the twins, our son's behavior through all of this, handling my workload - but we made it to 35 weeks and our babies were delivered by c-section.
So, we welcomed Naomi and Eva into the world by having them admitted to the NICU. While premature, they were both of decent size. And, Naomi has already come home (more on her and getting her home in an upcoming post). Eva is still in the NICU awaiting surgery for her heart condition. That should be happening this week and we hope that she will be coming home in a few weeks.
So, that is the short version of where we are at. Long version and lots more to come.
So, I think I'll start blogging again. I should start with a bit of a recap and an update as to where we are at this juncture. For the few readers that I do have, some of this may be old news. Just over four months ago, my wife and I were living our life and happily waiting for the arrival of our second child. But, not long after Thanksgiving, we found out a number of things that changed our expectations and plans dramatically. First, we found out we were having twins, something I like to refer to as the "buy one, get one free" sales event. Second, we found out they were monoamniotic, meaning that it was a hig-risk pregnancy and that the suggested course of action was for Audrey to be admitted to the hospital at 24 weeks. And, third, we found out that one of the twins had a congenital heart defect known as Hypoplastic Left Heart Syndrome.
At 24 weeks, Audrey entered the hospital and I took over manning the fort, so to speak. It was like being a single dad except that I went to the hospital almost every day to visit my wife. There were a lot of ups and downs - regarding the surgery for one of the twins, our son's behavior through all of this, handling my workload - but we made it to 35 weeks and our babies were delivered by c-section.
So, we welcomed Naomi and Eva into the world by having them admitted to the NICU. While premature, they were both of decent size. And, Naomi has already come home (more on her and getting her home in an upcoming post). Eva is still in the NICU awaiting surgery for her heart condition. That should be happening this week and we hope that she will be coming home in a few weeks.
So, that is the short version of where we are at. Long version and lots more to come.
Tuesday, November 21, 2006
Surprise, Surprise
Alright, so we are having a baby. A few weeks ago, Audrey goes in for the AFP triple screen test. It is a normal thing to do and is intended to help determine whether the baby might have Down's Syndrome, spina bifida, and things of that nature. We had the test done when Audrey was pregnant with Noah and didn't see any reason not to do it again. I believe it is voluntary, but why not know this kind of thing in advance if you can, right?
So, the results come back and one of the indicators is a bit high. Not far out of whack and not something that couldn't be caused a number of normal conditions. For example, if you get the test done outside of a particular window, the results will have a high potential for false positives. Of course, the test already has a decent potential for false positives, so the timing is everything. Since we already had some concern regarding the inaccuracy of the due date, we figured it was likely that the test results were due to being outside the normal window in which the test should be administered. Armed with a good explanation, we still worried like crazy through the weekend. We were able to get an appointment with a perinatologist early the following week and just tried to keep our emotions in check until then.
So, we go see the perinatologist for a Level 2 sonogram. I can't really tell what the difference is, but it seemed like a stronger machine that produced a much more detailed picture of Audrey's insides and all. Again, the point was to look for signs of something being wrong that would explain that would explain the test result. Well, it was instantly apparent what the cause was. In addition to a mistaken due date and actual birth defects, one of the reasons that test can produce non-normal results is if there is more baby in the womb than you were expecting when you took the test. That's right...the test was done with one baby in mind, but the sonogram clearly showed two! We were totally floored. Suddenly, at 18 weeks pregnant, we found out we were having identical twins. I think my jaw hit the floor. Audrey and I just kept looking at each other in disbelief. Never in our wildest dreams did we even consider this as a possibility. Before you ask, no it doesn't run in our families. Besides, there is no genetic predisposition for identical twins. Identicals are just a random fluke of nature - the cells split at just the right time and you get two matching sets of cells, each with the exact same DNA and each set independently growing into a human being.
We giggled and held hands and just tried to integrate what this all would mean for us. Twin infants means big, big change is coming and we hadn't planned for that degree of change, of course. Is the house big enough? Where do they sleep? Can we fit all the kids in the car? How will we get through the first few months? All sorts of questions popped up. But, the story isn't over yet.
So, after identifying that we are having twins, the sonographer starts looking for the membrane between them. I'm no expert, but there are a number of different configurations for twins. There are fraternal twins, which are two eggs and two sperm and nothing shared between them, including different placentas and all that. Then there are identical twins which can have varying degrees of shared stuff. In our case, the twins are sharing just about everything. They share both the outer and inner sac, otherwise known as monoamniotic twins. This means that there is nothing keeping them from touching each other or from swimming around each other, tangling up the umbilical cords and cutting off their own blood supply. And that is where the issue lies. There is some risk of the babies doing exactly that or of tangling the cords and compressing them at some point in their growth. And, cord entanglement could result in the babies not making it.
What does this all mean? We are having twins, but this is a high risk pregnancy. Up until 24 weeks, babies just aren't viable outside of the womb. So, until we hit that point, there is nothing we can do other than tell these two kids to play nice in there. At 24 weeks, Audrey will likely be admitted to the hospital and basically put on bedrest for the remainder of the pregnancy. The reason for this is that she can be monitored regularly in the hospital, or rather the babies can be monitored, and the doctors can do a c-section in the case that there are signs that something is wrong. The babies would then be kept in the NICU until they were healthy enough to come home. If all goes well, they don't come out until 34 weeks or more and won't be that premature. Then, they will probably only need a few days in the hospital. Earlier than that and they'll need some degree of care and monitoring.
No matter what happens, this is clearly going to have a big impact on our family. Hospital stay, twins, potential risks and complications...it has been a lot for us to digest and deal with. But we are in good spirits and holding up well so far. Whatever happens, happens, but we are very hopeful that everyone involved comes out fine at the end. And, we know right now that we have two healthy babies, so we are planning for their impending arrival.
We will soon be a family of five. Wow.
So, the results come back and one of the indicators is a bit high. Not far out of whack and not something that couldn't be caused a number of normal conditions. For example, if you get the test done outside of a particular window, the results will have a high potential for false positives. Of course, the test already has a decent potential for false positives, so the timing is everything. Since we already had some concern regarding the inaccuracy of the due date, we figured it was likely that the test results were due to being outside the normal window in which the test should be administered. Armed with a good explanation, we still worried like crazy through the weekend. We were able to get an appointment with a perinatologist early the following week and just tried to keep our emotions in check until then.
So, we go see the perinatologist for a Level 2 sonogram. I can't really tell what the difference is, but it seemed like a stronger machine that produced a much more detailed picture of Audrey's insides and all. Again, the point was to look for signs of something being wrong that would explain that would explain the test result. Well, it was instantly apparent what the cause was. In addition to a mistaken due date and actual birth defects, one of the reasons that test can produce non-normal results is if there is more baby in the womb than you were expecting when you took the test. That's right...the test was done with one baby in mind, but the sonogram clearly showed two! We were totally floored. Suddenly, at 18 weeks pregnant, we found out we were having identical twins. I think my jaw hit the floor. Audrey and I just kept looking at each other in disbelief. Never in our wildest dreams did we even consider this as a possibility. Before you ask, no it doesn't run in our families. Besides, there is no genetic predisposition for identical twins. Identicals are just a random fluke of nature - the cells split at just the right time and you get two matching sets of cells, each with the exact same DNA and each set independently growing into a human being.
We giggled and held hands and just tried to integrate what this all would mean for us. Twin infants means big, big change is coming and we hadn't planned for that degree of change, of course. Is the house big enough? Where do they sleep? Can we fit all the kids in the car? How will we get through the first few months? All sorts of questions popped up. But, the story isn't over yet.
So, after identifying that we are having twins, the sonographer starts looking for the membrane between them. I'm no expert, but there are a number of different configurations for twins. There are fraternal twins, which are two eggs and two sperm and nothing shared between them, including different placentas and all that. Then there are identical twins which can have varying degrees of shared stuff. In our case, the twins are sharing just about everything. They share both the outer and inner sac, otherwise known as monoamniotic twins. This means that there is nothing keeping them from touching each other or from swimming around each other, tangling up the umbilical cords and cutting off their own blood supply. And that is where the issue lies. There is some risk of the babies doing exactly that or of tangling the cords and compressing them at some point in their growth. And, cord entanglement could result in the babies not making it.
What does this all mean? We are having twins, but this is a high risk pregnancy. Up until 24 weeks, babies just aren't viable outside of the womb. So, until we hit that point, there is nothing we can do other than tell these two kids to play nice in there. At 24 weeks, Audrey will likely be admitted to the hospital and basically put on bedrest for the remainder of the pregnancy. The reason for this is that she can be monitored regularly in the hospital, or rather the babies can be monitored, and the doctors can do a c-section in the case that there are signs that something is wrong. The babies would then be kept in the NICU until they were healthy enough to come home. If all goes well, they don't come out until 34 weeks or more and won't be that premature. Then, they will probably only need a few days in the hospital. Earlier than that and they'll need some degree of care and monitoring.
No matter what happens, this is clearly going to have a big impact on our family. Hospital stay, twins, potential risks and complications...it has been a lot for us to digest and deal with. But we are in good spirits and holding up well so far. Whatever happens, happens, but we are very hopeful that everyone involved comes out fine at the end. And, we know right now that we have two healthy babies, so we are planning for their impending arrival.
We will soon be a family of five. Wow.
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