There is something about October that makes me keenly aware of life's brevity and tenuousness. Maybe it is the shifting season here as the leaves fall and the snow comes. Maybe it is that my children are settled back at school and I start to miss them through the day. Maybe it is that I lost both of my beloved Grandmas in Octobers past. Maybe it is that October was the month of all the tests and meetings where the doctors all told us to expect our Samuel to die.
Regardless, it seemed that what is in my heart these days had already written itself. So here is a repost from October 24, 2011.
I caught myself doing it again - trying to memorize my children. I notice myself studying them, trying to imprint the feel and smell and sound of them into my own cells. With Daniel, it is the long, thin line of his back and the shape of his lips that is just like his daddy's. With Zachary, it is his hands, the out and in and then out again line of his beautiful fingers, and the way he rolls his eyes just like me. With Jacob, it is the way his eyes sit wide of his little freckled nose and the feel of his feet pushed into my back when he crawls into our bed at night. And with Sam, it is still all kinds of new baby things, but especially the squishy soft feel of his newly fattened thighs.
I know that some part of this memorization urge is based on a fear that they will disappear. And in some ways, they will, of course. They will grow up and be big, handsome, hairy men and that will be awesome. But they will not be children anymore and I want to still know this place where they are all soft and sweet and where they still let me cuddle up to their warm loveliness.
I dreamt of this on Friday night after bringing Samuel home from his week in the hospital. In the dream, I was tracing my fingers along Samuel's neck, sniffing that place behind his ears where bigger babies hide their newborn scent for a while longer. I remember doing this type of thing a lot in those first scary weeks where we still thought he might die, especially the day of his first surgery when I feared he wouldn't come back. I could have inhaled him that day, tucked him back inside me where he was safe, where it didn't matter that his lungs didn't work, where I could protect him.
We don't get to do that with our babies, keep them that safe. I knew that before Sam but standing by him while he went through so so so much made me know it more. And I knew before Sam that we couldn't keep them pressed to us, but living with the acute and real fear that he could vanish at any moment made me want to try.
Every so often that vulnerability surges again and I want to hold on extra tight. I take extra pictures and work extra hard to store their words and antics into my memory. But the sound and smell and feel of them isn't something I can keep to take out again another day; that sensory, bodily, momentary experience isn't like the accordion file full of school art projects and successful math tests. Trying to write those things into my neural pathways is just a silly mommy thing I do, and I do it a little more when we've had a scare of our own or when one of the other babies in our CDH community earns wings.
It made me think of the pencil rubbings that my boys did a couple of weeks ago. They collected fallen leaves from our backyard, tucked them under paper and rubbed their pencil crayons over top to get an imprint of the leaf. They learned that you can't press too hard or you get only the colour of the pencil crayon and miss the veins and shapes and details of the leaf. Outside, the trees are getting bare and the air is getting cold and, soon, these pencil rubbings will be all we will have of leaves for a while. That's just how it is. I am reminded to drink in this fleeting moment with appreciation - not desperation. Pressing too hard doesn't make the leaf stay, it just means that the pencil rubbing I am left with will be missing the nuances.
Wednesday, October 24, 2012
Wednesday, October 17, 2012
Hooray for poop!
It's taken me a little while to update on how the latest ride on the worry train turned out. A few days after our ER visit, things were still the same. Sam would spend an hour and a half crying inconsolably and then would be fine and then would spike a low-grade fever and retch and then would be fine. On and on. It just wasn't ringing like a GI virus to me.
When Sam's diaphragm reherniated in the past, he had similar GI symptoms and no respiratory symptoms. I didn't think he'd reherniated this time; that would just be super hard for him to do now that he has a lattisimus dorsi flap repair. But I wondered about other ways he could get a blocked or kinked bowel, possibly a malrotation or adhesion arising from his wonky anatomy and three abdominal surgeries.
I called our people at the CDH clinic and, after much talking and assessing and pondering, Sam went for a chest and abdominal xray. The xray showed that his lungs are awesome. Just awesome. It also showed that Sam had impacted stool in various parts of his colon, including pressing up against his diaphragm. Mystery solved.
My first response was to feel really upset that I had let Sam's chronic, low-level constipation reach a point where he was in distress. My 'Failure-Mommy' monologue is always at the ready. I started reminding myself that we caught it early and it was fixable without surgery or invasive measures. This was what we were meant to attend to and it wasn't so bad.
My momentary relief was interrupted by this giddy, adolescent self who started whispering jokes about how Sam was just "full of crap." This was entirely inappropriate, I know. I was listening and nodding while the lovely CDH doctors were talking about the treatment plan. Meanwhile, this immature self was imagining the doctors taking a family history where I had to list family members who were also full of crap and where I gave examples of their full of crapness.
At one point, I buried my face in Sam's neck to smooch him but I was really trying to smother an inappropriate giggle. Wow, will the bizarre coping strategies never end?! I am not sure that I have fallen into uncontrollable crap-related humour before. Oh wait. Yea, I probably have.
So we are on a new plan and most days it is working and he poops and then eats like a lion. Other days are still rough but but my mama's intuition has settled right down, satisfied that this is what we were meant to attend to.
This has all made me consider how valuable it is to have doctors who really get CDH. Sam has no oxygen and no g-tube so he looks like he's doing just fine and his long-standing impact from CDH is more digestive than respiratory. I think it is easy for non-CDH folks to see a pretty normal kid and miss the big picture. I am truly grateful for our hospital having a special CDH clinic of people who understand Sam - and who are willing to listen to his mama when she says something is not quite right.
When Sam's diaphragm reherniated in the past, he had similar GI symptoms and no respiratory symptoms. I didn't think he'd reherniated this time; that would just be super hard for him to do now that he has a lattisimus dorsi flap repair. But I wondered about other ways he could get a blocked or kinked bowel, possibly a malrotation or adhesion arising from his wonky anatomy and three abdominal surgeries.
I called our people at the CDH clinic and, after much talking and assessing and pondering, Sam went for a chest and abdominal xray. The xray showed that his lungs are awesome. Just awesome. It also showed that Sam had impacted stool in various parts of his colon, including pressing up against his diaphragm. Mystery solved.
My first response was to feel really upset that I had let Sam's chronic, low-level constipation reach a point where he was in distress. My 'Failure-Mommy' monologue is always at the ready. I started reminding myself that we caught it early and it was fixable without surgery or invasive measures. This was what we were meant to attend to and it wasn't so bad.
My momentary relief was interrupted by this giddy, adolescent self who started whispering jokes about how Sam was just "full of crap." This was entirely inappropriate, I know. I was listening and nodding while the lovely CDH doctors were talking about the treatment plan. Meanwhile, this immature self was imagining the doctors taking a family history where I had to list family members who were also full of crap and where I gave examples of their full of crapness.
At one point, I buried my face in Sam's neck to smooch him but I was really trying to smother an inappropriate giggle. Wow, will the bizarre coping strategies never end?! I am not sure that I have fallen into uncontrollable crap-related humour before. Oh wait. Yea, I probably have.
So we are on a new plan and most days it is working and he poops and then eats like a lion. Other days are still rough but but my mama's intuition has settled right down, satisfied that this is what we were meant to attend to.
This has all made me consider how valuable it is to have doctors who really get CDH. Sam has no oxygen and no g-tube so he looks like he's doing just fine and his long-standing impact from CDH is more digestive than respiratory. I think it is easy for non-CDH folks to see a pretty normal kid and miss the big picture. I am truly grateful for our hospital having a special CDH clinic of people who understand Sam - and who are willing to listen to his mama when she says something is not quite right.
Sunday, September 30, 2012
The worry train
The one thing that doesn't seem to change about this CDH business is my occasional need to ride the worry train. The rides are slower, less intense, and I disembark more frequently. But that constant question - "am I doing the right things for my kids?" - has a bit of a different flavour when it comes to Sam. I have started leaving him a few hours a week with a very capable caregiver and, in addition to the regular missing him stuff, I worry if he's being exposed to extra germs, if he's missing the time I would spend integrating physio and speech stuff. When he is well, I think about what else I could be doing to help along his development and put some meat on his bones. When he is sick, I wonder if it's a normal kid thing or a sign of something uniquely "Sam" that I need to attend to.
Samuel has been "off" for more than a week now. He had a few low grade fevers in the night that were resolved by morning. He had a slightly crusty nose and was slightly clingy and his appetite was slightly erratic. And he suddenly started pooping like a normal baby which initially made me go WOOT! and then made me go Hmmm. After fighting with constipation his entire pooping life, sudden normal baby poop is just curious.
For the whole week he's been not quite sick and not quite well. I watched, googled "intermittent fevers" and was glad when the pediatrician at our regular appointment this week checked his ears and listened to his lungs. On Friday morning he took a downturn, intensifying all of the above and then tossing in a faster respiration rate. That breathing thing is the red flag. One of my other children breathes hard with a bit of a fever too. Is Samuel just like his brother or is there some kind of respiratory distress because his lungs are underdeveloped?
The first ER doctor we saw seemed to think that this was just a virus and we should go home. Maybe so but it made me want to emphasize that I am not a histrionic mum who brings her baby to the ER for a virus. In fact, the only times we've taken Sam to ER besides today was when he'd only been home two weeks and everything was terrifying and when he reherniated his diaphragm the first time.
So I told the nurse that I know the difference between my anxiety and my intuition. Isn't that a good line? It's true, but not because I am soooo evolved and insightful. It's because my anxiety manifests as a crazy person who thinks that Samuel's intermittent fevers are because he has leukemia. Usually, I manage to be quiet about this anxious person and her ideas. But today while packing for the hospital I did call Heart-Sister and there might have been some flapping of hands and shrieking OH MY GOOOOOSH! WHAT IF HE HAS LEUKEEEEEEMIA?! She probably rolled her eyes at this. Really, who could blame her. But she responded kindly and with her special brand of bossiness.
So everything this side of hand flapping and extended vowel sounds is potentially intuition. Sometimes it is incredibly clear, as when I knew that something was wrong as soon as I learned I was pregnant, when I knew that Samuel didn't need a tracheostomy, and when I knew that Samuel had reherniated the first time. Other times it is more amorphous but still feels like "somthing." This is hard to explain to some medical folks and others seem to really get it.
So they checked his oxygen sats and listened to his lungs; always good to rule out respiratory distress and pneumonia first. They asked me lots of questions. I did note that his brother had evidence of a recently resolved ear infection. And I told them that Samuel had abdominal malrotations, that his organs are in unique positions and we are not really sure where his appendix is. They looked at his recent blood work and checked his ears again and again and tried to get a urine sample using a catheter.
Um, that last part was pretty awful. I have seen some invasive things done to our Sam but he's well enough now to be really mad about it. He was so mad about being restrained and poked in his penis that he actually used clear and appropriately placed words. I stroked his little head while he screamed hard enough to turn his face purple and he repeated NO NO NO NO NO NO! (gasp for air) NO NO NO NO NO NO! It was one of the least awesome moments of my whole life. AND they couldn't get any pee out of the deal. Cue dehydration worries.
Shortly after that, while Sam's post-sob hiccups were winding down, he projectile vomited all. over. the. place. There were actually several good things about this. First, we were in the hospital where nurses come to help your vomit-covered self and they call "wet clean up in room 17" and this blessed person shows up with a mop. That does not happen when my kids barf at home.
Second, I got a pair of comfy blue hospital scrub pants out of the deal. I can't believe we have spent six months living in that hospital and these are my first scrubs! I am going to get "hospital mum" printed down one leg of my new leisure wear and have little baby hand prints put on each bum cheek. Take that, teenaged girlies in your faux-jock sweatpants.
Finally, and most importantly, Samuel started to get better. A half hour later, he agreed to eat something. He had a sip of his bottle and half a pretzel. He drank half a little hospital cup of apple juice. Since he's never tasted juice before, this was quite an animated experience. Another hour after that, he popped up from his cuddle position on my shoulder and said, "Uhn-GO!" Okay, let's go.
We are still not sure what all the drama was about and we are on a short leash in case we need to go back. Sometimes, he seems fine and he eats and plays giggly games. Other times, he seems unwell, spikes a little fever and breathes a little harder and throws up. He sleeps a lot and is fitful at night. But there is nothing specific to pin our hats on so I'm on a long, slow ride on the worry train, watching my baby and waiting for that intuition, that solid feeling in my belly, to tell me what's what.
Samuel has been "off" for more than a week now. He had a few low grade fevers in the night that were resolved by morning. He had a slightly crusty nose and was slightly clingy and his appetite was slightly erratic. And he suddenly started pooping like a normal baby which initially made me go WOOT! and then made me go Hmmm. After fighting with constipation his entire pooping life, sudden normal baby poop is just curious.
For the whole week he's been not quite sick and not quite well. I watched, googled "intermittent fevers" and was glad when the pediatrician at our regular appointment this week checked his ears and listened to his lungs. On Friday morning he took a downturn, intensifying all of the above and then tossing in a faster respiration rate. That breathing thing is the red flag. One of my other children breathes hard with a bit of a fever too. Is Samuel just like his brother or is there some kind of respiratory distress because his lungs are underdeveloped?
The first ER doctor we saw seemed to think that this was just a virus and we should go home. Maybe so but it made me want to emphasize that I am not a histrionic mum who brings her baby to the ER for a virus. In fact, the only times we've taken Sam to ER besides today was when he'd only been home two weeks and everything was terrifying and when he reherniated his diaphragm the first time.
So I told the nurse that I know the difference between my anxiety and my intuition. Isn't that a good line? It's true, but not because I am soooo evolved and insightful. It's because my anxiety manifests as a crazy person who thinks that Samuel's intermittent fevers are because he has leukemia. Usually, I manage to be quiet about this anxious person and her ideas. But today while packing for the hospital I did call Heart-Sister and there might have been some flapping of hands and shrieking OH MY GOOOOOSH! WHAT IF HE HAS LEUKEEEEEEMIA?! She probably rolled her eyes at this. Really, who could blame her. But she responded kindly and with her special brand of bossiness.
So everything this side of hand flapping and extended vowel sounds is potentially intuition. Sometimes it is incredibly clear, as when I knew that something was wrong as soon as I learned I was pregnant, when I knew that Samuel didn't need a tracheostomy, and when I knew that Samuel had reherniated the first time. Other times it is more amorphous but still feels like "somthing." This is hard to explain to some medical folks and others seem to really get it.
So they checked his oxygen sats and listened to his lungs; always good to rule out respiratory distress and pneumonia first. They asked me lots of questions. I did note that his brother had evidence of a recently resolved ear infection. And I told them that Samuel had abdominal malrotations, that his organs are in unique positions and we are not really sure where his appendix is. They looked at his recent blood work and checked his ears again and again and tried to get a urine sample using a catheter.
Um, that last part was pretty awful. I have seen some invasive things done to our Sam but he's well enough now to be really mad about it. He was so mad about being restrained and poked in his penis that he actually used clear and appropriately placed words. I stroked his little head while he screamed hard enough to turn his face purple and he repeated NO NO NO NO NO NO! (gasp for air) NO NO NO NO NO NO! It was one of the least awesome moments of my whole life. AND they couldn't get any pee out of the deal. Cue dehydration worries.
Shortly after that, while Sam's post-sob hiccups were winding down, he projectile vomited all. over. the. place. There were actually several good things about this. First, we were in the hospital where nurses come to help your vomit-covered self and they call "wet clean up in room 17" and this blessed person shows up with a mop. That does not happen when my kids barf at home.
Second, I got a pair of comfy blue hospital scrub pants out of the deal. I can't believe we have spent six months living in that hospital and these are my first scrubs! I am going to get "hospital mum" printed down one leg of my new leisure wear and have little baby hand prints put on each bum cheek. Take that, teenaged girlies in your faux-jock sweatpants.
Finally, and most importantly, Samuel started to get better. A half hour later, he agreed to eat something. He had a sip of his bottle and half a pretzel. He drank half a little hospital cup of apple juice. Since he's never tasted juice before, this was quite an animated experience. Another hour after that, he popped up from his cuddle position on my shoulder and said, "Uhn-GO!" Okay, let's go.
We are still not sure what all the drama was about and we are on a short leash in case we need to go back. Sometimes, he seems fine and he eats and plays giggly games. Other times, he seems unwell, spikes a little fever and breathes a little harder and throws up. He sleeps a lot and is fitful at night. But there is nothing specific to pin our hats on so I'm on a long, slow ride on the worry train, watching my baby and waiting for that intuition, that solid feeling in my belly, to tell me what's what.
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