As I was pulling on my "Mom uniform" this morning (yoga pants, random oil stained T-Shirt, slightly too-tight hoodie, raggedy pony tail), two things occurred to me. The first thought involved cursing with the realization that I was going to need socks (AKA Satan's footwear) for my eventual run to Costco. This irritates me every time as I abhor socks and rarely wear them. Even in January. In Canada.
The second thought involved a bunch of new information about the twins, especially Wyatt. Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again. Here I am, ready to share.
Last Wednesday, Wyatt had a trip to the cardiologist. I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work). In typical Logan form, the entire thing was a fiasco. I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.
At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4. As of this visit, the plans have changed. There is some concern about the relative pressures in the chambers of his heart. The thinking now, is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later. We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery.
Let's just cut to the chase and say this was not the results that I was looking for.
I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years. I know, it is a long shot, but with the results that we have had so far, a mother can hope. And I did. What else could I do?
Sean called me at work when he got home from his doctor adventure. I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh". Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest. No matter how straightforward this surgery is going to be, I still don't have to like it.
Once we have a surgery date, we can start planning; without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date. I am trying very hard not to let that stress me out.
Tuesday morning, we had another double booking adventure. Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning. Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day. At 9:30. At the opposite end of town. Yikes!
Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting. In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9. We loaded everyone up and shot across town. We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.
Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc. Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz. Zoe is also 2 cm longer than her brother. The effects of the hypotonia and delay are getting more noticeable. However, on the positive side of things, both are growing steadily on their prospective charts. The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark). All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.
[Record scratch] Pardon?!
I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more. One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery. Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia. People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia. If it wasn't that, what was it? How would this impact on his eventual heart surgery? Was it related? My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school.
I had to hold him down, which was anything but pleasant. We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results. Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth. After half an hour, I returned to the clinic. I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine. I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled. The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while. Since I had the info that I wanted, I chose to go home.
On the way home we totally greased out at Burger King. Whopper, poutine, coke and an hour later, another damn Whopper. Yes, you heard me. I consumed enough calories to feed a family. By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine. Thankfully. Thank you universe... who/whatever is listening. Thank you.
The last week has been riddled with drama. In all fairness, we've been lucky for a while; I guess it was our turn. Like any parents, we get knocked down from time to time. Without trying to sound like a Chumbawumba tune, we get back up again. And again. And again. We have to. For ourselves and for our family's sake. Once we get our date, we will plan and it will all fall into place as it should. It will suck, but it will happen and we will get through it as a family. Of that I can assure you.
But, as the song says, I get back up again. You're never gonna keep me down. Even with stupid socks.
The second thought involved a bunch of new information about the twins, especially Wyatt. Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again. Here I am, ready to share.
Last Wednesday, Wyatt had a trip to the cardiologist. I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work). In typical Logan form, the entire thing was a fiasco. I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.
At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4. As of this visit, the plans have changed. There is some concern about the relative pressures in the chambers of his heart. The thinking now, is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later. We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery.
Let's just cut to the chase and say this was not the results that I was looking for.
I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years. I know, it is a long shot, but with the results that we have had so far, a mother can hope. And I did. What else could I do?
Sean called me at work when he got home from his doctor adventure. I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh". Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest. No matter how straightforward this surgery is going to be, I still don't have to like it.
Once we have a surgery date, we can start planning; without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date. I am trying very hard not to let that stress me out.
Tuesday morning, we had another double booking adventure. Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning. Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day. At 9:30. At the opposite end of town. Yikes!
Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting. In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9. We loaded everyone up and shot across town. We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.
Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc. Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz. Zoe is also 2 cm longer than her brother. The effects of the hypotonia and delay are getting more noticeable. However, on the positive side of things, both are growing steadily on their prospective charts. The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark). All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.
[Record scratch] Pardon?!
I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more. One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery. Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia. People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia. If it wasn't that, what was it? How would this impact on his eventual heart surgery? Was it related? My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school.
I had to hold him down, which was anything but pleasant. We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results. Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth. After half an hour, I returned to the clinic. I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine. I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled. The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while. Since I had the info that I wanted, I chose to go home.
On the way home we totally greased out at Burger King. Whopper, poutine, coke and an hour later, another damn Whopper. Yes, you heard me. I consumed enough calories to feed a family. By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine. Thankfully. Thank you universe... who/whatever is listening. Thank you.
The last week has been riddled with drama. In all fairness, we've been lucky for a while; I guess it was our turn. Like any parents, we get knocked down from time to time. Without trying to sound like a Chumbawumba tune, we get back up again. And again. And again. We have to. For ourselves and for our family's sake. Once we get our date, we will plan and it will all fall into place as it should. It will suck, but it will happen and we will get through it as a family. Of that I can assure you.
But, as the song says, I get back up again. You're never gonna keep me down. Even with stupid socks.
So sorry to hear about the surgery, but glad for the bloodwork coming back fine. What an awfully stressful week for your family. Hope that you'll know a date soon. (And for stress minimization, the sooner the better probably.)
ReplyDeleteMy baby girl had open heart surgery too, 2 months ago, for a large VSD and ASD. Our cardiologist was also worried about the pressure... The time up till her surgery, and up till having a date also, was indeed stressful. But recovery went SO fast, and that's what I hear from most parents with babies with a similar surgery.
Take care of yourself, and feel free to email me if you have any questions...
(notime2bbored at live.com)
Thanks so much. Glad to hear your little one did so well. These weeks come, these weeks go. They just make the other weeks that much sweeter.
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