Friday, May 19
Sweet Baby
Hello there. I have good news to report (hallelujah!). BabyBug had another cardiology appointment yesterday and it's looking like the gradient/blockage/re-coarctation issue is resolving! His BP is still high but it's being adequately controlled by his medication and we're just going to keep an eye on it for now. He will go back in two months for another BP check and an echo to take a look at his heart. I am so relieved that I don't know how to express it. Thanks to all of you for your ongoing concern and prayers and thoughts and chicken bone shaking. As your reward, here's another look at the sweet baby learning how to jump. Notice the extreme drool:
Thursday, April 27
Dribbles
of information that is. Here's what I know: Baby Bug is holding steady, if not actually getting better, and he's managed to avoid any procedures more invasive that lots of blood pressure readings. Hooray! We're not in the clear, but we're closer to it than we've been in months so I'll take it.
I also know that I am officially the worst blogger ever. If you're still out there, thanks for keeping up with me/us. I don't know that I'm ready to quit blogging altogether (you may be wondering what the difference would be!) but it appears that blogging is falling ever lower on my lengthening to do list. I'm mulling, but in the meantime, I promise to continue to update on BB's progress.
Here's a spanky fresh pic of the little bugger (ha! get it? I'm hilarious, I know):
I also know that I am officially the worst blogger ever. If you're still out there, thanks for keeping up with me/us. I don't know that I'm ready to quit blogging altogether (you may be wondering what the difference would be!) but it appears that blogging is falling ever lower on my lengthening to do list. I'm mulling, but in the meantime, I promise to continue to update on BB's progress.
Here's a spanky fresh pic of the little bugger (ha! get it? I'm hilarious, I know):
Thursday, April 6
Life Is So Uncertain
We know nothing, except that we are still waiting. Baby Bug's previously-discussed possible medical badness is still pretty much the same, despite the meds increase. His PC increased the dosage again and we're giving it another two weeks before moving onto to check out the kidneys, etc.
I guess that's good that we didn't have to do anything right now, today? Yes, of course it's good, what am I saying? It's just not over. We don't have to do it today but I'm pretty sure we still have to do it. And if we have to do it, we might as well do it today so that we can all go do something else, like go to the park or something.
I guess that's good that we didn't have to do anything right now, today? Yes, of course it's good, what am I saying? It's just not over. We don't have to do it today but I'm pretty sure we still have to do it. And if we have to do it, we might as well do it today so that we can all go do something else, like go to the park or something.
Wednesday, April 5
Mad Baby
Tomorrow is Baby Bug's third post-op appointment with his pediatric cardiologist (PC) and I have been fighting with a feeling of impending doom for two weeks now. Oh lovely internets, you have been there for me countless times and I turn to you yet again. It's going to be ok, right?
Since I skipped most of the oogy parts, let me fill you in on the necessary background. Baby Bug had a severely narrowed portion of his aorta (a coarctation of the aorta), which is the main artery supplying blood to the body, and also a hypoplastic (narrowed) transverse aortic arch. These problems meant that he was getting precious little precious blood circulating to about 2/3 of his body, which showed up clinically as really high blood pressure in the arm (before the obstruction) and significantly lower pressure in the leg (after the obstruction). This discrepancy in the blood pressure is caused by the fact that the heart is having to work so much harder to try to push the blood through the obstruction (high in arm) but it doesn't really get through much (low in leg); it is referred to as the gradient. Does that make sense (in an amateur cardiologist kind of way)? Incidentally, you should have no gradient a'tal.
So then, pre-op, Baby Bug's gradient was 40-50. Post-op, it was zero, and all was as it should be. Two weeks ago, it was 25. I don't know the whole range of explanations for the new gradient, but from what I understand, this is not a good development. As in, it appears that there may be some sort of (new? returned?) obstructive-ness going on in there.
On top of that crap sundae, my boy has hypertension that just won't quit. As in double the BP a lad of his size should be presenting. Even while medicated. (And I know what you're thinking, but no, it has absolutely nothing to do with my own personal BP issues. I wish it did--it would be less scary, medically speaking.) This is, in the words of his PC, "surprising."
So.
Got any chicken bones left to shake out there, internet aunties?
I swear to all that is holy we will one day be healthy again over here in the Bug Household and talk about something else.
Since I skipped most of the oogy parts, let me fill you in on the necessary background. Baby Bug had a severely narrowed portion of his aorta (a coarctation of the aorta), which is the main artery supplying blood to the body, and also a hypoplastic (narrowed) transverse aortic arch. These problems meant that he was getting precious little precious blood circulating to about 2/3 of his body, which showed up clinically as really high blood pressure in the arm (before the obstruction) and significantly lower pressure in the leg (after the obstruction). This discrepancy in the blood pressure is caused by the fact that the heart is having to work so much harder to try to push the blood through the obstruction (high in arm) but it doesn't really get through much (low in leg); it is referred to as the gradient. Does that make sense (in an amateur cardiologist kind of way)? Incidentally, you should have no gradient a'tal.
So then, pre-op, Baby Bug's gradient was 40-50. Post-op, it was zero, and all was as it should be. Two weeks ago, it was 25. I don't know the whole range of explanations for the new gradient, but from what I understand, this is not a good development. As in, it appears that there may be some sort of (new? returned?) obstructive-ness going on in there.
On top of that crap sundae, my boy has hypertension that just won't quit. As in double the BP a lad of his size should be presenting. Even while medicated. (And I know what you're thinking, but no, it has absolutely nothing to do with my own personal BP issues. I wish it did--it would be less scary, medically speaking.) This is, in the words of his PC, "surprising."
So.
Got any chicken bones left to shake out there, internet aunties?
I swear to all that is holy we will one day be healthy again over here in the Bug Household and talk about something else.
Wednesday, March 15
Where Do I Start?
So many many things have happened since we last spoke, I don't think I can effectively catch up. I have been delaying coming back here for a little while now, hoping that things would start becoming more clear to me emotionally. So far, no luck. Still shellshocked. Shall I get on with it then?
I think at least some of you know that after struggling with infertility, four months of bedrest, severe pre-eclampsia at the end, an emergency c-section, a week in the NICU and breastfeeding drama galore, my dear little Baby Bug was very unexpectedly diagnosed with a congenital heart defect that required open heart surgery within hours. Talk about a blow to the solar plexus. I still cannot begin to find the words to talk about what it was like to see my sweet boy cracked open from stem to stern with tubes and ports and lines inserted in, literally, every square inch of his tiny body.
I can't relive it any more than that today. I will leave you with the news that he is doing well now and should lead a normal life.
I'm sorry to cut and run, but I think that's all we can do right now.
I think at least some of you know that after struggling with infertility, four months of bedrest, severe pre-eclampsia at the end, an emergency c-section, a week in the NICU and breastfeeding drama galore, my dear little Baby Bug was very unexpectedly diagnosed with a congenital heart defect that required open heart surgery within hours. Talk about a blow to the solar plexus. I still cannot begin to find the words to talk about what it was like to see my sweet boy cracked open from stem to stern with tubes and ports and lines inserted in, literally, every square inch of his tiny body.
I can't relive it any more than that today. I will leave you with the news that he is doing well now and should lead a normal life.
I'm sorry to cut and run, but I think that's all we can do right now.
Sunday, January 15
Baby Bug Is Here!!!!!!!
Thanks to Baby Bug's fantastic internet aunties, I think most of you know that my dear sweet adorable child was wrenched screaming into the world at 7:19 p.m. on January 2nd. For the gory details behind that story, read on:
Saturday the 31st I went to the hospital for another non stress test, which was just fine, but my head had started to hurt pretty badly. It felt like I had a very tight headband on and the pressure just got worse and worse. Once I got home, Tylenol III with codeine didn't help it at all, so my OB told me to go back to the hospital and be admitted. They started giving me demerol shots, which didn't help too much either but made me care about it less. Ah, narcotics. My BP was nuts (180/110 at one point), but all the bloodwork, etc was fine at this point. My OB came up to the hospital (on New Years' Eve!) to check me out and she decided that things were bad enough to induce Tuesday morning, at 36 weeks and 1 day.
I really don't remember Sunday. Seriously. I do know that Sunday evening they started me on a heavy dose of magnesium sulfate to prevent seizures from the BP (!!!!), which was pretty much as horrible as advertised (it burns badly going into the vein, makes you feel very hot and flu-like and completely out of it) and put in cervadil to ripen my cervix (which was only dilated a fingertip). Baby Bug was still ok on the monitors but the headache was getting worse so they decided to move the induction up to Monday.
Monday morning they started the pitocin drip and I got an epidural pretty early on, mostly because it lowers the BP. I had lots of strong contractions that I couldn't even feel (hurray!) but the headache continued to get worse. It felt like my head was being squeezed in a vice by this point. I didn't find this out until later but my kidneys suddenly started shutting down, BP went through the roof, and I had bleeding that made them think I was developing a placental abruption. All I remember is that my nurse told me that I needed a c-section right away and that it would all be fine.
Baby Bug was born a few minutes later at exactly 36 weeks of gestation. He was the most beautiful boy I have ever seen and hearing him cry for the first time absolutely knocked me out. I never knew that I could love someone so much. That fat little baby weighed 7 lbs, 8 oz and measured 20 inches long and he was perfectly fine at birth with 9 and 9 on his Apgars.
Then, he turned blue. Then purple. He stopped breathing about 30 minutes after birth and went into severe respiratory distress. He was immediately put on a ventilator, had umbilical ivs put in, and a thousand other tubes and gizmos attached to him. I wasn't allowed to see him until I was off the magnesium sulfate, which was 24 hours after his birth. When they wheeled me into NICU for the first time, seeing him splayed out under a warmer with every square inch of his little body attached to some kind of medical device was absolutely horrible. He looked so tiny and alone and hurting and there was absolutely nothing I could do for him. We weren't even allowed to touch him. I just cried. I will spare you the photographic evidence.
We are very fortunate that Baby Bug started to get better pretty quickly. He was taken off the ventilator after three days and then gradually weaned off all the other apparatus little by little. Once he was off the ventilator, we were allowed to touch him and finally finally I was allowed to hold my little baby on Friday, four days after his birth. It seemed like a million years. They also finally started to feed him on Friday, through a tube put down his mouth into his stomach. I was discharged from the hospital Friday night and having to leave without Baby Bug was incredibly hard. I felt like I had abandoned him there.
He finally came home Tuesday night after 8 days in the NICU and he is doing well with just a few little ongoing medical issues. For the most part, he is happy and healthy and we're working on getting his breastfeeding skills over the hump. He's been having some trouble latching on right but I think we're getting there (two cracked nipples later. Eek).
I have attached my favorite picture of our dynamic duo, taken minutes after his birth and mere seconds before his dramatic lack of respiration. I'm just so thrilled that he's here in the world and able to scare me. And if you're wondering--yes, he is worth every last bit of it.
Saturday the 31st I went to the hospital for another non stress test, which was just fine, but my head had started to hurt pretty badly. It felt like I had a very tight headband on and the pressure just got worse and worse. Once I got home, Tylenol III with codeine didn't help it at all, so my OB told me to go back to the hospital and be admitted. They started giving me demerol shots, which didn't help too much either but made me care about it less. Ah, narcotics. My BP was nuts (180/110 at one point), but all the bloodwork, etc was fine at this point. My OB came up to the hospital (on New Years' Eve!) to check me out and she decided that things were bad enough to induce Tuesday morning, at 36 weeks and 1 day.
I really don't remember Sunday. Seriously. I do know that Sunday evening they started me on a heavy dose of magnesium sulfate to prevent seizures from the BP (!!!!), which was pretty much as horrible as advertised (it burns badly going into the vein, makes you feel very hot and flu-like and completely out of it) and put in cervadil to ripen my cervix (which was only dilated a fingertip). Baby Bug was still ok on the monitors but the headache was getting worse so they decided to move the induction up to Monday.
Monday morning they started the pitocin drip and I got an epidural pretty early on, mostly because it lowers the BP. I had lots of strong contractions that I couldn't even feel (hurray!) but the headache continued to get worse. It felt like my head was being squeezed in a vice by this point. I didn't find this out until later but my kidneys suddenly started shutting down, BP went through the roof, and I had bleeding that made them think I was developing a placental abruption. All I remember is that my nurse told me that I needed a c-section right away and that it would all be fine.
Baby Bug was born a few minutes later at exactly 36 weeks of gestation. He was the most beautiful boy I have ever seen and hearing him cry for the first time absolutely knocked me out. I never knew that I could love someone so much. That fat little baby weighed 7 lbs, 8 oz and measured 20 inches long and he was perfectly fine at birth with 9 and 9 on his Apgars.
Then, he turned blue. Then purple. He stopped breathing about 30 minutes after birth and went into severe respiratory distress. He was immediately put on a ventilator, had umbilical ivs put in, and a thousand other tubes and gizmos attached to him. I wasn't allowed to see him until I was off the magnesium sulfate, which was 24 hours after his birth. When they wheeled me into NICU for the first time, seeing him splayed out under a warmer with every square inch of his little body attached to some kind of medical device was absolutely horrible. He looked so tiny and alone and hurting and there was absolutely nothing I could do for him. We weren't even allowed to touch him. I just cried. I will spare you the photographic evidence.
We are very fortunate that Baby Bug started to get better pretty quickly. He was taken off the ventilator after three days and then gradually weaned off all the other apparatus little by little. Once he was off the ventilator, we were allowed to touch him and finally finally I was allowed to hold my little baby on Friday, four days after his birth. It seemed like a million years. They also finally started to feed him on Friday, through a tube put down his mouth into his stomach. I was discharged from the hospital Friday night and having to leave without Baby Bug was incredibly hard. I felt like I had abandoned him there.
He finally came home Tuesday night after 8 days in the NICU and he is doing well with just a few little ongoing medical issues. For the most part, he is happy and healthy and we're working on getting his breastfeeding skills over the hump. He's been having some trouble latching on right but I think we're getting there (two cracked nipples later. Eek).
I have attached my favorite picture of our dynamic duo, taken minutes after his birth and mere seconds before his dramatic lack of respiration. I'm just so thrilled that he's here in the world and able to scare me. And if you're wondering--yes, he is worth every last bit of it.
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