Caleb, grandma and I participated in the Seattle Heart Walk this weekend. It is one of the largest walks in the nation in both participation and donations. Due to the traffic getting to the walk, we were running a little late. We didn't get there until after 8:30, but that turned out to be perfect. Most everyone was in the stands so we got to walk around the outside area without too many people.
We picked up a red hat (the "survivor hat") for Caleb and for grandma. Then we went and wrote a sign about who we were walking for. It said, "I am walking for..." and we crossed out "walking" and put in "rolling." Caleb was rolling for himself, and grandma had one that said she was walking for her grandson. I just was there to push the stroller! hehe
As we started the course, there were tons of people just streaming out of Quest field (where the Seahawks play). We had the choice of doing a 3.5 mile route or a 1 mile route. Well, as we were decided if we should walk up the viaduct or not, we were stopped by a reporter from the PI that wanted to talk to grandma about why she was walking. I pointed to the baby. "This is why we are walking." He was surprised to see a survivor so young (although I'm sure there were others there.) He interviewed us, and then walked along the route with us.
We ended up chosing the 1 mile route because we got so far behind with the interviewer--we were actually some of the last people to finish. We were at the end, but did pass two old ladies with canes and a little boy with a brace on his leg--if that tells you how far behind we were. hehe In any case, we finished the walk and were a little like, "Wow, that was quick" because we took the short route.
It did keep us dry, though, because those who took the 3.5 mile walked on top of the viaduct and we walked underneath. We got back before the majority of the crowd and were able to walk around the booths, etc, in Quest field. We crossed the finish line and got our photo taken. It was cool. :)
After that we decided to take off because Caleb fell asleep, and just then everyone from the 3.5 mile was coming back. We just missed the crowds! Whew. We were able to leave without a big lineup. We lucked out on our timing.
Overall, Caleb managed to raise $200 for the heart walk. Not bad for a 6 month old. Thank you to everyone that helped us out. We very much appreciate your support!
I'll be looking in the Seattle P.I. for Caleb's story tomorrow!!!
Saturday, October 6, 2007
Monday, October 1, 2007
Doctors Appointment!
Caleb had his regular check-up with his cardiologist last Wednesday. He was cranky and tired because we woke him up, didn't feed him, then drug him to the doctor's office. He told the lady who was weighing and measuring him all of his troubles, and didn't let her get a blood pressure. I was worried about our start as his screams filled the building!!
But we got thru (apparently he's about 16.5lbs, although he wasn't cooperating too well...) and to Colleen, who does our echos. We had breakfast with Colleen, and she popped in a Baby Einstein video to keep him entertained. He wasn't sure which he liked more--the movie on the tv or the images of his heart on the screen. He layed there and she got all of the shots that she needed for once! They were even to see the left side of his heart!!
What they discovered:
~All TGA repairs leak at the suture sites--his are leaking at a very low rate so this is good
~His flow to the left lung is still open
~The flow is still asymmetrical
~The pressures on his right side of his heart are doing very well
~His blood pressure and EKG was very good
As his cardiologist said, "This is just a good news visit!" Yay!
Then we went to the eye doctor. Ha... the little guy had to throw me a curve ball. His eyes are normal vision for his age (which is slightly far sighted). That's good news. He is using both eyes equally. That is good news. He, however, only uses one eye at a time. The other one goes "out." Their suggestion? If it doesn't get better in a month: surgery.
Oh little bug... let's not do any further surgery! The eye doctor did say that his farsightedness will help it improve if it does improve. Is there a history of this in the family, he asks? No... my little guy is apparently a trend setter! LOL
My idea is that while he was in the hospital, he didn't have enough things to focus on, so his eyes got behind. And now it might be too late to get them back without a serious intervention. Guu.
But we got thru (apparently he's about 16.5lbs, although he wasn't cooperating too well...) and to Colleen, who does our echos. We had breakfast with Colleen, and she popped in a Baby Einstein video to keep him entertained. He wasn't sure which he liked more--the movie on the tv or the images of his heart on the screen. He layed there and she got all of the shots that she needed for once! They were even to see the left side of his heart!!
What they discovered:
~All TGA repairs leak at the suture sites--his are leaking at a very low rate so this is good
~His flow to the left lung is still open
~The flow is still asymmetrical
~The pressures on his right side of his heart are doing very well
~His blood pressure and EKG was very good
As his cardiologist said, "This is just a good news visit!" Yay!
Then we went to the eye doctor. Ha... the little guy had to throw me a curve ball. His eyes are normal vision for his age (which is slightly far sighted). That's good news. He is using both eyes equally. That is good news. He, however, only uses one eye at a time. The other one goes "out." Their suggestion? If it doesn't get better in a month: surgery.
Oh little bug... let's not do any further surgery! The eye doctor did say that his farsightedness will help it improve if it does improve. Is there a history of this in the family, he asks? No... my little guy is apparently a trend setter! LOL
My idea is that while he was in the hospital, he didn't have enough things to focus on, so his eyes got behind. And now it might be too late to get them back without a serious intervention. Guu.
Tuesday, September 4, 2007
Lung Scan Results
So... we went to Children's for the lung scan. It was pretty uneventful. Caleb doesn't think much of getting IVs, but he does seem to like the test. He let the nurses velcro him into place without much issue. When the cameras came down he looked at them and even pet them a little bit. After a while he decided things were too boring and went to take a nap.
I figured out why I thought I saw two functioning lungs on the scan. It turns out that the camera takes a front and a back view. What I thought was two lungs was the right lung forwards, and then the right lung backwards. There should really be four lungs on the screen. This time he did indeed have four, which meant that the balloon worked and his lungs were functioning.
After several days (hey, wait, weren't we supposed to find out that day?? Why yes, yes we were!) we found out that his lung blood distribution wasn't as even as we had hoped. They were hoping for 70/30 (55/45 is normal). Caleb turned out a 87/13.
But this means something good: The ballooned artery is still open.
The next step was supposed to be a stent and surgery, but the doctors at Children's got together to discuss what to do. They were faced with the probability that the ballooning would close again. The right side of his heart, however, was showing no signs of strain from pumping the blood unevenly. The key turned out to be what was going on *after* the block.
For some reason, Caleb's blood vessels are larger than normal. Not good, not bad, it just is what it is. But because of this, they want to put off the surgery. They are still hopeful that this bloodflow can grow.
I'm talking to him nearly every night about this. He is definitely working on growing up! He's getting huge. He's glad that he doesn't have to have any more operations at the moment. And so am I.
They are going to be watching this very closely (big surprise there!). If everything stays open, they're going to see what develops. If it doesn't stay open, they'll take further action, which will probably be a stent through the chest wall. September 26th is our next appointment. So let's hope that things keep growing like he does. :)
I figured out why I thought I saw two functioning lungs on the scan. It turns out that the camera takes a front and a back view. What I thought was two lungs was the right lung forwards, and then the right lung backwards. There should really be four lungs on the screen. This time he did indeed have four, which meant that the balloon worked and his lungs were functioning.
After several days (hey, wait, weren't we supposed to find out that day?? Why yes, yes we were!) we found out that his lung blood distribution wasn't as even as we had hoped. They were hoping for 70/30 (55/45 is normal). Caleb turned out a 87/13.
But this means something good: The ballooned artery is still open.
The next step was supposed to be a stent and surgery, but the doctors at Children's got together to discuss what to do. They were faced with the probability that the ballooning would close again. The right side of his heart, however, was showing no signs of strain from pumping the blood unevenly. The key turned out to be what was going on *after* the block.
For some reason, Caleb's blood vessels are larger than normal. Not good, not bad, it just is what it is. But because of this, they want to put off the surgery. They are still hopeful that this bloodflow can grow.
I'm talking to him nearly every night about this. He is definitely working on growing up! He's getting huge. He's glad that he doesn't have to have any more operations at the moment. And so am I.
They are going to be watching this very closely (big surprise there!). If everything stays open, they're going to see what develops. If it doesn't stay open, they'll take further action, which will probably be a stent through the chest wall. September 26th is our next appointment. So let's hope that things keep growing like he does. :)
Monday, August 13, 2007
General Check Up!
On Friday, Caleb saw his regular doctor. Why?? Just the standard 4 month check up. Whew!
How nice just to have a normal check-up. :) I had my check-up earlier in the day, and then it was Caleb's turn. He was pretty excited about the whole thing.
He watched the nurses and the doctor, very interested in what they were up to. He was weighed and measured without issue. He is now 14.5 lbs and 26 inches long! That bumps him up to the 50th percentile in weight (from the 25th). His height was in the 50th percentile, but that was also boosted up to the 70th percentile! Whoa! Go baby!
Apparently with all this extra O2 that he's getting, he's going to use it to grow like a little weed. :)
He also showed off, slapping his feet down onto the paper they had on the exam table. It was very loud to talk to the doctor over the sounds of the laughing and squeeling. He thought the whole exam was a great play-date with the doctor. I hadn't seen him have that great of a time before!
Of course, all good things must come to an end, and his friend the nurse betrayed him by sticking him with not one, not two, but THREE needles. Oh, the little one cried. He was so betrayed and hurt, and just didn't know what to do. He hollared for a little while, and finally calmed down.
The next few days he was grumpy and achy.
It didn't stop us from trying his first solid foods, however! At the doctor's office we got the okay for him to start rice cereal. On Sunday evening I pulled up a chair, put him in his "Bumbo" and showed him the bowl and spoon. Caleb thought they were pretty funny. He thought the camera in his face was pretty funny, too. He laughed as the spoon was getting filled, and watched it as it came towards his mouth. In it went... and the little one gagged. Apparently he thinks rice cereal tastes as good as I think it does!!!
Well, the gagging stopped, and we have lots of pictures of a smiling boy with rice cereal dripping down his chin, his shirt, his sleeves, his hands and.... well, almost everything else! He did very well, and actually did get a few bites to eat before he got angry with the whole process. He was hungry and wanted food. Silly guy didn't realize he was already eating!
The little guy is in bed now, and I think I will get some sleep, too. Ta! :)
Or as Caleb would say: UNGOWA!
How nice just to have a normal check-up. :) I had my check-up earlier in the day, and then it was Caleb's turn. He was pretty excited about the whole thing.
He watched the nurses and the doctor, very interested in what they were up to. He was weighed and measured without issue. He is now 14.5 lbs and 26 inches long! That bumps him up to the 50th percentile in weight (from the 25th). His height was in the 50th percentile, but that was also boosted up to the 70th percentile! Whoa! Go baby!
Apparently with all this extra O2 that he's getting, he's going to use it to grow like a little weed. :)
He also showed off, slapping his feet down onto the paper they had on the exam table. It was very loud to talk to the doctor over the sounds of the laughing and squeeling. He thought the whole exam was a great play-date with the doctor. I hadn't seen him have that great of a time before!
Of course, all good things must come to an end, and his friend the nurse betrayed him by sticking him with not one, not two, but THREE needles. Oh, the little one cried. He was so betrayed and hurt, and just didn't know what to do. He hollared for a little while, and finally calmed down.
The next few days he was grumpy and achy.
It didn't stop us from trying his first solid foods, however! At the doctor's office we got the okay for him to start rice cereal. On Sunday evening I pulled up a chair, put him in his "Bumbo" and showed him the bowl and spoon. Caleb thought they were pretty funny. He thought the camera in his face was pretty funny, too. He laughed as the spoon was getting filled, and watched it as it came towards his mouth. In it went... and the little one gagged. Apparently he thinks rice cereal tastes as good as I think it does!!!
Well, the gagging stopped, and we have lots of pictures of a smiling boy with rice cereal dripping down his chin, his shirt, his sleeves, his hands and.... well, almost everything else! He did very well, and actually did get a few bites to eat before he got angry with the whole process. He was hungry and wanted food. Silly guy didn't realize he was already eating!
The little guy is in bed now, and I think I will get some sleep, too. Ta! :)
Or as Caleb would say: UNGOWA!
Wednesday, August 8, 2007
Updates
Caleb went to the cardiologist and they checked him out. Of course they couldn't see the left side of the heart. Isn't that just the case? So they said they think the artery is still open, but they are unable to see for sure.
Of course, that's not good enough for my doctor, so we're going to have to go into the hospital for the lung test in nuclear medicine again. It always seems like something is going on, doesn't it? Anyhow, we'll be heading in there near the end of the month, but will get the results right that day instead of having to wait for them.
We're hoping that the baby has at least a 70/30 split with the bloodflow to the lungs. The normal amount is 55/45, favoring the right side. Most of us are probably walking around with that. So we're talking to the baby about it, letting him know what his score should be.
If he makes the 70/30--no further action to be taken. We woot, we party, we do the happy dance!
If he does less than that, then they talk about the stent again. They cannot put an adult stent through the leg on the baby. If they do this, they will have to go in later and *rip it out.* This involves open-chest, real hard-core heart surgery. No thanks. So they have 'invented' an option. They will go to the surgeons, go thru the chest wall with an adult size stent (not opening the chest bone) and put it in place.
This will then require several smaller "surgeries" through the leg as the baby gets older to open up the stent into the full, adult size it will become.
What I am hoping for is this: Now that the lung gets the idea that it's supposed to be having a good blood flow, and now that the baby is on aspirin therapy, the two will combine (wonder twin powers, ACTIVATE!) and let that bloodflow grow like it should!
We found out the aspirin is every day for life. :) Hope the baby likes aspirin.
Of course, that's not good enough for my doctor, so we're going to have to go into the hospital for the lung test in nuclear medicine again. It always seems like something is going on, doesn't it? Anyhow, we'll be heading in there near the end of the month, but will get the results right that day instead of having to wait for them.
We're hoping that the baby has at least a 70/30 split with the bloodflow to the lungs. The normal amount is 55/45, favoring the right side. Most of us are probably walking around with that. So we're talking to the baby about it, letting him know what his score should be.
If he makes the 70/30--no further action to be taken. We woot, we party, we do the happy dance!
If he does less than that, then they talk about the stent again. They cannot put an adult stent through the leg on the baby. If they do this, they will have to go in later and *rip it out.* This involves open-chest, real hard-core heart surgery. No thanks. So they have 'invented' an option. They will go to the surgeons, go thru the chest wall with an adult size stent (not opening the chest bone) and put it in place.
This will then require several smaller "surgeries" through the leg as the baby gets older to open up the stent into the full, adult size it will become.
What I am hoping for is this: Now that the lung gets the idea that it's supposed to be having a good blood flow, and now that the baby is on aspirin therapy, the two will combine (wonder twin powers, ACTIVATE!) and let that bloodflow grow like it should!
We found out the aspirin is every day for life. :) Hope the baby likes aspirin.
Saturday, July 28, 2007
Palpating Pedal Pulses
When we spoke with the doctor about the cath procedure, he wasn't very sure of what the outcome would be. He said he was doubtful that they could balloon him, and doubtful that he could stent him... in fact he was suggesting that the better alternative would probably be to send Caleb to the surgery team and have them implant the stent. He basically said, "I could be an hour, I could be three, I don't know."
Well... when we were past the hour mark I started to relax. I had been telling everyone all morning that the balloon procedure would work, and that's just the way it is. Caleb and I had talked about it. The stenting didn't end up sounding as bad as I was afraid of, but I still didn't want that. I knew Caleb wouldn't want it, either.
After visiting the Parent's Center, I was walking back to visit the gift shop, and one of the doctors passed me. He was one of Caleb's original doctors and had recognized us from our original stay. He visited us that morning in the the pre-op area. In any case, he gave us a quick update. When they used the dye in his blood, the right lung instantly darkened and was full of blood. A small, pencil thin line of dye did eventually show up on the left side. He said that the doctor perfoming the procedure was "very surprised" but they were able to get a wire through. But that's where it was left, and the doctor didn't know what he was going to do from there yet.
I was very encouraged by this news indeed! After a while I got the page and went to listen to the doctor. I got some pretty pictures out of this deal. Before and after. Well, they did end up balooning the artery. There was a signifigant improvement over before (ie blood was flowing!!), however, blood wasn't flowing everywhere it needed to go... yet.
The doctor said that it might just fix on its own, now that the blood vessel was pumping blood where it should go, and might grow and expand like it needs to. He felt that the problem was at the beginning of the artery where he balooned it, not out in the branches. He said this wasn't very likely, but could happen. The second option was that now that there was bloodflow, in six months or so they might go in and give the baby a stent after all when he's bigger.
What we do now: Watch it. Make sure it doesn't close back up. Have an echo with our favorite cardiologist on Wednesday.
We spent the night at Children's for observation. What they ended up observing closely was his right leg. That was the side they went through the groin veins on, and although rare, the vein could colapse and not give blood to the rest of the leg. The signs were "a foot as blue as your jeans." This being said, Caleb's right leg was visibly paler than his left, and you could feel a temperature difference.
It was difficult to "palpate" his "pedal pulses." What this means is that it was difficult to feel his pulse in his right foot with your hand. The doctor who did the cath came back and felt that the bandage was too tight. He loosened it. In another hour he came back and loosened it a little more, and brought his doppler with him. (A doppler is a machine that listens to pulses--the same idea as the one that they use to listen to the baby's heartbeat when he's still inside the mama!) He "wasn't convinced" he was feeling a pulse in Caleb's foot The doppler proved there was a pulse.
All night long and all morning long everyone was concerned about the foot, and confused over the foot. Here the foot has pulses that you can feel no problem, there the foot has no pulses that you can feel, the foot is lighter than the other, the foot is colder than the other... one of the guys said, "If we didn't have the other leg to compare it to, then we would just think it was fine."
In the end, they sent him home and just told us to keep an eye on it.... bah, crazy stuff.
Well... when we were past the hour mark I started to relax. I had been telling everyone all morning that the balloon procedure would work, and that's just the way it is. Caleb and I had talked about it. The stenting didn't end up sounding as bad as I was afraid of, but I still didn't want that. I knew Caleb wouldn't want it, either.
After visiting the Parent's Center, I was walking back to visit the gift shop, and one of the doctors passed me. He was one of Caleb's original doctors and had recognized us from our original stay. He visited us that morning in the the pre-op area. In any case, he gave us a quick update. When they used the dye in his blood, the right lung instantly darkened and was full of blood. A small, pencil thin line of dye did eventually show up on the left side. He said that the doctor perfoming the procedure was "very surprised" but they were able to get a wire through. But that's where it was left, and the doctor didn't know what he was going to do from there yet.
I was very encouraged by this news indeed! After a while I got the page and went to listen to the doctor. I got some pretty pictures out of this deal. Before and after. Well, they did end up balooning the artery. There was a signifigant improvement over before (ie blood was flowing!!), however, blood wasn't flowing everywhere it needed to go... yet.
The doctor said that it might just fix on its own, now that the blood vessel was pumping blood where it should go, and might grow and expand like it needs to. He felt that the problem was at the beginning of the artery where he balooned it, not out in the branches. He said this wasn't very likely, but could happen. The second option was that now that there was bloodflow, in six months or so they might go in and give the baby a stent after all when he's bigger.
What we do now: Watch it. Make sure it doesn't close back up. Have an echo with our favorite cardiologist on Wednesday.
We spent the night at Children's for observation. What they ended up observing closely was his right leg. That was the side they went through the groin veins on, and although rare, the vein could colapse and not give blood to the rest of the leg. The signs were "a foot as blue as your jeans." This being said, Caleb's right leg was visibly paler than his left, and you could feel a temperature difference.
It was difficult to "palpate" his "pedal pulses." What this means is that it was difficult to feel his pulse in his right foot with your hand. The doctor who did the cath came back and felt that the bandage was too tight. He loosened it. In another hour he came back and loosened it a little more, and brought his doppler with him. (A doppler is a machine that listens to pulses--the same idea as the one that they use to listen to the baby's heartbeat when he's still inside the mama!) He "wasn't convinced" he was feeling a pulse in Caleb's foot The doppler proved there was a pulse.
All night long and all morning long everyone was concerned about the foot, and confused over the foot. Here the foot has pulses that you can feel no problem, there the foot has no pulses that you can feel, the foot is lighter than the other, the foot is colder than the other... one of the guys said, "If we didn't have the other leg to compare it to, then we would just think it was fine."
In the end, they sent him home and just told us to keep an eye on it.... bah, crazy stuff.
Friday, July 27, 2007
At Children's
I am in Children's Hospital's new Parent area at the moment. Caleb is having his procedure in the heart cath lab. We just ate lunch and are now looking aroud. I just saw the internet and thought I would pop on. You know an addict when you see one.
The little dude did really well this morning for not getting to eat. I woke him up at 1am for a bottle (he didn't sleep-walk but he sleep-ate!) He probably didn't even know I was there! But he ate 3oz and then went back to sleep. When I got him up to put him in the car seat, he was still in the same position.
We got to Children's and they put us in a waiting area.... where we waited. He was weighed, measured and put in a gown. Thankfully he went to sleep for a while. Then when he woke up he realized that he hadn't ate yet and started to hollar. This was at about 10am when his procedure was supposed to start.
After he calmed down, the doctors showed up, and finally they took him back at about 10:20 a.m. I went up to the cafeteria and had the famous grilled cheese sandwich that they serve here. TWO THUMBS UP on this thing... I swear it's worth coming to the cafeteria here just for the cheap food. haha But it's not healthy food... go figure. The best things here are the grilled cheese, the cheeseburger and the fried chicken strips!
Ah well, just stopped by to explore the area... will update. :)
The little dude did really well this morning for not getting to eat. I woke him up at 1am for a bottle (he didn't sleep-walk but he sleep-ate!) He probably didn't even know I was there! But he ate 3oz and then went back to sleep. When I got him up to put him in the car seat, he was still in the same position.
We got to Children's and they put us in a waiting area.... where we waited. He was weighed, measured and put in a gown. Thankfully he went to sleep for a while. Then when he woke up he realized that he hadn't ate yet and started to hollar. This was at about 10am when his procedure was supposed to start.
After he calmed down, the doctors showed up, and finally they took him back at about 10:20 a.m. I went up to the cafeteria and had the famous grilled cheese sandwich that they serve here. TWO THUMBS UP on this thing... I swear it's worth coming to the cafeteria here just for the cheap food. haha But it's not healthy food... go figure. The best things here are the grilled cheese, the cheeseburger and the fried chicken strips!
Ah well, just stopped by to explore the area... will update. :)
Wednesday, July 18, 2007
Bah News.
Bah. Bah bah bah.
So I got a phone call about my little guy today. It turns out that the pulling in his newly fixed heart is affecting the bloodflow to his left lung after all. So now he has to have another procedue, which will happen on Friday at Children's Hospital. This will require another overnight stay.
I have more details, but I must say I've had a very long and very tiring day...
So I got a phone call about my little guy today. It turns out that the pulling in his newly fixed heart is affecting the bloodflow to his left lung after all. So now he has to have another procedue, which will happen on Friday at Children's Hospital. This will require another overnight stay.
I have more details, but I must say I've had a very long and very tiring day...
Friday, July 13, 2007
Ha! A new post!
Let me tell you, we have been very busy...
Last month Mr. Caleb was feeling a little under the weather. We took him to his regular pediatrician and they sent us for an overnight in the hospital. Any other baby they said that they would have sent home with a "keep an eye on him." But they wanted to keep an even closer eye on him. So we spent the night at Children's Hospital. What was wrong with him? Who knows!! His fever was gone by that afternoon in the ER, and he was playing and being a normal baby. His breathing, which had turned to a rough grunting, was smooth once again.
That week his family from Kentucky came to visit: Auntie, Nana and Great Grandma (aka Granny). We had a good week with them. He didn't mind getting poked and prodded by family. :)
Today we had his "Lung Profusion Scan." They checked to see how much blood was flowing from the heart to each lung. I do not know the results of this scan... the techs wouldn't even give me an idea. From my viewpoint I could see there WAS indeed blood flowing to each lung, and to me it looked like there was a difference, but not a huge one. Of course, I am not a tech, and I cannot say for sure.
We also had his weight-check and doctor visit. He is 12.5lbs now. I was mistaken earlier when I said he was 50% all the way. He was 50% in height/head size. 25% is where he is on his weight. So I got a skinny little guy. He's actually not all that skinny! He does have a cute little belly, nice chubby thighs and arms... a dinky bum, though! He has the cutest little bottom.
He's doing well, except we must now add another doctor: an eye doctor. His pediatrician thinks that his eyes are very slightly crossed. So they just want to make sure there are no eye muscle problems. As we've heard countless times, it's better to fix this stuff now than wait until he's older (and yet we've heard countless times that they're waiting until he's older to do certain things!)
Last month Mr. Caleb was feeling a little under the weather. We took him to his regular pediatrician and they sent us for an overnight in the hospital. Any other baby they said that they would have sent home with a "keep an eye on him." But they wanted to keep an even closer eye on him. So we spent the night at Children's Hospital. What was wrong with him? Who knows!! His fever was gone by that afternoon in the ER, and he was playing and being a normal baby. His breathing, which had turned to a rough grunting, was smooth once again.
That week his family from Kentucky came to visit: Auntie, Nana and Great Grandma (aka Granny). We had a good week with them. He didn't mind getting poked and prodded by family. :)
Today we had his "Lung Profusion Scan." They checked to see how much blood was flowing from the heart to each lung. I do not know the results of this scan... the techs wouldn't even give me an idea. From my viewpoint I could see there WAS indeed blood flowing to each lung, and to me it looked like there was a difference, but not a huge one. Of course, I am not a tech, and I cannot say for sure.
We also had his weight-check and doctor visit. He is 12.5lbs now. I was mistaken earlier when I said he was 50% all the way. He was 50% in height/head size. 25% is where he is on his weight. So I got a skinny little guy. He's actually not all that skinny! He does have a cute little belly, nice chubby thighs and arms... a dinky bum, though! He has the cutest little bottom.
He's doing well, except we must now add another doctor: an eye doctor. His pediatrician thinks that his eyes are very slightly crossed. So they just want to make sure there are no eye muscle problems. As we've heard countless times, it's better to fix this stuff now than wait until he's older (and yet we've heard countless times that they're waiting until he's older to do certain things!)
Friday, June 15, 2007
Big Week!!
Well, this was a huge week for the little one. Little guy, big times.
Monday came all too soon for mama. It was the day that I started back at work. This is a good thing because now I am getting paid again (I ran out of my vacation/sick time). So I’m back at work doing my thing. It went well at first, and I can make it generally through half a day before I start missing him so much. Honestly if I could make this same money and work part-time, I would love that. I like being out of the house and talking to people, and yet I also like being with my little bug. I try to keep the phone call down to once a day to my mom.
The first day I called and she picked up he was crying in the background. This started me crying at my desk. I wanted to be there and hug him and have him crying in my ear in person!
Wednesday didn’t come soon enough. What was Wednesday? His cardiology appointment, and the day I took off from work. Usually we leave the house before 8am and get home about 1pm. It’s a long day, so I thought I would just take the remainder of the day off to be with him.
The cardiologist went well. He was weighed, measured and declared cute! I didn’t get an exact weight off of them, we were having so much trouble trying to get the bug to stretch out for his height that I forgot. He was measured twice in height, and the end result was 23 inches. The nurse felt he looked longer than that, but he wasn’t going to cooperate to find out.
After we went through that wiggly episode, we took him for the echo. He sat still for like… 12 seconds. Then he started to wiggle and get upset. He didn’t like the cold gel on him, and he didn’t like the probe pushing on him. A bottle let him keep quiet (but not still) for a few minutes. Finally they let him fall asleep on me before they did a few more scans. In the end Caleb declared he didn’t like having his belly pushed on by the person doing the echo (who is a nice lady!) and woke up to complain about it.
They followed this torture up with a blood pressure (ANGRY baby) and an EKG (he didn’t really care). Both of these looked fantastic.
His cardiologist said that everything is looking so well. What she is concerned about is that she cannot see the left part of his heart in the scans. Why not? A) Wiggly baby, B) Scar tissue on the front of his chest, C) the left side is hard to see and D) the little guy is a ‘difficult scan’ even today. What she wants to see is how the blood is flowing to the lungs. If blood to the lungs is going well, then she knows that part of his heart is going well.
The next step: A chest x-ray. So we went down to the x-ray, and we were shown on a stuffed bunny how the baby was supposed to lay for his x-rays (and asked if anyone could be pregnant—I know the answer to this is definitely no, but it’s still a scary question to someone who just had a baby!). Let me tell you, Caleb did NOT think much of this at all.
At all.
I’m sure the other parents were all a little scared at the screams that were going on. At least we know that the lungs are definitely working!!
The torture was soon finished with and we went back to our room to wait. The doctor examined the chest x-rays and then came back with her report. The bloodflow to his lungs is definitely un-even. How un-even? They can’t tell from the x-ray. What they are going to have to do is do another one, but this time with an IV with special tracers so that they can tell how much is going to each lung.
If it is 60/40ish… no problem.
If it is 80/20… no problem now, but it could be a problem when he’s an adult. She’s now looking 20-40 years down the road for him. She mentioned that she’s overly cautious and conservative, and this we know.
If things are fine: great, no problem.
If there is something that needs to be fixed, then he will need to go to the cardiac cath lab to see if there is anything that can be done about it. This test that we’ll do will be within the next few months.
To prove how well he was developing, Caleb decided to show them his stuff. He sat up, held his head up very nicely, and then rolled over. Yes, he rolled from his back to his front. He was so surprised and shocked that he let out a yell. I rolled him back over, and he just rolled right back on his tummy. I left him there for a moment, but he would have nothing of it.
And still… yes there is more… he wasn’t even going to leave his day alone! He and I were playing together, and I was blowing raspberries onto his tummy and giving him a little lift into the air. He had a great smile on his face. Then suddenly I lifted him up and down, and he looked at me and laughed out loud for the first time!! A real laugh!! Again it startled him so much he wasn’t sure what to make of it. He decided that was enough laughing and hasn’t made a peep yet.
Oh what a sweet boy I have!! I just don't like the fact that now I only get four hours a day with him before he's going off to bed, and only 20 minutes in the morning when we have our a.m. bottle together. Please note he gets the bottle, I just get to snuggle with him. :)
Monday came all too soon for mama. It was the day that I started back at work. This is a good thing because now I am getting paid again (I ran out of my vacation/sick time). So I’m back at work doing my thing. It went well at first, and I can make it generally through half a day before I start missing him so much. Honestly if I could make this same money and work part-time, I would love that. I like being out of the house and talking to people, and yet I also like being with my little bug. I try to keep the phone call down to once a day to my mom.
The first day I called and she picked up he was crying in the background. This started me crying at my desk. I wanted to be there and hug him and have him crying in my ear in person!
Wednesday didn’t come soon enough. What was Wednesday? His cardiology appointment, and the day I took off from work. Usually we leave the house before 8am and get home about 1pm. It’s a long day, so I thought I would just take the remainder of the day off to be with him.
The cardiologist went well. He was weighed, measured and declared cute! I didn’t get an exact weight off of them, we were having so much trouble trying to get the bug to stretch out for his height that I forgot. He was measured twice in height, and the end result was 23 inches. The nurse felt he looked longer than that, but he wasn’t going to cooperate to find out.
After we went through that wiggly episode, we took him for the echo. He sat still for like… 12 seconds. Then he started to wiggle and get upset. He didn’t like the cold gel on him, and he didn’t like the probe pushing on him. A bottle let him keep quiet (but not still) for a few minutes. Finally they let him fall asleep on me before they did a few more scans. In the end Caleb declared he didn’t like having his belly pushed on by the person doing the echo (who is a nice lady!) and woke up to complain about it.
They followed this torture up with a blood pressure (ANGRY baby) and an EKG (he didn’t really care). Both of these looked fantastic.
His cardiologist said that everything is looking so well. What she is concerned about is that she cannot see the left part of his heart in the scans. Why not? A) Wiggly baby, B) Scar tissue on the front of his chest, C) the left side is hard to see and D) the little guy is a ‘difficult scan’ even today. What she wants to see is how the blood is flowing to the lungs. If blood to the lungs is going well, then she knows that part of his heart is going well.
The next step: A chest x-ray. So we went down to the x-ray, and we were shown on a stuffed bunny how the baby was supposed to lay for his x-rays (and asked if anyone could be pregnant—I know the answer to this is definitely no, but it’s still a scary question to someone who just had a baby!). Let me tell you, Caleb did NOT think much of this at all.
At all.
I’m sure the other parents were all a little scared at the screams that were going on. At least we know that the lungs are definitely working!!
The torture was soon finished with and we went back to our room to wait. The doctor examined the chest x-rays and then came back with her report. The bloodflow to his lungs is definitely un-even. How un-even? They can’t tell from the x-ray. What they are going to have to do is do another one, but this time with an IV with special tracers so that they can tell how much is going to each lung.
If it is 60/40ish… no problem.
If it is 80/20… no problem now, but it could be a problem when he’s an adult. She’s now looking 20-40 years down the road for him. She mentioned that she’s overly cautious and conservative, and this we know.
If things are fine: great, no problem.
If there is something that needs to be fixed, then he will need to go to the cardiac cath lab to see if there is anything that can be done about it. This test that we’ll do will be within the next few months.
To prove how well he was developing, Caleb decided to show them his stuff. He sat up, held his head up very nicely, and then rolled over. Yes, he rolled from his back to his front. He was so surprised and shocked that he let out a yell. I rolled him back over, and he just rolled right back on his tummy. I left him there for a moment, but he would have nothing of it.
And still… yes there is more… he wasn’t even going to leave his day alone! He and I were playing together, and I was blowing raspberries onto his tummy and giving him a little lift into the air. He had a great smile on his face. Then suddenly I lifted him up and down, and he looked at me and laughed out loud for the first time!! A real laugh!! Again it startled him so much he wasn’t sure what to make of it. He decided that was enough laughing and hasn’t made a peep yet.
Oh what a sweet boy I have!! I just don't like the fact that now I only get four hours a day with him before he's going off to bed, and only 20 minutes in the morning when we have our a.m. bottle together. Please note he gets the bottle, I just get to snuggle with him. :)
Monday, June 4, 2007
Friday check and another big day!
On our Friday weight check, the baby was 10lbs and 13oz. Huge! Well, in my opinion. In their opinion he still needs to bulk up. They're making a nicely chubby baby. Apparently he's still behind in his weight, even though he looks happy and chubby to me!
Today we went to our first Mariner's game. We didn't stay very long--there were some loud and obnoxious people in our row, and the baby couldn't get his little nap time in. You can imagine that didn't make him happy. So we moved!!
The baby sat and looked around, and was very interested in the lights and the people around him. He was watching a lot of what was going on. The last few days he's been very interested in his surroundings. It is like something just clicked and now he's noticing that his world is more than just a few feet in front of his face.
On Sunday we had his portraits taken. It was quite the adventure. We had to do all sorts of poses, and all kinds of contorting to get ourselves those shots. The pictures turned out fantastic. We're going to get them back in 7-10 days, and already have next month's appointment. We went in there with a coupon, but left with a ton of photos ordered. Oops.
Other than that... I'm tired, cranky, and logging off... :)
Today we went to our first Mariner's game. We didn't stay very long--there were some loud and obnoxious people in our row, and the baby couldn't get his little nap time in. You can imagine that didn't make him happy. So we moved!!
The baby sat and looked around, and was very interested in the lights and the people around him. He was watching a lot of what was going on. The last few days he's been very interested in his surroundings. It is like something just clicked and now he's noticing that his world is more than just a few feet in front of his face.
On Sunday we had his portraits taken. It was quite the adventure. We had to do all sorts of poses, and all kinds of contorting to get ourselves those shots. The pictures turned out fantastic. We're going to get them back in 7-10 days, and already have next month's appointment. We went in there with a coupon, but left with a ton of photos ordered. Oops.
Other than that... I'm tired, cranky, and logging off... :)
Wednesday, May 30, 2007
Caleb's Big Adventure
Today was a big day for the little boy! :)
He started out by waking up relatively late. He slept in until just after 10. I got him up and brought him into our bedroom. He was wearing his green striped PJs with three turtles on them that say, "One.. Two... Three... Cute as can be!" And it's true, he is cute!
Caleb sat on my arm with his feet pressed against Eric's side. Eric tickled him, and the baby laughed and smiled. They played for about twenty minutes, although when Eric's attention started to wane, the baby reminded him who was boss with a few swift kicks in the ribs. Yeah, try to play the game, will you, daddy?? Take THIS! *kick*
When he was finishing playing, I brought him downstairs and we filled up the bathtub for the first time. Normally he just gets a sponge bath or is suspended via hammock over the water in the tub. Today he's old enough and his scar is healed enough for a bath where he can sit in the water. We didn't use a lot of water, just enough for his bum to be covered and his legs to splash if he kicked. At first he was like, "OMGNO!" but then he realized the water was just fine. I did try to put him in the deeper end near the end of our bath, and he said no thanks to that one. One step at a time, I guess.
After that he had his first 100% formula bottle. He's been on fortified breast milk since he was born (26 calorie for those of you who know). Now he's taking so much volume per feed, and my supply is dwindling so I'm moving him to formula. For me, this is a big stress reliever, because it's hard to realize that you can't make enough food to feed your own child. I've gone through a lot of emotions over it, and I think finally I've come to terms with it. As for Caleb, he drank 3oz both feeds he's taken it, and doesn't seem to mind a bit.
After an afternoon nap, Grandma and I packed up the little dude and drove him to the Bellevue city park. We walked the 1/2 mile loop around the park, with the little one in the stroller. We stopped at a bench to watch the baby ducks (well, Caleb mostly kept his eyes clothes with the bright light and the wind, I don't think he noticed the ducks at all). The walk was seemingly enjoyable for him. Today was very hot--81 degrees at 6pm when we were on the walk, but very breezy.
Caleb may think the camera is part of my body... it's always pointed at him!
Now that we got home, he's having a little bef0re-bed cranky time. :) Boys!
He started out by waking up relatively late. He slept in until just after 10. I got him up and brought him into our bedroom. He was wearing his green striped PJs with three turtles on them that say, "One.. Two... Three... Cute as can be!" And it's true, he is cute!
Caleb sat on my arm with his feet pressed against Eric's side. Eric tickled him, and the baby laughed and smiled. They played for about twenty minutes, although when Eric's attention started to wane, the baby reminded him who was boss with a few swift kicks in the ribs. Yeah, try to play the game, will you, daddy?? Take THIS! *kick*
When he was finishing playing, I brought him downstairs and we filled up the bathtub for the first time. Normally he just gets a sponge bath or is suspended via hammock over the water in the tub. Today he's old enough and his scar is healed enough for a bath where he can sit in the water. We didn't use a lot of water, just enough for his bum to be covered and his legs to splash if he kicked. At first he was like, "OMGNO!" but then he realized the water was just fine. I did try to put him in the deeper end near the end of our bath, and he said no thanks to that one. One step at a time, I guess.
After that he had his first 100% formula bottle. He's been on fortified breast milk since he was born (26 calorie for those of you who know). Now he's taking so much volume per feed, and my supply is dwindling so I'm moving him to formula. For me, this is a big stress reliever, because it's hard to realize that you can't make enough food to feed your own child. I've gone through a lot of emotions over it, and I think finally I've come to terms with it. As for Caleb, he drank 3oz both feeds he's taken it, and doesn't seem to mind a bit.
After an afternoon nap, Grandma and I packed up the little dude and drove him to the Bellevue city park. We walked the 1/2 mile loop around the park, with the little one in the stroller. We stopped at a bench to watch the baby ducks (well, Caleb mostly kept his eyes clothes with the bright light and the wind, I don't think he noticed the ducks at all). The walk was seemingly enjoyable for him. Today was very hot--81 degrees at 6pm when we were on the walk, but very breezy.
Caleb may think the camera is part of my body... it's always pointed at him!
Now that we got home, he's having a little bef0re-bed cranky time. :) Boys!
Tuesday, May 29, 2007
Days days days
The days go by really quickly. We have all kinds of things to do, nearly every day!! Caleb is doing fantastic. He has his moments (like today when he didn't sleep too well last night, and then cried a lot this morning.) but overall he's coming into his own schedule.
He will sleep anywhere from 4-7 hours at night (I have no idea how to predict which he will do, there doesn't seem to be a pattern). When he wakes up he hollars and is delivered a bottle. When he's finished sleeping he'll not fall asleep after the bottle, but instead look around the room wide-eyed.
We will get up and go downstairs and have some "kick boxing" time. He has a little chair he sits in and kicks and punches at a plastic blow-up ball. When he's finished with that he'll huff and puff. When picked up he'll usually need a diaper change, followed by a short nap. Then it's time for another bottle.
Somewhere in there we usually include a bath and some smile-time. He's starting to smile and have the beginnings of a laugh. He has also mastered sticking out his tongue! (Grandma taught him this) If you're not paying enough attention to him during a diaper change, you might just look down to see that he has a huge grin and his tongue sticking out at you.
Usually near the early evening/late afternoon there is a cranky period. He's unsure what to do. If it's a VERY cranky period we turn on the vacuum cleaner and he actually calms down quite well to that sound. At 10pm/10:30ish he has his nightime bottle and hopefully falls asleep quiet happily.
Friday we have a weight check... let's see how massive he is!
He will sleep anywhere from 4-7 hours at night (I have no idea how to predict which he will do, there doesn't seem to be a pattern). When he wakes up he hollars and is delivered a bottle. When he's finished sleeping he'll not fall asleep after the bottle, but instead look around the room wide-eyed.
We will get up and go downstairs and have some "kick boxing" time. He has a little chair he sits in and kicks and punches at a plastic blow-up ball. When he's finished with that he'll huff and puff. When picked up he'll usually need a diaper change, followed by a short nap. Then it's time for another bottle.
Somewhere in there we usually include a bath and some smile-time. He's starting to smile and have the beginnings of a laugh. He has also mastered sticking out his tongue! (Grandma taught him this) If you're not paying enough attention to him during a diaper change, you might just look down to see that he has a huge grin and his tongue sticking out at you.
Usually near the early evening/late afternoon there is a cranky period. He's unsure what to do. If it's a VERY cranky period we turn on the vacuum cleaner and he actually calms down quite well to that sound. At 10pm/10:30ish he has his nightime bottle and hopefully falls asleep quiet happily.
Friday we have a weight check... let's see how massive he is!
Saturday, May 19, 2007
Friday appt post script
Hmm... dunno how to edit things and it's too late to try to figure it out. :)
Just wanted to say he's right on track, right in the middle as far as growth goes. Just a bit either above or below 50% in all categories of height, weight and head size. Not so bad for a baby that had such a rough start!
Just wanted to say he's right on track, right in the middle as far as growth goes. Just a bit either above or below 50% in all categories of height, weight and head size. Not so bad for a baby that had such a rough start!
Friday appointment
So I'm a little late...
We went to see our regular pediatrician on Friday. Just your normal two week check-up. The little guy is weighing 9.5lbs according to their scale. He was more than that the Friday before, so they just claimed the difference in scales. All I know is that he's big!
He's doing great as far as the regular check up goes. He is a little advanced in the fact that he will smile at us. He is a little behind in the way that he hasn't started to reach for anything in front of him yet. Well, today I swear he reached for something, so we'll call it even. hehe He does track things visually and reacts to noises.
They checked his thyroid levels and gave him 4 shots and an oral vaccine. They tried drawing blood out of both arms, so each limb is poked full of holes. :( He was NOT happy at all about this development. He was having a good time at the doctors, and yet this ruined his mood. I don't know if I've ever heard him scream like that. Luckily when I was able to hold him he calmed down. But he was so instantly tired that he passed out in my arms. He slept until about 4am with little waking inbetween.
He'll have another weight check in 2 weeks, and another appointment in 4 months. We're not having as many appointments and doctor visits now. It makes me wonder if he'll be so "good" next time. hehe He'll not be used to getting poked and proded.
We're starting to get out in the world a little more. We can go for walks and to the store and to friends' houses now. Not for long, we are not pushing it, but he's still out there in the world looking around. There are so many things to show him, so many things to learn!!
We'll get started on all that... after we try to get some sleep tonight...
We went to see our regular pediatrician on Friday. Just your normal two week check-up. The little guy is weighing 9.5lbs according to their scale. He was more than that the Friday before, so they just claimed the difference in scales. All I know is that he's big!
He's doing great as far as the regular check up goes. He is a little advanced in the fact that he will smile at us. He is a little behind in the way that he hasn't started to reach for anything in front of him yet. Well, today I swear he reached for something, so we'll call it even. hehe He does track things visually and reacts to noises.
They checked his thyroid levels and gave him 4 shots and an oral vaccine. They tried drawing blood out of both arms, so each limb is poked full of holes. :( He was NOT happy at all about this development. He was having a good time at the doctors, and yet this ruined his mood. I don't know if I've ever heard him scream like that. Luckily when I was able to hold him he calmed down. But he was so instantly tired that he passed out in my arms. He slept until about 4am with little waking inbetween.
He'll have another weight check in 2 weeks, and another appointment in 4 months. We're not having as many appointments and doctor visits now. It makes me wonder if he'll be so "good" next time. hehe He'll not be used to getting poked and proded.
We're starting to get out in the world a little more. We can go for walks and to the store and to friends' houses now. Not for long, we are not pushing it, but he's still out there in the world looking around. There are so many things to show him, so many things to learn!!
We'll get started on all that... after we try to get some sleep tonight...
Wednesday, May 16, 2007
MY doctors appointment
I had my 6 week checkup today. I am doing just fine, thanks for asking.
I am having a little trouble with the old emotions as of late, but as my doctor pointed out I am in the "high risk" category for post partum depression. Oy.
Um... what else? I went shopping at Target and bought the baby a bunch of stuff.
I adore him. I absolutely adore him!!!!!!!!!!!!
He is beginning to like me now. hehe That sounds silly, but he's starting to bond with me as the primary caregiver. He is more likely to respond to my attentions to him than before, although he still can say, "Bugger off!" and just scream in my ear if he feels like it.
Friday is his next appointment... he's nearly 10lbs as of last Friday, I wonder how much weight he's gained in a week. I think they might be taking him off the fortified food soon as he's packing the pounds on quite nicely. He is taking a lot of volume at this point.
Ooh, must go make another bottle. He's starting to wiggle himself awake.
I am having a little trouble with the old emotions as of late, but as my doctor pointed out I am in the "high risk" category for post partum depression. Oy.
Um... what else? I went shopping at Target and bought the baby a bunch of stuff.
I adore him. I absolutely adore him!!!!!!!!!!!!
He is beginning to like me now. hehe That sounds silly, but he's starting to bond with me as the primary caregiver. He is more likely to respond to my attentions to him than before, although he still can say, "Bugger off!" and just scream in my ear if he feels like it.
Friday is his next appointment... he's nearly 10lbs as of last Friday, I wonder how much weight he's gained in a week. I think they might be taking him off the fortified food soon as he's packing the pounds on quite nicely. He is taking a lot of volume at this point.
Ooh, must go make another bottle. He's starting to wiggle himself awake.
Friday, May 11, 2007
Myologist? No Urologist!
So it's getting harder to come up with boring titles, and nearly impossible to come up with witty ones. Therefore you get horridly bad ones.
We visited the baby's urologist today. Don't ask me to pronounce her name because I cannot. Basically what she said is the same thing they said before. He as a little tad bit of kidney reflux (urine going from the bladder to the kidneys instead of the other way around). So in order to prevent infection he's on antibiotics for the next several months.
At about 3 months they'll want to do another ultrasound. She says that he'll just grow out of this. It is hereditary in some sort, so either Eric or I probably had this, but never knew about it. We just have to watch out for bladder/kidney infections.
Too many kidney infections can lead to high blood pressure, and let's face it, he doesn't need that.
Other than that, the appointment left me wondering why I left the house before 7am to get to it. Caleb was apparently wondering as well as he urinated all over their exam table to show them that he did, indeed, have excellent kidney function.
We visited the baby's urologist today. Don't ask me to pronounce her name because I cannot. Basically what she said is the same thing they said before. He as a little tad bit of kidney reflux (urine going from the bladder to the kidneys instead of the other way around). So in order to prevent infection he's on antibiotics for the next several months.
At about 3 months they'll want to do another ultrasound. She says that he'll just grow out of this. It is hereditary in some sort, so either Eric or I probably had this, but never knew about it. We just have to watch out for bladder/kidney infections.
Too many kidney infections can lead to high blood pressure, and let's face it, he doesn't need that.
Other than that, the appointment left me wondering why I left the house before 7am to get to it. Caleb was apparently wondering as well as he urinated all over their exam table to show them that he did, indeed, have excellent kidney function.
Whoa... it's *how* much??
Ok... just received one preliminary statement from Children's.
This is just part of his care there, this doesn't include anything from Evergreen or any prenatal stuff.
As of May 4, my current account balance: 249,576.60
Ooh. How about that raise??
Well, if we're still paying this off when he's 18, it will be well worth it. Not only that, but by then he can get a job and help out! LOL
This is just part of his care there, this doesn't include anything from Evergreen or any prenatal stuff.
As of May 4, my current account balance: 249,576.60
Ooh. How about that raise??
Well, if we're still paying this off when he's 18, it will be well worth it. Not only that, but by then he can get a job and help out! LOL
Wednesday, May 9, 2007
Heart Doctor Visit
We saw our cardiologist today! How funny that my 1 month old baby has a cardiologist. But that he does. I love his cardiologist. She is so amazing and bright. She's the same age as me, so it's kinda strange to look at what life paths people take. I try to organize a party for 200 people on board a cruise ship--she saves baby's lives. Her name is Meg and she's a lot of fun and just excited to be helping people. :) (In fact, one of her friends is the baby's pediatrician--they remind me a lot of each other!)
ANYHOW... we started the day with a little surprise. He was going back to sleep at 6am. He doesn't do that. Usually he lets me get to bed and then "WAH!" But today, since I needed to be up, he thought he would go to sleep. We got him into the car and off to the doctor's. He doesn't like the car. Most babies love the car, mine will only tolerate it if we're on the freeway, otherwise he says: "WAH!"
When we got to the doctor, I had to visit the restroom to unload the 40lb diaper that he made for me while yelling, then we went to get weighed and measured. I didn't see how long he was, but this kid is now just over 9lbs!!! This was followed by our echo. The ultrasound went really well, with one pause in the middle to heat up his bottle when he got too fussy. It was during his breakfast time and he wanted some. Then, for fun, he loaded his pants once again.
His O2 levels were sitting around 95/96, which is normal because after he got his tummy full and emptied it, he fell asleep. Zzzzz. They poked, proded and did whatever they could to him and he just took it all so well!
The heart looks and sounds great, and I felt a burst of happiness when my cardiologist used the statement, "When they removed his heart disease..." Oh how wonderful! There is no sign of the turbulent blood flow or the stiff chamber, so those issues worked themselves out.
What they are looking at now: When they do the switch, the little things (such as the connections to the lungs) that were attached to the arteries are now stretched a little further because of the new placement. They just are watching to make sure that everything stays in a good spot and there are no issues from the stretching. But all looks well at this point.
As my cardiologist said, "He's so freakin' cute!"
We need to go back: next month.
They took him off one dose of his Lasix (this drug that makes him have to weeeeeee a lot). We're keeping everything else the same now, as they don't like to muck with too much at a time. Which is fine with me. I would like him off more of the drugs, but I'll take what I can get.
After the doctor's, we went and visited my work. :) It was so great to see everyone. Caleb announced he was there with a "WAH!" and after he gathered everyone around him he promptly went to sleep. He's heavy to carry around now, the little porker! :) My arm is tired!! But he was introduced to most everyone, but we kept it short. It was getting close to lunch time and he's still "new."
Speaking of lunch time, I need to get working on that!
ANYHOW... we started the day with a little surprise. He was going back to sleep at 6am. He doesn't do that. Usually he lets me get to bed and then "WAH!" But today, since I needed to be up, he thought he would go to sleep. We got him into the car and off to the doctor's. He doesn't like the car. Most babies love the car, mine will only tolerate it if we're on the freeway, otherwise he says: "WAH!"
When we got to the doctor, I had to visit the restroom to unload the 40lb diaper that he made for me while yelling, then we went to get weighed and measured. I didn't see how long he was, but this kid is now just over 9lbs!!! This was followed by our echo. The ultrasound went really well, with one pause in the middle to heat up his bottle when he got too fussy. It was during his breakfast time and he wanted some. Then, for fun, he loaded his pants once again.
His O2 levels were sitting around 95/96, which is normal because after he got his tummy full and emptied it, he fell asleep. Zzzzz. They poked, proded and did whatever they could to him and he just took it all so well!
The heart looks and sounds great, and I felt a burst of happiness when my cardiologist used the statement, "When they removed his heart disease..." Oh how wonderful! There is no sign of the turbulent blood flow or the stiff chamber, so those issues worked themselves out.
What they are looking at now: When they do the switch, the little things (such as the connections to the lungs) that were attached to the arteries are now stretched a little further because of the new placement. They just are watching to make sure that everything stays in a good spot and there are no issues from the stretching. But all looks well at this point.
As my cardiologist said, "He's so freakin' cute!"
We need to go back: next month.
They took him off one dose of his Lasix (this drug that makes him have to weeeeeee a lot). We're keeping everything else the same now, as they don't like to muck with too much at a time. Which is fine with me. I would like him off more of the drugs, but I'll take what I can get.
After the doctor's, we went and visited my work. :) It was so great to see everyone. Caleb announced he was there with a "WAH!" and after he gathered everyone around him he promptly went to sleep. He's heavy to carry around now, the little porker! :) My arm is tired!! But he was introduced to most everyone, but we kept it short. It was getting close to lunch time and he's still "new."
Speaking of lunch time, I need to get working on that!
Monday, May 7, 2007
"Normal" Baby
Caleb is starting to feel like a "normal" baby. I put that in quotes, because I've noticed there doesn't seem to be such thing as a "normal" baby. Sitting around Children's Hospital you see that there are all kinds of definitions of normal, and as one of the nurses said to me, "if you try to define normal, you'll just go crazy, you just have to define trends." He was telling me that it was "normal" for a baby's heart rate to be in the upper 150s, but since Caleb's was normally sitting in the lower 140s it was a sign that something was up with him.
Anyhow... he's learned a few things. Because of the way that we're burping him (the normal over-the-shoulder route is out with his chest hurting) he's starting to learn to hold his head up very well. He held it up for several minutes on his own today--a bit wobbly still, but up. He's able to pick it up and move it in order to look around.
He has learned to kick. I think this started when he's just been angry. He gets red, he gets mad, he flails his arms and legs about in anger. But now, he'll sit in his rocking chair in non-rocker mode and happily kick his feet. He uses this method to scootch himself further down into the chair.
Rolling is a new sport for him as well. Roll to the left, roll to the right--he can do both. He used to sleep on his side, but now he likes to roll at least once during his sleep. When we're trying to change his diaper--"roll." Unfortunatly that also usually means that he might be gearing up to do something else on his changing table.
Last night I got up to "fix" the screaming that was coming from his room. I was shocked to see that my son had rolled onto his back, moved half way down the bed, removed his hat and had his nightgown pulled up to his tummy, ready for a diaper change. At first I thought my mom had been in there and maybe just stepped out to warm up a bottle, but no. No... he's just that sneaky, that son of mine. :)
He has been feeling a bit better the past few days, but still has some tummy trouble. We are able to get some good play time in, though. He's not just yelling hours on end, which is a nice switch. I will still be glad when he's off all his medications and his tummy can adjust.
What's in the future? Well, as far as advancement I'd say he's going to be ready to laugh soon. He may also discover his feet. He looks towards sound, but has yet to reach out for things put in his line of sight, so we're heading there.
In terms of appointments, we have to follow up with Urology on... oh, right, I haven't made that appointment yet. His heart doctor is Wednesday, his regular pediatrician is next Friday. My follow up appointment is the next Wednesday.
Hopefully we'll settle down so we're not going to the doctor every few minutes! :) That will be nice.
Heck, that might even be "normal."
Anyhow... he's learned a few things. Because of the way that we're burping him (the normal over-the-shoulder route is out with his chest hurting) he's starting to learn to hold his head up very well. He held it up for several minutes on his own today--a bit wobbly still, but up. He's able to pick it up and move it in order to look around.
He has learned to kick. I think this started when he's just been angry. He gets red, he gets mad, he flails his arms and legs about in anger. But now, he'll sit in his rocking chair in non-rocker mode and happily kick his feet. He uses this method to scootch himself further down into the chair.
Rolling is a new sport for him as well. Roll to the left, roll to the right--he can do both. He used to sleep on his side, but now he likes to roll at least once during his sleep. When we're trying to change his diaper--"roll." Unfortunatly that also usually means that he might be gearing up to do something else on his changing table.
Last night I got up to "fix" the screaming that was coming from his room. I was shocked to see that my son had rolled onto his back, moved half way down the bed, removed his hat and had his nightgown pulled up to his tummy, ready for a diaper change. At first I thought my mom had been in there and maybe just stepped out to warm up a bottle, but no. No... he's just that sneaky, that son of mine. :)
He has been feeling a bit better the past few days, but still has some tummy trouble. We are able to get some good play time in, though. He's not just yelling hours on end, which is a nice switch. I will still be glad when he's off all his medications and his tummy can adjust.
What's in the future? Well, as far as advancement I'd say he's going to be ready to laugh soon. He may also discover his feet. He looks towards sound, but has yet to reach out for things put in his line of sight, so we're heading there.
In terms of appointments, we have to follow up with Urology on... oh, right, I haven't made that appointment yet. His heart doctor is Wednesday, his regular pediatrician is next Friday. My follow up appointment is the next Wednesday.
Hopefully we'll settle down so we're not going to the doctor every few minutes! :) That will be nice.
Heck, that might even be "normal."
Sunday, May 6, 2007
"Wah!"
"Wah!"
The baby has decided he has taken things in stride for just too long. He has decided that life is giving him some sort of a raw deal, and he is going to tell EVERYONE about it. :) I'm not sure if he's bored, his tummy is bothering him, he's reliving dreams of his surgery, he just thinks his clothes should be green instead of blue.... whatever it is, he's going to tell everyone in the house, the apartment complex and probably even the entire block.
Several days in a row we have been wondering where the sweet, quiet, thoughtful baby has run away to. Sure he has his moments still, but most of the time he's been replaced by Mr. CRANKASAURUS REX! Oy...
Last night he did sleep for *four hours*. Total. If you add them all up. Usually he waits until I'm just asleep again before he wails. So really, I did get *some* sleep. And he was kind enough to let me pump as well.
And now... he needs his pants changed, and he's letting everyone know. So, off to get the poo out of the pantaloons!
The baby has decided he has taken things in stride for just too long. He has decided that life is giving him some sort of a raw deal, and he is going to tell EVERYONE about it. :) I'm not sure if he's bored, his tummy is bothering him, he's reliving dreams of his surgery, he just thinks his clothes should be green instead of blue.... whatever it is, he's going to tell everyone in the house, the apartment complex and probably even the entire block.
Several days in a row we have been wondering where the sweet, quiet, thoughtful baby has run away to. Sure he has his moments still, but most of the time he's been replaced by Mr. CRANKASAURUS REX! Oy...
Last night he did sleep for *four hours*. Total. If you add them all up. Usually he waits until I'm just asleep again before he wails. So really, I did get *some* sleep. And he was kind enough to let me pump as well.
And now... he needs his pants changed, and he's letting everyone know. So, off to get the poo out of the pantaloons!
Thursday, May 3, 2007
Doctor's Visit
We had an appointment with Children's Heart Clinic today at 1pm. I wasn't sure how this was going to go as the baby was due to eat at 1:30, and he has been particularly grumpy the last few days. His tummy has been bugging him very badly--we're just watching this to see if we can have a pattern. We arrived, barely on time.
Everything about babies is rushing, rushing, rushing--and you're always behind!!
On the way the baby had a fit in the car, but I couldn't pull over because of my spot on the freeway. He stopped crying by the time I got a chance to pull off. Oy... he had "crumpled" forward and was unable to get himself sitting back up, but he fell asleep like that after a bit. :( Poor baby! But he was sleeping fine.
Once we got to the hospital, we were told our first stop would be a chest x-ray. The sleeping baby was awaken, put in various positions, and taken pictures of. The sleeping baby was NOT sleeping any more. Wah... ehh... WAAAAHHH!!!!! But, he took it rather well and was comforted easily. I wrapped him in a blankie and we were on to our next stop: more torture.
EKG, O2 lvl check, poking, proding, temperature, blood pressure, stitch removal. The baby said, "Wah... ehh... ehhh... eh..." and then seemed to say, "Whatever." I was hoping he wasn't being so quiet and good because he was thinking, "Finally, I'm home again!" But he went through the whole appointment without errupting too badly. There were moments, of course, but that's to be expected.
His O2 lvl in his blood: 100%. YAYAYAYAYAYAYAY!
His EKG: "Beautiful." YAYAYAYAYAY!
His chest x-ray: "Nice." YAYA... you get the picture...
His weight: "Great!"
He is now 8lbs and 5oz. They were *very* impressed with his weight gain. Heart babies are generally smaller to grow if there are issues, so this shows he is taking enough calories to heal and enough to grow as well. They liked this so much that they said that he was able to take 1-2 feedings of straight breast milk if we wanted. They thought that in a while he might be off fortified milk altogether. Wow.
The nurse practitioner was so impressed with him, she said she couldn't believe how fantastic he was doing. I think this is because of all the love and support that he's been getting from you all--all the prayers and hopes and meditations and good thoughts are all getting to the right spot. The baby is listening and he's putting all that great energy to fantastic use! Way to go, kiddo!
And, yeah, of *course* I have time to write in the blog. For those of you that do not know, I am about to spill the secret of motherhood: Maternity leave is all about sitting on the couch in your underwear eating bonbons... kids practically take care of themselves! All you have to do is start them up in the morning and they just run all day until it's time to put them away at night. Soap operas, bad chick-flicks and ice cream--and when you return to work all that weight you gain can be explained by "I haven't lost the baby weight yet"--another secret, that all falls right off when the baby pops out!
Shhh.... don't tell anyone...
Everything about babies is rushing, rushing, rushing--and you're always behind!!
On the way the baby had a fit in the car, but I couldn't pull over because of my spot on the freeway. He stopped crying by the time I got a chance to pull off. Oy... he had "crumpled" forward and was unable to get himself sitting back up, but he fell asleep like that after a bit. :( Poor baby! But he was sleeping fine.
Once we got to the hospital, we were told our first stop would be a chest x-ray. The sleeping baby was awaken, put in various positions, and taken pictures of. The sleeping baby was NOT sleeping any more. Wah... ehh... WAAAAHHH!!!!! But, he took it rather well and was comforted easily. I wrapped him in a blankie and we were on to our next stop: more torture.
EKG, O2 lvl check, poking, proding, temperature, blood pressure, stitch removal. The baby said, "Wah... ehh... ehhh... eh..." and then seemed to say, "Whatever." I was hoping he wasn't being so quiet and good because he was thinking, "Finally, I'm home again!" But he went through the whole appointment without errupting too badly. There were moments, of course, but that's to be expected.
His O2 lvl in his blood: 100%. YAYAYAYAYAYAYAY!
His EKG: "Beautiful." YAYAYAYAYAY!
His chest x-ray: "Nice." YAYA... you get the picture...
His weight: "Great!"
He is now 8lbs and 5oz. They were *very* impressed with his weight gain. Heart babies are generally smaller to grow if there are issues, so this shows he is taking enough calories to heal and enough to grow as well. They liked this so much that they said that he was able to take 1-2 feedings of straight breast milk if we wanted. They thought that in a while he might be off fortified milk altogether. Wow.
The nurse practitioner was so impressed with him, she said she couldn't believe how fantastic he was doing. I think this is because of all the love and support that he's been getting from you all--all the prayers and hopes and meditations and good thoughts are all getting to the right spot. The baby is listening and he's putting all that great energy to fantastic use! Way to go, kiddo!
And, yeah, of *course* I have time to write in the blog. For those of you that do not know, I am about to spill the secret of motherhood: Maternity leave is all about sitting on the couch in your underwear eating bonbons... kids practically take care of themselves! All you have to do is start them up in the morning and they just run all day until it's time to put them away at night. Soap operas, bad chick-flicks and ice cream--and when you return to work all that weight you gain can be explained by "I haven't lost the baby weight yet"--another secret, that all falls right off when the baby pops out!
Shhh.... don't tell anyone...
Sunday, April 29, 2007
I'm Hungry.
I'm hungry. I'm tired. I just showered for the first time in I dunno how long. I have a big basket of laundry that is not folded behind me, and a massive stack of laundry that needs to be done sitting in the bathroom.
I do have clean bottles, medicine droppers, gavage tubes and baby clothes.
In the hospital, I could always sneak away and do something like... pump. (For those of you who do not know, I am a cow--I pump my milk and then mix it with formula to up the calorie intake and then feed it to the baby that way). Now I have to feed the baby, which takes about 45 minutes including the feeding tube and putting him in bed afterwards. Then I need to pump, which is about 30 minutes, give or take--depends on if he lets me pump or if he wakes up and starts to yell. And that does include cleaning up all the gear. Then I check on the baby, and if all goes well, I get to sleep for 1 hour and 30 minutes....
Ok, he's hollaring. :) I must run away. Just wanted to say this is hard, but it is so worth it!
I do have clean bottles, medicine droppers, gavage tubes and baby clothes.
In the hospital, I could always sneak away and do something like... pump. (For those of you who do not know, I am a cow--I pump my milk and then mix it with formula to up the calorie intake and then feed it to the baby that way). Now I have to feed the baby, which takes about 45 minutes including the feeding tube and putting him in bed afterwards. Then I need to pump, which is about 30 minutes, give or take--depends on if he lets me pump or if he wakes up and starts to yell. And that does include cleaning up all the gear. Then I check on the baby, and if all goes well, I get to sleep for 1 hour and 30 minutes....
Ok, he's hollaring. :) I must run away. Just wanted to say this is hard, but it is so worth it!
Friday, April 27, 2007
First Dr. Appointment? Or...
So today the baby had his first doctor's appointment. Kinda. I know he's seen a lot of doctors in the past, but this time it was a regular "Well-baby" appointment with his pediatrician. She is located in Woodinville and is actually a good friend of his cardiologist. They had been emailing back and forth about the little guy, so she knew all about him.
Finding the office was a challenge. I forgot to bring the address so we stopped at the "Medical Building" and I hoped it was the right one. Yes, it was--yay! I read the board and we went up to the 3rd floor to the office. I didn't read the board correctly... "Woodinville Pediatric Dentistry" was not the same place. So back down to the bottom--it said it was on that floor, down the hall. We walked down the hall. "If you are seeing Dr. Anderson, she is located in suite 205 today." So... back up the hall and back up the elevator to floor 2. We were getting quite the tour. After the appointment, I wasn't sure if we got off on floor "1" or "L" so I chose "1." Turns out it should have been L. *grin* So we saw each floor of the building.
We found out that the baby is in the 47th percentile in weight--he is 8lbs now!! He is in the 54th percentile in height--a whopping 21" now. Head size is 51st coming in at 14 3/4 inches. They made the little dude stip. We found out his goopy eyes are normal, but she did give us eyedrops in case they kept up putting out a lot of goop. His little "foldy" ear should come back down to look like his other one--I don't know if I mentioned one ear is just stuck flat to his head and the other one looks like it was rolled up in the womb! :) It's starting to flatten at the top, but the bottom is still rolled up.
A delicate subject now... as for the snipping. Typically there is a short window to do the circumcision before it is a "surgical" event. As a newborn they do a little numbing and then a "snip." As he gets older it will require more pain medication, so that is why. The clinic we go to perform very little snippings at his age, so it will probably need to wait until he is a year old. Not a biggie at this point, I mean it's not like it's going to require extra cleaning or cause issues in the locker room. And, at the moment, I don't think he needs another poking and injury to take care of!
As a reward for joining Woodinville Peds, we received a small diaper bag, some literature, and a MASSIVE book to read. It weighs more than the baby!
What we did next was... go to Target! Yes, the baby has to learn the joy of Target. Well, either that or we were in some serious need of some diapers. We bought a wipe warmer as well, as part of his anger over the diaper changes have been the cold wipes assaulting the family jewels. I bought some "sensitive skin" wipes because he is quite the sensitive boy. Also I am going to try that lavender bath... I think tonight we'll have our first bath at home! Once I figure out the bathtub. Jill... it's "some assembly required," what's up with that??
Other than that, he is laying in the stroller taking a nap as the bed is all the way upstairs. :)
Finding the office was a challenge. I forgot to bring the address so we stopped at the "Medical Building" and I hoped it was the right one. Yes, it was--yay! I read the board and we went up to the 3rd floor to the office. I didn't read the board correctly... "Woodinville Pediatric Dentistry" was not the same place. So back down to the bottom--it said it was on that floor, down the hall. We walked down the hall. "If you are seeing Dr. Anderson, she is located in suite 205 today." So... back up the hall and back up the elevator to floor 2. We were getting quite the tour. After the appointment, I wasn't sure if we got off on floor "1" or "L" so I chose "1." Turns out it should have been L. *grin* So we saw each floor of the building.
We found out that the baby is in the 47th percentile in weight--he is 8lbs now!! He is in the 54th percentile in height--a whopping 21" now. Head size is 51st coming in at 14 3/4 inches. They made the little dude stip. We found out his goopy eyes are normal, but she did give us eyedrops in case they kept up putting out a lot of goop. His little "foldy" ear should come back down to look like his other one--I don't know if I mentioned one ear is just stuck flat to his head and the other one looks like it was rolled up in the womb! :) It's starting to flatten at the top, but the bottom is still rolled up.
A delicate subject now... as for the snipping. Typically there is a short window to do the circumcision before it is a "surgical" event. As a newborn they do a little numbing and then a "snip." As he gets older it will require more pain medication, so that is why. The clinic we go to perform very little snippings at his age, so it will probably need to wait until he is a year old. Not a biggie at this point, I mean it's not like it's going to require extra cleaning or cause issues in the locker room. And, at the moment, I don't think he needs another poking and injury to take care of!
As a reward for joining Woodinville Peds, we received a small diaper bag, some literature, and a MASSIVE book to read. It weighs more than the baby!
What we did next was... go to Target! Yes, the baby has to learn the joy of Target. Well, either that or we were in some serious need of some diapers. We bought a wipe warmer as well, as part of his anger over the diaper changes have been the cold wipes assaulting the family jewels. I bought some "sensitive skin" wipes because he is quite the sensitive boy. Also I am going to try that lavender bath... I think tonight we'll have our first bath at home! Once I figure out the bathtub. Jill... it's "some assembly required," what's up with that??
Other than that, he is laying in the stroller taking a nap as the bed is all the way upstairs. :)
Thursday, April 26, 2007
Baby baby baby baby baby
So... got to the hospital again late this morning. Late being 8:45am instead of as early as I was hoping. What happened this time?? Freakin' Lake City Way. 520 looked like its usual icky self, so I thought I'd drive around the lake. Lake City Way was a bad idea to begin with, and then I found myself saying, "Is this the turn? Nooo... it's the next turn." No next turn... it leads right on the freeway, so I had to sit on I-5 this morning as well. LOL Crud.
Eventually got to the hospital, hoping that there wasn't anything odd that popped up over night.
Well, something odd popped up, but nothing bad. The baby was taking all 60ccs (2 oz) of the 26 calorie formula with no problem. I mean, all by mouth! So I fed him this morning, and again, he took it all by mouth. :) We were loaded up with many supplies (as my mom said, it looks like we took home the whole hospital) and I'm supposed to get a call from Children's Home Care later today for delivery of more feeding tube stuff--just in case he needs it.
We got home, and I changed two diapers already and fed him (all 60 by mouth!) He is currently sitting upstairs in bed with daddy. And daddy took to heart the reception committee position. He has been cleaning all morning getting ready for the baby to come home... all over the house! hehe Good daddy... it isn't all that pretty since I haven't been home much in the last 22 days.
But now I'm home, I have a baby, and all is OMG HOW COOL!!!!!!!!!!!!!!!!!!! Of course, about 3:27am I'll be asking for the nurse!! :D
Updates, updates... will come. :)
Eventually got to the hospital, hoping that there wasn't anything odd that popped up over night.
Well, something odd popped up, but nothing bad. The baby was taking all 60ccs (2 oz) of the 26 calorie formula with no problem. I mean, all by mouth! So I fed him this morning, and again, he took it all by mouth. :) We were loaded up with many supplies (as my mom said, it looks like we took home the whole hospital) and I'm supposed to get a call from Children's Home Care later today for delivery of more feeding tube stuff--just in case he needs it.
We got home, and I changed two diapers already and fed him (all 60 by mouth!) He is currently sitting upstairs in bed with daddy. And daddy took to heart the reception committee position. He has been cleaning all morning getting ready for the baby to come home... all over the house! hehe Good daddy... it isn't all that pretty since I haven't been home much in the last 22 days.
But now I'm home, I have a baby, and all is OMG HOW COOL!!!!!!!!!!!!!!!!!!! Of course, about 3:27am I'll be asking for the nurse!! :D
Updates, updates... will come. :)
Wednesday, April 25, 2007
Feeding Tubes, Blood Clots and IVs, Oh my!
This morning I was running a little late, and I admit it was because of my reluctance to go to the hospital. I was up in time to get over the bridge before traffic started, but instead I puttered around the house and went back to bed for a little bit. I think Eric was a little annoyed at this because he likes to have the bed to himself in the morning. :)
In any case, I arrived just before 11. I was walking into the room as the ultrasound tech was walking out. "How is the clot?" I asked. I wasn't going to ask--usually they tell you that "the doctor will look at it and contact you later in the day" but he stopped when he saw me. "That's the funny thing with clots of that size," he said. "They're so tiny and you can't really tell if it's just part of the healing or if it's a clot, and it's there from one angle and then not from another... but I'm sure you want to hear this from a doctor."
Eh? Really? No clot! Presently my little baby was hollaring his head off inside the room, so I went in to see him. The head nurse and her assistant were busy poking and proding the baby. He was busy tossing his head back and screaming, kicking, and turning red with severe anger. Not a happy little bug indeed. They were busy taking him off the heparin and... unplugging him from all the monitors.
"So... does this mean he gets to go home today?"
Bah. Of course the answer was no. They're still disappointed with his feeds. They would like him to be taking more, and he's refusng to take the whole bottles. Why? Well, generally he gets tired (it's very common with "cardiac kids"). They wanted to keep him in the hospital until his feeds were up. Mom wants to take him home. The solution: The NG tube. The feeding tube.
The baby will continue to feed by mouth, but anything that is leftover we will give him via feeding tube. Typically he is taking about 5-25ml by tube out of 60, so not a lot. It's important that he gets all this liquid (which is fortified with extra calories) because he needs more than the average baby his size. He needs a lot of calories just to grow, but he also needs extra to help him heal.
I learned how to insert his feeding tube (oh wow he was yelling at me--but that actually helps you insert the tube), how to check the placement, feed him and flush the tube afterwards. We will get all the supplies for this. Hopefully he will need this for less than a week.
So he does have a feeding tube now. But... but...
THE BABY WILL BE COMING HOME TOMORROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Eric, who has managed to come to the hospital about 5 times, has elected to be on "reception duty." This will include vacuuming the upstairs where the baby's room is and getting anything else ready that we forgot at the last minute. I will be on baby retreval duty, which includes getting up before the fricken crack of dawn in order to sit in rush hour traffic. :)
But, on the way back home... I will not be leaving my little baby behind.
Of course, this all depends on his night... and how peeved I made the head nurse after telling her off yesterday. Please note that is probably why I do not have my baby sitting next to me today... well, I won't comment on that one.
I'll have to update everyone tomorrow.... :D
In any case, I arrived just before 11. I was walking into the room as the ultrasound tech was walking out. "How is the clot?" I asked. I wasn't going to ask--usually they tell you that "the doctor will look at it and contact you later in the day" but he stopped when he saw me. "That's the funny thing with clots of that size," he said. "They're so tiny and you can't really tell if it's just part of the healing or if it's a clot, and it's there from one angle and then not from another... but I'm sure you want to hear this from a doctor."
Eh? Really? No clot! Presently my little baby was hollaring his head off inside the room, so I went in to see him. The head nurse and her assistant were busy poking and proding the baby. He was busy tossing his head back and screaming, kicking, and turning red with severe anger. Not a happy little bug indeed. They were busy taking him off the heparin and... unplugging him from all the monitors.
"So... does this mean he gets to go home today?"
Bah. Of course the answer was no. They're still disappointed with his feeds. They would like him to be taking more, and he's refusng to take the whole bottles. Why? Well, generally he gets tired (it's very common with "cardiac kids"). They wanted to keep him in the hospital until his feeds were up. Mom wants to take him home. The solution: The NG tube. The feeding tube.
The baby will continue to feed by mouth, but anything that is leftover we will give him via feeding tube. Typically he is taking about 5-25ml by tube out of 60, so not a lot. It's important that he gets all this liquid (which is fortified with extra calories) because he needs more than the average baby his size. He needs a lot of calories just to grow, but he also needs extra to help him heal.
I learned how to insert his feeding tube (oh wow he was yelling at me--but that actually helps you insert the tube), how to check the placement, feed him and flush the tube afterwards. We will get all the supplies for this. Hopefully he will need this for less than a week.
So he does have a feeding tube now. But... but...
THE BABY WILL BE COMING HOME TOMORROW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Eric, who has managed to come to the hospital about 5 times, has elected to be on "reception duty." This will include vacuuming the upstairs where the baby's room is and getting anything else ready that we forgot at the last minute. I will be on baby retreval duty, which includes getting up before the fricken crack of dawn in order to sit in rush hour traffic. :)
But, on the way back home... I will not be leaving my little baby behind.
Of course, this all depends on his night... and how peeved I made the head nurse after telling her off yesterday. Please note that is probably why I do not have my baby sitting next to me today... well, I won't comment on that one.
I'll have to update everyone tomorrow.... :D
Days on "The Floor"
So the baby moved to the floor, and I was not very happy.
It's loud, noisy, and right when we first moved it took me 20 minutes to run down a nurse. I wasn't very impressed. We had to share another room with a baby, whenever he cried, Caleb cried. Their family was busy watching television--violent tv where there was a lot of gunfire and screaming going on. Not exactly what I wanted my baby exposed to.
Caleb couldn't sleep and generally was pretty miserable. We were in the bed right next to the door. I was very upset--I actually came home and shoved the carseat in the car and was getting ready to bring him home.
Today was a little better. We were moved to the window bed because our neighbor left, and we got in a 5 yr old kid who has been thru many surgeries. He knows the drill. They were watching kid videos, which are much better at least. He's going to have surgery tomorrow, and I'm sure we'll get a new roommate.
Everyone was telling me that the baby was going home tomorrow. He had test after horrible test this morning. It was hard for me to watch during some of the tests.
Well, it was a rough morning, but the afternoon got better. He was eating better, and then the O2 came out of his nose. He was sating fine. Then, a little later, they took him off all the monitors. I had a baby that was attached to: NOTHING!!!!!!!!!!!!!!
I went to dinner, pumped, came back to the room and the baby was hooked up to all the monitors and an IV was sitting in his bed. WTF??
Well, one of the tests this morning showed a small clot in his heart. So, they're putting him on drugs to dissolve the clot, and this will delay us coming home from the hospital. :( For a few days.
I didn't take that news all that well, and still am not taking it well. I don't like this new ward, even though it's better than it was yesterday. I just want to bring the baby home. This "one more thing" stuff isn't wearing well on me, and I can't get as much rest as I was getting in the other ward, either. All together, I'm ready to bring my little love home. Ah well... another day--one more day at a time.
It's loud, noisy, and right when we first moved it took me 20 minutes to run down a nurse. I wasn't very impressed. We had to share another room with a baby, whenever he cried, Caleb cried. Their family was busy watching television--violent tv where there was a lot of gunfire and screaming going on. Not exactly what I wanted my baby exposed to.
Caleb couldn't sleep and generally was pretty miserable. We were in the bed right next to the door. I was very upset--I actually came home and shoved the carseat in the car and was getting ready to bring him home.
Today was a little better. We were moved to the window bed because our neighbor left, and we got in a 5 yr old kid who has been thru many surgeries. He knows the drill. They were watching kid videos, which are much better at least. He's going to have surgery tomorrow, and I'm sure we'll get a new roommate.
Everyone was telling me that the baby was going home tomorrow. He had test after horrible test this morning. It was hard for me to watch during some of the tests.
Well, it was a rough morning, but the afternoon got better. He was eating better, and then the O2 came out of his nose. He was sating fine. Then, a little later, they took him off all the monitors. I had a baby that was attached to: NOTHING!!!!!!!!!!!!!!
I went to dinner, pumped, came back to the room and the baby was hooked up to all the monitors and an IV was sitting in his bed. WTF??
Well, one of the tests this morning showed a small clot in his heart. So, they're putting him on drugs to dissolve the clot, and this will delay us coming home from the hospital. :( For a few days.
I didn't take that news all that well, and still am not taking it well. I don't like this new ward, even though it's better than it was yesterday. I just want to bring the baby home. This "one more thing" stuff isn't wearing well on me, and I can't get as much rest as I was getting in the other ward, either. All together, I'm ready to bring my little love home. Ah well... another day--one more day at a time.
Sunday, April 22, 2007
We're doing what?!
I arrived today to hear that they were trying to move the baby to the floor (not the actual floor, mind you, but the regular wards). They were trying to find an open bed with enough nursing staff. Well, I panicked like any good mother would. The nurse gave me a packet to ease my fears.
Yeah right. But he didn't move today, although he is scheduled to move to the floor tomorrow. What this means for him: He will have a nurse or a student nurse, and her patient ratio will be 1:3 all the way to 1:6 instead of his current 1:2. However, he will officially be on the road to coming home. He will lose his solo room, and he will not necesarily be paired with an infant--his roommate could be anyone. So you can see my excitement and my worries.
Tomorrow I will see what the deal is.
I got to hold him a lot today! :) He is so sweet and so much looking like his old self. He is wearing clothes now. He got rid of the central line in his crotch and instead has received an IV in his foot. He was taking liquids in it, but they stopped those and decided to put him on breastmilk for his only liquids.
The baby's tummy is still "sleepy" from surgery, though, and he's having some tummy troubles. Big bad nasty #2's that don't feel too good, and the food isn't quite staying down the way that it should. He finished half a bottle today only to show me the same half once again in my lap. The 2nd half went down and stayed down. His system just has to "work it out" although they gave him something to help stop his puking (ironically he puked up the first dose of that with the milk).
If you've ever had surgery, then you might know this feeling. For him, he turns red, cries a little, but is still comforted by touch and a binky. His cry is still small and hoarse from the tubes he had in his throat. For this reason they think that everything is still swollen in there, and that's why he is still on O2 thru the nose.
They tried to take off the O2 thru the nose this morning, but it didn't work. His sats dropped, and he de-sated while trying to eat without that support. Again, he just needs a little time. And, please note--he dropped to the 80s, NOT the 40s!! Mostly the little bug just sits there happily at 100% nowadays. What a change!
Did I get to feed him today? Well, yeah, through a bottle. They are still monitoring his ins/outs very closely, especially with this new habit of puking. So the baby will have to wait to try anything new like breastfeeding. After all, he was having a little bit of issues today. He didn't like any of the nipples they had on site for the bottles, so they actually went down to the U-villiage and bought him a Dr. Brown's... it's a funny looking bottle, but apparently it works wonders, and he did actually eat with it.
He looks so wonderful, so much like himself. I look at him and nearly cry from being so happy (ok, so occasionally I do cry, but I'm a new mom, aren't I supposed to do that??). He actually interrupted my reading again today because he is getting so active and awake. Ooh--I don't know if I mentioned it, but we're currently reading the Chronicals of Narnia. We are done with the 1st book and 1/2 way thru the 2nd. He usually reacts to my reading with: Zzzzzzz. Kids. :)
Yeah right. But he didn't move today, although he is scheduled to move to the floor tomorrow. What this means for him: He will have a nurse or a student nurse, and her patient ratio will be 1:3 all the way to 1:6 instead of his current 1:2. However, he will officially be on the road to coming home. He will lose his solo room, and he will not necesarily be paired with an infant--his roommate could be anyone. So you can see my excitement and my worries.
Tomorrow I will see what the deal is.
I got to hold him a lot today! :) He is so sweet and so much looking like his old self. He is wearing clothes now. He got rid of the central line in his crotch and instead has received an IV in his foot. He was taking liquids in it, but they stopped those and decided to put him on breastmilk for his only liquids.
The baby's tummy is still "sleepy" from surgery, though, and he's having some tummy troubles. Big bad nasty #2's that don't feel too good, and the food isn't quite staying down the way that it should. He finished half a bottle today only to show me the same half once again in my lap. The 2nd half went down and stayed down. His system just has to "work it out" although they gave him something to help stop his puking (ironically he puked up the first dose of that with the milk).
If you've ever had surgery, then you might know this feeling. For him, he turns red, cries a little, but is still comforted by touch and a binky. His cry is still small and hoarse from the tubes he had in his throat. For this reason they think that everything is still swollen in there, and that's why he is still on O2 thru the nose.
They tried to take off the O2 thru the nose this morning, but it didn't work. His sats dropped, and he de-sated while trying to eat without that support. Again, he just needs a little time. And, please note--he dropped to the 80s, NOT the 40s!! Mostly the little bug just sits there happily at 100% nowadays. What a change!
Did I get to feed him today? Well, yeah, through a bottle. They are still monitoring his ins/outs very closely, especially with this new habit of puking. So the baby will have to wait to try anything new like breastfeeding. After all, he was having a little bit of issues today. He didn't like any of the nipples they had on site for the bottles, so they actually went down to the U-villiage and bought him a Dr. Brown's... it's a funny looking bottle, but apparently it works wonders, and he did actually eat with it.
He looks so wonderful, so much like himself. I look at him and nearly cry from being so happy (ok, so occasionally I do cry, but I'm a new mom, aren't I supposed to do that??). He actually interrupted my reading again today because he is getting so active and awake. Ooh--I don't know if I mentioned it, but we're currently reading the Chronicals of Narnia. We are done with the 1st book and 1/2 way thru the 2nd. He usually reacts to my reading with: Zzzzzzz. Kids. :)
Saturday, April 21, 2007
Feeding tube? Bah on your feeding tube!
So... I arrived in the morning to find that my little one was dressed in jammies. Yes, that's right--they gave him clothes again! He was down to three swirling lines on the monitors. The big IV on his arm was gone.
The IV ran away when it couldn't be flushed. The clothes came when the nurse decided that he no longer needed a warmer. Later in the morning a crib showed up and he was installed in a new one--but NOT BEFORE I GOT TO HOLD HIM!!!!
Yes, I got to hold my sweet little baby once again!! I didn't want to let him go...
But I had to go get him some lunch. So I was packing up my gear to go pump, and something the nurse said suddenly struck me funny. He ate 1 oz of milk earlier and 1/2 oz the last time. I looked at the baby. There was no feeding tube. He was taking milk through the bottle!! They decided to skip the feeding tube unless he wasn't going to eat enough. I was shocked. The nurse said that he wouldn't eat too much because he's still on the fats and lipids so he wouldn't be too hungry, but my little one was eating again!
The nurse asked me if I had the chance to nurse him yet. I said no, and she said that we might try that tomorrow depending on how he is doing. Oh my... really?? She said that we're now getting ready to go "to the floor." And you know what that means? We're on our way to bringing the little one home!
He was awake for several hours today, just kind of hanging out and looking around. He's so quiet and watchful. The nurse messed with him several times today and the most he did to her was mess his face up and give her a "Ehhhh." He's feeling so much better--he didn't feel the need to yell at her, even when she took his blood pressure 3xs in a row!
He's looking so much more like himself, and his rash is pretty much gone. He's amazing. I can't wait until tomorrow when I get to hold him again!
The IV ran away when it couldn't be flushed. The clothes came when the nurse decided that he no longer needed a warmer. Later in the morning a crib showed up and he was installed in a new one--but NOT BEFORE I GOT TO HOLD HIM!!!!
Yes, I got to hold my sweet little baby once again!! I didn't want to let him go...
But I had to go get him some lunch. So I was packing up my gear to go pump, and something the nurse said suddenly struck me funny. He ate 1 oz of milk earlier and 1/2 oz the last time. I looked at the baby. There was no feeding tube. He was taking milk through the bottle!! They decided to skip the feeding tube unless he wasn't going to eat enough. I was shocked. The nurse said that he wouldn't eat too much because he's still on the fats and lipids so he wouldn't be too hungry, but my little one was eating again!
The nurse asked me if I had the chance to nurse him yet. I said no, and she said that we might try that tomorrow depending on how he is doing. Oh my... really?? She said that we're now getting ready to go "to the floor." And you know what that means? We're on our way to bringing the little one home!
He was awake for several hours today, just kind of hanging out and looking around. He's so quiet and watchful. The nurse messed with him several times today and the most he did to her was mess his face up and give her a "Ehhhh." He's feeling so much better--he didn't feel the need to yell at her, even when she took his blood pressure 3xs in a row!
He's looking so much more like himself, and his rash is pretty much gone. He's amazing. I can't wait until tomorrow when I get to hold him again!
Friday, April 20, 2007
Fantastic Day for the little one!
Today when we arrived, Caleb already had his chest tube taken out. In its place was a gauze pad that was held in place by some tape--a new little belly button of sorts. And, as a surprise, the vent was set to CPAP. He was breathing on his own.
His spots had grown larger--the Benedryl had no effect on them. Later on in the day the dermatologists came down and pronounced that the spots were: who knows what. They couldn't figure out what the spots were. They finally decided it was probably a reaction to the antibiotics. Near the end of the day the spots had grown larger, but spread so big that they had started to fade.
After lunch, they gave me some great news... the vent was coming out! So goodbye vent, hello O2 thru the nose again! It's just a little support until his lungs get used to breathing on their own again. But, awesome job!
They put in a feeding tube and did give him a little milk by tube today, but this caused some issues. His chords in his neck are so swollen that he started to have issues breathing around the feeding tube. They noticed he was working really hard at breathing, and his O2 stats dropped--please note they only dropped to the upper 80s, not the 40s like before!! So they took out the feeding tube once more and did a little poking around to find that he did have a little need for suction.
If that didn't clear things up, they ordered some steroids to help calm things down in there.
So no feeding tube (sorry buddy) but they will try again when he is less swollen.
On his part, the baby is starting to look like himself again. He opened his eyes a few times today for a while and just looked around. I told him he just needed to rest after this big day and save his strength. He seemed to agree and slept most of the day.
He did wake up for the removal of a few of his pads--ooh he was angry. He tried to cry, but his chords are still hurting and swollen so it didn't come out much more than a lot of squeeking. He calmed down quickly. Although hiccups followed. I can't imagine that feels too well on his little chest!
But the doctors said he's not currently in pain--his heart rate and blood pressure are looking good, so they are keeping him on his current morphine levels so that his breathing doesn't become shallow.
So tonight the little one just needs to rest up, and tomorrow we'll have another day to try for the feeding tube. Good day, my sweet. :)
His spots had grown larger--the Benedryl had no effect on them. Later on in the day the dermatologists came down and pronounced that the spots were: who knows what. They couldn't figure out what the spots were. They finally decided it was probably a reaction to the antibiotics. Near the end of the day the spots had grown larger, but spread so big that they had started to fade.
After lunch, they gave me some great news... the vent was coming out! So goodbye vent, hello O2 thru the nose again! It's just a little support until his lungs get used to breathing on their own again. But, awesome job!
They put in a feeding tube and did give him a little milk by tube today, but this caused some issues. His chords in his neck are so swollen that he started to have issues breathing around the feeding tube. They noticed he was working really hard at breathing, and his O2 stats dropped--please note they only dropped to the upper 80s, not the 40s like before!! So they took out the feeding tube once more and did a little poking around to find that he did have a little need for suction.
If that didn't clear things up, they ordered some steroids to help calm things down in there.
So no feeding tube (sorry buddy) but they will try again when he is less swollen.
On his part, the baby is starting to look like himself again. He opened his eyes a few times today for a while and just looked around. I told him he just needed to rest after this big day and save his strength. He seemed to agree and slept most of the day.
He did wake up for the removal of a few of his pads--ooh he was angry. He tried to cry, but his chords are still hurting and swollen so it didn't come out much more than a lot of squeeking. He calmed down quickly. Although hiccups followed. I can't imagine that feels too well on his little chest!
But the doctors said he's not currently in pain--his heart rate and blood pressure are looking good, so they are keeping him on his current morphine levels so that his breathing doesn't become shallow.
So tonight the little one just needs to rest up, and tomorrow we'll have another day to try for the feeding tube. Good day, my sweet. :)
Thursday, April 19, 2007
Spotted Baby?
The baby had a rather uneventful day. They did turn up the vent a little during the night, but he is breathing more spontaneously. His heart rate was down to the 150s and 140s, so that is good news. His heart is getting used to the new pressure inside of his chest.
I did note that he had a few spots on him when I showed up today. By the end of the day he developed a lovely rash. They don't know what it is from--they said it looks like a medication reaction, but he has only had 1 new med in the last 3 days. They said it could be a reaction to the heater above him, because there are no spots on his back. It "blanched" (turned white when they poked it and then turned red again) so they said it wasn't acting like an infection. So they gave him some Benedryl and are keeping an eye on it.
They are thinking about taking the chest tube out tomorrow, and then backing off the vent some. If all goes well he could be off the vent on Saturday! That would be excellent. They're thinking of feeding him food either tonight or tomorrow--my milk. It will be through the feeding tube. Once he's off the vent they'll start to feed him once more via the bottle. :)
I did note that he had a few spots on him when I showed up today. By the end of the day he developed a lovely rash. They don't know what it is from--they said it looks like a medication reaction, but he has only had 1 new med in the last 3 days. They said it could be a reaction to the heater above him, because there are no spots on his back. It "blanched" (turned white when they poked it and then turned red again) so they said it wasn't acting like an infection. So they gave him some Benedryl and are keeping an eye on it.
They are thinking about taking the chest tube out tomorrow, and then backing off the vent some. If all goes well he could be off the vent on Saturday! That would be excellent. They're thinking of feeding him food either tonight or tomorrow--my milk. It will be through the feeding tube. Once he's off the vent they'll start to feed him once more via the bottle. :)
Wednesday, April 18, 2007
Closed Chest!
Today the baby had his zipper installed. We were running a bit behind because the morning brought rain and extra long traffic. Luckily the OR was running a bit behind as well. When I got to the PICU I had 10 minutes before the team came to take the baby back. He was still doing well and everyone was excited about his progress.
They took him back attached to the monitors, and once again I walked back to the beginning of the sterile area. They allowed me to give him a kiss. I tried to kiss his little head and got forehead patch and tubing instead. Well, that will change soon and I'll be able to kiss his little head.
While they were in there, they "looked at things pretty good" before closing him up. The Left Ventrical is still having a little stiffness, and they did find some sort of odd bloodflow in the atrial. The odd bloodflow was under much debate over where it was coming from, but the end result was that they decided that since all the function was fine, it was nothing to worry about.
After he came back, the baby was pretty konked out. He wasn't responding to touch or sound because of all the drugs in his system. His mother took this opportunity to play with his toes! Well, the drugs started to wear off, and the joy of toe-playing was soon taken away. The baby doesn't like his toes touched and will--despite being heavily drugged--pull away.
Near the end of the day, his heart beat started rising as he was coming further out of his fog. His eyes were starting to open, and he was trying to move. Even when he was resting his heartrate was in the upper 160s (it should be in the 140s). Later it had gotten up to about 185. They gave him some more morphine and some drugs to relax him again.
The heartrate goes up when the heart is trying to deal with the change in pressure in the closed chest. They need to give the heart time to adjust to this new, higher pressure. When there is more pressure, there is more fluid and there is a higher heartbeat. The baby also has more pain as he's waking up, which gives him a higher heartrate. So they gave him some drugs and when I left the heartrate was in the low 170s, and the drugs hadn't taken effect all the way yet.
So hopefully we'll get over this little hump in the road, and we'll get back to the business of healing. I'm sure the baby is ready to get back to it!!
They took him back attached to the monitors, and once again I walked back to the beginning of the sterile area. They allowed me to give him a kiss. I tried to kiss his little head and got forehead patch and tubing instead. Well, that will change soon and I'll be able to kiss his little head.
While they were in there, they "looked at things pretty good" before closing him up. The Left Ventrical is still having a little stiffness, and they did find some sort of odd bloodflow in the atrial. The odd bloodflow was under much debate over where it was coming from, but the end result was that they decided that since all the function was fine, it was nothing to worry about.
After he came back, the baby was pretty konked out. He wasn't responding to touch or sound because of all the drugs in his system. His mother took this opportunity to play with his toes! Well, the drugs started to wear off, and the joy of toe-playing was soon taken away. The baby doesn't like his toes touched and will--despite being heavily drugged--pull away.
Near the end of the day, his heart beat started rising as he was coming further out of his fog. His eyes were starting to open, and he was trying to move. Even when he was resting his heartrate was in the upper 160s (it should be in the 140s). Later it had gotten up to about 185. They gave him some more morphine and some drugs to relax him again.
The heartrate goes up when the heart is trying to deal with the change in pressure in the closed chest. They need to give the heart time to adjust to this new, higher pressure. When there is more pressure, there is more fluid and there is a higher heartbeat. The baby also has more pain as he's waking up, which gives him a higher heartrate. So they gave him some drugs and when I left the heartrate was in the low 170s, and the drugs hadn't taken effect all the way yet.
So hopefully we'll get over this little hump in the road, and we'll get back to the business of healing. I'm sure the baby is ready to get back to it!!
Tuesday, April 17, 2007
Tuesday Update
This morning we arrived at the hospital to find the little guy doing well. He did have his 12 hour heart setback. I guess there was a slight drop in his O2 sats, and there was some fluid that started to gather near his heart. They said they talked about what to do, but waited it out and Caleb corrected it all himself. He came back quickly. Woohoo! Good job. :)
They are all very impressed how my baby is doing. His numbers are fantastic, and he's been taking everything well. Mama is still nervous, but oh so completely happy still.
Tomorrow they will close up his chest--it is mostly closed up on its own at this point, so they know that he's ready for it. They will do this in the OR at about 11am or so. Today they started him back on the Lasix in order to get the extra fluids out of his system. That's a great sign as they said they wouldn't start that until he started to get rid of them himself. (He's not that puffy at all--his eyes look like he's been in a baby fight, but otherwise he's not too puffy!)
Their concerns: His left ventrical is still a little stiff. They said that this will just be time as it gets used to his new pressure in that area of the heart. He is doing better with the pressures as time goes on.
I was going to type something else here, but I got distracted... Hm. In any case, they're hopefully going to start backing off on the vent tomorrow. They wanted to do it tonight, but then changed their minds as they would have to turn it back up during the procedure tomorrow.
Good job, my love, keep up the good work! Our job now is just not to push ourselves, and just take every day as it comes. It's hard to see him with all the wires and lines, but they will come out one by one. Right now he's going to be eating via the tube (not milk yet), and soon he'll be taking bottles again and generally giving everyone around him heck. :)
Go Caleb! :)
They are all very impressed how my baby is doing. His numbers are fantastic, and he's been taking everything well. Mama is still nervous, but oh so completely happy still.
Tomorrow they will close up his chest--it is mostly closed up on its own at this point, so they know that he's ready for it. They will do this in the OR at about 11am or so. Today they started him back on the Lasix in order to get the extra fluids out of his system. That's a great sign as they said they wouldn't start that until he started to get rid of them himself. (He's not that puffy at all--his eyes look like he's been in a baby fight, but otherwise he's not too puffy!)
Their concerns: His left ventrical is still a little stiff. They said that this will just be time as it gets used to his new pressure in that area of the heart. He is doing better with the pressures as time goes on.
I was going to type something else here, but I got distracted... Hm. In any case, they're hopefully going to start backing off on the vent tomorrow. They wanted to do it tonight, but then changed their minds as they would have to turn it back up during the procedure tomorrow.
Good job, my love, keep up the good work! Our job now is just not to push ourselves, and just take every day as it comes. It's hard to see him with all the wires and lines, but they will come out one by one. Right now he's going to be eating via the tube (not milk yet), and soon he'll be taking bottles again and generally giving everyone around him heck. :)
Go Caleb! :)
Monday, April 16, 2007
Caleb back from Surgery
Finally! We were able to see the baby. :) Eric came down and waited for the last part. I have to say that was the most horrid wait right there. I was so excited to see him!!
When we went into the room there were 4 attendants getting him ready and checking on everything. You would not believe the wires coming out of this kid--heck, we were prepared for it and we couldn't believe how many there were. He has monitors everywhere (except his right hand). He's back out of the crib and back into the warmer now. So he's naked and laying there exposed (with a diaper covering) and yet quite comfortable.
They have him sedated, on the vent, and there are lines draining his chest--lines draining here, lines putting fluids back in there. The most dramatic of all these new additions is the large orange spot on his torso. It covers a green membrane in the center of his chest. Underneath is his open chest and his beating heart. Yes... you can see his little heart beating. Kinda creepy, kinda cool. (Please note Eric was more freaked out by the blood that was hanging from his IV pole than the open chest!)
They were going to spend the night doing various tests and adjustments. Everything he does is measured. The baby is sedated, but still can move around a little--he reacts to touch and a little to sound as well. He's on morphine, so he probably is interpreting things a little differently than normal. He was getting a echo on his heart when the surgeon came in again to peek in on him.
"How is it going?" he asked, looking over the shoulder of the tech. This may be an important time to note that we signed up Caleb for a clinical trial. After being on the heart/lung machine thyroid function drops severely for a few days. The trial is seeing if offering thyroid hormone replacement theripy for a few days after surgery will help speed recovery time. It's a 50/5o placebo controlled test. We will never know if the baby got the real thyroid drugs or not. ANYHOW... that was the reason for the echo.
During this test, they're supposed to not share information. The trial people do echos, but are not supposed to share information with the doctors. Well, I suppose it must be awfully hard to keep information from a surgeon who is standing behind you, and who is also on the board of people conducting the study.
"Wow," he said. "That heart function is very good. That's even better than in the operating room, that's fantastic. I was going home happy, and now I'm going home very happy." "And I am going home now."
Awesome. I asked the nurse what she thought about me going home. Honestly, I feel a little drunk and like I need a whole bottle of wine at the same time. (Fear not, campers, I had nothing to drink). I was so tired and so excited and so... EVERYTHING!
The nurse just told me to go home. She said that they were trying to keep Caleb quiet for the first several hours, and it's a great time for us to go home and get some rest. I wanted to play music for him and read him some chapters of our book, but it was really clear to me that it wasn't going to happen that evening until everything calmed down. And that wasn't going to happen for a long time.
"Go home, sleep, call us if you want an update," the nurse said. "He's doing just exactly as well as we could hope, he's doing beautifully."
I didn't want to leave him at the same time I wanted to go home and rest. Eric got me out the door, and I nearly turned around only ten million times. Honestly, I knew we were getting in the way. Caleb obviously just wanted to rest (he moved at anyone touching him) and he managed to get his hands in his "favorite" position (right fist by his mouth, left by his ear). The nursing staff always offers to pull up a chair for you, but they didn't offer us anything to sit on. They asked us to move more than once! :) I think we were a little in the way, but Children's does a good job of balancing parental involvement with treatment of patients.
I am so happy right now. My little baby boy is on the road to recovery! I have a million tears to cry still, and they're all happy ones. This is something I've been waiting for since November, and I just feel as if I've been lifted up 10 million feet by the news that he made it through the surgery and is doing beautifully!
I'll update again tomorrow. The surgeons mentioned that in 12-24 hours after the surgery several kids have a short decrease in heart function--that they start out great and have what seems to be a mini setback. If this happens, he said not to worry about it, it's fairly common and the function returns in nearly all the cases. So I'll... keep you updated. LOL I should macro that statement.
When we went into the room there were 4 attendants getting him ready and checking on everything. You would not believe the wires coming out of this kid--heck, we were prepared for it and we couldn't believe how many there were. He has monitors everywhere (except his right hand). He's back out of the crib and back into the warmer now. So he's naked and laying there exposed (with a diaper covering) and yet quite comfortable.
They have him sedated, on the vent, and there are lines draining his chest--lines draining here, lines putting fluids back in there. The most dramatic of all these new additions is the large orange spot on his torso. It covers a green membrane in the center of his chest. Underneath is his open chest and his beating heart. Yes... you can see his little heart beating. Kinda creepy, kinda cool. (Please note Eric was more freaked out by the blood that was hanging from his IV pole than the open chest!)
They were going to spend the night doing various tests and adjustments. Everything he does is measured. The baby is sedated, but still can move around a little--he reacts to touch and a little to sound as well. He's on morphine, so he probably is interpreting things a little differently than normal. He was getting a echo on his heart when the surgeon came in again to peek in on him.
"How is it going?" he asked, looking over the shoulder of the tech. This may be an important time to note that we signed up Caleb for a clinical trial. After being on the heart/lung machine thyroid function drops severely for a few days. The trial is seeing if offering thyroid hormone replacement theripy for a few days after surgery will help speed recovery time. It's a 50/5o placebo controlled test. We will never know if the baby got the real thyroid drugs or not. ANYHOW... that was the reason for the echo.
During this test, they're supposed to not share information. The trial people do echos, but are not supposed to share information with the doctors. Well, I suppose it must be awfully hard to keep information from a surgeon who is standing behind you, and who is also on the board of people conducting the study.
"Wow," he said. "That heart function is very good. That's even better than in the operating room, that's fantastic. I was going home happy, and now I'm going home very happy."
Awesome. I asked the nurse what she thought about me going home. Honestly, I feel a little drunk and like I need a whole bottle of wine at the same time. (Fear not, campers, I had nothing to drink). I was so tired and so excited and so... EVERYTHING!
The nurse just told me to go home. She said that they were trying to keep Caleb quiet for the first several hours, and it's a great time for us to go home and get some rest. I wanted to play music for him and read him some chapters of our book, but it was really clear to me that it wasn't going to happen that evening until everything calmed down. And that wasn't going to happen for a long time.
"Go home, sleep, call us if you want an update," the nurse said. "He's doing just exactly as well as we could hope, he's doing beautifully."
I didn't want to leave him at the same time I wanted to go home and rest. Eric got me out the door, and I nearly turned around only ten million times. Honestly, I knew we were getting in the way. Caleb obviously just wanted to rest (he moved at anyone touching him) and he managed to get his hands in his "favorite" position (right fist by his mouth, left by his ear). The nursing staff always offers to pull up a chair for you, but they didn't offer us anything to sit on. They asked us to move more than once! :) I think we were a little in the way, but Children's does a good job of balancing parental involvement with treatment of patients.
I am so happy right now. My little baby boy is on the road to recovery! I have a million tears to cry still, and they're all happy ones. This is something I've been waiting for since November, and I just feel as if I've been lifted up 10 million feet by the news that he made it through the surgery and is doing beautifully!
I'll update again tomorrow. The surgeons mentioned that in 12-24 hours after the surgery several kids have a short decrease in heart function--that they start out great and have what seems to be a mini setback. If this happens, he said not to worry about it, it's fairly common and the function returns in nearly all the cases. So I'll... keep you updated. LOL I should macro that statement.
Update yet again...
So many updates, so little time. :)
I just talked with the surgeon. He said that things did go very well. When the baby first came off the heart/lung machine there was a slight malfunction with one side of one of his walls of his heart. They watched it closely, and in about 45 minutes it was functioning normally. He said that it can happen if some air gets into one of the coronary arteries, but all during that time his blood pressures and other stats were beautiful.
His O2 sats are at 100%. So that machine has been sucessfully SHUT UP! Of course he'll have other bells/whistles going off for a while, but that darn O2 monitor will just have to deal with being silenced.
The valve that they were looking at that was 2-sided... well, it's a little thickened, but it does actually have THREE sides just like a normal valve. The surgeon said the function of the valve was just fine, so he doesn't forsee any future problems with anything, despite the thickening.
He mentioned that the little guy has got some rough patches to get thru here in the next few days, but he said he expects him to do just fine. He left the chest open even though he thinks there is enough room. He just wanted to be extra careful about that heart wall and to keep looking at it. He expects to close his chest on Wednesday if all goes well. :)
I told him that I'd kiss him if it were appropriate--he offered a handshake instead.
So, thank you so much once again for everyone's support! Truely I think that it helped my little baby get thru this surgery. I know that it will help him get through these next several days and to the time when we're walking him through our front door! <3 I will keep you updated as the updates come!
I just talked with the surgeon. He said that things did go very well. When the baby first came off the heart/lung machine there was a slight malfunction with one side of one of his walls of his heart. They watched it closely, and in about 45 minutes it was functioning normally. He said that it can happen if some air gets into one of the coronary arteries, but all during that time his blood pressures and other stats were beautiful.
His O2 sats are at 100%. So that machine has been sucessfully SHUT UP! Of course he'll have other bells/whistles going off for a while, but that darn O2 monitor will just have to deal with being silenced.
The valve that they were looking at that was 2-sided... well, it's a little thickened, but it does actually have THREE sides just like a normal valve. The surgeon said the function of the valve was just fine, so he doesn't forsee any future problems with anything, despite the thickening.
He mentioned that the little guy has got some rough patches to get thru here in the next few days, but he said he expects him to do just fine. He left the chest open even though he thinks there is enough room. He just wanted to be extra careful about that heart wall and to keep looking at it. He expects to close his chest on Wednesday if all goes well. :)
I told him that I'd kiss him if it were appropriate--he offered a handshake instead.
So, thank you so much once again for everyone's support! Truely I think that it helped my little baby get thru this surgery. I know that it will help him get through these next several days and to the time when we're walking him through our front door! <3 I will keep you updated as the updates come!
Awesome Update!!
I just got paged from the OR... I shoved everything on my lunch tray in my bag and ran until I found a phone. I called and then they put me on hold... oh geez.
After I was done holding, someone named "Grahm" picked up. A nurse, I didn't recognize the name (later I found out this is his PICU nurse today). She wanted to update me that the surgery went very well, and my baby is off the heart/lung machine and his systems are working on their own!!!!!!
I don't have any specifics... just that he'll be in the OR for about another 1-1.5 hours as they get him ready for transport, and then they'll get him settled in his room back in the PICU for about another 30 minutes after that... then I get to see my baby!!!
Well... I started bawling, and I became one of those people you see walking down the hallway in the hospital bawling their eyes out. Someone looked at me and I kinda yelled at them, "IT'S GOOD NEWS! IT'S GOOD NEWS!!"
So... yes, it's true, Caleb's mama is still insane, but oh so very VERY VERY happy. Now we just need to wait these next several days out while his body recovers from surgery!
After I was done holding, someone named "Grahm" picked up. A nurse, I didn't recognize the name (later I found out this is his PICU nurse today). She wanted to update me that the surgery went very well, and my baby is off the heart/lung machine and his systems are working on their own!!!!!!
I don't have any specifics... just that he'll be in the OR for about another 1-1.5 hours as they get him ready for transport, and then they'll get him settled in his room back in the PICU for about another 30 minutes after that... then I get to see my baby!!!
Well... I started bawling, and I became one of those people you see walking down the hallway in the hospital bawling their eyes out. Someone looked at me and I kinda yelled at them, "IT'S GOOD NEWS! IT'S GOOD NEWS!!"
So... yes, it's true, Caleb's mama is still insane, but oh so very VERY VERY happy. Now we just need to wait these next several days out while his body recovers from surgery!
Update
They started the surgery, all is going well--last update was 5 minutes ago. They have started up the heart/lung machine and all is ok so far!!
Early Day
I got up this morning just after 5:30... I would have gotten up at 5:30, but it's still hard to pull my butt out of bed. In any case, I got up, got ready and was on the road at a little after 6am. The traffic wasn't bad, but it wasn't exactly light or dark out. It was very gray indeed--I hear it may be stormy today.
In any case, I got to the hospital a little before 7. Caleb was sleeping in his crib with no worries. They installed an IV line last night, and it was dripping saline in. His O2 thru his nose was gone--they were using a "hydrated blow" which is just O2 blowing in his face that has some moisture in it. His nose was very dry, so they did this to help out his "snuffling" that he had been having.
I sat in the rocking chair that newly arrived yesterday in his room and just kinda waited around. I didn't want to touch him, as I didn't want to wake him. Apparently he'd been happily sleeping since 2am when he was fed last, and I definitely didn't want to wake him up. The nurse told me the updated time to take him to the OR was 8am.
About 7:30, I spoke with the anesthesiologists (I cheated on that word... I had to look up how to spell it) and I spoke with the head nurse that will be in the OR. They explained what they were going to do in there. They asked me some questions and then they started getting Caleb ready for surgery.
He was pretty unhappy with the little poking that they did, but he took it well. He just squeeked a little and didn't make a fuss. When I got up to see if I could calm him down, he was just looking at the doctors with those big blue eyes, almost like he knew that this was the day that he was going to be fixed up. I talked to him some, but I have to admit that made me a little teary eyed. I have been having random bursts of waterworks thru the morning. He ended up bored with all that junk and went back into a light doze.
When they got him all ready for moving him, they let me walk to him until we were nearly to the OR rooms. It wasn't far at all, and now I know what is just behind those doors right over there. They stopped and let me kiss his little head and talk to him for a minute. Mama was very brave right here, and neither Caleb or I ended up making a fuss. Then they took him back to the OR.
My first update should be in about another hour here... they are going to put something in his IV to knock him out, then add a few lines in him (one wrist or thigh, one central line). They'll hook him up to all sorts of machines, and when that is all finished up they'll let me know. I should get several updates thru the day.
Right now I'm sitting in the ICU waiting area. They're cleaning up his room (I hope he gets the same one back after the operation--I wanted to remember to tell my boss Lisa that he has little lady bugs painted on his door). I just ate breakfast down at the cafeteria. Now I just get to sit here and wait... Oy. I found an area where I can just sit by myself, but this place typically gets loud later in the day with large families and many excited children.
Well... everyone is doing their part, and now my little bug is going to be working on his. Stay strong, my little Caleb. Show them your strong spirit and your will to come home. Make them remember that you're a tough little guy, and mama will be here waiting for you when you're out of surgery!! We'll read some more chapters of the book we're working on, and I'll put your music on again. <3
As for the rest of you... I'll keep you updated.
In any case, I got to the hospital a little before 7. Caleb was sleeping in his crib with no worries. They installed an IV line last night, and it was dripping saline in. His O2 thru his nose was gone--they were using a "hydrated blow" which is just O2 blowing in his face that has some moisture in it. His nose was very dry, so they did this to help out his "snuffling" that he had been having.
I sat in the rocking chair that newly arrived yesterday in his room and just kinda waited around. I didn't want to touch him, as I didn't want to wake him. Apparently he'd been happily sleeping since 2am when he was fed last, and I definitely didn't want to wake him up. The nurse told me the updated time to take him to the OR was 8am.
About 7:30, I spoke with the anesthesiologists (I cheated on that word... I had to look up how to spell it) and I spoke with the head nurse that will be in the OR. They explained what they were going to do in there. They asked me some questions and then they started getting Caleb ready for surgery.
He was pretty unhappy with the little poking that they did, but he took it well. He just squeeked a little and didn't make a fuss. When I got up to see if I could calm him down, he was just looking at the doctors with those big blue eyes, almost like he knew that this was the day that he was going to be fixed up. I talked to him some, but I have to admit that made me a little teary eyed. I have been having random bursts of waterworks thru the morning. He ended up bored with all that junk and went back into a light doze.
When they got him all ready for moving him, they let me walk to him until we were nearly to the OR rooms. It wasn't far at all, and now I know what is just behind those doors right over there. They stopped and let me kiss his little head and talk to him for a minute. Mama was very brave right here, and neither Caleb or I ended up making a fuss. Then they took him back to the OR.
My first update should be in about another hour here... they are going to put something in his IV to knock him out, then add a few lines in him (one wrist or thigh, one central line). They'll hook him up to all sorts of machines, and when that is all finished up they'll let me know. I should get several updates thru the day.
Right now I'm sitting in the ICU waiting area. They're cleaning up his room (I hope he gets the same one back after the operation--I wanted to remember to tell my boss Lisa that he has little lady bugs painted on his door). I just ate breakfast down at the cafeteria. Now I just get to sit here and wait... Oy. I found an area where I can just sit by myself, but this place typically gets loud later in the day with large families and many excited children.
Well... everyone is doing their part, and now my little bug is going to be working on his. Stay strong, my little Caleb. Show them your strong spirit and your will to come home. Make them remember that you're a tough little guy, and mama will be here waiting for you when you're out of surgery!! We'll read some more chapters of the book we're working on, and I'll put your music on again. <3
As for the rest of you... I'll keep you updated.
Sunday, April 15, 2007
The day before...
So this is the night before the operation... oy.
The baby had a good day today.
I don't know what else to say at the moment... I keep typing and deleting so... I will update tomorrow as soon as I know something.
The baby had a good day today.
I don't know what else to say at the moment... I keep typing and deleting so... I will update tomorrow as soon as I know something.
Saturday, April 14, 2007
Saturday... (no inventive title)
Well... today was uneventful, and for that I am thankful!
The baby was sleeping when I arrived. He is so adoreable. Right after that it was time for him to eat. I fed him a bottle and he sucked it right down. When he woke up for it, it was typical Caleb. *Eyes open* *Realizes hunger* *WAH!!!!* :)
Right before the bottle, we had a visit from my friend Tania. She was there for the feeding, then he impressed her with his big blue eyes. Afterwards he took a nap. Tania and I went out for a little lunch, and when we came back--it was time for another feeding.
The baby let me get through two diapers today without hollaring, and one NEARLY without hollaring. And really that was more of a crank than a hollar. His O2 sats were good today--he didn't set his alarms off all that often. The only rough part of the day was trying to convince him to eat the rest of his dinner when he felt that it was 10 oz too much. That was a surprise as he's been sucking down the food like they won't bring him another.
Tomorrow is the day before surgery, and in order to get him ready they have to.... actually not much. He will get a bath tonight, and another tomorrow night. There will be a few labs to run, but that's it. Otherwise he's pretty much ready to go.
Oh he's so beautiful! It's getting harder to leave him there every night... I want to take him home! Only a few more weeks left, I suppose!
The baby was sleeping when I arrived. He is so adoreable. Right after that it was time for him to eat. I fed him a bottle and he sucked it right down. When he woke up for it, it was typical Caleb. *Eyes open* *Realizes hunger* *WAH!!!!* :)
Right before the bottle, we had a visit from my friend Tania. She was there for the feeding, then he impressed her with his big blue eyes. Afterwards he took a nap. Tania and I went out for a little lunch, and when we came back--it was time for another feeding.
The baby let me get through two diapers today without hollaring, and one NEARLY without hollaring. And really that was more of a crank than a hollar. His O2 sats were good today--he didn't set his alarms off all that often. The only rough part of the day was trying to convince him to eat the rest of his dinner when he felt that it was 10 oz too much. That was a surprise as he's been sucking down the food like they won't bring him another.
Tomorrow is the day before surgery, and in order to get him ready they have to.... actually not much. He will get a bath tonight, and another tomorrow night. There will be a few labs to run, but that's it. Otherwise he's pretty much ready to go.
Oh he's so beautiful! It's getting harder to leave him there every night... I want to take him home! Only a few more weeks left, I suppose!
Friday, April 13, 2007
New digs for the baby!
Caleb was moved from the IICU/NICU to the PICU. Besides the fancy name change, he also has received his own private room. It has a sleeping couch in it for a parent, a larger bed (because he needs a larger bed??), a window, and every wire, etc, that was in the last room. He is looking even smaller in his big new crib.
This area of the hospital (actually the same area, but they treat it like it's a whole new country--you should have seen the reaction when I asked if we could bring the CD player he was using from one room to the other) is just for heart patients. There are children of various ages in here, and at the moment Caleb is the only infant. The nurses aren't as concerned about his O2 sats as they were in the regular NICU. They don't care if he drops to 40 as long as he pops back up and doesn't "look blue."
Well, as you can imagine this concerns his mother. When he dropped down to 40 before is when he had his "episode" of not breathing. I did NOT like that. I want to see him sitting in the 70s at least, thankyouverymuch. They say it's not an issue for him to drop as long as he comes up again. I say it's scary.
He is getting fed more now--they have upped the intake of liquid for him, so he's getting more food. This is good for many reasons, not the least is that it makes him happier. When he gets his food, he now seems more satisfied, and in fact he had a much better day as far as crankiness goes. He is still gassy from the extra calories, but he slept nearly all day as opposed to the grumpy Caleb that has been with us the past three days.
How does Caleb feel? The nurse put it a good way today. She talked about how his stats should be 60+. When a normal adult stands about 14,000 feet their O2 sats are about 80. When they exercise, they drop rapidly causing shortness of breath, crankiness, and just general discomfort. So you can imagine that this little baby is feeling a little "off."
As soon as the heart/lung machine starts up, his sats will go up to normal, and I imagine that will be a big relief. Once he's thru the surgery and off the vent, he will be able to start feeling like a normal baby.
How wonderful for us not to panic when he cries, or worry that a bout of bad gas will send him into a downward spiral. The next few days will be hard, waiting for the surgery.
Tomorrow hopefully Eric will be back at the hospital. He hasn't been since Sunday because he's been feeling a little under the weather. It's horrid timing. I hope that I do not get sick, because you can imagine they are rather strict at the hospital with visiting.
I have fallen head over heels in love with this little baby. He's mine, he's really mine!
I want to thank everyone for all the good thoughts, prayers, meditations and letters. They have been so wonderful, and Caleb and I appreciate every one of them. I believe that all this love and support will help him through this time. I thought I had many good friends. Now I know that I have more than friends--I have an extended family who has offered us wonderful support and kindness. Thank you all, and I'm sure if he could Caleb would thank you as well--but at the moment I think he would probably appreciate a warm bottle. *smile* Don't worry, when he's older, he'll know. :)
This area of the hospital (actually the same area, but they treat it like it's a whole new country--you should have seen the reaction when I asked if we could bring the CD player he was using from one room to the other) is just for heart patients. There are children of various ages in here, and at the moment Caleb is the only infant. The nurses aren't as concerned about his O2 sats as they were in the regular NICU. They don't care if he drops to 40 as long as he pops back up and doesn't "look blue."
Well, as you can imagine this concerns his mother. When he dropped down to 40 before is when he had his "episode" of not breathing. I did NOT like that. I want to see him sitting in the 70s at least, thankyouverymuch. They say it's not an issue for him to drop as long as he comes up again. I say it's scary.
He is getting fed more now--they have upped the intake of liquid for him, so he's getting more food. This is good for many reasons, not the least is that it makes him happier. When he gets his food, he now seems more satisfied, and in fact he had a much better day as far as crankiness goes. He is still gassy from the extra calories, but he slept nearly all day as opposed to the grumpy Caleb that has been with us the past three days.
How does Caleb feel? The nurse put it a good way today. She talked about how his stats should be 60+. When a normal adult stands about 14,000 feet their O2 sats are about 80. When they exercise, they drop rapidly causing shortness of breath, crankiness, and just general discomfort. So you can imagine that this little baby is feeling a little "off."
As soon as the heart/lung machine starts up, his sats will go up to normal, and I imagine that will be a big relief. Once he's thru the surgery and off the vent, he will be able to start feeling like a normal baby.
How wonderful for us not to panic when he cries, or worry that a bout of bad gas will send him into a downward spiral. The next few days will be hard, waiting for the surgery.
Tomorrow hopefully Eric will be back at the hospital. He hasn't been since Sunday because he's been feeling a little under the weather. It's horrid timing. I hope that I do not get sick, because you can imagine they are rather strict at the hospital with visiting.
I have fallen head over heels in love with this little baby. He's mine, he's really mine!
I want to thank everyone for all the good thoughts, prayers, meditations and letters. They have been so wonderful, and Caleb and I appreciate every one of them. I believe that all this love and support will help him through this time. I thought I had many good friends. Now I know that I have more than friends--I have an extended family who has offered us wonderful support and kindness. Thank you all, and I'm sure if he could Caleb would thank you as well--but at the moment I think he would probably appreciate a warm bottle. *smile* Don't worry, when he's older, he'll know. :)
Thursday, April 12, 2007
Meeting with the sugeon
Today Caleb was feeling: Grumpy. We're not surprised! LOL He is still having a bit of tummy trouble, and when he gets angry, his sats drop. Which isn't good... he had to have the O2 blow a few things today. That's basically just a big tube that shoots O2 at him. But when he's calm, his sats are in the 80s, which is great. They're supposed to sit at 60+.
One of his doctors brought by the pack of students that were learning today. I'm afraid I don't remember any of their names... I just remember Dr. Mazer, and I'm still not sure if that's the pregnant doctor or the dark haired one. ANYHOW~ The pack of doctors entered. There is one who has been leading on his case... Caleb just happened to be hollaring his little head off, and then the O2 monitors started beeping. The doctor turned to the pack, "That's how it works... first he goes off and then his alarms go off. He gets pretty pissed." Yes, the doctor said "pissed." :)
Oooh, and he's now taking ALL his food from the bottle. He hasn't used the food tube in nearly 24 hours. Finally he's got the family trait of loving food. He drinks it down quickly and is (go figure) cranky when his meals don't come fast enough.
Today the surgeon came by to talk to me. He was a nice guy--kind eyes and a gentle way of explaining things. He went over what the diagnosis was again, and what the treatment is. Also he talked about the risks and what would happen.
The surgery will take place on Monday. We should be there by 7am. The baby will go in at 7:30... after that they will give him anesthesia and then put something down his throat so they can make a echo real-time from the back side of his heart. This part will be about 1-1.5 hours. After that they will do the surgery.
First they will open the chest in the center, and then they will remove a gland in the front of his heart. It's a gland that is needed during their time in the womb, but by the time they're teenagers the gland just kinda shrivels up and goes away. It will probably be in the way, so out it goes! They will put the baby on the heart/lung machine and give the heart some medication that will allow it to live without blood (the drugs allow it to live for about 8 hours, this operation takes about 4). Then they will open the sack around the heart, then begin the arteral switch portion of the operation.
After the switch, they will reattach the coronary arteries... they are small little ones that pretty much have to be attached perfectly to the heart. It's the hardest part of the operation, as there is no wiggle room, and the arteries are so teeny. The good news is that out of all the configurations of arteries, Caleb has just about the easiest. This gives them a little extra "wiggle room."
Once this is done, the heart should return to normal function. The only long-term concerns they have specific to the baby (other than the normal complications that could pop up, such as narrowing, etc) is that one of his valves is only 2-sided instead of 3-sided. This may/may not fix itself as it gets older. It also may/may not be an issue when he gets older if it doesn't fix itself. It may/may not mean anything!! You get the idea... they don't know. They don't know how many people are running around out there with 2-sided valves, and sometimes there are issues and sometimes not.
Going back to now... the baby will have to have blood transfusions. Once to start the heart/lung machine, and then one at the end because the heart/lung machine removes the platelets (spelled right??) from the blood, and he needs those.
Once things are finished with the switch and they watch the heart function without the heart/lung machine, then there will be another 30-40 minutes of getting him ready to go back to the PICU. He'll be on the vent and sedated. His chest will probably not be closed.
What?? Not closed? You read that right. They will probably just cover it with a membrane for the first few days. The reason is that there is swelling after surgery and they want to make sure that the heart has room. They may/may not close it after the surgery right away if there is room. In a few days they will close up his chest properly. Then we wait until the swelling goes down.
When it goes down (the baby has to pee this out! Go baby!) they will be able to take him off the vent. Then, they need to teach him to eat again. We're looking at 2-3 more weeks in the hospital from Monday. He could be out by Friday of that week, but it could also be another month or longer. It all depends on him.
A-ha... aren't we glad that he's so cranky and stubborn now??
The surgeon was happy to see his spunk, and commented on the strong lungs he has. He is expecting things to go well, and I advised him to have a good Monday. He will be doing the operation with the other surgeon (who is on vacation this week). Together they will work on making the baby better! We can get a DVD of the operation after. I can't watch it, but I think the baby might like to have it when he grows up. Boys like that kind of thing!! LOL
As a note... some time tonight the baby will be moved from the IICU to the PICU... I guess that they have 19 beds in the NICU and they're full now. Caleb will go to the cardiac side as that is where he would be going after the surgery any how.
One of his doctors brought by the pack of students that were learning today. I'm afraid I don't remember any of their names... I just remember Dr. Mazer, and I'm still not sure if that's the pregnant doctor or the dark haired one. ANYHOW~ The pack of doctors entered. There is one who has been leading on his case... Caleb just happened to be hollaring his little head off, and then the O2 monitors started beeping. The doctor turned to the pack, "That's how it works... first he goes off and then his alarms go off. He gets pretty pissed." Yes, the doctor said "pissed." :)
Oooh, and he's now taking ALL his food from the bottle. He hasn't used the food tube in nearly 24 hours. Finally he's got the family trait of loving food. He drinks it down quickly and is (go figure) cranky when his meals don't come fast enough.
Today the surgeon came by to talk to me. He was a nice guy--kind eyes and a gentle way of explaining things. He went over what the diagnosis was again, and what the treatment is. Also he talked about the risks and what would happen.
The surgery will take place on Monday. We should be there by 7am. The baby will go in at 7:30... after that they will give him anesthesia and then put something down his throat so they can make a echo real-time from the back side of his heart. This part will be about 1-1.5 hours. After that they will do the surgery.
First they will open the chest in the center, and then they will remove a gland in the front of his heart. It's a gland that is needed during their time in the womb, but by the time they're teenagers the gland just kinda shrivels up and goes away. It will probably be in the way, so out it goes! They will put the baby on the heart/lung machine and give the heart some medication that will allow it to live without blood (the drugs allow it to live for about 8 hours, this operation takes about 4). Then they will open the sack around the heart, then begin the arteral switch portion of the operation.
After the switch, they will reattach the coronary arteries... they are small little ones that pretty much have to be attached perfectly to the heart. It's the hardest part of the operation, as there is no wiggle room, and the arteries are so teeny. The good news is that out of all the configurations of arteries, Caleb has just about the easiest. This gives them a little extra "wiggle room."
Once this is done, the heart should return to normal function. The only long-term concerns they have specific to the baby (other than the normal complications that could pop up, such as narrowing, etc) is that one of his valves is only 2-sided instead of 3-sided. This may/may not fix itself as it gets older. It also may/may not be an issue when he gets older if it doesn't fix itself. It may/may not mean anything!! You get the idea... they don't know. They don't know how many people are running around out there with 2-sided valves, and sometimes there are issues and sometimes not.
Going back to now... the baby will have to have blood transfusions. Once to start the heart/lung machine, and then one at the end because the heart/lung machine removes the platelets (spelled right??) from the blood, and he needs those.
Once things are finished with the switch and they watch the heart function without the heart/lung machine, then there will be another 30-40 minutes of getting him ready to go back to the PICU. He'll be on the vent and sedated. His chest will probably not be closed.
What?? Not closed? You read that right. They will probably just cover it with a membrane for the first few days. The reason is that there is swelling after surgery and they want to make sure that the heart has room. They may/may not close it after the surgery right away if there is room. In a few days they will close up his chest properly. Then we wait until the swelling goes down.
When it goes down (the baby has to pee this out! Go baby!) they will be able to take him off the vent. Then, they need to teach him to eat again. We're looking at 2-3 more weeks in the hospital from Monday. He could be out by Friday of that week, but it could also be another month or longer. It all depends on him.
A-ha... aren't we glad that he's so cranky and stubborn now??
The surgeon was happy to see his spunk, and commented on the strong lungs he has. He is expecting things to go well, and I advised him to have a good Monday. He will be doing the operation with the other surgeon (who is on vacation this week). Together they will work on making the baby better! We can get a DVD of the operation after. I can't watch it, but I think the baby might like to have it when he grows up. Boys like that kind of thing!! LOL
As a note... some time tonight the baby will be moved from the IICU to the PICU... I guess that they have 19 beds in the NICU and they're full now. Caleb will go to the cardiac side as that is where he would be going after the surgery any how.
Better days
Caleb is doing better with his O2 sats, although he still has a little tummy troubles. He was awake for nearly 8 hours yesterday because every time he'd try to sleep he'd get gassy, which would make him uncomfortable.
They took out his IV line in his hand (aka his toy) because it was no longer working and got yucky. His belly button scab is gone now--the nurse knocked it off when she removed his belly IV the other day.
His little blue eyes are open and looking around most of the time I am there. He took two full bottles by mouth, and only had to have a little bit thru his feeding tube. They don't push him to eat because it's exercise for babies, and hard on heart kids, but they want him used to feeding on a bottle so it won't be quite as hard to go back to it after being on the vent.
He is a little snuffly, and they have to vacuum the boogers out of his nose... you should see him fight that one. Oh how he hates it. He can turn purple and angry in 2 seconds, and those arms and legs kick at the nurses... but he's pretty good about calming right down.
I hear this a lot: "Wow, he's got some great lungs!"
They took out his IV line in his hand (aka his toy) because it was no longer working and got yucky. His belly button scab is gone now--the nurse knocked it off when she removed his belly IV the other day.
His little blue eyes are open and looking around most of the time I am there. He took two full bottles by mouth, and only had to have a little bit thru his feeding tube. They don't push him to eat because it's exercise for babies, and hard on heart kids, but they want him used to feeding on a bottle so it won't be quite as hard to go back to it after being on the vent.
He is a little snuffly, and they have to vacuum the boogers out of his nose... you should see him fight that one. Oh how he hates it. He can turn purple and angry in 2 seconds, and those arms and legs kick at the nurses... but he's pretty good about calming right down.
I hear this a lot: "Wow, he's got some great lungs!"
Wednesday, April 11, 2007
Rough Day for both!
Today was a rough day for both of us. Things were going well for Caleb, although he was sating a little low a few times. If he kept going low they said they would put him on O2 thru the nose. They decided to up his calorie content in his milk in the hopes that he would pack on a little weight. Yesterday evening they started at 24 calories, and today they started on 26 calories.
Well... this did NOT agree with Caleb's tummy. He ended up getting the most horrible gas. He was not a happy camper at all, and kept having to strain with the gas. When he strains, the O2 is taken away from his lungs... you get the picture--this is not a good thing. I was holding him, and he was sating badly. He was trying to fall asleep but was so uncomfortable. His tummy was bothering him.
He was in my lap when his sats hit into the 40s (they should be 60+ for him). I thought he was finally closing his little eyes to get some sleep, that he was finally relaxing and his O2 would go up, but then the nurse said, "He's not breathing." Those have to be the scariest words that any mother has to hear about her baby. "Rub his chest like this," she said, showing me. She grabbed an O2 blow and put it in front of his face. Thank God he came back to breathing quickly.
With the O2 his stats came back up into the 80s, and then we had to get the OK to put the O2 back into his nose. His stats kept dropping and going back and forth, and Caleb was a mess--he was screaming and flailing uncontrolably. The doctors came in and ordered some tylenol and some gas drops for his tummy... they tried to feed him again (via the tube--thru the bottle was stressing him out too much) but he started to scream once more.
I couldn't take it and had to pick him up, wires and all, and rock him and hold him. With the gas drops, a warm compress for his tummy, and the reduced speed to his feed, we were finally able to calm him down. My sweet baby was finally able to get a little nap. It was only interrupted by another small fit when there was a little more gas... but a diaper change and a little more love and attention got him to sleep peacefully.
Wow... what a day... I am so worn out, I can't imagine how little Caleb feels. He wasn't able to comfort himself at all with that painful gas. They moved him down from 26 calorie to 23 calorie food. Let's hope that this fixes the tummy troubles. When I left the hospital tonight he was happily in dreamland, and I suspect he was so worn out he would be sleeping it off for a while.
All this from a little gas...
The good news about all this... you should have seen that little baby fight. Oh he threw his arms about, he threw his legs, he was going to fight this feeling of ickiness--he screamed about how he was in pain, he wasn't going to take it... when he had his apnia, the nurse told the doctor about how he was fighting that, too--he didn't give in. What a great little spirit he has! Caleb fought like hell, and I know he will continue to do so.
Good job, my baby!
Well... this did NOT agree with Caleb's tummy. He ended up getting the most horrible gas. He was not a happy camper at all, and kept having to strain with the gas. When he strains, the O2 is taken away from his lungs... you get the picture--this is not a good thing. I was holding him, and he was sating badly. He was trying to fall asleep but was so uncomfortable. His tummy was bothering him.
He was in my lap when his sats hit into the 40s (they should be 60+ for him). I thought he was finally closing his little eyes to get some sleep, that he was finally relaxing and his O2 would go up, but then the nurse said, "He's not breathing." Those have to be the scariest words that any mother has to hear about her baby. "Rub his chest like this," she said, showing me. She grabbed an O2 blow and put it in front of his face. Thank God he came back to breathing quickly.
With the O2 his stats came back up into the 80s, and then we had to get the OK to put the O2 back into his nose. His stats kept dropping and going back and forth, and Caleb was a mess--he was screaming and flailing uncontrolably. The doctors came in and ordered some tylenol and some gas drops for his tummy... they tried to feed him again (via the tube--thru the bottle was stressing him out too much) but he started to scream once more.
I couldn't take it and had to pick him up, wires and all, and rock him and hold him. With the gas drops, a warm compress for his tummy, and the reduced speed to his feed, we were finally able to calm him down. My sweet baby was finally able to get a little nap. It was only interrupted by another small fit when there was a little more gas... but a diaper change and a little more love and attention got him to sleep peacefully.
Wow... what a day... I am so worn out, I can't imagine how little Caleb feels. He wasn't able to comfort himself at all with that painful gas. They moved him down from 26 calorie to 23 calorie food. Let's hope that this fixes the tummy troubles. When I left the hospital tonight he was happily in dreamland, and I suspect he was so worn out he would be sleeping it off for a while.
All this from a little gas...
The good news about all this... you should have seen that little baby fight. Oh he threw his arms about, he threw his legs, he was going to fight this feeling of ickiness--he screamed about how he was in pain, he wasn't going to take it... when he had his apnia, the nurse told the doctor about how he was fighting that, too--he didn't give in. What a great little spirit he has! Caleb fought like hell, and I know he will continue to do so.
Good job, my baby!
Monday, April 9, 2007
Good Day for Baby, Rough Day for Mama
Caleb had a great day today. I was having a rough time getting my butt in gear, so I didn't get down to the hospital until late. I had to drag myself to the pump and then I just felt.. bleh. Everything took 100x's longer than normal.
When I got there, my little sweetie was taking a nap. He ended up taking a four hour nap. Then he woke up and started looking around and being a little bit of a crank, but not much. He took the fact that he had to wait for food and a diaper change well (I wanted to change the stinker since I arrived, but the nurse had fiddled with his lines in his belly button so I wasn't allowed to until later). Once diapered and changed, we gave him some milk (mine!) in a bottle. He drank nearly 30ml out of 55. The rest went into his feeding tube.
After eating he was awake--so wide awake. He played with his hands, looked around, grunted a little... he was just very content to sit there and be awake and happy. That was the story of the evening. He was just a happy, content little boy!
They took him off the prostaglandon (do I spell this differently every time? hehe) completely. They wanted to give him another chance off the drug because the surgeons do not like operating on patients when they have it in their system. Not a BIG deal, but prefer not to. They want to keep his sats now between 60-100, and he sat all day off the drug in the mid-70s, low 80s. This is great. If he keeps this up, he'll have his operation next Monday.
If he has to go back on the prostaglandon, no big deal... but they would probably move his surgery to the end of this week instead. Not a hurry, but just because they would rather do it sooner than later if he's going to need any extra drugs.
Ooh, yeah, he's off all IVs altogether now.
I was a little depressed today... I was just having one of those days, I guess. Hard to get moving in the a.m., and then I was watching the nurse remove his lines from his belly button, and I just had one of those thoughts--why my baby? I wanted to take him home right there and just have a normal baby. Silly thoughts, I know. This is what we have to work with, and I know that there is a reason why Caleb came to me--probably because he knew that we would give him this chance!
Later, I was a little sad again when the doctor was telling me that after his surgery he would need to be on the vent for 4-12 days. Then, depending on how well he was doing, he would be in the hospital another 1-4 weeks after that. So the doctor told me if he was average, he would be in for at least another 2-3 weeks past Monday. I am a little scared of that time... right now it's easier because I get to hold him and interact with him and play with him. Soon, he'll be hooked to the vent and sedated, and I will just get to watch him and hold his little hand. I was wrong--waiting for the operation will not be the hard part. The hard part will be waiting for him to recover after the operation. Since he keeps getting better and better it's hard to remember that he will have to go back on the vent and be a sick little baby again.
So... mama is having a rough day today. But, that's just today. Tomorrow I'll be back playing with the little one that I love so much, and I'll be happy again. One day at a time!
Baby is having a great day today! That is the important part. I don't like leaving him, but his nurses have been fantastic. I stayed tonight until he fell asleep (he had another awake and playing period). I need to go buy little toys for him... he likes to hold things and put them in his mouth. I swear the little IV line in his L hand is the best toy the doctors could ever give him. He loves trying to shove it in his mouth, and when that doesn't work he tries to poke his eye out. I think I'd rather have him try a wrist-rattle instead of the IV.... but you know he won't love it as much. LOL
When I got there, my little sweetie was taking a nap. He ended up taking a four hour nap. Then he woke up and started looking around and being a little bit of a crank, but not much. He took the fact that he had to wait for food and a diaper change well (I wanted to change the stinker since I arrived, but the nurse had fiddled with his lines in his belly button so I wasn't allowed to until later). Once diapered and changed, we gave him some milk (mine!) in a bottle. He drank nearly 30ml out of 55. The rest went into his feeding tube.
After eating he was awake--so wide awake. He played with his hands, looked around, grunted a little... he was just very content to sit there and be awake and happy. That was the story of the evening. He was just a happy, content little boy!
They took him off the prostaglandon (do I spell this differently every time? hehe) completely. They wanted to give him another chance off the drug because the surgeons do not like operating on patients when they have it in their system. Not a BIG deal, but prefer not to. They want to keep his sats now between 60-100, and he sat all day off the drug in the mid-70s, low 80s. This is great. If he keeps this up, he'll have his operation next Monday.
If he has to go back on the prostaglandon, no big deal... but they would probably move his surgery to the end of this week instead. Not a hurry, but just because they would rather do it sooner than later if he's going to need any extra drugs.
Ooh, yeah, he's off all IVs altogether now.
I was a little depressed today... I was just having one of those days, I guess. Hard to get moving in the a.m., and then I was watching the nurse remove his lines from his belly button, and I just had one of those thoughts--why my baby? I wanted to take him home right there and just have a normal baby. Silly thoughts, I know. This is what we have to work with, and I know that there is a reason why Caleb came to me--probably because he knew that we would give him this chance!
Later, I was a little sad again when the doctor was telling me that after his surgery he would need to be on the vent for 4-12 days. Then, depending on how well he was doing, he would be in the hospital another 1-4 weeks after that. So the doctor told me if he was average, he would be in for at least another 2-3 weeks past Monday. I am a little scared of that time... right now it's easier because I get to hold him and interact with him and play with him. Soon, he'll be hooked to the vent and sedated, and I will just get to watch him and hold his little hand. I was wrong--waiting for the operation will not be the hard part. The hard part will be waiting for him to recover after the operation. Since he keeps getting better and better it's hard to remember that he will have to go back on the vent and be a sick little baby again.
So... mama is having a rough day today. But, that's just today. Tomorrow I'll be back playing with the little one that I love so much, and I'll be happy again. One day at a time!
Baby is having a great day today! That is the important part. I don't like leaving him, but his nurses have been fantastic. I stayed tonight until he fell asleep (he had another awake and playing period). I need to go buy little toys for him... he likes to hold things and put them in his mouth. I swear the little IV line in his L hand is the best toy the doctors could ever give him. He loves trying to shove it in his mouth, and when that doesn't work he tries to poke his eye out. I think I'd rather have him try a wrist-rattle instead of the IV.... but you know he won't love it as much. LOL
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