Monday, April 16, 2007
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!"
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