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!
Sunday, April 29, 2007
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
Sunday, April 8, 2007
Happy Easter
Happy Easter to Caleb!
The Easter bunny came to Children's Hospital at about 5:30 in the morning... that dude is serious about Easter fun! Caleb received a little green rabbit from the bunny.
On this day he had a few visitors, but mostly slept. The O2 sats are still doing fantastic. He is very thoughtful when awake, watching everything, looking slightly concerned. The nurses are still wary of mucking around with his blood pressure, temp and lines as he is still prone to his outbursts. And he's loud! He definitely doesn't have little baby cries--full blown angry baby. Change my diaper will you??
Today Eric got to change his first diaper on his son. I got to feed him a few times (and he dropped a few poopie diapers for me personally) but he did not drink much from me. They've taken him off the suppliments and he's now getting all his nutrition from a combo of breast milk and formula. He just isn't getting the hang of the bottle nipple at all, so they're doing most of it via feeding tube.
As for what Caleb listens to while in the hospital... lullabys, silly songs, toddler dance songs, a few stories (such as 3 little pigs) and just for kicks a little Frank Sinatra, Elton John and Disney Classics. His iPod is loaded with good things to listen to instead of the beep of his machines.
Speaking of machines beeping--this little one cannot seem to keep his hands off of things! He still is grabbing at everything. He has pulled or kicked off nearly all of his monitors at one point or another. He's down to two IV liquids now, and luckily he hasn't touched that one, but today his heart monitors, resp. monitors and O2 monitors have all gone to be stuck on either different body parts or the bed. He loves to have his hands up by his face, and has already found his thumb to munch on.
Yep... that's my baby! The Crankasaurus Rex that likes to foil the nurses. I love him!
The Easter bunny came to Children's Hospital at about 5:30 in the morning... that dude is serious about Easter fun! Caleb received a little green rabbit from the bunny.
On this day he had a few visitors, but mostly slept. The O2 sats are still doing fantastic. He is very thoughtful when awake, watching everything, looking slightly concerned. The nurses are still wary of mucking around with his blood pressure, temp and lines as he is still prone to his outbursts. And he's loud! He definitely doesn't have little baby cries--full blown angry baby. Change my diaper will you??
Today Eric got to change his first diaper on his son. I got to feed him a few times (and he dropped a few poopie diapers for me personally) but he did not drink much from me. They've taken him off the suppliments and he's now getting all his nutrition from a combo of breast milk and formula. He just isn't getting the hang of the bottle nipple at all, so they're doing most of it via feeding tube.
As for what Caleb listens to while in the hospital... lullabys, silly songs, toddler dance songs, a few stories (such as 3 little pigs) and just for kicks a little Frank Sinatra, Elton John and Disney Classics. His iPod is loaded with good things to listen to instead of the beep of his machines.
Speaking of machines beeping--this little one cannot seem to keep his hands off of things! He still is grabbing at everything. He has pulled or kicked off nearly all of his monitors at one point or another. He's down to two IV liquids now, and luckily he hasn't touched that one, but today his heart monitors, resp. monitors and O2 monitors have all gone to be stuck on either different body parts or the bed. He loves to have his hands up by his face, and has already found his thumb to munch on.
Yep... that's my baby! The Crankasaurus Rex that likes to foil the nurses. I love him!
Saturday, April 7, 2007
Caleb Rocks!
Ok, so he's not rocking out at the moment as we turned off his little iPod. :)
We got here this morning to find that he is no longer on the O2 in his nose--just the drugs and no extra help. Of course, he was being cranky so the nurse had made him a "burrito" baby. He likes to yell, and wow those lungs are getting strong. He's so sweet!
The nurse we have today is a good 'do-it-yourself' nurse. I changed his diaper, then Eric got to hold him and feed him today. I was jealous, but it was Eric's turn to hold him. It was also Eric's turn at the diaper, but we all know how that went... :)
Today he's learning how to eat. You'd think this would be instinct for someone in my family, however he doesn't seem to quite get the hang of it. Put bottle in mouth: check. Suck: check. Wait, I'm supposed to keep sucking?? That's hard work, nevermind.
Eric got him to give a few good burps, but he only took 5oz by bottle and the rest had to go thru the feeding tube. Oh he was mad about that tube going in.
He's about to be moved into a crib instead of his ICU bed, so woohoo! I'm going to get down there for that action... and I want to hold him again. Will update as needed, but his O2 is fantastic and it looks like the original schedule is still on track for the surgery. If we hear any different, will let you know!
We got here this morning to find that he is no longer on the O2 in his nose--just the drugs and no extra help. Of course, he was being cranky so the nurse had made him a "burrito" baby. He likes to yell, and wow those lungs are getting strong. He's so sweet!
The nurse we have today is a good 'do-it-yourself' nurse. I changed his diaper, then Eric got to hold him and feed him today. I was jealous, but it was Eric's turn to hold him. It was also Eric's turn at the diaper, but we all know how that went... :)
Today he's learning how to eat. You'd think this would be instinct for someone in my family, however he doesn't seem to quite get the hang of it. Put bottle in mouth: check. Suck: check. Wait, I'm supposed to keep sucking?? That's hard work, nevermind.
Eric got him to give a few good burps, but he only took 5oz by bottle and the rest had to go thru the feeding tube. Oh he was mad about that tube going in.
He's about to be moved into a crib instead of his ICU bed, so woohoo! I'm going to get down there for that action... and I want to hold him again. Will update as needed, but his O2 is fantastic and it looks like the original schedule is still on track for the surgery. If we hear any different, will let you know!
Friday, April 6, 2007
Caleb's First Days, Part II
Ok... where were we?
I went and saw Caleb at Children's at midnight the night he was born. I was so tired, but I wanted to see the little guy for myself. He was moving and I was surprised--it was the first time I got to see him move! He was only partially sedated.
That night I went home and passed out.
Next day I arrived at the hospital to find that they removed the vent. Woo! I was even allowed to hold the little bugger! Oh, how cute he is!! How fantastically cute!! Eric also was able to hold him for the very first time. He was a little nervous, but Caleb was being cooperative.
When I went to get something to eat and pump (oh joy... my new job!!) Caleb was able to get food for the first time. Well, apparently that wore him out because his O2 stats fell down right afterwards. They had to put him on a CPAP machine to make sure he had enough. That night his nurse was a fantastic lady who absolutely fell in love with him.
Today we arrived at the hospital to find new things again. He was off the CPAP machine, and he was getting an ultrasound of his heart. His O2 was being delivered thru the nose. He was also bellowing. Wow... just yesterday there was a little "meh" when he was upset. Today: WAAAAAAAAH!
I got to hold him and calm him down. Then his O2 started dropping again. They put him on some more drugs... Prostagladin? I'm sorry, I don't know how to spell it. :\ But this was the drug that he was originally on. It helps his blood mix. He is doing quite well on it right now, but one of the side effects is that he might have to go back on the vent if he develops apnia.
Another side effect of this drug: Crankiness. His nurses are wary as I guess little Caleb has been giving them the what-for. He has been known to rip out his tubes and move all over the bed--wasn't this kid just born the day before yesterday?? Well, he is trying to show them who is boss. Unfortunately they're bigger and stronger than he is at the moment, which causes him some frustration and crankiness. The nurses say, "Oh he loves his binkie!" I think *they* are the ones who love it!! :)
When Eric and I were walking back from lunch today, we were at the handwashing station, and from across the room there are some yells of frustration. Eric and I looked at each other. "I think that's yours," he said to me.
Yes... indeed it was our little cranky one! His O2 stats are up on the drug, and so far no apnia, so we're keeping our fingers crossed.
His heart operation is currently scheduled for a week from Monday. Why so long? Because A) he's doing so well and B) the surgeons like to schedule to do the work together. So they scheduled it out to give chances to the other babies. However this is now subject to change since his O2 levels are going up and down and up and down... if he keeps this up they'll do the surgery earlier. They don't expect that it will be an emergency, and they stressed that it doesn't hurt him to have the O2 jumping like that, but they want it nice and even.
That's it so far... yes, I have a million and one pictures, no I haven't posted them anywhere yet! By the time I get home from the hospital I'm exhausted, and I only get my 5 hour nap when I'm pumping--it's the longest that I should go until my milk comes in.
Keep you updated!!
I went and saw Caleb at Children's at midnight the night he was born. I was so tired, but I wanted to see the little guy for myself. He was moving and I was surprised--it was the first time I got to see him move! He was only partially sedated.
That night I went home and passed out.
Next day I arrived at the hospital to find that they removed the vent. Woo! I was even allowed to hold the little bugger! Oh, how cute he is!! How fantastically cute!! Eric also was able to hold him for the very first time. He was a little nervous, but Caleb was being cooperative.
When I went to get something to eat and pump (oh joy... my new job!!) Caleb was able to get food for the first time. Well, apparently that wore him out because his O2 stats fell down right afterwards. They had to put him on a CPAP machine to make sure he had enough. That night his nurse was a fantastic lady who absolutely fell in love with him.
Today we arrived at the hospital to find new things again. He was off the CPAP machine, and he was getting an ultrasound of his heart. His O2 was being delivered thru the nose. He was also bellowing. Wow... just yesterday there was a little "meh" when he was upset. Today: WAAAAAAAAH!
I got to hold him and calm him down. Then his O2 started dropping again. They put him on some more drugs... Prostagladin? I'm sorry, I don't know how to spell it. :\ But this was the drug that he was originally on. It helps his blood mix. He is doing quite well on it right now, but one of the side effects is that he might have to go back on the vent if he develops apnia.
Another side effect of this drug: Crankiness. His nurses are wary as I guess little Caleb has been giving them the what-for. He has been known to rip out his tubes and move all over the bed--wasn't this kid just born the day before yesterday?? Well, he is trying to show them who is boss. Unfortunately they're bigger and stronger than he is at the moment, which causes him some frustration and crankiness. The nurses say, "Oh he loves his binkie!" I think *they* are the ones who love it!! :)
When Eric and I were walking back from lunch today, we were at the handwashing station, and from across the room there are some yells of frustration. Eric and I looked at each other. "I think that's yours," he said to me.
Yes... indeed it was our little cranky one! His O2 stats are up on the drug, and so far no apnia, so we're keeping our fingers crossed.
His heart operation is currently scheduled for a week from Monday. Why so long? Because A) he's doing so well and B) the surgeons like to schedule to do the work together. So they scheduled it out to give chances to the other babies. However this is now subject to change since his O2 levels are going up and down and up and down... if he keeps this up they'll do the surgery earlier. They don't expect that it will be an emergency, and they stressed that it doesn't hurt him to have the O2 jumping like that, but they want it nice and even.
That's it so far... yes, I have a million and one pictures, no I haven't posted them anywhere yet! By the time I get home from the hospital I'm exhausted, and I only get my 5 hour nap when I'm pumping--it's the longest that I should go until my milk comes in.
Keep you updated!!
Thursday, April 5, 2007
Caleb's First Days, part I
Right before my son's birth, my room was filled with doctors. The door opened up and they started pouring in! After 16 hours of labor... I pushed for about an hour, and then my doctor caught little Caleb as he came into the world. He wasn't too impressed with it, apparently, as he tried to grasp anything in his path--from my cord to the doctor's scissors. He was unsuccessful in organizing his escape, however. The doctors took him, cleaned him off, stuck a cap on him and wrapped him like a baby burrito.
I was allowed a few minutes to say hello--I remember it being about one minute altogether, and then they took him and went to the ICU. Eric went up with him, and I was left to be sewn back up. After a while Eric came back down and we sat about waiting. Then right before they took the baby to Children's hospital he was "packaged" and brought down to see us. We had the chance to poke at him inside a little plastic box. He was sedated, on a vent, and couldn't care less about us!
Eric took the ambulance to Children's, and signed a million papers and met a million doctors. I was back at the hospital, trying to get a nap between a million nurses and a million checkups. But, I was doing alright so I was allowed to leave after 12 hours after giving birth.
And... this is where I have to say that I'm taking the time to nap for the evening. :) More to come, including meeting him in the hospital, and holding him again!!!
Sorry kids.... I'm really tired :(
Special thanks to Kate for helpnig so much... she drove us around everywhere, sat and listened to me cry and whine, watched my epidural, held my leg during labor (Eric was the co-pilot on the other leg) and had the decency to tell me that I did a "good job" even with all my whining. :) Thank you Kate!!!!!!!!!!!!!!!!!!!!! <3
I was allowed a few minutes to say hello--I remember it being about one minute altogether, and then they took him and went to the ICU. Eric went up with him, and I was left to be sewn back up. After a while Eric came back down and we sat about waiting. Then right before they took the baby to Children's hospital he was "packaged" and brought down to see us. We had the chance to poke at him inside a little plastic box. He was sedated, on a vent, and couldn't care less about us!
Eric took the ambulance to Children's, and signed a million papers and met a million doctors. I was back at the hospital, trying to get a nap between a million nurses and a million checkups. But, I was doing alright so I was allowed to leave after 12 hours after giving birth.
And... this is where I have to say that I'm taking the time to nap for the evening. :) More to come, including meeting him in the hospital, and holding him again!!!
Sorry kids.... I'm really tired :(
Special thanks to Kate for helpnig so much... she drove us around everywhere, sat and listened to me cry and whine, watched my epidural, held my leg during labor (Eric was the co-pilot on the other leg) and had the decency to tell me that I did a "good job" even with all my whining. :) Thank you Kate!!!!!!!!!!!!!!!!!!!!! <3
Wednesday, April 4, 2007
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