Phil covered the eastern front again today. Caleb was fussy, but did not need any morphine. He has not had any since last Thursday. They think that he might be having issues with gas.
They decided not to start Caleb's Viagra today. We were supposed to start last Friday, but it keeps getting pushed back. Today, we found out that the reason is the cardiologists have been keeping an eye on Caleb's heart rhythm. Some of the cardiologists are worried that he might not be getting enough blood supply to his heart and some are not worried. We will see if we actually start tomorrow.
Today, they did decide to supplement his breast milk to 22 calories per mL from the usual 20 calories per mL. Now we will get to see if he starts putting on weight.
Today's Weight: 3.615 kg
Yesterday's Weight: 3.59 kg
Change: +25 grams
Monday, October 11, 2010
Sunday, October 10, 2010
Sunday, October 10, 2010
Today was a good day. Phil went back to Ann Arbor first thing this morning and made it back in time for rounds. Caleb has been increased to 22 mL/hr of breast milk. It sounds like they might not be adding the supplement any time soon, so I think that they increased his volume to give him some more calories. Phil's understanding was that they didn't want to make the breast milk too concentrated so it would be difficult for Caleb to digest. He will stay on the continuous feed pump because it is easier for his body to digest at a constant rate instead of dealing with a large quantity at one time like a normal baby does.
Caleb was also less fussy last night. We think that he is enjoying having something in his belly again - several nurses have commented to that effect as well. At least we know he is in the right family, he is much happier when eating (especially continuously).
Yesterday, I was really worried about Caleb's fussiness and the resulting drugs. When I had Ella, the pediatrician said that if the baby fusses for Dad, Dad should take Mom's robe, throw it over his shoulder and let the baby smell Mom. Yesterday morning, I left the t-shirt that I used for pajamas the night before at the hospital. When Phil got there this morning, the t-shirt was in Caleb's bed, up by his face. I have talked to several people that used this for puppies. It seems to work for Caleb too.
Hopefully, Caleb can start to gain some weight now that he is on full feeds and not wasting all of his calories throwing fits. We lost some ground last week when he had his big bleed (we call it his fountain impression) that we have not regained. We will see what this week brings - smelly t-shirts and all!
Yesterday's Weight: 3.58 kg
Today's Weight: 3.59 kg
Change: +10 grams
Note: A penny minted after 1982 weighs 2.5 grams.
Caleb was also less fussy last night. We think that he is enjoying having something in his belly again - several nurses have commented to that effect as well. At least we know he is in the right family, he is much happier when eating (especially continuously).
Yesterday, I was really worried about Caleb's fussiness and the resulting drugs. When I had Ella, the pediatrician said that if the baby fusses for Dad, Dad should take Mom's robe, throw it over his shoulder and let the baby smell Mom. Yesterday morning, I left the t-shirt that I used for pajamas the night before at the hospital. When Phil got there this morning, the t-shirt was in Caleb's bed, up by his face. I have talked to several people that used this for puppies. It seems to work for Caleb too.
Hopefully, Caleb can start to gain some weight now that he is on full feeds and not wasting all of his calories throwing fits. We lost some ground last week when he had his big bleed (we call it his fountain impression) that we have not regained. We will see what this week brings - smelly t-shirts and all!
Yesterday's Weight: 3.58 kg
Today's Weight: 3.59 kg
Change: +10 grams
Note: A penny minted after 1982 weighs 2.5 grams.
Saturday, October 9, 2010
Saturday, October 9, 2010
Phil and I would like to thank our family and friends for the wonderful dinner this evening. A benefit was held for our family to help with our expenses. If you are not familiar with Alto, Michigan, a little background is in order. Alto is a small community where nearly everyone is a friend and/or member of our family. Tonight, we were surrounded by people that have been praying for and supporting our family forever, but especially since we found out about Caleb's heart condition. When I was a teenager, I was never able to figure out why my friends wanted to move away. I always planned on living where I grew up and giving my children the wonderful sense of community that I had. Once again, our community proved my instincts were correct and our children could not be any luckier than to be surrounded by people that love, support and protect them. Thank you to everyone that helped with the dinner and all those that attended. We had a wonderful time and it was great for me to be back where I belong.
Caleb had a good day as well. He is up to his goal volume of 20 mL/hr and seems to be tolerating it very well. He also did a good job being pleasant to the nurses while I was gone. He was fussy for me this morning, so I guess I tired him out. I left around 1:00 pm to head home and he slept most of the rest of the day. A good day in Alto and a good day in Ann Arbor, what more could we ask for?
Caleb had a good day as well. He is up to his goal volume of 20 mL/hr and seems to be tolerating it very well. He also did a good job being pleasant to the nurses while I was gone. He was fussy for me this morning, so I guess I tired him out. I left around 1:00 pm to head home and he slept most of the rest of the day. A good day in Alto and a good day in Ann Arbor, what more could we ask for?
Friday, October 8, 2010
Thursday & Friday, October 7 & 8
I did not post last night because I was busy juggling. I went home yesterday afternoon and Phil and I took the Big Three to ArtPrize. We had a great time and enjoyed being a family in our native habitat. When we got home, I had to work on a project that I needed to have done for work today.
Caleb is still advancing on his feeding. Now he is up to 14 mL/hr with a goal of 20 mL/hr. He seems to be tolerating it very well. He has spit up a couple of times, but nothing that is a big concern. Hopefully, we will get up to full volume tomorrow. Then we will start adding back the formula.
They were going to start his Viagra today, but decided to wait until Sunday or Monday. Once again, they don't want to push Caleb too hard or make too many changes at one time because then we can't pinpoint the cause if there is a problem. I am trying very hard not to get frustrated with our progress. I keep telling myself that the longer it takes, the older he will be and hopefully, we will are more likely to be successful. He has not gained any weight since his big bleeding episode on Monday night, so that is frustrating too. Maybe tomorrow.
Caleb got two doses of morphine in the last 24 hours. This concerns me. As I have mentioned before, this doesn't happen when I am here. I leave early on Thursday and get back later on Friday and he needs two doses. I talked to the nurse practioner about my concerns. I understand that he is spoiled when he can be held for as long as he wants during the day when he is fussy, but I don't know how to fix it. It doesn't seem like a good idea to give him morphine every time he gets inconsolable, but I also understand that he can't be held each time he is fussy at night and he can't just cry it out like a normal baby. If he were home, we would put him in a swing, snuggle him, or carry him around in a carrier. We don't have that luxury here, so hopefully we can find some solution that doesn't involve drugging him constantly.
As I re-read this post, it sounds like I may be getting frustrated and tired. While this is true, I am seeing progress and am still enjoying the time I get with Caleb each day. Hopefully, our progress will continue and soon we can start to see the light at the end of the tunnel.
Caleb is still advancing on his feeding. Now he is up to 14 mL/hr with a goal of 20 mL/hr. He seems to be tolerating it very well. He has spit up a couple of times, but nothing that is a big concern. Hopefully, we will get up to full volume tomorrow. Then we will start adding back the formula.
They were going to start his Viagra today, but decided to wait until Sunday or Monday. Once again, they don't want to push Caleb too hard or make too many changes at one time because then we can't pinpoint the cause if there is a problem. I am trying very hard not to get frustrated with our progress. I keep telling myself that the longer it takes, the older he will be and hopefully, we will are more likely to be successful. He has not gained any weight since his big bleeding episode on Monday night, so that is frustrating too. Maybe tomorrow.
Caleb got two doses of morphine in the last 24 hours. This concerns me. As I have mentioned before, this doesn't happen when I am here. I leave early on Thursday and get back later on Friday and he needs two doses. I talked to the nurse practioner about my concerns. I understand that he is spoiled when he can be held for as long as he wants during the day when he is fussy, but I don't know how to fix it. It doesn't seem like a good idea to give him morphine every time he gets inconsolable, but I also understand that he can't be held each time he is fussy at night and he can't just cry it out like a normal baby. If he were home, we would put him in a swing, snuggle him, or carry him around in a carrier. We don't have that luxury here, so hopefully we can find some solution that doesn't involve drugging him constantly.
As I re-read this post, it sounds like I may be getting frustrated and tired. While this is true, I am seeing progress and am still enjoying the time I get with Caleb each day. Hopefully, our progress will continue and soon we can start to see the light at the end of the tunnel.
Wednesday, October 6, 2010
Wednesday, October 6, 2010
Today, I talked with the surgeon and two of the nurse practioners to get the scoop on the heart catheterization and the game plan.
As I mentioned yesterday, the pressures in Caleb's lungs were too high. We do not know why. Normally, they start out high in newborns and decrease with time. We don't know if his are high because there are problems with his lungs, if they are high because of the shunt or maybe they are high because his body has never been stable long enough for them to go down. While this is not an unheard of problem, it needs to be fixed before he can have the next surgery.
There were no other reported problems with his heart like leaky valves, weak squeeze, etc. That is good news.
After the catheterization, everyone thinks that the shunt is too big. Now, our job is to get Caleb to grow so he will need more blood going to his lungs. He grows and the shunt doesn't, so at some point, it should be the right size and then start to get too small. When it starts to get too small, they will perform another catheterization and if the pressures have dropped, they will perform the next surgery.
The game plan now is as follows (in order):
1) Start feeding him breast milk at a rate of 3 mL/hour and increase to 20 mL/hour over the course of a few days. His current source of nutrition (TPN and lipids) will be reduced as the breast milk is increased, but he will still receive enough nutrition for real growth. If he tolerates this, they will add formula to fortify the breast milk again. This process was started this morning. Caleb is being fed directly to his stomach. Unfortunately, 3 mL/hour does not eliminate his growling belly, but when the volume is increased, he should have a feeling of being full. Hopefully, this will greatly reduce his present fussiness.
2) Start the new medication to try to reduce the pulmonary pressure. The medicine they use is Viagra. It makes the blood flow better through your lungs as well as to other places. They are hoping to start this on Friday. The dosing will be increased slowly to make sure it does not "cause a sudden drop in blood pressure" as the commercials warn.
3) Switch back to oral diuretics and blood pressure medicine. This will not start until the first two items are all set.
4) Wean off the high flow air.
5) Go home and grow until the shunt becomes too small.
They expect the first four steps to take at least a month. Hopefully, we can keep him growing the entire time and when it comes time to wean off the high flow air, his additional size and strength will allow him to be successful.
In the last week, we have seen real growth and an increase in strength. Caleb has grown in length. I am not sure how much, but it is becoming noticeable. Because his weight has not kept up with his length, he is very thin and looks like a worm.
He is also getting stronger. He turns his head side to side, kicks his legs and grabs anything he can catch, requiring you to pry his fingers away. He has bounced back from a pretty substantial blood loss in a really short time. The nurse practioner was impressed by how good he looked this morning.
Now that we have a game plan and have already started, it is much easier to face the days ahead. It is not really even that frustrating that we had already completed Steps 1 and 3 before we had our big backslide. Hopefully, the two weeks that have passed since the backslide and the three weeks ahead before we try weaning off the high flow will give him the strength he needs to finally get over the hump.
As I mentioned yesterday, the pressures in Caleb's lungs were too high. We do not know why. Normally, they start out high in newborns and decrease with time. We don't know if his are high because there are problems with his lungs, if they are high because of the shunt or maybe they are high because his body has never been stable long enough for them to go down. While this is not an unheard of problem, it needs to be fixed before he can have the next surgery.
There were no other reported problems with his heart like leaky valves, weak squeeze, etc. That is good news.
After the catheterization, everyone thinks that the shunt is too big. Now, our job is to get Caleb to grow so he will need more blood going to his lungs. He grows and the shunt doesn't, so at some point, it should be the right size and then start to get too small. When it starts to get too small, they will perform another catheterization and if the pressures have dropped, they will perform the next surgery.
The game plan now is as follows (in order):
1) Start feeding him breast milk at a rate of 3 mL/hour and increase to 20 mL/hour over the course of a few days. His current source of nutrition (TPN and lipids) will be reduced as the breast milk is increased, but he will still receive enough nutrition for real growth. If he tolerates this, they will add formula to fortify the breast milk again. This process was started this morning. Caleb is being fed directly to his stomach. Unfortunately, 3 mL/hour does not eliminate his growling belly, but when the volume is increased, he should have a feeling of being full. Hopefully, this will greatly reduce his present fussiness.
2) Start the new medication to try to reduce the pulmonary pressure. The medicine they use is Viagra. It makes the blood flow better through your lungs as well as to other places. They are hoping to start this on Friday. The dosing will be increased slowly to make sure it does not "cause a sudden drop in blood pressure" as the commercials warn.
3) Switch back to oral diuretics and blood pressure medicine. This will not start until the first two items are all set.
4) Wean off the high flow air.
5) Go home and grow until the shunt becomes too small.
They expect the first four steps to take at least a month. Hopefully, we can keep him growing the entire time and when it comes time to wean off the high flow air, his additional size and strength will allow him to be successful.
In the last week, we have seen real growth and an increase in strength. Caleb has grown in length. I am not sure how much, but it is becoming noticeable. Because his weight has not kept up with his length, he is very thin and looks like a worm.
He is also getting stronger. He turns his head side to side, kicks his legs and grabs anything he can catch, requiring you to pry his fingers away. He has bounced back from a pretty substantial blood loss in a really short time. The nurse practioner was impressed by how good he looked this morning.
Now that we have a game plan and have already started, it is much easier to face the days ahead. It is not really even that frustrating that we had already completed Steps 1 and 3 before we had our big backslide. Hopefully, the two weeks that have passed since the backslide and the three weeks ahead before we try weaning off the high flow will give him the strength he needs to finally get over the hump.
Tuesday, October 5, 2010
Tuesday, October 5, 2010
The Bookends
Caleb is 7 weeks old today.
Caleb did not have any more bleeding, but he did get more blood this morning because his levels were low. With that, he needed extra diuretics to help take away the extra fluid we are pushing into him. He spent most of the day trying to get back to where he was yesterday. Things are looking better now.
He was fussy today. We think that he might be tired of his empty belly. He sucks on his pacifier like there is no tomorrow and he goes crazy when bare flesh passes too close to his mouth. I even saw him trying to suck on his fist. I'm pretty sure that he still knows how to eat.
We got a very preliminary report from yesterday's catheterization. The pressures in his pulmonary artery are too high and he will need another catheterization before his next surgery. The pressures will have to decrease before they will be able to do the surgery. As for what this means for our game plan and time frame, we do not know. We should learn more tomorrow. For now, he is sleeping peacefully and his numbers look much better. We will take what we can get.
Monday, October 4, 2010
Monday, October 4, 2010
The Boys
Because Caleb was not scheduled for his heart catheterization today, I went to the office to pay some bills and print off some stuff I needed for the projects I am working on. I tried not to feel guilty by telling myself that by spending some extra time away this morning, I would be able to spend the rest of the week with him. We are lucky that I can do some work at his bedside and do not have to leave him right now to go back to work.
As I was on my way back to Ann Arbor, I got a phone call from the hospital saying that they were going to do the heart catheterization today, as soon as it was possible. I gave them my consent over the phone and picked up speed, hoping to make it to the hospital in time to hold him and tell him we love him before the procedure. After all the twists and turns we have experienced, we never assume that things will turn out as expected.
I made it to his room with about ten minutes to spare. I got to hold him for a few minutes and take care of the necessary business. I was very relieved that I had made it.
After Caleb went off to the cath lab, I got caught up on what happened since last night's report. He did not need any morphine. He was fussy, but with a pacifier and a volunteer holding him, he made it through. That is the tricky part about a fussy baby with a heart condition. Some of the time, holding him will solve the problem. However, when the nurses have more than one baby to tend to, they can't hold your baby all of the time. Caleb's heart rate increases and his blood oxygen levels decrease when he gets too agitated, so they give him morphine to calm him. We can't stay at the hospital all the time (especially if we are looking at two more months of this), because there is no place for us to sleep. Hopefully, someone can convince him that if he would get well enough to go home, he could have all of the holding he wants with no drug intervention.
The preliminary information from the catheterization is that the shunt is too big. This is in line with what the nurse practioner and the two cardiologists that have followed him in Moderate Care think. Tomorrow, the surgeon will start reviewing everything and pow-wow with everyone to determine our plan of action.
As I was getting ready to write this blog back at the hotel, I got a call from the hospital. After I left, Caleb began bleeding from the artery where the catheterization was performed. Luckily, the nurse caught it, but he had lost a decent amount of blood. They gave him blood, albumen and saline to bring his blood volume back up. His oxygen saturations are good now and his blood pressure is rising back to where it should be. This is one of the risks that they mention is possible but doesn't happen very often. The fact that he had this complication is the reason that I felt the desperate need to get back to hold him before the procedure. It seems that Caleb rarely misses an opportunity to scare us.
Subscribe to:
Posts (Atom)
