Today, the twins are four weeks old. It seems like both an eternity ago and just yesterday that they were born. They have now reached what would have been 32 weeks gestation, and are getting closer to being ready to function in this outside world.
We had a good day with both babies yesterday. Colin started the morning out a little agitated, but his moving (some might call it thrashing) about is causing fewer desaturations — which is very good. He received his first dose of the steroids at noon yesterday, and had a very good afternoon and evening. We are taking that as a sign that the steroid treatment is starting to work — although I don’t know for sure how quickly it actually would take effect.
The doctor was hoping to switch Colin back to the regular ventilator yesterday, but they ran out of time. The nurse thought they would make the switch today instead. John and I both are looking forward to getting Colin off the vibrating ventilator — both because he seems more comfortable on the regular machine, and because we should be able to hold him again. It has been more than a week since the last time I was able to take him out of the isolette. That’s a very long time.
The Prevacid seems to be working for Veronica’s reflux, which in turn seems to have been the cause of bradys, as suspected. She continues to have episodes, but more along the line of one or two a day rather than every hour, as she was for a while there.
Her nurse yesterday (who will be her nurse again today) said she is going to ask the doctor about putting Veronica back on getting her feed over just one hour (down from two right now). If she tolerates that, we may be able to try going back to the regular feeding — holding the milk up and letting it drain into her stomach — rather than the continuous feeding.
This is significant because now that she is 32 weeks, Veronica should be able to handle the combination of skills needed to start taking a bottle and eventually nursing. She has been sucking on her pacifier during her feedings (and her hand, thumb, blanket or whatever else she can get into her mouth) so she is getting used to the idea of associating sucking with a full tummy. She will need to master this last skill before she is able to come home (and, of course, have her bradys under control and be off the oxygen). We are getting so much closer with her.
Friday, July 30, 2010
Thursday, July 29, 2010
Progress?
I guess the “advantage” of having setbacks is that they tend to be followed by more progress. We certainly have seen that with our babies during this journey.
After several bad days (needing to go back on the vibrating ventilator, a blood transfusion two days in a row, no feedings), Colin is moving forward again. We started the feedings yesterday, and are having mixed success — his little tummy needs to remember how to digest the food again. Because he was only able to digest part of each feeding, they have cut the amount he gets in half to 1.5 ml every three hours. When he is able to successfully process that, they will increase the amount of milk he gets gradually until he eventually is getting as much as Veronica (a long way down the road, I’m sure).
Even without the milk, Colin has continued to gain weight and yesterday topped the scales at 2 pounds 3 ounces. Yeah!
We also signed the consent form to start Colin on the steroid treatment, which will begin today. Because he has been on the ventilator for a month, he now officially has chronic lung disease (also called bronchopulmonary dysplasia, or BPD). If the steroid treatment is effective, it will help reduce the inflammation in the lungs and allow us to get him off the ventilator. The sooner we can wean him from the ventilator, the better chance we have reversing the BPD.
As with all things, however, the steroid treatment is not without risks, hence the need for the consent form. We have decided to move forward because we feel fairly certain that the possibility of increasing Colin’s chances of having cerebral palsy is less that the problems his continued use of the ventilator is causing.
We should know within a day or two if Colin is having any of the short-term reactions to the steroids — such as a spike in his blood sugar levels — that would require us to stop the treatment. We will know if they are working within five days.
Veronica’s reflux medicine seems to be helping the bradys; the number and severity of her episodes has gone down considerably. They also were able to lower her oxygen levels again. (We had to increase the levels when she was having the frequent bradys to help her recover.) Now we just need to be able to get her started eating with a nipple and we’ll be one step closer to bringing her home.
After several bad days (needing to go back on the vibrating ventilator, a blood transfusion two days in a row, no feedings), Colin is moving forward again. We started the feedings yesterday, and are having mixed success — his little tummy needs to remember how to digest the food again. Because he was only able to digest part of each feeding, they have cut the amount he gets in half to 1.5 ml every three hours. When he is able to successfully process that, they will increase the amount of milk he gets gradually until he eventually is getting as much as Veronica (a long way down the road, I’m sure).
Even without the milk, Colin has continued to gain weight and yesterday topped the scales at 2 pounds 3 ounces. Yeah!
We also signed the consent form to start Colin on the steroid treatment, which will begin today. Because he has been on the ventilator for a month, he now officially has chronic lung disease (also called bronchopulmonary dysplasia, or BPD). If the steroid treatment is effective, it will help reduce the inflammation in the lungs and allow us to get him off the ventilator. The sooner we can wean him from the ventilator, the better chance we have reversing the BPD.
As with all things, however, the steroid treatment is not without risks, hence the need for the consent form. We have decided to move forward because we feel fairly certain that the possibility of increasing Colin’s chances of having cerebral palsy is less that the problems his continued use of the ventilator is causing.
We should know within a day or two if Colin is having any of the short-term reactions to the steroids — such as a spike in his blood sugar levels — that would require us to stop the treatment. We will know if they are working within five days.
Veronica’s reflux medicine seems to be helping the bradys; the number and severity of her episodes has gone down considerably. They also were able to lower her oxygen levels again. (We had to increase the levels when she was having the frequent bradys to help her recover.) Now we just need to be able to get her started eating with a nipple and we’ll be one step closer to bringing her home.
Tuesday, July 27, 2010
Fighting back
As I mentioned in yesterday’s post, Colin is back on the vibrating ventilator (which he last was on at two days of age). And he really does not like it. You may wonder how a baby who shouldn’t even be born yet and can’t make any noise because of the tube in his throat can let you know when he doesn’t like something. Trust me. When Colin is unhappy, everyone knows.
For the ventilator to work properly, Colin should be lying flat on his back. He has apparently discovered that if he arches his back, the ventilator doesn’t vibrate as much. So he spends a lot of time arching his back and putting his hand on the ventilator tube and pulling. He also thrashes around and gets a very angry looking expression on his face.
However little Colin likes the experience of being on the ventilator, it seems to be working better for him. He has been desatting far less often, and his respiratory rate has stabilized — both good signs. The NICU primary doctor also discontinued the antibiotics the weekend doctor started Colin on. Having read more of Colin’s chest x-rays, he doesn’t believe the spot on Colin’s lung is an infection. Rather, he feels it is related to the collapsed lung.
Since he is off the antibiotic, we can now start Colin on his feeds again. Tonight at 9:00 he got his first milk since last week — a whopping 3 ml, but at least we’re starting again. As long as he tolerates the feeds, they will keep increasing the amount he gets. This will help him feel better (full tummy) and, we hope, put on more weight.
It also frees us to start fighting the lung problems that continue to plague Colin. If all goes well, on Thursday we may be able to start Colin on the steroids to try to clear up the lung issues so we can get him off the ventilator. The steroids are not without risks — both of affecting his brain development and of not working. But we know the ventilator is causing damage to his lungs and he clearly is not happy on it, so we have decided the potential benefits outweigh the risks.
The treatment, if successful, will follow a two week cycle. During the first third of the cycle, Colin will be given the drugs. If those appear to have worked at clearing up his lungs, the second two thirds of the cycle will be spent weaning him off the ventilator.
If, after the five days on the medication, it looks like it has not helped, we will stop and wait until Colin is bigger and try again. At the five-day point we also could see that it is starting to work, but hasn’t done enough yet. If so, the doctor may decide to continue the drugs a little longer before starting the weaning process.
I don’t know about anyone else, but I’m voting for option 1 — success. John and I really do hope the treatment is effective (and on the first try) so that we can wean Colin from the ventilator and focus all of his and our energies on getting him bigger and able to pass some of the other milestones so he can catch up with his sister.
And speaking of Veronica, she continues to do mainly well. She now weighs 4 pounds 12 1/2 ounces and is now getting 40 ml of milk every three hours. The doctor started her on medicine to address the reflux (which is back again as the most likely suspect in her increased number of bradys), and it seems to be reducing the number of extreme bradys she is having. We’ll take that as good news for now.
For the ventilator to work properly, Colin should be lying flat on his back. He has apparently discovered that if he arches his back, the ventilator doesn’t vibrate as much. So he spends a lot of time arching his back and putting his hand on the ventilator tube and pulling. He also thrashes around and gets a very angry looking expression on his face.
However little Colin likes the experience of being on the ventilator, it seems to be working better for him. He has been desatting far less often, and his respiratory rate has stabilized — both good signs. The NICU primary doctor also discontinued the antibiotics the weekend doctor started Colin on. Having read more of Colin’s chest x-rays, he doesn’t believe the spot on Colin’s lung is an infection. Rather, he feels it is related to the collapsed lung.
Since he is off the antibiotic, we can now start Colin on his feeds again. Tonight at 9:00 he got his first milk since last week — a whopping 3 ml, but at least we’re starting again. As long as he tolerates the feeds, they will keep increasing the amount he gets. This will help him feel better (full tummy) and, we hope, put on more weight.
It also frees us to start fighting the lung problems that continue to plague Colin. If all goes well, on Thursday we may be able to start Colin on the steroids to try to clear up the lung issues so we can get him off the ventilator. The steroids are not without risks — both of affecting his brain development and of not working. But we know the ventilator is causing damage to his lungs and he clearly is not happy on it, so we have decided the potential benefits outweigh the risks.
The treatment, if successful, will follow a two week cycle. During the first third of the cycle, Colin will be given the drugs. If those appear to have worked at clearing up his lungs, the second two thirds of the cycle will be spent weaning him off the ventilator.
If, after the five days on the medication, it looks like it has not helped, we will stop and wait until Colin is bigger and try again. At the five-day point we also could see that it is starting to work, but hasn’t done enough yet. If so, the doctor may decide to continue the drugs a little longer before starting the weaning process.
I don’t know about anyone else, but I’m voting for option 1 — success. John and I really do hope the treatment is effective (and on the first try) so that we can wean Colin from the ventilator and focus all of his and our energies on getting him bigger and able to pass some of the other milestones so he can catch up with his sister.
And speaking of Veronica, she continues to do mainly well. She now weighs 4 pounds 12 1/2 ounces and is now getting 40 ml of milk every three hours. The doctor started her on medicine to address the reflux (which is back again as the most likely suspect in her increased number of bradys), and it seems to be reducing the number of extreme bradys she is having. We’ll take that as good news for now.
Monday, July 26, 2010
Hi Big Boy
I’m happy to announce that Colin has nearly hit the two pound mark — last night he weighed in at 1 pound 15 1/2 ounces. The weight he has gained since birth has really filled out his frame. Half a pound doesn’t sound like much until you realize it is one third of his birth weight.
Unfortunately, while Colin has been gaining weight, he is still struggling with his breathing. Yesterday the x-rays showed what appeared to be an infection in his lung, which might explain some of his problems. The doctor started him on an antibiotic right away, and we are hopeful this will clear up the infection quickly.
That did mean, however, that poor Colin has to go at least one more day without food, which is making him crabby. (I understand, it has the same effect on me.) Colin has gotten used to having food in his stomach, and now he will open his mouth and make sucking noises and then cry (silently, of course, but it’s obvious he is crying when you look at his face). It is hard to watch him and know he is hungry, but not be able to do anything about it.
He has continued to have many desats, and the nurses have been forced to raise both the pressure and the oxygen levels on his ventilator several times to bring him back up. Today, after our morning visit, the doctor called and left a message saying they had switched Colin to a different ventilator because he was concerned the one Colin had been on was putting too much pressure on his lungs. Unfortunately, I couldn’t dig my phone out of my bag in time to catch the call, so I didn’t get more details. John is there now and will find out more.
Veronica has also suffered a small setback in the form of an increase in the number and frequency of her bradys. Because the cause is most likely reflux, we started her on medication this morning. It will take four to five days for it to start working, so we should know by the end of the week whether that was indeed the problem.
On the bright side, Colin and Veronica got to have a nice visit with my family. We learned from our mistake when John’s family came to visit last week — and we left the camera sitting on the counter at home. This time we brought it with, and remembered at the end of the visit to actually pull it out and use it. So here are a couple of new photos of Veronica, the only one who can come out and play right now.
Ethan wasn’t able to come in, but we did open the shades so he could see his little sister and brother. He was excited to be able to do that again, and is looking forward to his next visit.
Grandma with Veronica:
Grandpa with Veronica:
Unfortunately, while Colin has been gaining weight, he is still struggling with his breathing. Yesterday the x-rays showed what appeared to be an infection in his lung, which might explain some of his problems. The doctor started him on an antibiotic right away, and we are hopeful this will clear up the infection quickly.
That did mean, however, that poor Colin has to go at least one more day without food, which is making him crabby. (I understand, it has the same effect on me.) Colin has gotten used to having food in his stomach, and now he will open his mouth and make sucking noises and then cry (silently, of course, but it’s obvious he is crying when you look at his face). It is hard to watch him and know he is hungry, but not be able to do anything about it.
He has continued to have many desats, and the nurses have been forced to raise both the pressure and the oxygen levels on his ventilator several times to bring him back up. Today, after our morning visit, the doctor called and left a message saying they had switched Colin to a different ventilator because he was concerned the one Colin had been on was putting too much pressure on his lungs. Unfortunately, I couldn’t dig my phone out of my bag in time to catch the call, so I didn’t get more details. John is there now and will find out more.
Veronica has also suffered a small setback in the form of an increase in the number and frequency of her bradys. Because the cause is most likely reflux, we started her on medication this morning. It will take four to five days for it to start working, so we should know by the end of the week whether that was indeed the problem.
On the bright side, Colin and Veronica got to have a nice visit with my family. We learned from our mistake when John’s family came to visit last week — and we left the camera sitting on the counter at home. This time we brought it with, and remembered at the end of the visit to actually pull it out and use it. So here are a couple of new photos of Veronica, the only one who can come out and play right now.
Ethan wasn’t able to come in, but we did open the shades so he could see his little sister and brother. He was excited to be able to do that again, and is looking forward to his next visit.
Grandma with Veronica:
Grandpa with Veronica:
Friday, July 23, 2010
Happy Three-Week Birthday Babies
We’ve made it to three weeks, and everyone is staying stable. Veronica is on continuous feeds now (rather than a feeding every three hours through her tube) to see if that will make a difference with the number of brady episodes she is having. Yesterday, she still had several episodes, but today she has only had two — so it may be working.
Colin is still not getting breast milk (until Sunday at least) to see if he can clear out the gas bubble. His x-ray this morning looked a little worse, so again they’re doing blood work to make sure he doesn’t have an infection. But he has settled down and is no longer hyper-sensitive to touch. They also have been able to drop both the pressure and the oxygen level on his ventilator, which is a good thing.
All in all, I would categorize it as a successful birthday. I got to hold both of them (one after the other) this morning, all snuggled in against my chest. They both seem to enjoy being held like this, and Colin in particular is able to really wiggle his way into a comfortable position — one advantage of being smaller I guess. John managed to get some pictures of Colin in his little kangaroo pose, and I will try to get those downloaded and posted tomorrow. Something for everyone to look forward to.
Colin is still not getting breast milk (until Sunday at least) to see if he can clear out the gas bubble. His x-ray this morning looked a little worse, so again they’re doing blood work to make sure he doesn’t have an infection. But he has settled down and is no longer hyper-sensitive to touch. They also have been able to drop both the pressure and the oxygen level on his ventilator, which is a good thing.
All in all, I would categorize it as a successful birthday. I got to hold both of them (one after the other) this morning, all snuggled in against my chest. They both seem to enjoy being held like this, and Colin in particular is able to really wiggle his way into a comfortable position — one advantage of being smaller I guess. John managed to get some pictures of Colin in his little kangaroo pose, and I will try to get those downloaded and posted tomorrow. Something for everyone to look forward to.
Thursday, July 22, 2010
Colin’s turn for a first
Well, today Colin finally got to do something Veronica hasn’t accomplished yet: He was able to flip himself over in his isolette. (No, he shouldn’t be able to do this yet, even if he had been born at full term. I think he’s just overly strong because of all the time he spent kicking Veronica before they were born.)
Colin is the strong man of the under two pounds set — something the nurses comment on whenever they have to bathe him or change his diaper. For a little guy, he is pretty good at kicking or swatting away hands he doesn’t want near him.
Earlier this week, while I was holding him, Colin managed to lift up his head and turn it so he was facing me, rather than away from me. And two days ago, the nurse put Colin on his tummy for a while. While John was with him, Colin managed to work his legs under himself and scoot into a different position.
But today, again while he was on his tummy, Colin managed to push off enough with those legs to flip himself back onto his back. (Early signs of a potential soccer player?)
To be fair to Veronica, she is at a disadvantage in the attempting to flip over contest (if there were such a thing) because she spends all her time now wrapped up like a burrito. But I’m happy for Colin that he’ll be able to look back and have something he can brag about doing ahead of his sister.
Colin remains off his feedings today. The x-ray showed a large gas bubble in his stomach, which was most likely the cause of his spitting up. It is moving its way through, but the doctor wants to wait until it is gone before starting Colin on the milk again — this time with fewer calories in the fortification.
And Veronica also has made progress today and is one step closer to being off the oxygen. She still is getting oxygen through the cannula, but it is no longer being blown into her nose. It is just there in case she needs it.
All in all, a pretty good day for the kids, even if I wasn’t able to go see them.
Colin is the strong man of the under two pounds set — something the nurses comment on whenever they have to bathe him or change his diaper. For a little guy, he is pretty good at kicking or swatting away hands he doesn’t want near him.
Earlier this week, while I was holding him, Colin managed to lift up his head and turn it so he was facing me, rather than away from me. And two days ago, the nurse put Colin on his tummy for a while. While John was with him, Colin managed to work his legs under himself and scoot into a different position.
But today, again while he was on his tummy, Colin managed to push off enough with those legs to flip himself back onto his back. (Early signs of a potential soccer player?)
To be fair to Veronica, she is at a disadvantage in the attempting to flip over contest (if there were such a thing) because she spends all her time now wrapped up like a burrito. But I’m happy for Colin that he’ll be able to look back and have something he can brag about doing ahead of his sister.
Colin remains off his feedings today. The x-ray showed a large gas bubble in his stomach, which was most likely the cause of his spitting up. It is moving its way through, but the doctor wants to wait until it is gone before starting Colin on the milk again — this time with fewer calories in the fortification.
And Veronica also has made progress today and is one step closer to being off the oxygen. She still is getting oxygen through the cannula, but it is no longer being blown into her nose. It is just there in case she needs it.
All in all, a pretty good day for the kids, even if I wasn’t able to go see them.
New Pictures of the Wee Little Ones
As promised, here are some new pictures of The Wee Little Ones, as Ethan has taken to calling them.
Unfortunately, I have a cold, so I am not able to go visit today (and until I’m completely better). That leaves more time for calling on all of the bills and insurance-related things I need to take care of, but no time for snuggling. I am happy, though, that John is feeling fine and is able to provide Veronica and Colin some daddy attention so they don’t feel neglected.
Here is a picture of Colin with his eyes open. It’s a little blurry — one of the pains of taking a photo through a curved plastic cover — but I wanted to post it anyway, since we don’t get as many chances to see him awake and alert.
And here is a not blurry picture of him with his eyes closed. Because of the bright lights in the NICU, he generally keeps his eyes closed to block out at least some of the stimulus. Unfortunately, there is no way to dampen down the noise from all of the alarms associated with the 10 babies (on average) living in the NICU currently.
And, finally, here is a picture of the little burrito — aka Veronica — as she spends her days now, all wrapped up but no longer needing a heated bed. By next week, she should be off the oxygen too, and we’ll be able to see her face without any tubes.
Unfortunately, I have a cold, so I am not able to go visit today (and until I’m completely better). That leaves more time for calling on all of the bills and insurance-related things I need to take care of, but no time for snuggling. I am happy, though, that John is feeling fine and is able to provide Veronica and Colin some daddy attention so they don’t feel neglected.
Here is a picture of Colin with his eyes open. It’s a little blurry — one of the pains of taking a photo through a curved plastic cover — but I wanted to post it anyway, since we don’t get as many chances to see him awake and alert.
And here is a not blurry picture of him with his eyes closed. Because of the bright lights in the NICU, he generally keeps his eyes closed to block out at least some of the stimulus. Unfortunately, there is no way to dampen down the noise from all of the alarms associated with the 10 babies (on average) living in the NICU currently.
And, finally, here is a picture of the little burrito — aka Veronica — as she spends her days now, all wrapped up but no longer needing a heated bed. By next week, she should be off the oxygen too, and we’ll be able to see her face without any tubes.
Wednesday, July 21, 2010
Getting Bigger
You know your perspective has become skewed when you look at your little baby and talk about how huge she’s getting because she now weighs more than 4 pounds. That’s right, Veronica now tips the scale at a little over 4 pounds — up more than half a pound from her birth weight. And compared to Colin, who is approaching the 2-pound mark, Veronica is a giant.
Veronica and Colin have very little in common, as is evident by their size differences. They keep throwing the doctor off a bit because Veronica “acts” like a 32 week baby (she’s really only 30 weeks 5 days), and Colin “acts” like he is only 28 weeks (beyond the size differences). We’re certainly going to confuse people when both babies are home, at least until Colin catches up: “How did those people get two babies so close in age. They can’t possibly be twins.”
Colin had been doing very well on his feeds until this morning. While I was sitting with him, he spit up. In a normal baby, this wouldn’t be a problem. But because of Colin’s growth restriction, it’s a sign of a problem. Colin’s tummy was also very big, which was making it harder for him to breathe, since his diaphragm was being pushed into his lungs. (I could identify, since the same thing happened to me while I was pregnant.)
So the doctor decided to suspend his feedings for a day, and see how he is doing tomorrow. They just started fortifying Colin’s milk with extra calories, so we’re hoping he just wasn’t responding well to the extra calories. A less encouraging possibility is that Colin is developing an infection — his biggest risk at this stage in the game. To check against that possibility, they are testing his stool for bacteria and have done x-rays to make sure everything internally looks okay. We’ll find out more tomorrow.
Colin’s other main problem is the lack of progress we are making in getting him weaned off the respirator. At the rate we are progressing now, the doctor estimates it will be at least another 14 days before he is ready to come off it. So now we are looking at putting him on steroids to help speed up that process.
Unfortunately, like so many decisions we have had to make about Colin already in his short life, this is not an easy decision. The steroids increase the risk of problems with neural development, meaning an increased risk of some sort of developmental delays or damage. However, staying on the ventilator increases Colin’s risk of lung damage, and could also cause problems with neural development.
When we were discussing the possibility this morning, the doctor told us that in their experience at Illinois Masonic, they have found the risks are highest for babies given the steroids in the first two weeks of life. Since Colin will be three weeks old on Friday, if we choose to follow the medication route, waiting until next week to move forward should greatly reduce the risk of problems. But still … there are no guarantees.
So once again, we are left trying to peer into the future and decide which path will give Colin the best overall outcome for a healthy, normal life, which is no easy task. Nor is it a position I ever wanted to be put in, playing God with my child’s future. (Although I suppose we do that in small ways every day with the decisions we make. It’s just this time, someone is outlining the potential consequences for us.)
Right now, however, I’m feeling optimistic about both Colin’s eating problem and the future in general. Who knows how I’ll feel when I wake up tomorrow, but I do find having a positive outlook generally comes in handy.
Tomorrow, I promise, I will get the new photos downloaded from the camera and posted for everyone to see.
Veronica and Colin have very little in common, as is evident by their size differences. They keep throwing the doctor off a bit because Veronica “acts” like a 32 week baby (she’s really only 30 weeks 5 days), and Colin “acts” like he is only 28 weeks (beyond the size differences). We’re certainly going to confuse people when both babies are home, at least until Colin catches up: “How did those people get two babies so close in age. They can’t possibly be twins.”
Colin had been doing very well on his feeds until this morning. While I was sitting with him, he spit up. In a normal baby, this wouldn’t be a problem. But because of Colin’s growth restriction, it’s a sign of a problem. Colin’s tummy was also very big, which was making it harder for him to breathe, since his diaphragm was being pushed into his lungs. (I could identify, since the same thing happened to me while I was pregnant.)
So the doctor decided to suspend his feedings for a day, and see how he is doing tomorrow. They just started fortifying Colin’s milk with extra calories, so we’re hoping he just wasn’t responding well to the extra calories. A less encouraging possibility is that Colin is developing an infection — his biggest risk at this stage in the game. To check against that possibility, they are testing his stool for bacteria and have done x-rays to make sure everything internally looks okay. We’ll find out more tomorrow.
Colin’s other main problem is the lack of progress we are making in getting him weaned off the respirator. At the rate we are progressing now, the doctor estimates it will be at least another 14 days before he is ready to come off it. So now we are looking at putting him on steroids to help speed up that process.
Unfortunately, like so many decisions we have had to make about Colin already in his short life, this is not an easy decision. The steroids increase the risk of problems with neural development, meaning an increased risk of some sort of developmental delays or damage. However, staying on the ventilator increases Colin’s risk of lung damage, and could also cause problems with neural development.
When we were discussing the possibility this morning, the doctor told us that in their experience at Illinois Masonic, they have found the risks are highest for babies given the steroids in the first two weeks of life. Since Colin will be three weeks old on Friday, if we choose to follow the medication route, waiting until next week to move forward should greatly reduce the risk of problems. But still … there are no guarantees.
So once again, we are left trying to peer into the future and decide which path will give Colin the best overall outcome for a healthy, normal life, which is no easy task. Nor is it a position I ever wanted to be put in, playing God with my child’s future. (Although I suppose we do that in small ways every day with the decisions we make. It’s just this time, someone is outlining the potential consequences for us.)
Right now, however, I’m feeling optimistic about both Colin’s eating problem and the future in general. Who knows how I’ll feel when I wake up tomorrow, but I do find having a positive outlook generally comes in handy.
Tomorrow, I promise, I will get the new photos downloaded from the camera and posted for everyone to see.
Tuesday, July 20, 2010
Breakthroughs
Yesterday was a big day for Colin and Veronica, in their very different ways: Veronica is on the verge of moving into a crib and Colin felt enough like himself to interact with John.
They have been weaning Veronica off the heated isolette for several days now, wrapping her in blankets and lowering the temperature of her bed. As she has gained weight, she has done very well at keeping her body temperature stable — with the blankets — to the point that she is now ready to move into a crib (which in the NICU means an open bed like they put most newborns in, rather than a covered isolette). This is a very big step for her, and an important skill to master before she can come home.
Veronica’s nurse yesterday told me they also may be able to take her off the oxygen soon, since she is essentially breathing on her own already. While we’re in no rush to get her off the oxygen, it will be much easier to hold her when she is no longer attached to so many tubes and wires.
She is continuing to have the bradys — where her heart rate drops — from time to time. The doctor tried putting her on continuous feeds last night for an hour to see if the slower pace of feeding this way cut down on the episodes — testing the theory about the reflux. John was there during this period, and she still had two drops, but she seems to have more episodes while we’re holding her than when she’s in her bed. We wonder if it has to do with her position when she is in our arms.
After several rough days, Colin seems to have (at least for the moment) turned a corner. He still seems very sensitive to touch and gets worked up at diaper change time. But last night while John was visiting him, Colin spent half an hour interacting with John — eyes open and watching what John was doing, reaching for his finger, showing off his good grip. As John said when he got home, it was great to see the real Colin again for a while.
They have been weaning Veronica off the heated isolette for several days now, wrapping her in blankets and lowering the temperature of her bed. As she has gained weight, she has done very well at keeping her body temperature stable — with the blankets — to the point that she is now ready to move into a crib (which in the NICU means an open bed like they put most newborns in, rather than a covered isolette). This is a very big step for her, and an important skill to master before she can come home.
Veronica’s nurse yesterday told me they also may be able to take her off the oxygen soon, since she is essentially breathing on her own already. While we’re in no rush to get her off the oxygen, it will be much easier to hold her when she is no longer attached to so many tubes and wires.
She is continuing to have the bradys — where her heart rate drops — from time to time. The doctor tried putting her on continuous feeds last night for an hour to see if the slower pace of feeding this way cut down on the episodes — testing the theory about the reflux. John was there during this period, and she still had two drops, but she seems to have more episodes while we’re holding her than when she’s in her bed. We wonder if it has to do with her position when she is in our arms.
After several rough days, Colin seems to have (at least for the moment) turned a corner. He still seems very sensitive to touch and gets worked up at diaper change time. But last night while John was visiting him, Colin spent half an hour interacting with John — eyes open and watching what John was doing, reaching for his finger, showing off his good grip. As John said when he got home, it was great to see the real Colin again for a while.
Sunday, July 18, 2010
Mixed Blessings
I have to admit that going back and forth to the hospital every day (even though it is just a short trip) is exhausting. I keep falling asleep while sitting with Colin and holding Veronica — quite a feat considering how noisy the NICU is. But I wouldn’t miss the opportunity to be with them, so I guess I’ll take my naps like a cat — often and where ever the mood strikes.
Colin continues to do well on his feedings and will be going up to 3 ml every hour starting this evening. He has started putting on some weight as a result, and is now approaching 2 pounds. Unfortunately, he is still struggling to breathe and continues to have many bad periods with much desating.
Last night, according to his nurse, was not a good night for him, nor was this morning. Every time they had to change him or check on him, he would get very angry and worked up, and then his blood oxygen levels would start dropping for a long time. I desperately would like to hold him again, but the transition seems to make him very unhappy (even though he settles down and is very calm while we hold him) and I'm afraid that holding him will only make things worse. So I try to content myself with just sitting by him and holding his hand.
This morning Colin had more fluid in his lungs, so the doctor started him back on the medication to clear that out. They have had to raise the pressure on his respirator again to compensate, which takes us further away from our goal of weaning him off it.
John did call from the hospital tonight to say that the nurse pulled Colin’s respirator tube out some (so it’s not as far in his lungs), and that seems to be making it easier for him to breathe. They also discovered that if they raise his oxygen levels before trying to change his diaper, he doesn’t seem to get as worked up. Thank goodness for creative nurses. We’re hopeful that he’ll get a good night’s sleep tonight.
Veronica continues to progress much faster than expected. Her nurse today told me she keeps forgetting that Veronica is only at the equivalent of 30 weeks because she “acts” so much older. (The doctor said the same thing earlier.)
She is up to an ounce of milk every three hours, and is not spitting anything up. She also is starting to open her mouth and make sucking motions when she is hungry or eating, which is good for being able to start feeding her by mouth. The earliest we’ll be able to try that will be in two weeks — I am very excited for that. It will be another big milestone for Veronica, and for us.
Colin continues to do well on his feedings and will be going up to 3 ml every hour starting this evening. He has started putting on some weight as a result, and is now approaching 2 pounds. Unfortunately, he is still struggling to breathe and continues to have many bad periods with much desating.
Last night, according to his nurse, was not a good night for him, nor was this morning. Every time they had to change him or check on him, he would get very angry and worked up, and then his blood oxygen levels would start dropping for a long time. I desperately would like to hold him again, but the transition seems to make him very unhappy (even though he settles down and is very calm while we hold him) and I'm afraid that holding him will only make things worse. So I try to content myself with just sitting by him and holding his hand.
This morning Colin had more fluid in his lungs, so the doctor started him back on the medication to clear that out. They have had to raise the pressure on his respirator again to compensate, which takes us further away from our goal of weaning him off it.
John did call from the hospital tonight to say that the nurse pulled Colin’s respirator tube out some (so it’s not as far in his lungs), and that seems to be making it easier for him to breathe. They also discovered that if they raise his oxygen levels before trying to change his diaper, he doesn’t seem to get as worked up. Thank goodness for creative nurses. We’re hopeful that he’ll get a good night’s sleep tonight.
Veronica continues to progress much faster than expected. Her nurse today told me she keeps forgetting that Veronica is only at the equivalent of 30 weeks because she “acts” so much older. (The doctor said the same thing earlier.)
She is up to an ounce of milk every three hours, and is not spitting anything up. She also is starting to open her mouth and make sucking motions when she is hungry or eating, which is good for being able to start feeding her by mouth. The earliest we’ll be able to try that will be in two weeks — I am very excited for that. It will be another big milestone for Veronica, and for us.
Thursday, July 15, 2010
Rollercoaster
It’s been a bit of a rollercoaster ride for us this week — especially with Colin. We’ve had some scares (not unexpected, but unwanted none the less) and some causes to celebrate.
On the up side: Colin is finally able to digest milk. He has been on a continuous feed getting .5 ml every hour for nearly two days now and has not had any problems with digesting. Tonight, they plan to increase the continuous feed to 1 ml every hour. It’s still a minuscule amount, but the fact that his digestive system is able to keep up is good news.
Also good news is that Colin finally pooped yesterday. (Sorry to all of you non-parents who find discussions of babies’ elimination habits distasteful.) We were starting to get worried because he hadn’t gone yet; a week and a half after delivery is a LONG time to go without any poopy diapers. Now that he is “eating,” we should be seeing more dirty diapers, which right now is good news.
On the down side, Colin’s lungs are starting to show signs of damage because from the ventilator. Not an unexpected development, but we are really hoping to be able to wean him from it soon before the damage becomes irreversible. Last night they started him on medication that is intended to loosen up some of the “gunk” in his lungs so they can suction them out. After the lungs are clear, we may be able to start the weaning process again.
Today, after giving us a scare this morning by losing his IV (and it taking a very long time for the nurses to find another vein), Colin settled in and had an uneventful afternoon. His saturation levels have stabilized again, and by dinner time I was able to hold him again — this time for nearly two hours.
Today I started to feel like the mother of twins. I went straight from holding Colin to changing Veronica’s dirty diaper and then feeding her. In the process of feeding her, she spit up all over herself (and me). It was almost normal.
Veronica continues to push her way toward the doors. She has moved into Nursery 3 today, and is being weaned off the heated isolette. She currently is getting used to wearing a shirt and being wrapped up. If she is able to handle that and keep her body temperature stable, she can move into an open bed.
Veronica also continues to do well on the increased feedings. Today she was up to 25 ml every 3 hours, with added calories. The doctor was hoping to take her off the IV as soon as tomorrow, but she has been spitting up some of the food at this new level so we decided to wait another day or two before adding more calories in. While this means she’ll have to keep the IV for a few more days, I think it is better to let her get used to the feeding. She is still only at 30 weeks (gestational age).
Tomorrow will mark the end of our second week. I am praying for a boring and uneventful day to celebrate.
Here is a picture of Veronica getting in some tummy time yesterday.
And here is Colin with John’s hand to help provide a sense of scale as to how small he really is. (His shin is about the same size as my pointer finger; he can just wrap his hand around the tip of my finger.)
On the up side: Colin is finally able to digest milk. He has been on a continuous feed getting .5 ml every hour for nearly two days now and has not had any problems with digesting. Tonight, they plan to increase the continuous feed to 1 ml every hour. It’s still a minuscule amount, but the fact that his digestive system is able to keep up is good news.
Also good news is that Colin finally pooped yesterday. (Sorry to all of you non-parents who find discussions of babies’ elimination habits distasteful.) We were starting to get worried because he hadn’t gone yet; a week and a half after delivery is a LONG time to go without any poopy diapers. Now that he is “eating,” we should be seeing more dirty diapers, which right now is good news.
On the down side, Colin’s lungs are starting to show signs of damage because from the ventilator. Not an unexpected development, but we are really hoping to be able to wean him from it soon before the damage becomes irreversible. Last night they started him on medication that is intended to loosen up some of the “gunk” in his lungs so they can suction them out. After the lungs are clear, we may be able to start the weaning process again.
Today, after giving us a scare this morning by losing his IV (and it taking a very long time for the nurses to find another vein), Colin settled in and had an uneventful afternoon. His saturation levels have stabilized again, and by dinner time I was able to hold him again — this time for nearly two hours.
Today I started to feel like the mother of twins. I went straight from holding Colin to changing Veronica’s dirty diaper and then feeding her. In the process of feeding her, she spit up all over herself (and me). It was almost normal.
Veronica continues to push her way toward the doors. She has moved into Nursery 3 today, and is being weaned off the heated isolette. She currently is getting used to wearing a shirt and being wrapped up. If she is able to handle that and keep her body temperature stable, she can move into an open bed.
Veronica also continues to do well on the increased feedings. Today she was up to 25 ml every 3 hours, with added calories. The doctor was hoping to take her off the IV as soon as tomorrow, but she has been spitting up some of the food at this new level so we decided to wait another day or two before adding more calories in. While this means she’ll have to keep the IV for a few more days, I think it is better to let her get used to the feeding. She is still only at 30 weeks (gestational age).
Tomorrow will mark the end of our second week. I am praying for a boring and uneventful day to celebrate.
Here is a picture of Veronica getting in some tummy time yesterday.
And here is Colin with John’s hand to help provide a sense of scale as to how small he really is. (His shin is about the same size as my pointer finger; he can just wrap his hand around the tip of my finger.)
Tuesday, July 13, 2010
(Not quite) equal time for Colin
I was finally able to hold Colin on the 11th. His nurse told John that morning that I would be able to kangaroo with him if I wanted. He had been relatively stable for a while, so they were willing to try it. So I came prepared, and was rewarded with a snuggle that lasted about an hour and 15 minutes.
We weren’t sure how well Colin would be able to tolerate the transition and being held, but he settled in right away, sighed and fell asleep. His saturation and heart rate levels evened out right away, and his respiration settled back in to the right zone very quickly too. He just kept snuggling down lower on my chest so that we had to move him back up several times. If my back hadn’t been killing me, I could have stayed like that forever. But he needed to get back “home” to his isolette anyway so he would have time to settle back down before they had to do his blood gas levels again.
John was able to kangaroo with Colin last night, and also enjoyed the experience of finally being able to hold our little boy. Unfortunately, later last night Colin starting have problems with his saturation levels again, so it likely will be a while before he has stabilized enough for us to try holding him again.
Because Ethan has camp in the mornings this week and next, John and I have been able to go over to the NICU together and spend time with the twins. We only get about an hour and a half with them, but they each have one of us with them so they’re getting double the benefit.
Veronica continues to do well. She is still having the bradycardias (she had one last night after John left, and one this morning while we were visiting), so the nurse thought they were going to increase her caffeine to try and get them to stop. Her feeds (of breast milk) continue to increase in volume, and she does not seem to be having any trouble with digesting the milk.
Colin was still desating (low blood oxygen saturation levels) while we were there this morning, and they have increased his oxygen on the ventilator as a result. We need to keep him as still as possible until he stabilizes again, which means minimal contact with him. I was able to hold his hand for about 45 minutes, and that seemed to help some.
Ethan was finally able to meet Veronica — which was the high point of the past two weeks for all of us. Since that is really his story, I’ll update his blog (www.vegheadtales.blogspot.com) later this evening with the complete story for those who would like to read it. I also will post some photos later today.
Sunday, July 11, 2010
The electric toothbrush, our friend
After a rough end to his first week of life, Colin has stabilized and is working on gaining ground again. Yesterday morning he was still having some problems breathing and clearing out the CO2, thanks to his collapsed lung. To help clear out the fluid that was building up, Colin’s nurse gave him a special chest massage — with an electric toothbrush. Its vibrations were breaking up the secretions in his lung, which allowed the nurse to suction out more “gunk” so he could breath better.
This appears to have worked, because last night they were able to lower the levels on his ventilator again, and his heart and respiration rates were back down to normal levels. The nurse said his chest x-ray last night looked a little better. He also has gained back at least most of the weight he had lost (his weight has been a bit like a yo yo, going up and down); last night Colin tipped the scales at 1 pound 10 ounces.
I’m hoping he continues to gain weight now — despite the fact that we’ve had to stop his feedings — because I believe he needs to be over 2 pounds before we’re allowed to hold him.
Veronica continues to do quite well, and is up to getting 15 ml of breast milk at every feeding. These are still going into her tummy through a tube — she won’t be able to try sucking for another couple of weeks — but she continues to digest the food well, and is putting on weight.
Both John and I were able to spend a lot of time holding Veronica yesterday, which was wonderful. We also were each able to “feed” her (hold the tube with the milk up over her head). And, during my second visit last night, I was finally able to kangaroo with her, holding her skin to skin against my chest for about 2 hours. I was a very happy puddle of sweat when I finally put her back in the incubator to go visit Colin.
So we are hoping this week that Colin’s lung continues to improve (with or without more help from the toothbrush), and that he continues to put on weight. Now that we have been able to hold Veronica more consistently, we both are really looking forward to having the same experience with Colin.
This appears to have worked, because last night they were able to lower the levels on his ventilator again, and his heart and respiration rates were back down to normal levels. The nurse said his chest x-ray last night looked a little better. He also has gained back at least most of the weight he had lost (his weight has been a bit like a yo yo, going up and down); last night Colin tipped the scales at 1 pound 10 ounces.
I’m hoping he continues to gain weight now — despite the fact that we’ve had to stop his feedings — because I believe he needs to be over 2 pounds before we’re allowed to hold him.
Veronica continues to do quite well, and is up to getting 15 ml of breast milk at every feeding. These are still going into her tummy through a tube — she won’t be able to try sucking for another couple of weeks — but she continues to digest the food well, and is putting on weight.
Both John and I were able to spend a lot of time holding Veronica yesterday, which was wonderful. We also were each able to “feed” her (hold the tube with the milk up over her head). And, during my second visit last night, I was finally able to kangaroo with her, holding her skin to skin against my chest for about 2 hours. I was a very happy puddle of sweat when I finally put her back in the incubator to go visit Colin.
So we are hoping this week that Colin’s lung continues to improve (with or without more help from the toothbrush), and that he continues to put on weight. Now that we have been able to hold Veronica more consistently, we both are really looking forward to having the same experience with Colin.
Friday, July 9, 2010
Happy 1-week birthday
Veronica and Colin celebrated their first week of life today — well, I guess it would be more fair to say we celebrated for them. It feels like they have been with us for much, much longer.
Unfortunately, I don’t think Colin felt much of the celebration, as he had his worst day so far. Last night the upper right part of his lung collapsed — he is breathing okay now, but the lung still is not fully inflating. He also was not able to process the breast milk again last night, and they had to suction a lot of “goop” out of his stomach and stop the feedings again.
This morning, Colin’s heart rate dropped very low, and his respiration levels were very high. At one point, the nurses sent John away and several were working on getting him stabilized again. John said it was pretty scary to see him being worked on like that. (And I can say it was very scary to hear about it after the fact.)
By the time I got over to the NICU late this afternoon for my visit, they had decided some of Colin’s problems might stem from anemia, so he was getting his second transfusion when I arrived. Colin’s nurse was a little concerned because his heart rate was now very high, as was his respiration rate. But she thought it might be at least partially because of the transfusion.
Colin very clearly responds to John and I while we’re visiting — his vital signs tend to fall closer to normal and he has fewer spikes or drops while we’re there. This was the case this afternoon as well. I was able to bring Colin’s respiration rate down to where it should be by sitting with him and holding his hand and feet. His heart rate also dropped some, although it remained high. He seemed to be doing a little better by the time I left.
Veronica continues to do well, and has become a very mellow baby. She is up to 11 ml of breast milk every 4 hours, and has put on weight. She continues to have the bradycardia episodes (where her heart rate drops very low), but is able to pull out of them on her own for the most part. The nurse today told me she thinks the bradys may be related to reflux, since Veronica seems consistently to have an episode about an hour after she has eaten. If that proves to be the case, they likely will start Veronica on prevacid to treat the reflux.
Unfortunately, I don’t think Colin felt much of the celebration, as he had his worst day so far. Last night the upper right part of his lung collapsed — he is breathing okay now, but the lung still is not fully inflating. He also was not able to process the breast milk again last night, and they had to suction a lot of “goop” out of his stomach and stop the feedings again.
This morning, Colin’s heart rate dropped very low, and his respiration levels were very high. At one point, the nurses sent John away and several were working on getting him stabilized again. John said it was pretty scary to see him being worked on like that. (And I can say it was very scary to hear about it after the fact.)
By the time I got over to the NICU late this afternoon for my visit, they had decided some of Colin’s problems might stem from anemia, so he was getting his second transfusion when I arrived. Colin’s nurse was a little concerned because his heart rate was now very high, as was his respiration rate. But she thought it might be at least partially because of the transfusion.
Colin very clearly responds to John and I while we’re visiting — his vital signs tend to fall closer to normal and he has fewer spikes or drops while we’re there. This was the case this afternoon as well. I was able to bring Colin’s respiration rate down to where it should be by sitting with him and holding his hand and feet. His heart rate also dropped some, although it remained high. He seemed to be doing a little better by the time I left.
Veronica continues to do well, and has become a very mellow baby. She is up to 11 ml of breast milk every 4 hours, and has put on weight. She continues to have the bradycardia episodes (where her heart rate drops very low), but is able to pull out of them on her own for the most part. The nurse today told me she thinks the bradys may be related to reflux, since Veronica seems consistently to have an episode about an hour after she has eaten. If that proves to be the case, they likely will start Veronica on prevacid to treat the reflux.
Thursday, July 8, 2010
Graduation Day!
Last night, Veronica “graduated” out of the most critical section of the NICU and into one of the nurseries. Her progress has been very fast and consistent, and the only problems she has been having (jaundice and an occasional drop in her heart rate) are “normal” and should clear up shortly.
Perhaps most exciting about this move is that we will now be able to set up a time when Ethan can come into the NICU and meet his little sister. I know not being able to meet the twins has been hard on him, although he has been taking it quite well. So as soon as we can get his immunization records picked up, we can talk to the head nurse and schedule their first meeting.
Colin, unfortunately, will remain in the critical care section for quite some time, which is understandable given how tiny he is.
The doctor is not sure the vein in Colin’s heart closed. The vein appeared closed in the echocardiogram, but his blood pressure is still showing too large a gap between the numbers. This leads the doctor to believe it has not closed. (The vein may be opening and closing, which would explain why it appeared closed in the echo picture.)
They did a repeat echocardiogram last night, and if it does remain open, Colin will go back on the medication to see if a second round will close the vein. If not, we’ll have to bring in the cardiologist and see whether they should try a third round, or if Colin will need to have surgery to tie off the vein. Please pray for success on the medication — I would really prefer not to have Colin face surgery already.
Although he is still on the respirator (and will be for a while), Colin remains stable and they have been able to lower the amount of pressure and oxygen he needs. It’s hard some times to reconcile the rapid pace at which Veronica is progressing with Colin’s much slower progress. Intellectually, we know that he will take a much longer time to catch up to where he should be. Emotionally, the comparison between the two makes it seem slower.
Right now, the doctors think Veronica should be able to come home at about six weeks (so mid-August). Colin is probably going to be in the hospital for at least 3 months, though. So we will be able to continue to ease into the practicalities of having twins.
Perhaps most exciting about this move is that we will now be able to set up a time when Ethan can come into the NICU and meet his little sister. I know not being able to meet the twins has been hard on him, although he has been taking it quite well. So as soon as we can get his immunization records picked up, we can talk to the head nurse and schedule their first meeting.
Colin, unfortunately, will remain in the critical care section for quite some time, which is understandable given how tiny he is.
The doctor is not sure the vein in Colin’s heart closed. The vein appeared closed in the echocardiogram, but his blood pressure is still showing too large a gap between the numbers. This leads the doctor to believe it has not closed. (The vein may be opening and closing, which would explain why it appeared closed in the echo picture.)
They did a repeat echocardiogram last night, and if it does remain open, Colin will go back on the medication to see if a second round will close the vein. If not, we’ll have to bring in the cardiologist and see whether they should try a third round, or if Colin will need to have surgery to tie off the vein. Please pray for success on the medication — I would really prefer not to have Colin face surgery already.
Although he is still on the respirator (and will be for a while), Colin remains stable and they have been able to lower the amount of pressure and oxygen he needs. It’s hard some times to reconcile the rapid pace at which Veronica is progressing with Colin’s much slower progress. Intellectually, we know that he will take a much longer time to catch up to where he should be. Emotionally, the comparison between the two makes it seem slower.
Right now, the doctors think Veronica should be able to come home at about six weeks (so mid-August). Colin is probably going to be in the hospital for at least 3 months, though. So we will be able to continue to ease into the practicalities of having twins.
Tuesday, July 6, 2010
Baby pictures
At long last, we’ve managed to get some pictures pulled together to share. Here are some shots of the babies' first days:This is Veronica and Colin at about 15 minutes old — together on their way to the NICU.
And here is Colin, one day old, hooked up to his ventilator:
And Veronica at one day old, also on her ventilator:
And here is Colin at 3 days, still on the ventilator, but 2 ounces bigger than at birth. Poor little guy is losing his hair because of the hat and mask he has to wear most of the time:
And Veronica at 3 days, off the ventilator and trying to suck on Mom’s finger:
And here is Colin, one day old, hooked up to his ventilator:
And Veronica at one day old, also on her ventilator:
And here is Colin at 3 days, still on the ventilator, but 2 ounces bigger than at birth. Poor little guy is losing his hair because of the hat and mask he has to wear most of the time:
And Veronica at 3 days, off the ventilator and trying to suck on Mom’s finger:
Holding Veronica
Yesterday morning I got to hold Veronica for the first time. I wasn’t able to do the kangaroo care with her (where she is snuggled against my chest in just her diaper for an hour), but the nurse was able to wrap up her cords securely and snuggle her in lots of blankets in my arms for about 20 minutes. It was beautiful to see her sleeping there, and I was so happy to have the chance to finally hold her.
John was, of course, jealous. But when he went back to the hospital last night for his long visit, he was able to hold Veronica for 40 minutes — so it was my turn to be jealous. Not seriously jealous, though. I’m glad he was able to hold her too, and I am sure before long we will both have many opportunities to hold her, so it will all balance out.
I also got to change Colin’s diaper yesterday too. His diapers are even tinier than Veronica’s, but I was ready for the cords this time so it was easier. Colin doesn’t like to be disturbed and tends to throw quite a fit for such a little guy. I do have somewhat of a size advantage on him at this stage, though.
Both babies were started on breast milk yesterday too (through their IV lines). Veronica got 3 ml and Colin got 1. Veronica did quite well with hers, but Colin seemed to have problems digesting it (because his system is so underdeveloped). Because of his problems, they’ve stopped feeding him temporarily and will try introducing the milk again soon.
Colin is still on his ventilator (and likely will be for some time). They’ve been able to drop his oxygen levels a bit, but he still needs far more oxygen than he would be able to get breathing on his own. We’ll have to continue being patient and celebrating the little things for Colin — his battle will be up hill for quite a while still.
Monday, July 5, 2010
Big gains
Big news: Colin has gained 2 ounces since they added fats into his diet. And when you’re talking about a baby that started out at just 1 pound 7 ounces, 2 ounces is BIG. He is still being fed through a tube in his umbilical cord (and will be for quite a while), but his body seems to be responding to the fats, which is what we want to see.
The doctor is planning to try a “real” feeding with Veronica very soon. They were thinking about doing it yesterday already, but she is getting some green drainage from her tubes, which may mean she is fighting off something. Because her digestive system is not fully developed, they don’t want to introduce anything new until they’re as certain as can be that she is ready.
Since I seem to be healing well, we decided to check out of the hospital yesterday in hopes of getting better sleep at home. In addition, Ethan is back from his great Wisconsin adventure, and we thought it might be easier for him if we’re all back under the same roof (at least the all of us who are able).
Being home is both good and bad. It’s nice to be able to be with my own stuff and not have the nurses and doctors coming in and out all the time. But on the other hand, you have to do stuff again — you can’t just push a button and ask one of the nurses to take care of it for you. I’m actually carrying around a little notebook to keep track of when I took what pill last and when I pumped. I feel a little like my life has been reduced to a spreadsheet.
The other down side of leaving the hospital, of course, is that the babies are not just down the hall. We actually have to plan when we want to visit. But we’ve worked out a mini schedule for today and tomorrow, and will adjust from there. It will be much easier when I’m allowed to drive or take the El again because my visits won’t have to be chauffeured.
John was able to get some good close up shots of Colin last night, and we have some closer shots of Veronica from earlier in the day so that you can actually get an idea of what they look like around all those tubes. I promise we’ll try to get some of those pictures posted today.
The doctor is planning to try a “real” feeding with Veronica very soon. They were thinking about doing it yesterday already, but she is getting some green drainage from her tubes, which may mean she is fighting off something. Because her digestive system is not fully developed, they don’t want to introduce anything new until they’re as certain as can be that she is ready.
Since I seem to be healing well, we decided to check out of the hospital yesterday in hopes of getting better sleep at home. In addition, Ethan is back from his great Wisconsin adventure, and we thought it might be easier for him if we’re all back under the same roof (at least the all of us who are able).
Being home is both good and bad. It’s nice to be able to be with my own stuff and not have the nurses and doctors coming in and out all the time. But on the other hand, you have to do stuff again — you can’t just push a button and ask one of the nurses to take care of it for you. I’m actually carrying around a little notebook to keep track of when I took what pill last and when I pumped. I feel a little like my life has been reduced to a spreadsheet.
The other down side of leaving the hospital, of course, is that the babies are not just down the hall. We actually have to plan when we want to visit. But we’ve worked out a mini schedule for today and tomorrow, and will adjust from there. It will be much easier when I’m allowed to drive or take the El again because my visits won’t have to be chauffeured.
John was able to get some good close up shots of Colin last night, and we have some closer shots of Veronica from earlier in the day so that you can actually get an idea of what they look like around all those tubes. I promise we’ll try to get some of those pictures posted today.
Sunday, July 4, 2010
Two little steps forward
We woke up this morning early (well … pretty normal for me, but very early for John) and went to see Veronica and Colin before the first shift change in the NICU. It was well worth the effort — overnight Colin was switched back to the regular ventilator and seemed to be tolerating it quite well. And, as we were celebrating that news, Veronica’s nurse asked me if I wanted to watch as they took out her ventilator because they were ready to do that now. Yeah!
So Veronica is now breathing on her own with just oxygen (through a cannula in her nose). She was very happily sucking on her first pacifier when I left to come back to my room. (She had already managed to get her thumb in, despite the ventilator, several times yesterday.) Perhaps one of the most exciting “side effects” of this was that we were able to hear her cry again. While crying babies are normally a bit distressing, when your baby hasn’t been able to make any sound, crying is music to your ears.
And while Colin is still on the ventilator, we’re relieved that he no longer needs the extra support of the oscillating ventilator. We also are encouraged because the doctor already has been able to lower the amount of oxygen Colin needs since the switch.
On a totally different note, I was very excited yesterday when I got to change Veronica’s diaper — my first in many years. It was so tiny and I had to work around all the little cords and tubes, but I managed to survive it (and so did she). It was nice to be able to do a “normal” parenting task for her.
While parenting a newborn in the NICU is a different route than we had ever envisioned, John and I feel very close to the babies and love them very much. And we remain cautiously optimistic and looking forward to eventually bringing them home.
So Veronica is now breathing on her own with just oxygen (through a cannula in her nose). She was very happily sucking on her first pacifier when I left to come back to my room. (She had already managed to get her thumb in, despite the ventilator, several times yesterday.) Perhaps one of the most exciting “side effects” of this was that we were able to hear her cry again. While crying babies are normally a bit distressing, when your baby hasn’t been able to make any sound, crying is music to your ears.
And while Colin is still on the ventilator, we’re relieved that he no longer needs the extra support of the oscillating ventilator. We also are encouraged because the doctor already has been able to lower the amount of oxygen Colin needs since the switch.
On a totally different note, I was very excited yesterday when I got to change Veronica’s diaper — my first in many years. It was so tiny and I had to work around all the little cords and tubes, but I managed to survive it (and so did she). It was nice to be able to do a “normal” parenting task for her.
While parenting a newborn in the NICU is a different route than we had ever envisioned, John and I feel very close to the babies and love them very much. And we remain cautiously optimistic and looking forward to eventually bringing them home.
Independence Day
Veronica continues to do very well in the NICU, staying stable and taking her treatments in stride. If she doesn’t suffer any setbacks, they are talking about possibly being able to start trying oral feedings with her next week. So we’re encouraged by her progress so far.
Colin, of course, is facing a much larger struggle. Last night they had to put him on a different ventilator (an oscillating ventilator) because his little lungs weren’t able to clear out the CO2 on the other ventilator and they were afraid if they turned it up any higher, they would damage his lungs. The oscillating ventilator hits him with more than 120 “little breaths” a minute, which creates a sort of whirlwind effect to drive the CO2 out.
John went down this morning for a quick visit and reported that the levels at Colin’s 6 a.m. test were encouraging and he appears to be responding well. Unfortunately, the new ventilator covers even more of his face so between it, the hat and the eye cover (for the bili lights), we can no longer see any of his face.
As soon as my pain medication kicks in, I’m planning to head back down the hall to spend some time with them and then we’ll see what today brings.
Colin, of course, is facing a much larger struggle. Last night they had to put him on a different ventilator (an oscillating ventilator) because his little lungs weren’t able to clear out the CO2 on the other ventilator and they were afraid if they turned it up any higher, they would damage his lungs. The oscillating ventilator hits him with more than 120 “little breaths” a minute, which creates a sort of whirlwind effect to drive the CO2 out.
John went down this morning for a quick visit and reported that the levels at Colin’s 6 a.m. test were encouraging and he appears to be responding well. Unfortunately, the new ventilator covers even more of his face so between it, the hat and the eye cover (for the bili lights), we can no longer see any of his face.
As soon as my pain medication kicks in, I’m planning to head back down the hall to spend some time with them and then we’ll see what today brings.
Saturday, July 3, 2010
How to find us this weekend
I completely forgot to include the information about how to find us. I'm at Illinois Masonic in Room 2427 until at least Monday. The direct number to my room is 773-296-8836. I'm off strict bedrest, so I'm able to go see the babies in the NICU. So I might not be easy to catch. But feel free to try us if you'd like.
Welcome Veronica and Colin
Yesterday afternoon, at 1:51 p.m., we welcomed Veronica Margaret into the world. One minute later, her brother Colin Frank joined us. Born at exactly 28 weeks, both babies were a little bigger than we had expected — Veronica weighed 3 pounds 6.5 ounces and was 16.5 inches long; little Colin weighed 1 pound 7 ounces and was 12.6 inches long.
Both babies were born strong — Veronica cried quite a bit, and Colin even managed a few cries, which is good for a baby as tiny as he is. They both were breathing on their own after birth (with oxygen, but without ventilator) and both John and I were able to see them for a few minutes before they were whisked away to the NICU.
They spent their first day in a pretty stable state, but both are on the ventilators at what the doctor called moderate levels now. The doctor expects Veronica will be able to get off the ventilator fairly quickly, but Colin may need its help for an extended time, because he is so small.
John has been able to spend a fair amount of time with Veronica and Colin in the NICU already, and I hope to be able to get over there this morning after shift change. We can’t hold them yet because they’re in the incubator isolettes, but John has been able to touch them and even hold Veronica’s hand.
I’m looking forward very much to getting to finally touch my little, tiny babies. I know we’re facing a long rolling road ahead before we get to bring them home, but I am grateful that they were able to get a strong start on their journey, despite their early arrival.
Both babies were born strong — Veronica cried quite a bit, and Colin even managed a few cries, which is good for a baby as tiny as he is. They both were breathing on their own after birth (with oxygen, but without ventilator) and both John and I were able to see them for a few minutes before they were whisked away to the NICU.
They spent their first day in a pretty stable state, but both are on the ventilators at what the doctor called moderate levels now. The doctor expects Veronica will be able to get off the ventilator fairly quickly, but Colin may need its help for an extended time, because he is so small.
John has been able to spend a fair amount of time with Veronica and Colin in the NICU already, and I hope to be able to get over there this morning after shift change. We can’t hold them yet because they’re in the incubator isolettes, but John has been able to touch them and even hold Veronica’s hand.
I’m looking forward very much to getting to finally touch my little, tiny babies. I know we’re facing a long rolling road ahead before we get to bring them home, but I am grateful that they were able to get a strong start on their journey, despite their early arrival.
Thursday, July 1, 2010
D-Day Minus One
By tomorrow afternoon, we should be welcoming little Colin Frank and Veronica Margaret into the “outside” world. Yesterday we did one last BPP (biophysical profile) on the babies, and they both passed with full marks — meaning they remain as healthy as possible based on their circumstances.
I also got another steroid shot yesterday (to help speed up lung development). We go back to the hospital this afternoon for the second steroid shot, and will be admitted to the hospital after that. The doctors also want to put me on magnesium sulfate for 12 hours before delivery (a horrible experience, from what everyone I know who has been on it tells me) because several studies have shown that it helps minimize the risk for neurological problems in very premature babies.
Now that we’re one day away from delivery, I’m trying hard not to think too much about what that means. Instead, I’m trying to be excited about actually meeting our little ones. Then we’re bracing ourselves for the next section of this crazy rollercoaster ride.
With luck, we may even be able to hold or touch them before they’re whisked off to the NICU (which I realize is unlikely to happen). And if not before, then after they’re settled in and I’m allowed to travel down the hall to visit.
We’ll try to get an update posted after things are stabilized tomorrow, and eventually, we may even manage to get some photos up. But I won’t making any big promises about how quickly that will happen.
I also got another steroid shot yesterday (to help speed up lung development). We go back to the hospital this afternoon for the second steroid shot, and will be admitted to the hospital after that. The doctors also want to put me on magnesium sulfate for 12 hours before delivery (a horrible experience, from what everyone I know who has been on it tells me) because several studies have shown that it helps minimize the risk for neurological problems in very premature babies.
Now that we’re one day away from delivery, I’m trying hard not to think too much about what that means. Instead, I’m trying to be excited about actually meeting our little ones. Then we’re bracing ourselves for the next section of this crazy rollercoaster ride.
With luck, we may even be able to hold or touch them before they’re whisked off to the NICU (which I realize is unlikely to happen). And if not before, then after they’re settled in and I’m allowed to travel down the hall to visit.
We’ll try to get an update posted after things are stabilized tomorrow, and eventually, we may even manage to get some photos up. But I won’t making any big promises about how quickly that will happen.
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