A lot has happened since the previous posting. Evan is now on a nasal canula just like his brother. He is requiring a little more oxygen than Aiden, but he is doing really well. Last week, the boys were doing a really good job of maintaining their body temperature. So… they got to wear clothes for the first time last Thursday!! The preemie clothes were still pretty big on them, so we rolled the sleeves and made a few other adjustments. Overall, they like wearing clothes. And, they just look so darn cute in them!
One of the biggest milestones this week is bottle feeding. Aiden and Evan have both taken all of their feedings by bottle several times. However, this is only true for about 1 feeding per day. The rest of the feedings are still given by tube feeding. The boys are getting about 1 ounce every three hours. It takes them at least 25 minutes to bottle feed this amount. We don’t want them to try any longer than that, or they will end up burning more calories trying to eat than they will get from their milk!
Aiden reached 4 pounds today, and Evan is just a few grams shy!!! This means that they graduated out of their incubators and into baby beds. This makes it so much easier to pick them up, change diapers, dress them, etc.
It has just been wonderful to see the boys progress so much in the last few weeks. We know that they still have a ways to go. Please continue the prayers. Pictures will be posted soon (in clothes)!
Wednesday, September 30, 2009
Monday, September 21, 2009
Aiden and Evan - 9/21 with pictures and video
It’s been a good week in the NICU. The boys have had good steady growth and are up to 3 pounds 3 ounces each.
The biggest news this week is Evan was extubated Saturday afternoon. He had been on a ventilator for nearly two weeks so it is good to see him back on his nasal CPAP. I think he will be a much happier little boy without the vent tube stuck down his throat. Let’s pray that Evan is able to stay off the ventilator.
Aiden’s big news is that he has started to take a bottle this last week. He has not quit mastered feeding from a bottle though. He’s a natural at sucking on the nipple but hasn’t figured out just yet what to do with the milk. His little mouth gets full of milk and he ends up spitting most of it out. I bet he gets the hang of it here in the next week or two.
The doctors are going to do another round of tests on Aiden to see if his urinary tract infection has cleared up completely and if his liver enzymes have returned to normal levels on Monday. Aiden has been acting really well and does not look jaundice so we are optimistic that the tests are going to come back with good results.
Evan being held by Janel (9/6)
The biggest news this week is Evan was extubated Saturday afternoon. He had been on a ventilator for nearly two weeks so it is good to see him back on his nasal CPAP. I think he will be a much happier little boy without the vent tube stuck down his throat. Let’s pray that Evan is able to stay off the ventilator.
Aiden’s big news is that he has started to take a bottle this last week. He has not quit mastered feeding from a bottle though. He’s a natural at sucking on the nipple but hasn’t figured out just yet what to do with the milk. His little mouth gets full of milk and he ends up spitting most of it out. I bet he gets the hang of it here in the next week or two.
The doctors are going to do another round of tests on Aiden to see if his urinary tract infection has cleared up completely and if his liver enzymes have returned to normal levels on Monday. Aiden has been acting really well and does not look jaundice so we are optimistic that the tests are going to come back with good results.
Evan being held by Janel (9/6).
Janel with Aiden posing for a picture (9/6)
.
Evan with his Daddy (9/11)
Evan didn't like the vent tube at all but at least it gave him something to suck on all the time.
Aiden loves sucking on his pacifier. Here Janel flys it into Aiden's mouth.
The nurses take Evan for a visit with Mommy.
Aiden taking a look around.
Now that Evan is back on a CPAP, he can use a pacifier. He too loves them!
Aiden looks all tangeled up here when he decies to do his doggy dance!
Monday, September 14, 2009
Aiden and Evan - 9/14
We have good news to report about Aiden’s bilirubin. Although it is still elevated, it has gone down nicely over the last few days. The doctors think that treating the urinary tract infection has most likely helped his liver also. Aiden is still on his nasal canula (when he does not pull it out of his nose).
Evan is still on the ventilator, and the doctors are giving no indication of when he might be extubated. He is tolerating his vibrating treatments a little better now, but still has episodes when he is just very uncomfortable. We have been able to hold him the last several days/night, and he has really liked it. He has been out of his incubator since he was put back on the ventilator last week. He is in a warming bed. This is good and bad. It is good in that we can talk to him easier, touch him more, and be closer to him. However, he is very sensitive to sound. And, there are lots of sounds in the NICU (including his very noisy ventilator). Every time the phone rings in the bay, his arms and legs flail out, and this makes his ventilator beep, which makes Evan squirm even more. For Evan’s comfort, we will be glad when he is back in his quiet little house.
Both boys have had good weight gain over the last week. They are up to about 3 pounds now!! Evan’s feeds were even decreased today to possibly help with his lungs (less volume). Aiden has been very interested in eating for himself. He has latched on to me (Janel) twice, and ate 10 mL out of a bottle this morning. He has to learn to coordinate sucking, swallowing, and breathing. This is usually done around 33 weeks in-utero. The boys will be 33 weeks on Friday.
Everyone in the NICU has warned us about the ups and downs in the NICU (they call it the roller coaster). And, although we have had many, many ups and downs, I don’t think we will ever be prepared for the “downs”. Our hearts still sink every time we get worrisome news. We really appreciate everyone’s thoughts and prayers. David and I pray constantly for Evan and Aiden. I can’t help but think of Mark Shultz’s song “He’s My Son”. The chorus has been my prayer for 7 weeks…..
Evan is still on the ventilator, and the doctors are giving no indication of when he might be extubated. He is tolerating his vibrating treatments a little better now, but still has episodes when he is just very uncomfortable. We have been able to hold him the last several days/night, and he has really liked it. He has been out of his incubator since he was put back on the ventilator last week. He is in a warming bed. This is good and bad. It is good in that we can talk to him easier, touch him more, and be closer to him. However, he is very sensitive to sound. And, there are lots of sounds in the NICU (including his very noisy ventilator). Every time the phone rings in the bay, his arms and legs flail out, and this makes his ventilator beep, which makes Evan squirm even more. For Evan’s comfort, we will be glad when he is back in his quiet little house.
Both boys have had good weight gain over the last week. They are up to about 3 pounds now!! Evan’s feeds were even decreased today to possibly help with his lungs (less volume). Aiden has been very interested in eating for himself. He has latched on to me (Janel) twice, and ate 10 mL out of a bottle this morning. He has to learn to coordinate sucking, swallowing, and breathing. This is usually done around 33 weeks in-utero. The boys will be 33 weeks on Friday.
Everyone in the NICU has warned us about the ups and downs in the NICU (they call it the roller coaster). And, although we have had many, many ups and downs, I don’t think we will ever be prepared for the “downs”. Our hearts still sink every time we get worrisome news. We really appreciate everyone’s thoughts and prayers. David and I pray constantly for Evan and Aiden. I can’t help but think of Mark Shultz’s song “He’s My Son”. The chorus has been my prayer for 7 weeks…..
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Friday, September 11, 2009
Aiden and Evan - 9/11
It has been a high anxiety week in the NICU. I got a phone call from the NICU on Sunday night at 2:00 AM informing us that Evan was re-intubated because his breathing was worsening. His carbon dioxide in his blood was very high, indicating that he was not ventilating very well. Needless to say, this was very worrisome. Not much sleep that night!
Evan has been more stable since he has been back on the ventilator. He is not having near as many desaturations. He does not appear to be very comfortable, though. He flails his arms and legs quite a bit when he is unhappy. They are giving him some sedation to keep him calmer. He also has a lot of secretions in his lungs and has to be suctioned 1 to 2 times per hour. This is also very uncomfortable for him. The respiratory therapists have started giving him “vibe” treatments. This is basically a vibrating machine they place on his chest and back to break up the secretions from his lungs so that they can be suctioned out. Poor little guy!! It is so hard to see him uncomfortable. Please pray that Evan’s lungs will grow and develop into healthy lungs!
Aiden has continued to do well on his nasal canula. His color has continued to be slightly yellow/bronze. They re-checked his bilirubin on Wednesday and found that it was even higher than last week. They also checked his liver function enzymes and found them to be elevated as well. His liver is not functioning like it should be, and the doctors cannot seem to find the reason. He had a repeat of his abdominal ultrasound on Thursday and they could still not find his gallbladder. The gallbladder is really what they need to look at to find out if there is an obstruction or a cyst. They were finally able to collect some urine on Wednesday. We found out on Thursday that he does have a bladder infection. This could be what is causing his jaundice. He will get treated for 7-10 days with antibiotics to see if that helps his bilirubin come down. If not, more tests will have to be done. Pray that treating the urinary tract infection will heal his liver!
Both boys have gained weight this week!!! Today, they were both about 2 pounds 13 ounces. We apologize for not updating the blog as often as we should. We have both been very busy with the boys and work. Hopefully, we will find more time next week to update everyone (with pictures). Thanks for keeping Aiden and Evan in your thoughts and prayers. Please continue to pray for them!
Evan has been more stable since he has been back on the ventilator. He is not having near as many desaturations. He does not appear to be very comfortable, though. He flails his arms and legs quite a bit when he is unhappy. They are giving him some sedation to keep him calmer. He also has a lot of secretions in his lungs and has to be suctioned 1 to 2 times per hour. This is also very uncomfortable for him. The respiratory therapists have started giving him “vibe” treatments. This is basically a vibrating machine they place on his chest and back to break up the secretions from his lungs so that they can be suctioned out. Poor little guy!! It is so hard to see him uncomfortable. Please pray that Evan’s lungs will grow and develop into healthy lungs!
Aiden has continued to do well on his nasal canula. His color has continued to be slightly yellow/bronze. They re-checked his bilirubin on Wednesday and found that it was even higher than last week. They also checked his liver function enzymes and found them to be elevated as well. His liver is not functioning like it should be, and the doctors cannot seem to find the reason. He had a repeat of his abdominal ultrasound on Thursday and they could still not find his gallbladder. The gallbladder is really what they need to look at to find out if there is an obstruction or a cyst. They were finally able to collect some urine on Wednesday. We found out on Thursday that he does have a bladder infection. This could be what is causing his jaundice. He will get treated for 7-10 days with antibiotics to see if that helps his bilirubin come down. If not, more tests will have to be done. Pray that treating the urinary tract infection will heal his liver!
Both boys have gained weight this week!!! Today, they were both about 2 pounds 13 ounces. We apologize for not updating the blog as often as we should. We have both been very busy with the boys and work. Hopefully, we will find more time next week to update everyone (with pictures). Thanks for keeping Aiden and Evan in your thoughts and prayers. Please continue to pray for them!
Saturday, September 5, 2009
Aiden and Evan - 9/5 with pictures
There are not a whole lot of changes from the previous posting. The boys are now six weeks old! Aiden continues on his nasal canula doing very well. Evan continues on CPAP and still has his desat and apnea spells. He had quite a significant spell this morning that required some manual bagging from the nurse and respiratory therapist. It is very unnerving to see these spells. However, Evan also has some very good times, as well.
David mentioned in the previous posting that Aiden had an elevated bilirubin. There is a very long list of things that could cause this. They sent a urine sample on Friday to check for an infection and for a metabolic disease called galactosemia. Somehow, the urine got lost in the lab. By the time they found it, it had been sitting for too long. They will send it again today. The test for galactosemia came back negative (thank goodness). He also had an abdominal ultrasound yesterday morning to check for an obstruction or any abnormality. The ultrasound tech said that he never found his gallbladder. This test will most likely also have to be done a second time. The elevated bilirubin could also be his liver reacting the IV nutrition that he was on right after his surgery. However, this usually happens while the baby is on IV nutrition, and Aiden has been back on breast milk for quite a while now.
Evan’s urinary tract infection appears to be gone now, and he is off of his antibiotics. His color looks much better, and he acts like he feels a lot better also.
On a good note, I gave Aiden his first bath last night. He did very well. David was able to give Evan a sponge bath in his incubator.
The doctors (and us) are still very concerned about the lack of weight gain over the last 2 weeks. Yesterday, I started separating foremilk from hind milk when I pump. The foremilk is the watery milk that is produced the first half of pumping, and the hind milk is the fattier, more nutrient dense milk that comes in the second half of pumping. The boys are only getting the hind milk mixed with the fortifier now. Hopefully, this will help with their weight gain.
Evan after his first (sponge) bath.
Evan (now clean) relaxing.
Evan warming up after his bath.
Aiden's first bath.
Mommy holding Aiden after his bath.Friday, September 4, 2009
Aiden and Evan - 9/4
Oh my, almost an entire week has gone by and we have not posted a single updated to this blog. Here's a quick update with a promise for more details later...
Aiden is now on a nasal cannula instead of the CPAP, a very nice step forward for him. The functional difference is that the CPAP forced air into the nose under continuous pressure while the cannula just blows air freely into his nose. The best thing about it is that he no longer has to wear the bulky CPAP on his face, the cannula is a nice small tube that fits much better around his head.
In order to make sure we don't get too excited about being on a cannula, Aiden decided to let his bilirubin levels get high and as a result he look jaundice. This just came up yesterday and they are doing a handful of tests to try to figure out why this is happening. We'll report back as soon as we know something more.
Evan has continued to do well in his breathing. He has been on 30% to 40% oxygen all week which is good compared to where he came from. He has been up and down a lot though so he still needs some good growth to get him past his lung problems.
Speaking of growth, both boys are slowly growing, emphasis on slowly. They are still only about two and a half pounds and the doctors (and us) would really like to see better growth. I guess we just have to be patient.
Aiden is now on a nasal cannula instead of the CPAP, a very nice step forward for him. The functional difference is that the CPAP forced air into the nose under continuous pressure while the cannula just blows air freely into his nose. The best thing about it is that he no longer has to wear the bulky CPAP on his face, the cannula is a nice small tube that fits much better around his head.
In order to make sure we don't get too excited about being on a cannula, Aiden decided to let his bilirubin levels get high and as a result he look jaundice. This just came up yesterday and they are doing a handful of tests to try to figure out why this is happening. We'll report back as soon as we know something more.
Evan has continued to do well in his breathing. He has been on 30% to 40% oxygen all week which is good compared to where he came from. He has been up and down a lot though so he still needs some good growth to get him past his lung problems.
Speaking of growth, both boys are slowly growing, emphasis on slowly. They are still only about two and a half pounds and the doctors (and us) would really like to see better growth. I guess we just have to be patient.
Sunday, August 30, 2009
Aiden and Evan - 8/30 with photos
We’ve had several good days in the NICU as both boys have done well.
Aiden has been weaned down to a nasal CPAP and has stayed steady the last few days in the low twenties. His feedings have been resumed and picked back up to 22mL of 30 cal/oz milk mix every 3 hours. His weight today was 1160 grams, which is a tad over two and half pounds.
Evan has oxygen needs have stayed in the 45%-55% range over the last several days. He does not seem to be having as many apnea spells as he has been earlier in the week which is good. His color has been considerably better since last Tuesday when he looked very pale. They think he has had a urinary tract infection which may explain his color. Evan was placed on antibiotics to treat the infection and an ultrasound has been ordered to check his kidney anatomy just to make sure there is nothing more severe than a UTI. His feedings are currently at 24mL of 30 cal/oz milk mix every 3 hours and his weight has started to move up a little to 1130 grams today.
It’s been nice to be able to relax a little bit the last few days as the boys have both done well. Once again, thank you to everyone for lifting our boys up in prayer.
Here are a few pictures of the boys from the last week.
Aiden recovering from surgery on Wednesday. (32 days old)
Evan getting some sleep. That’s David’s wedding band around his left hand.
Evan is in the incubator under the blanket on the right and Aiden is in the radiated warmer bed next to him. They will be putting Aiden back into an incubator soon which is too bad for us as we have really enjoyed being able to interact with Aiden up close.
Aiden was placed back on his CPAP on Wednesday. He loves to suck on his pacifier.
We took this picture to compare Aiden’s current size with one of his premie size outfits he’ll be wearing before too long. He has a little bit of growing to do yet.
We have been able to start doing kangaroo care with both of the boys. Here is Aiden looking surprised to see daddy.
Here’s Evan snuggled up with mommy.
Aiden has been weaned down to a nasal CPAP and has stayed steady the last few days in the low twenties. His feedings have been resumed and picked back up to 22mL of 30 cal/oz milk mix every 3 hours. His weight today was 1160 grams, which is a tad over two and half pounds.
Evan has oxygen needs have stayed in the 45%-55% range over the last several days. He does not seem to be having as many apnea spells as he has been earlier in the week which is good. His color has been considerably better since last Tuesday when he looked very pale. They think he has had a urinary tract infection which may explain his color. Evan was placed on antibiotics to treat the infection and an ultrasound has been ordered to check his kidney anatomy just to make sure there is nothing more severe than a UTI. His feedings are currently at 24mL of 30 cal/oz milk mix every 3 hours and his weight has started to move up a little to 1130 grams today.
It’s been nice to be able to relax a little bit the last few days as the boys have both done well. Once again, thank you to everyone for lifting our boys up in prayer.
Here are a few pictures of the boys from the last week.
Aiden recovering from surgery on Wednesday. (32 days old)
Evan getting some sleep. That’s David’s wedding band around his left hand.
Evan is in the incubator under the blanket on the right and Aiden is in the radiated warmer bed next to him. They will be putting Aiden back into an incubator soon which is too bad for us as we have really enjoyed being able to interact with Aiden up close.
Aiden was placed back on his CPAP on Wednesday. He loves to suck on his pacifier.
We took this picture to compare Aiden’s current size with one of his premie size outfits he’ll be wearing before too long. He has a little bit of growing to do yet.
We have been able to start doing kangaroo care with both of the boys. Here is Aiden looking surprised to see daddy.
Here’s Evan snuggled up with mommy.Tuesday, August 25, 2009
Aiden and Evan - 8/25
The boys turned one month old today!
Aiden continues to recover nicely from his PDA operation. They took him back off of the oscillating ventilator this morning and he has continued to make progress on his ventilation support needs. Dr. Michaels said they might try to wean him back to a nasal CPAP in the next couple of days if he continues to do well. In addition, Aiden should start back on his feedings tomorrow. Aiden has been fairly sedated the last several days so he does not move around as much as he previously was. Hopefully he is not feeling any pain from his surgery.
Evan has also been stable the last couple of days. They have been able to wean his ventilator settings some more and he seems to do well with oxygen levels in the mid 30’s. The biggest need for Evan is to grow. His weight growth has been down or flat the last several days, mostly due to the steroids which act as a diuretic. To help replace the lost fluid they have increased his feed amount up to 24ml every three hours and are going to increase the caloric density to get as much growth in as possible. Today his skin has started to look a bit pale and we (and the doctor) are not quite sure what to make of it. It may be nothing but to be sure they have drawn a little blood and are going to make sure there is not any sickness setting in. Hopefully it is nothing.
Janel got to hold Evan yesterday for the first time in several weeks. He lasted about 40 minutes and then had a hard apnea spell. Both boys will occasionally have spells where their oxygen saturation level and heart rate drops down. Usually it does not last more than a few seconds and the boys recover on their own. However occasionally they fall hard. The monitors start dinging and flashing and the nurses rush over and huddle over them, poking and rubbing – trying to find a position that improves breathing. When it’s really bad they have to remove the ventilation machine and manually vent using an air bag. It’s all quite a rush and the first time you watch incredibly scary. After a few times of seeing this you learn to filter the excitement of it and prevent yourself from getting too alarmed. But there is always a fear in the back of your mind and you can’t help feeling a little bit of desperation hoping everything will be okay.
Aiden continues to recover nicely from his PDA operation. They took him back off of the oscillating ventilator this morning and he has continued to make progress on his ventilation support needs. Dr. Michaels said they might try to wean him back to a nasal CPAP in the next couple of days if he continues to do well. In addition, Aiden should start back on his feedings tomorrow. Aiden has been fairly sedated the last several days so he does not move around as much as he previously was. Hopefully he is not feeling any pain from his surgery.
Evan has also been stable the last couple of days. They have been able to wean his ventilator settings some more and he seems to do well with oxygen levels in the mid 30’s. The biggest need for Evan is to grow. His weight growth has been down or flat the last several days, mostly due to the steroids which act as a diuretic. To help replace the lost fluid they have increased his feed amount up to 24ml every three hours and are going to increase the caloric density to get as much growth in as possible. Today his skin has started to look a bit pale and we (and the doctor) are not quite sure what to make of it. It may be nothing but to be sure they have drawn a little blood and are going to make sure there is not any sickness setting in. Hopefully it is nothing.
Janel got to hold Evan yesterday for the first time in several weeks. He lasted about 40 minutes and then had a hard apnea spell. Both boys will occasionally have spells where their oxygen saturation level and heart rate drops down. Usually it does not last more than a few seconds and the boys recover on their own. However occasionally they fall hard. The monitors start dinging and flashing and the nurses rush over and huddle over them, poking and rubbing – trying to find a position that improves breathing. When it’s really bad they have to remove the ventilation machine and manually vent using an air bag. It’s all quite a rush and the first time you watch incredibly scary. After a few times of seeing this you learn to filter the excitement of it and prevent yourself from getting too alarmed. But there is always a fear in the back of your mind and you can’t help feeling a little bit of desperation hoping everything will be okay.
Sunday, August 23, 2009
Aiden and Evan - 8/23 with photos
What a weekend I am glad to have behind us. When we came for our Saturday afternoon visit Dr. Michael wanted to talk to us in the conference room in private. It’s never a good sign when the doctor wants to visit in private and this case proved to be no exception. That morning when Dr. Michael was doing his check up on Aiden he heard a murmur in his heart and ordered a echocardiogram to see what the cause was. The echocardiogram showed that Aiden had a PDA (patent ductus arteriosus) again and it was wide open. You might remember that Aiden and Evan both had PDAs and were treated with indomethacin (see 7/31 post). Because of Aiden’s age the doctors did not feel that indomethacin would work at closing the PDA this time and recommended surgery to place a clip on the open duct to pinch it close.
The news was somewhat of a shock to us (and the doctors) because Aiden has been doing so well and had not shown any signs of any of the problems that a PDA might cause. However, if left untreated it would be just a matter of time before the compromised blood flow caused problems so Dr. Michael wanted to do the surgery as soon as practical. So we agreed and the procedure was scheduled for Sunday morning at 9:30.
The actual operation is not too complicated and the impression we get from the doctors is that it is fairly common. The procedure is to make a small incision on the left side of the chest, go through the rib cage, push the lung out of the way a bit and place a small metal clip on the open duct to pinch it close. The whole thing takes about thirty minutes start to finish with most of the time spent identifying exactly where the clip needs to be placed. The biggest risk is that a nerve to the vocal cords runs down and through the same area as the duct and occasionally when this procedure is done that nerve is damaged. This happens in about one out of 4 to 5 times.
We arrived at the NICU Sunday morning at 8:00 and they were starting to prepare Aiden for surgery. They had moved him from his incubator onto a radiant warmer and were placing an arterial IV into his left arm. After twenty minutes we were asked to leave so they could switch Aiden’s nasal CPAP out for a ventilator. Fifteen minutes of waiting later we came back in and Aiden was intubated but having trouble getting stable. For an hour the respiratory therapist worked on Aiden’s settings and vent tube placement and finally was able to get it placed in such a way that Aiden was stable. The x-rays showed that Aiden’s lungs were probably starting to stiffen as a result of the PDA.
Meanwhile, Dr. Fox, the pediatric cardiac surgeon, arrived and went over in detail the procedure and associated risks with us. We signed the consent form for surgery and went back Aiden and Evan’s bed side to wait some more. We were told the operating room staff was tied up with other procedures and that our 9:30 procedure would be done at 10:30. At 11:00 the OR staff started to trickle in and began to prepare. At 11:15 we had to say good bye to Aiden and Evan and went out to wait in the NICU waiting room.
About thirty minutes later one of the nurses came out and told us that Dr. Fox had finished the procedure and that they were awaiting an x-ray to see if Aiden looked okay. Fifteen minutes after that Dr. Fox came out and told us everything had gone well. When he placed the clip on and closed the PDA, Aiden’s blood pressure changed right away indicating that the clip was blocking the blood flow as intended. We then got to go back into the NICU and see Aiden again. Aiden has an incision on his left side about a forth an arm length down from his armpit. The metal clip that Dr. Fox installed will be in Aiden for the rest of his life and should not cause any issues.
Since the operation Aiden has been sleeping off his anesthesia on the radiant warmer. We were warned that Aiden will likely have a rough couple of days following the surgery as his body recovers. This afternoon, X-rays showed that his lungs were not fully inflating so they have placed him back on the oscillating ventilator to try to expand them back out. He will probably be on a ventilator for a week. His feedings have been put on hold as well for a couple of days and he will be getting his nutrition through the IV. Hopefully, these set backs will be temporary and Aiden can get back on the growth track soon.
Evan is doing well still and continues to improve on his oxygen needs. He likes to be on his belly and has gotten down to 30% oxygen in this position. His steroid dosage is being stepped off and his last dose will be on Wednesday.
Here’s a couple of pictures from the last few days.
Aiden having skin-to-skin time with his mommy.
Evan and Janel’s hand.
Aiden before his operation.
Aiden after his operation. You can see the incision on his side.
The news was somewhat of a shock to us (and the doctors) because Aiden has been doing so well and had not shown any signs of any of the problems that a PDA might cause. However, if left untreated it would be just a matter of time before the compromised blood flow caused problems so Dr. Michael wanted to do the surgery as soon as practical. So we agreed and the procedure was scheduled for Sunday morning at 9:30.
The actual operation is not too complicated and the impression we get from the doctors is that it is fairly common. The procedure is to make a small incision on the left side of the chest, go through the rib cage, push the lung out of the way a bit and place a small metal clip on the open duct to pinch it close. The whole thing takes about thirty minutes start to finish with most of the time spent identifying exactly where the clip needs to be placed. The biggest risk is that a nerve to the vocal cords runs down and through the same area as the duct and occasionally when this procedure is done that nerve is damaged. This happens in about one out of 4 to 5 times.
We arrived at the NICU Sunday morning at 8:00 and they were starting to prepare Aiden for surgery. They had moved him from his incubator onto a radiant warmer and were placing an arterial IV into his left arm. After twenty minutes we were asked to leave so they could switch Aiden’s nasal CPAP out for a ventilator. Fifteen minutes of waiting later we came back in and Aiden was intubated but having trouble getting stable. For an hour the respiratory therapist worked on Aiden’s settings and vent tube placement and finally was able to get it placed in such a way that Aiden was stable. The x-rays showed that Aiden’s lungs were probably starting to stiffen as a result of the PDA.
Meanwhile, Dr. Fox, the pediatric cardiac surgeon, arrived and went over in detail the procedure and associated risks with us. We signed the consent form for surgery and went back Aiden and Evan’s bed side to wait some more. We were told the operating room staff was tied up with other procedures and that our 9:30 procedure would be done at 10:30. At 11:00 the OR staff started to trickle in and began to prepare. At 11:15 we had to say good bye to Aiden and Evan and went out to wait in the NICU waiting room.
About thirty minutes later one of the nurses came out and told us that Dr. Fox had finished the procedure and that they were awaiting an x-ray to see if Aiden looked okay. Fifteen minutes after that Dr. Fox came out and told us everything had gone well. When he placed the clip on and closed the PDA, Aiden’s blood pressure changed right away indicating that the clip was blocking the blood flow as intended. We then got to go back into the NICU and see Aiden again. Aiden has an incision on his left side about a forth an arm length down from his armpit. The metal clip that Dr. Fox installed will be in Aiden for the rest of his life and should not cause any issues.
Since the operation Aiden has been sleeping off his anesthesia on the radiant warmer. We were warned that Aiden will likely have a rough couple of days following the surgery as his body recovers. This afternoon, X-rays showed that his lungs were not fully inflating so they have placed him back on the oscillating ventilator to try to expand them back out. He will probably be on a ventilator for a week. His feedings have been put on hold as well for a couple of days and he will be getting his nutrition through the IV. Hopefully, these set backs will be temporary and Aiden can get back on the growth track soon.
Evan is doing well still and continues to improve on his oxygen needs. He likes to be on his belly and has gotten down to 30% oxygen in this position. His steroid dosage is being stepped off and his last dose will be on Wednesday.
Here’s a couple of pictures from the last few days.
Aiden having skin-to-skin time with his mommy. 
Evan and Janel’s hand.
Aiden before his operation.
Aiden after his operation. You can see the incision on his side. Friday, August 21, 2009
Aiden and Evan - 8/21 with photos
We have had a few really good days in the NICU. Yesterday, Evan was weaned from his high frequency ventilator to a conventional ventilator. He tolerated it really well. Later in the day, they were able to turn off the nitric oxide. Then, finally, around midnight of last night, Evan was extubated from his ventilator and placed on nasal CPAP just like his older brother. He seems to be tolerating it very well. He now has to wear the stocking cap just like Aiden. Aiden is also doing well. David is having quality Kangaroo Care right now with Aiden breathing 21% oxygen (room air). Umm… he just saw me type that and had to get bumped up to 24%.
Both of the boys are tolerating their breast milk and are off of their IV nutritional support. That means that both boys were able to have their PICC lines removed. The breast milk is being fortified to 28 calories per ounce now with the Prolacta. Both of the boys are getting a whopping total of 5 ounces per day. Although it is a small amount, it meets their calorie needs. Aiden is up to 2 pounds 3 ounces and Evan is up to 2 pounds 5 ounces. We are very pleased with the progress that both boys are making. Hopefully, we are past the major hurdles. They still have a long way to go and need lots of prayers!
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Evan off his ventilator and now on CPAP..
Aiden napping.
Aiden telling us to stop taking pictures.Our other set of twins are feeling deprived.
Dixie
Molly
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