Tuesday, June 30, 2009
Tuesday
Monday, June 29, 2009
Luke is Seven Weeks Old!
Hi everyone. I just can't believe that Luke is seven weeks old today! I'm so glad we've made it this far. Part of me though, is sad. Sad that I've missed 7 weeks of cuddling, holding, and feeding. Sad that I need to put away all his premie clothes, and probably most of his newborn clothes that he has never gotten to wear. Sad that his nursery has everything in it except a baby. Sad that we're 7 weeks into a hospital stay, having not been home, and there's really no end in sight yet.
We do have to count our blessings. The biggest, obviously, is that we've cleared the first surgery. He is still in the recovery period, but progressing nicely on most fronts. We're thankful that his right leg has healed completely now instead of being swollen and purple. He now has two chicken legs instead of one chicken leg and one elephant leg (or, one daddy leg and one mommy leg, if you will). His kidneys continue to improve. He is peeing so much now that they took out his Foley catheter because they haven't needed to keep track of his exact urine output. They now just weigh his whole diaper. They like for his creatinine level (measure of kidney function) to be below 1.0, 0.5 is normal. He's wavered between 0.8 and 1.1 for the past several days. We are hearing some rumors about stopping dialysis in the next few days to see how he does. Then if that goes well, they will take out the dialysis catheter and we'll be done with that. We are so happy that we're no longer waiting to see if he'll regain full kidney function again, waiting to see if we'll have to do dialysis permanently. We now know that Luke will be off dialysis at some point, we're just waiting for that day to come, and we think it will be soon.
Once Luke gets off dialysis, that will make his abdomen less full, which will give his lungs more room to expand, which will allow him to breathe better. Over the last week or two, the doctors have put him on what's called Pressure Support Trials. During these trials, Luke initiates all of his breaths, and then his ventilator gives him an extra amount of support and oxygen volume for each breath. This essentially teaches him incrementally how to breathe on his own, moving towards getting him completely off ventilator support. These trials last from 30 minutes to 1 hour multiple times a day to allow him to rest and rely more heavily on the ventilator in between trials. Once Luke is off dialysis, we're expecting for him to do better and better on these trials and get off the ventilator quickly. Luke also got his chest drainage tube out this week. This was the tube that allowed all of the blood and yucky stuff to drain out. A wound specialist is working with him to insure that the site will heal properly and reduce scarring. Luke also got his stitches out from his incision site this week. Now he has a pink line down the center of his chest instead of big ugly black stitches. His swelling has reduced significantly, though he still has a double chin. He is slowly but surely starting to look like a normal baby and not the torn apart and sewn back together baby he was three weeks ago.
Some not so good news now. The doctors confirmed yesterday that Luke has an infection. It's not surprising. His nurse told us that pretty much all babies in the hospital for as long as Luke has been get an infection at some point. Thankfully, they put him on antibiotics before the infection was confirmed, so we have a pretty good start on treating the infection. This infection has caused his belly to become quite swollen, and caused some problems with his small intestine. He stopped digesting his milk, so it was just sitting there in his intestines. He threw it all up, and they've stopped feeding him yesterday and today to give his digestive system a chance to heal. This means that the medications that they've worked so hard to switch over from IV form to oral form now have to be switched back, so we've taken a step backwards on that front as well. His swollen belly has also made it tougher for him to breathe. As with all the previous problems, everything in his system is dependent upon everything else, so it's very frustrating that lots of things go wrong when one little thing isn't working right. The doctors aren't going to be very aggressive with working with Luke to get off the ventilator until we get a handle on this infection.
Also, not so good, is that Luke's heart rate has slowly but steadily risen over the past 3-4 days. They have put him on the medication called Amioderone which is supposed to keep the electrical impulses in his heart that tell it to beat regular. The medication has been successful on that front, but it has not been successful at lowering his heart rate and maintaining that lower heart rate. It's lowest point since he started this arrhythmia problem was in the high 160s. Today he's in the high 180s and low 190s. The doctors tell us that Luke's blood system is tolerating this fast heart rate very well. They expect that his heart will eventually heal over a period of months and the heart rate will slow down. They are giving him another medication called Esmelol to help this along, though it hasn't seemed to have much effect so far.
So we've had some good and some bad this week. This road we're on has smoothed out quite a bit, what's hard right now is just the length of the road. Most difficult for me I think are the nights. During pregnancy, the nighttime was when I would feel him kick the most. It was the time when I felt the most aware and the closest to him. Now the nights are when we're the farthest away from him, and I feel so bereft and lonely that it's hard to fall asleep. It's difficult to go in his room to put something away because it's just an strong reminder that he's not home. Highlight of the week though came on Saturday. We haven't gotten to hold him because he's connected with too many tubes and wires to move him out of bed. Saturday though, David and I got to take turns standing right against his bed and cradling Luke in our arms. It's was really close to holding him. Not the same, but really close.
We thank you to continue praying for us. Please pray for Luke's infection to heal quickly, and for his swollen belly to go down so he can breathe better and continue eating. Please pray that the medication will lower his heart rate, or that his heart will begin to heal on its own and his heart rate will lower. 190 is a scary number to see on that monitor. It makes my heart jump whenever I see it. Pray for David and I. We're extremely weary. It's very easy to get discouraged and to fall into despair. I'm not sleeping well. Thank you all for you concern, your prayers, and your words of encouragement. We love you, and hope that God blesses you as he has blessed us.
Rachael & David
We do have to count our blessings. The biggest, obviously, is that we've cleared the first surgery. He is still in the recovery period, but progressing nicely on most fronts. We're thankful that his right leg has healed completely now instead of being swollen and purple. He now has two chicken legs instead of one chicken leg and one elephant leg (or, one daddy leg and one mommy leg, if you will). His kidneys continue to improve. He is peeing so much now that they took out his Foley catheter because they haven't needed to keep track of his exact urine output. They now just weigh his whole diaper. They like for his creatinine level (measure of kidney function) to be below 1.0, 0.5 is normal. He's wavered between 0.8 and 1.1 for the past several days. We are hearing some rumors about stopping dialysis in the next few days to see how he does. Then if that goes well, they will take out the dialysis catheter and we'll be done with that. We are so happy that we're no longer waiting to see if he'll regain full kidney function again, waiting to see if we'll have to do dialysis permanently. We now know that Luke will be off dialysis at some point, we're just waiting for that day to come, and we think it will be soon.
Once Luke gets off dialysis, that will make his abdomen less full, which will give his lungs more room to expand, which will allow him to breathe better. Over the last week or two, the doctors have put him on what's called Pressure Support Trials. During these trials, Luke initiates all of his breaths, and then his ventilator gives him an extra amount of support and oxygen volume for each breath. This essentially teaches him incrementally how to breathe on his own, moving towards getting him completely off ventilator support. These trials last from 30 minutes to 1 hour multiple times a day to allow him to rest and rely more heavily on the ventilator in between trials. Once Luke is off dialysis, we're expecting for him to do better and better on these trials and get off the ventilator quickly. Luke also got his chest drainage tube out this week. This was the tube that allowed all of the blood and yucky stuff to drain out. A wound specialist is working with him to insure that the site will heal properly and reduce scarring. Luke also got his stitches out from his incision site this week. Now he has a pink line down the center of his chest instead of big ugly black stitches. His swelling has reduced significantly, though he still has a double chin. He is slowly but surely starting to look like a normal baby and not the torn apart and sewn back together baby he was three weeks ago.
Some not so good news now. The doctors confirmed yesterday that Luke has an infection. It's not surprising. His nurse told us that pretty much all babies in the hospital for as long as Luke has been get an infection at some point. Thankfully, they put him on antibiotics before the infection was confirmed, so we have a pretty good start on treating the infection. This infection has caused his belly to become quite swollen, and caused some problems with his small intestine. He stopped digesting his milk, so it was just sitting there in his intestines. He threw it all up, and they've stopped feeding him yesterday and today to give his digestive system a chance to heal. This means that the medications that they've worked so hard to switch over from IV form to oral form now have to be switched back, so we've taken a step backwards on that front as well. His swollen belly has also made it tougher for him to breathe. As with all the previous problems, everything in his system is dependent upon everything else, so it's very frustrating that lots of things go wrong when one little thing isn't working right. The doctors aren't going to be very aggressive with working with Luke to get off the ventilator until we get a handle on this infection.
Also, not so good, is that Luke's heart rate has slowly but steadily risen over the past 3-4 days. They have put him on the medication called Amioderone which is supposed to keep the electrical impulses in his heart that tell it to beat regular. The medication has been successful on that front, but it has not been successful at lowering his heart rate and maintaining that lower heart rate. It's lowest point since he started this arrhythmia problem was in the high 160s. Today he's in the high 180s and low 190s. The doctors tell us that Luke's blood system is tolerating this fast heart rate very well. They expect that his heart will eventually heal over a period of months and the heart rate will slow down. They are giving him another medication called Esmelol to help this along, though it hasn't seemed to have much effect so far.
So we've had some good and some bad this week. This road we're on has smoothed out quite a bit, what's hard right now is just the length of the road. Most difficult for me I think are the nights. During pregnancy, the nighttime was when I would feel him kick the most. It was the time when I felt the most aware and the closest to him. Now the nights are when we're the farthest away from him, and I feel so bereft and lonely that it's hard to fall asleep. It's difficult to go in his room to put something away because it's just an strong reminder that he's not home. Highlight of the week though came on Saturday. We haven't gotten to hold him because he's connected with too many tubes and wires to move him out of bed. Saturday though, David and I got to take turns standing right against his bed and cradling Luke in our arms. It's was really close to holding him. Not the same, but really close.
We thank you to continue praying for us. Please pray for Luke's infection to heal quickly, and for his swollen belly to go down so he can breathe better and continue eating. Please pray that the medication will lower his heart rate, or that his heart will begin to heal on its own and his heart rate will lower. 190 is a scary number to see on that monitor. It makes my heart jump whenever I see it. Pray for David and I. We're extremely weary. It's very easy to get discouraged and to fall into despair. I'm not sleeping well. Thank you all for you concern, your prayers, and your words of encouragement. We love you, and hope that God blesses you as he has blessed us.
Rachael & David
Friday, June 26, 2009
Friday
Luke's heart rate is in the mid-high 160s today, it appears his medication cocktail might be working. The docs are afraid though that he might have an infection because his belly is swollen and his skin is blotchy. They've done cultures at all his tube sites to check for infection. We'll know in 24-48 hours. And Luke's taken a step backwards from getting off dialysis. His creatanin level moved from 0.9 to 1.1.
Wednesday, June 24, 2009
Wednesday
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Monday, June 22, 2009
Luke is Six Weeks Old!
We've made it six weeks. We've had some adventures with heart rate this week.
It was about Wednesday or Thrusday, I don't remember exactly (all the days run together!) when Luke's heart rate went suddenly from the 130s to the 170s. The change took place in less than a minute, and we are both glad that David was standing close by with his eyes on the monitors and noticed this change. After a lot of humming and hawing, the doctors, including his cardiologist, Dr. Kao, decided to put him on a drug called amioderone. She told us that Amioderone is a slow acting drug and would take at least 4 hours to start working. We had to leave then for shift change, and when we came back, the night Doc, Dr. Stromberg had taken him off the drug because he thought it was causing Luke's heart to "drop" or "skip" beats and jump all over-- one moment in the 170s, then next in the 110s, the next somewhere in the 130's, etc.
The next morning Dr. Kao and the day doctor, Dr. Meyer, did some experiments with a different drug and his pacemaker and ruled out a certain type of arrhythmia. They have been talking to a specialist from Austin who is a heart rate specialist named Dr. Fenrich. Dr. Fenrich has seen all of Luke's EKGs from this week. Over the past week the doctors have been trying a few different drugs and different things. The problem with the drugs they have been using have been that they will slow his heart rate down, but then his heart rate will begin to drop beats or jump all around, and his blood pressure will also drop, which is bad for his whole system.
As we left yesterday evening, we were distraught because we felt that his doctors have basically hit a wall. The treatments they have been using haven't been very effective. They had warned us that while his fast heart rate is not putting him in immediate danger (as long as his heart rate is steady, the rest of his system is working well, though fast), they aren't sure how long Luke's heart can beat that fast before tiring out. So the doctors had no solution to offer us yesterday to slow his heart rate down and keep it regular. We didn't know if we were facing Luke going into arrest again, or heart failure, or what. With no answers, we were pretty distraught.
This morning I walked into his room and nearly panicked to see four nurses, an EKG tech, and Dr. Stromberg standing around Luke's bed. It turned out that Luke's atrial heart rate (the beat rate for the top half of Luke's heart) went to about 240. Dr. Stromberg explained to me that only about 2/3 of these beats were "getting through" to the bottom half of his heart, so his true HR was only about 170. Still fast, but that helped me not to panic. Basically the top half of his heart was not talking to the bottom half, his blood pressure was dropping, and it was overall not good for his system. Dr. S used Luke's pacemaker to outpace his heart and basically hit the reset button on the node that was sending the bad impulses to shoot his heart rate up. Dr. S was able to use the pacemaker to get Luke's heart on a regular rhythm and get both halves of t he heart to communicate well together again. Luke's heart settled into a regular "sinus" rhythm of 190's. He explained to me that this type of thing is common in babies who have had Luke's surgery. Since they reduced the size of his atrium during surgery, he has some scar tissue on his right atrium. Basically one of the nodes that send electrical signals to the bottom half of the heart is right next to some scar tissue. The node would send an impulse, but the signal would go round and round the scar tissue and work itself up into a very fast rhythm. Kind of like a broken record or a skipping CD. I know that's really confusing, and I'm not sure that I understand it well. The good thing is that Dr. Stromberg understands what is going on, and has a plan to fix it.
After talking with Dr. Fenrich, Dr. Stromberg decided that Amioderone is again the correct drug to give Luke. Dr. S explained to me that the Amioderone would keep the broken record thing from reoccuring. He said that in the process, it should slow Luke's heart rate down a little maybe 160s or 170s, though the full effects of the drug will not be seen for 2-3 days because it is so slow acting.
Dr. Fenrich will come on Thursday and visit Luke. In the meantime, we think they'll keep him on Amioderone. Dr. Stromberg says that Luke's heart rate being in the 190s is not concerning to him at all. He believes that the problem is temporary, "post-op", and that while we may need to have Luke on Amioderone for a few months after we take him home, he won't need it indefinitely. He believes that this problem with the arrhythmia will work itself out in a little while. This is a relief to hear, but David and I are still nervous about the problem until we can see the effects of the drug start working and we go a couple of days without any crazy episodes.
Meanwhile, they are getting more aggressive with Luke's dialasis to try and get more fluid/swelling/adema off of Luke's body. This will enable Luke's lungs to expand more, allowing him to breathe more effectively, and hopefully in a few days get him of the ventilator. His night doctor last night had his foley catheter (for his urine) reinserted to keep better track of his urine output. His kidneys continue to improve a little each day based on the chemistry levels shown by his blood work. We don't have an idea when they might take Luke off of dialysis. Luke's leg looks almost back to normal, which we are really happy about. We haven't had any more seizures or any other reason to worry abou this brain any further. Luke's gotten up to full feeds - he gets 18 mL of breatmilk every hour continuously. We've begun something called pressure support trials with his ventilator. This means that for one hour, every four hours, the ventilator stops giving Luke breaths. Luke initiates every breath on his own, and the ventilotr gives him a little extra volume of Oxygen and a little extra pressure. In doing this we are teaching Luke to breathe on his own. So far Luke has done very well with most of his pressure trials. We haven't done one this morning because of his heart rate episode, but I believe they'll resume this afternoon.
One final thing, since Luke's ventilator and feeding tubes are now through his nose, he has room in his mouth to take a pacifier. Yesterday Luke went to town on his passifier two seperate times for about an hour each time. David and I are encouraged, thinking that if he can suck for that long, he should be able to take a full feeding. If we can get his heart under control, maybe we won't be in NICU for too long teaching Luke how to eat.
I think that's all the news. Thanks for bearing with me through all of this confusing information.
Thank you for your continued prayers. Please pray for Luke's arrhythmia to work itself out with the help of this medication. Please pray that the doctors gain full understanding and insight into this problem so they know the best way to treat it. Pray that we get to hold him soon.
We love you.
Blessings,
Rachael & David
It was about Wednesday or Thrusday, I don't remember exactly (all the days run together!) when Luke's heart rate went suddenly from the 130s to the 170s. The change took place in less than a minute, and we are both glad that David was standing close by with his eyes on the monitors and noticed this change. After a lot of humming and hawing, the doctors, including his cardiologist, Dr. Kao, decided to put him on a drug called amioderone. She told us that Amioderone is a slow acting drug and would take at least 4 hours to start working. We had to leave then for shift change, and when we came back, the night Doc, Dr. Stromberg had taken him off the drug because he thought it was causing Luke's heart to "drop" or "skip" beats and jump all over-- one moment in the 170s, then next in the 110s, the next somewhere in the 130's, etc.
The next morning Dr. Kao and the day doctor, Dr. Meyer, did some experiments with a different drug and his pacemaker and ruled out a certain type of arrhythmia. They have been talking to a specialist from Austin who is a heart rate specialist named Dr. Fenrich. Dr. Fenrich has seen all of Luke's EKGs from this week. Over the past week the doctors have been trying a few different drugs and different things. The problem with the drugs they have been using have been that they will slow his heart rate down, but then his heart rate will begin to drop beats or jump all around, and his blood pressure will also drop, which is bad for his whole system.
As we left yesterday evening, we were distraught because we felt that his doctors have basically hit a wall. The treatments they have been using haven't been very effective. They had warned us that while his fast heart rate is not putting him in immediate danger (as long as his heart rate is steady, the rest of his system is working well, though fast), they aren't sure how long Luke's heart can beat that fast before tiring out. So the doctors had no solution to offer us yesterday to slow his heart rate down and keep it regular. We didn't know if we were facing Luke going into arrest again, or heart failure, or what. With no answers, we were pretty distraught.
This morning I walked into his room and nearly panicked to see four nurses, an EKG tech, and Dr. Stromberg standing around Luke's bed. It turned out that Luke's atrial heart rate (the beat rate for the top half of Luke's heart) went to about 240. Dr. Stromberg explained to me that only about 2/3 of these beats were "getting through" to the bottom half of his heart, so his true HR was only about 170. Still fast, but that helped me not to panic. Basically the top half of his heart was not talking to the bottom half, his blood pressure was dropping, and it was overall not good for his system. Dr. S used Luke's pacemaker to outpace his heart and basically hit the reset button on the node that was sending the bad impulses to shoot his heart rate up. Dr. S was able to use the pacemaker to get Luke's heart on a regular rhythm and get both halves of t he heart to communicate well together again. Luke's heart settled into a regular "sinus" rhythm of 190's. He explained to me that this type of thing is common in babies who have had Luke's surgery. Since they reduced the size of his atrium during surgery, he has some scar tissue on his right atrium. Basically one of the nodes that send electrical signals to the bottom half of the heart is right next to some scar tissue. The node would send an impulse, but the signal would go round and round the scar tissue and work itself up into a very fast rhythm. Kind of like a broken record or a skipping CD. I know that's really confusing, and I'm not sure that I understand it well. The good thing is that Dr. Stromberg understands what is going on, and has a plan to fix it.
After talking with Dr. Fenrich, Dr. Stromberg decided that Amioderone is again the correct drug to give Luke. Dr. S explained to me that the Amioderone would keep the broken record thing from reoccuring. He said that in the process, it should slow Luke's heart rate down a little maybe 160s or 170s, though the full effects of the drug will not be seen for 2-3 days because it is so slow acting.
Dr. Fenrich will come on Thursday and visit Luke. In the meantime, we think they'll keep him on Amioderone. Dr. Stromberg says that Luke's heart rate being in the 190s is not concerning to him at all. He believes that the problem is temporary, "post-op", and that while we may need to have Luke on Amioderone for a few months after we take him home, he won't need it indefinitely. He believes that this problem with the arrhythmia will work itself out in a little while. This is a relief to hear, but David and I are still nervous about the problem until we can see the effects of the drug start working and we go a couple of days without any crazy episodes.
Meanwhile, they are getting more aggressive with Luke's dialasis to try and get more fluid/swelling/adema off of Luke's body. This will enable Luke's lungs to expand more, allowing him to breathe more effectively, and hopefully in a few days get him of the ventilator. His night doctor last night had his foley catheter (for his urine) reinserted to keep better track of his urine output. His kidneys continue to improve a little each day based on the chemistry levels shown by his blood work. We don't have an idea when they might take Luke off of dialysis. Luke's leg looks almost back to normal, which we are really happy about. We haven't had any more seizures or any other reason to worry abou this brain any further. Luke's gotten up to full feeds - he gets 18 mL of breatmilk every hour continuously. We've begun something called pressure support trials with his ventilator. This means that for one hour, every four hours, the ventilator stops giving Luke breaths. Luke initiates every breath on his own, and the ventilotr gives him a little extra volume of Oxygen and a little extra pressure. In doing this we are teaching Luke to breathe on his own. So far Luke has done very well with most of his pressure trials. We haven't done one this morning because of his heart rate episode, but I believe they'll resume this afternoon.
One final thing, since Luke's ventilator and feeding tubes are now through his nose, he has room in his mouth to take a pacifier. Yesterday Luke went to town on his passifier two seperate times for about an hour each time. David and I are encouraged, thinking that if he can suck for that long, he should be able to take a full feeding. If we can get his heart under control, maybe we won't be in NICU for too long teaching Luke how to eat.
I think that's all the news. Thanks for bearing with me through all of this confusing information.
Thank you for your continued prayers. Please pray for Luke's arrhythmia to work itself out with the help of this medication. Please pray that the doctors gain full understanding and insight into this problem so they know the best way to treat it. Pray that we get to hold him soon.
We love you.
Blessings,
Rachael & David
Sunday, June 21, 2009
Sunday
Doctors still can't get a handle on Luke's arrhythmia. Heart rate's up to the 190's. Everything else is going pretty well. Luke might be able to get off the ventilator soon and get his chest tube and right atrium lines out within the next couple of days. Please pray for Luke's doctors to have wisdom and insight in treating his arrhythmia. Dave and I are getting pretty antsy with this problem.
Saturday, June 20, 2009
Thursday
Originally posted June 18, 2009
Fast Heart rate is being treated with medication (this is actually a medication we can give at home). Docs say he'll need it indefinitely. They say it's because of having to reduce the size of his atrium and the top half of his heart isn't communicating well with the bottom half. We had to bring in the heart beat specialist from Austin to make this diagnosis. HR should be slowing down in the next 24-48 hours.
Fast Heart rate is being treated with medication (this is actually a medication we can give at home). Docs say he'll need it indefinitely. They say it's because of having to reduce the size of his atrium and the top half of his heart isn't communicating well with the bottom half. We had to bring in the heart beat specialist from Austin to make this diagnosis. HR should be slowing down in the next 24-48 hours.
Quick update by request
Originally posted June 16, 2009
Some of you have requested an update after Luke's chest closure.
Yesterday, Dr. Mendeloff closed Luke's open chest. The surgeon left Luke's chest open after his operation to allow Luke's heart to expand and swell as it adjusted to the changes that were made. We were told that this is a common thing to do on babies like Luke, and he would likely have his chest closed between 2 and 7 days after his operation. Because of Luke's body swelling caused by his kidney disfunction, they were not able to close his chest sooner. By yesterday however, his swelling had reduced enough to make it possible. The proceedure took about an hour and a half and we were able to go back and be with Luke about 2 hours after we left him. Luke's incision is now sewn closed and his sternum is closed back together with wires. He'll have scars to match his mommy :).
Meanwhile, Luke is a little more swollen today than yesterday, even though he peed over 120 mL in 24 hours yesterday. YAY! They are continuing to pull fluid off his body through dialysis. To get off dialysis, we've met the first goal of peeing 1 mL per kilo per hour. This has to be done consistently over several days. Luke's creatanin (sp?) and BUN (no idea what that stands for) levels must also return to normal, and we have quite a ways to go on that front.
Luke's leg is doing much better, though they are continuing to attempt to reduce the swelling with warm packs on both legs. Apparently warm packs on his left leg will encourage the blood vessels in his right leg to dialate and reduce the swelling.
Luke's returned to taking some medications that he had been weaned off of, but the nurses say that's common for a brief period after chest closure. He is being slowly weaned off his ventilator settings. He's taking quite a bit more breaths than just those that the ventilator is giving him, so that is a good step in the right direction. They have begun feeding him 2 mL of mom's milk per hour. They are starting very slowly to allow his digestive system to slowly wake up and not be overloaded. Also today, he is less sedated, so we've gotten to see more of his beautiful eyes.
David and I are much more at peace yesterday and today to see him doing so well. His nurse last night commented that she expected he would be back down in NICU by the beginning of next week. That's far from the final word, but we're excited that these medical professionals keep commenting that he's doing so well.
Continue to pray. Getting off dialysis seem to be our last hurdle before going back down to NICU to learn to eat. Please pray for a fast recovery. We're so ready to be back home.
Thanks for your prayers. We love you,
David and Rachael
Some of you have requested an update after Luke's chest closure.
Yesterday, Dr. Mendeloff closed Luke's open chest. The surgeon left Luke's chest open after his operation to allow Luke's heart to expand and swell as it adjusted to the changes that were made. We were told that this is a common thing to do on babies like Luke, and he would likely have his chest closed between 2 and 7 days after his operation. Because of Luke's body swelling caused by his kidney disfunction, they were not able to close his chest sooner. By yesterday however, his swelling had reduced enough to make it possible. The proceedure took about an hour and a half and we were able to go back and be with Luke about 2 hours after we left him. Luke's incision is now sewn closed and his sternum is closed back together with wires. He'll have scars to match his mommy :).
Meanwhile, Luke is a little more swollen today than yesterday, even though he peed over 120 mL in 24 hours yesterday. YAY! They are continuing to pull fluid off his body through dialysis. To get off dialysis, we've met the first goal of peeing 1 mL per kilo per hour. This has to be done consistently over several days. Luke's creatanin (sp?) and BUN (no idea what that stands for) levels must also return to normal, and we have quite a ways to go on that front.
Luke's leg is doing much better, though they are continuing to attempt to reduce the swelling with warm packs on both legs. Apparently warm packs on his left leg will encourage the blood vessels in his right leg to dialate and reduce the swelling.
Luke's returned to taking some medications that he had been weaned off of, but the nurses say that's common for a brief period after chest closure. He is being slowly weaned off his ventilator settings. He's taking quite a bit more breaths than just those that the ventilator is giving him, so that is a good step in the right direction. They have begun feeding him 2 mL of mom's milk per hour. They are starting very slowly to allow his digestive system to slowly wake up and not be overloaded. Also today, he is less sedated, so we've gotten to see more of his beautiful eyes.
David and I are much more at peace yesterday and today to see him doing so well. His nurse last night commented that she expected he would be back down in NICU by the beginning of next week. That's far from the final word, but we're excited that these medical professionals keep commenting that he's doing so well.
Continue to pray. Getting off dialysis seem to be our last hurdle before going back down to NICU to learn to eat. Please pray for a fast recovery. We're so ready to be back home.
Thanks for your prayers. We love you,
David and Rachael
Looks like we're finally turning a corner
Originally posted June 13, 2009
Wow, have we had a stressfull couple of days!
Last time I gave an update on our precious little son, was the day he had his surgery. Almost a week ago. It's not for not having anything to report, it's because things have been so scary and crazy and awful that I haven't gotten a chance to get on the computer. I know that when things were the worst was when I needed to rally everyone to pray, but I have had faith that people have continued to pray earnestly, even though you don't know the specifics.
Most scary was when we were waiting for Luke to come out of surgery when we could go in and see him. The surgeon's nurse came out and told us that Luke's heart had arrested in the elevator going up to his room. they couldn't shock him out of it, and so had to be put on a heart lung machine called ECMO. This machine did all the work of Luke's heart and lungs for him while he rested and started to recover from the shock of surgery and cardiac arrest. Luke was in arrest for 27 minutes. This seems like a really long time to me, but the nurses tell us that Luke was able to be put on ECMO lightening fast. This was able to happen because Dr. Mendeloff, Luke's surgeon, was in the next room preparing for his second case. God was with Luke, answering all of our prayers by making Dr. Mendeloff so near and available to save Luke's life for the second time that day.
We were told that one of the risks of ECMO is bleeding into the brain. They told us that if Luke began bleeding in his brain, they would have to take him off ECMO, and his heart would either have to work properly, or he would die. Before the surgery, Dr. Mendeloff told us that Luke would get much sicker after surgery before he got better. They told us when we saw him right afterward, we would see his chest still open (though covered with a skin-like membrane) to allow his heart room to swell, lots of new IV lines, he would look pale, and he would be cold to help his heart regulate his heart beat. I thought I was prepared. I wasn't. When I walked into his room, the first thing I saw was his IV tree. Luke had two IV poles by his bed and I counted 18 different medications being given to him at the same time. When I looked at my son, he looked dead. I would have thought he was if I couldn't hear his heart beat on the monitor. He was so pale and still. His body looked like he had been through a war. Like he had been chewed up and spit back out. He looked like a little doll chewed up by a dog and then sewn, taped, wired, and jerry rigged back together. I was in shock. I couldn't speak, all I could do was cry. It didn't even look like my little Lucas.
On Wednesday, the doctors were encouraged that his heart and lungs were doing well and had become strong enough to do the work on their own. God was again in the timing because we found out that morning that Luke had begun to bleed a small amount into his brain. We needed to take him off the machine, and he could not go back on because of the bleeding. We prayed that Luke could survive on his own. All throughout the day they weaned Luke from the machine and he did more and more of the work on his own. About 5:00 that evening they took him off completely and he did beautifully, in terms of his heart and lungs. That moment began a second critical period of 48 hours in which we waited to see if Luke could take what we are putting his heart through. David and I traded off shifts, allowing each to sleep a little while one of us was with him around the clock.
We were told that Luke would get sicker, but we only expected things to go wrong that were heart-related. We were wrong again. All kinds of things started to go wrong all over Luke's body. One of the down sides to the ECMO is instead of your body parts getting a pulsating flow of blood like they woud when your heart beats, they get a continual steady stream of blood. The kidneys really don't like this. So this pulse problem coupled with the 27 minutes of arrest on Monday caused Luke to go into kidney (renal) failure. He stopped making urine and doing other things that kidneys are supposed to do like regulate potassium and calcium levels and make red blood cells. Wednesday morning they told us that Luke would have to go on dialisis because his potassium levels were getting dangerous. So they again transformed his hosipital room into an operating suite (they did this when they took him of ECMO) and put in a dialisis catheter into his abdomen and started his dialisis treatments. Because of going on dialisis, Luke's fluid levels and body chemistry, primarily his glucose levels and blood pressure, are constantly out of whack.
Also Wednesday morning at 6:00 and 6:45, my mom and I witnessed Luke have two siezures. They don't know why he had these siezures, but it probably has to do with either the 27 minute arrest, the bleeding in the brain caused by ECMO, or both. They will do a Head CT later when Luke is stable enough to move to the CT lab.
Luke is also having trouble with the circulation in his right leg. They had an arterial line in his right foot, but somehow it caused a blockage in the veins of some kind, causing his leg to become engorged with blood. His leg has been purple from the knee down and incredibly swollen.
Wednesday was a nightmare, and I admit I had several moments when I wondered why we were putting him through so much. It was difficult for me to comprehend that his heart isn't the only thing we have to worry about. It's so incredibly frustrating to have things that are supposed to help him, like ECMO and dialasis, end up causing more and more problems for Luke to surmount.
Yesterday and today though, we feel that Luke has turned a corner. Instead of getting progressively worse, they seem to be getting better bit by bit. David and I arrived at the hospital this morning to meet the smiles of his cardiologist and his surgeon. They announced that he's making a little bit of urine now, the swelling in his body is going down, so they may be able to close his chest on Monday. They both were quite encouraged, which as you can imagine is quite a relief to David and me. His blood pressure is becoming more steady, and it looks like we have his chemistry levels under control for the time being. His little leg is even headed towards the right color, though it's still very swollen.
We've had an extremely long week, and the road will still be longer. We need to pray that function will return fully to Luke's kidneys, that his heart and lungs will continue to get stronger so we can get off of the pacemaker, and that God has protected Luke's brain from any damage in function through the 27 minute arrest and siezures. We need strength to keep going with Luke through this. I knew this was going to be very hard, but I didn't expect it to be THIS hard. I'm thankful that my mom and dad are still here to support us. They will go home on Monday. David's sister is getting married today, so David has gone for the day to see her get married. He'll return late tonight. Please pray that nothing critical happens while he's gone.
Thank you all for your continued prayers and support. We love you.
Blessings,
Rachael & David
Wow, have we had a stressfull couple of days!
Last time I gave an update on our precious little son, was the day he had his surgery. Almost a week ago. It's not for not having anything to report, it's because things have been so scary and crazy and awful that I haven't gotten a chance to get on the computer. I know that when things were the worst was when I needed to rally everyone to pray, but I have had faith that people have continued to pray earnestly, even though you don't know the specifics.
Most scary was when we were waiting for Luke to come out of surgery when we could go in and see him. The surgeon's nurse came out and told us that Luke's heart had arrested in the elevator going up to his room. they couldn't shock him out of it, and so had to be put on a heart lung machine called ECMO. This machine did all the work of Luke's heart and lungs for him while he rested and started to recover from the shock of surgery and cardiac arrest. Luke was in arrest for 27 minutes. This seems like a really long time to me, but the nurses tell us that Luke was able to be put on ECMO lightening fast. This was able to happen because Dr. Mendeloff, Luke's surgeon, was in the next room preparing for his second case. God was with Luke, answering all of our prayers by making Dr. Mendeloff so near and available to save Luke's life for the second time that day.
We were told that one of the risks of ECMO is bleeding into the brain. They told us that if Luke began bleeding in his brain, they would have to take him off ECMO, and his heart would either have to work properly, or he would die. Before the surgery, Dr. Mendeloff told us that Luke would get much sicker after surgery before he got better. They told us when we saw him right afterward, we would see his chest still open (though covered with a skin-like membrane) to allow his heart room to swell, lots of new IV lines, he would look pale, and he would be cold to help his heart regulate his heart beat. I thought I was prepared. I wasn't. When I walked into his room, the first thing I saw was his IV tree. Luke had two IV poles by his bed and I counted 18 different medications being given to him at the same time. When I looked at my son, he looked dead. I would have thought he was if I couldn't hear his heart beat on the monitor. He was so pale and still. His body looked like he had been through a war. Like he had been chewed up and spit back out. He looked like a little doll chewed up by a dog and then sewn, taped, wired, and jerry rigged back together. I was in shock. I couldn't speak, all I could do was cry. It didn't even look like my little Lucas.
On Wednesday, the doctors were encouraged that his heart and lungs were doing well and had become strong enough to do the work on their own. God was again in the timing because we found out that morning that Luke had begun to bleed a small amount into his brain. We needed to take him off the machine, and he could not go back on because of the bleeding. We prayed that Luke could survive on his own. All throughout the day they weaned Luke from the machine and he did more and more of the work on his own. About 5:00 that evening they took him off completely and he did beautifully, in terms of his heart and lungs. That moment began a second critical period of 48 hours in which we waited to see if Luke could take what we are putting his heart through. David and I traded off shifts, allowing each to sleep a little while one of us was with him around the clock.
We were told that Luke would get sicker, but we only expected things to go wrong that were heart-related. We were wrong again. All kinds of things started to go wrong all over Luke's body. One of the down sides to the ECMO is instead of your body parts getting a pulsating flow of blood like they woud when your heart beats, they get a continual steady stream of blood. The kidneys really don't like this. So this pulse problem coupled with the 27 minutes of arrest on Monday caused Luke to go into kidney (renal) failure. He stopped making urine and doing other things that kidneys are supposed to do like regulate potassium and calcium levels and make red blood cells. Wednesday morning they told us that Luke would have to go on dialisis because his potassium levels were getting dangerous. So they again transformed his hosipital room into an operating suite (they did this when they took him of ECMO) and put in a dialisis catheter into his abdomen and started his dialisis treatments. Because of going on dialisis, Luke's fluid levels and body chemistry, primarily his glucose levels and blood pressure, are constantly out of whack.
Also Wednesday morning at 6:00 and 6:45, my mom and I witnessed Luke have two siezures. They don't know why he had these siezures, but it probably has to do with either the 27 minute arrest, the bleeding in the brain caused by ECMO, or both. They will do a Head CT later when Luke is stable enough to move to the CT lab.
Luke is also having trouble with the circulation in his right leg. They had an arterial line in his right foot, but somehow it caused a blockage in the veins of some kind, causing his leg to become engorged with blood. His leg has been purple from the knee down and incredibly swollen.
Wednesday was a nightmare, and I admit I had several moments when I wondered why we were putting him through so much. It was difficult for me to comprehend that his heart isn't the only thing we have to worry about. It's so incredibly frustrating to have things that are supposed to help him, like ECMO and dialasis, end up causing more and more problems for Luke to surmount.
Yesterday and today though, we feel that Luke has turned a corner. Instead of getting progressively worse, they seem to be getting better bit by bit. David and I arrived at the hospital this morning to meet the smiles of his cardiologist and his surgeon. They announced that he's making a little bit of urine now, the swelling in his body is going down, so they may be able to close his chest on Monday. They both were quite encouraged, which as you can imagine is quite a relief to David and me. His blood pressure is becoming more steady, and it looks like we have his chemistry levels under control for the time being. His little leg is even headed towards the right color, though it's still very swollen.
We've had an extremely long week, and the road will still be longer. We need to pray that function will return fully to Luke's kidneys, that his heart and lungs will continue to get stronger so we can get off of the pacemaker, and that God has protected Luke's brain from any damage in function through the 27 minute arrest and siezures. We need strength to keep going with Luke through this. I knew this was going to be very hard, but I didn't expect it to be THIS hard. I'm thankful that my mom and dad are still here to support us. They will go home on Monday. David's sister is getting married today, so David has gone for the day to see her get married. He'll return late tonight. Please pray that nothing critical happens while he's gone.
Thank you all for your continued prayers and support. We love you.
Blessings,
Rachael & David
Luke's First Heart Surgery
Originally posted June 8, 2009
We are sitting in the OR waiting room. After 7 and a half hours, Luke is finished with surgery and is headed up to recovery in the Pediatric Cardiovascular Intensive Care Unit. The surgeon is "cautiously optimistic".
The surgeon said that he did everything he planned to do and most of it went according to plan. He put a patch over the valve that isn't working, so blood will no longer pass through that valve into the right ventricle. Instead, blood will get to the lungs to get oxygenated through a shunt that the surgeon placed between his right atrium and the aorta. He also cut out some of Luke's right atrium because it was too big. The surgeon also closed off the artery (PDA) that they've been keeping open with medication. The PDA is important for fetal anatomy, but isn't normally used in infant anatomy. The PDA normally closes within 24 hours of birth, but in Luke, we needed to keep it open so blood could get to the lungs another way. Now that we have the shunt, we don't need the PDA to stay open anymore. No more medication that makes him sleepy or causes apnea! So Luke should be awake and alert more often once he gets off of his sedation and anesthesia meds.
Because of the surgery, Luke's heart (left atrium and ventricle) is substantially smaller (and will get still smaller as time goes on). Therefore, his lungs have more room to expand, and guess what, they are both inflated! These are all answers to prayer, and we thank you for praying them and thank God for answering them.
Some things did not go according to plan. The surgery was supposed to take between 4 and 6 hours. We left Luke to a very nice anesthesiologist at a little after 8 this morning. The anesthesiologist planned to put in several new "lines" before the actual operation started. These lines are for blood draws and giving Luke medication intravenously and some other things. Luke is notoriously difficult to "stick" and establish these IV lines. The anesthesiologist tried to get these lines in for I think over two hours and couldn't get them. So Dr. Mendeloff, our surgeon, came to the rescue and got them in. Surgery commenced about 11:00-11:30. The other thing that didn't go according to plan is that patients who have a shunt put in like Luke are prescribed baby aspirin to avoid clotting at the shunt site. Luke's been on aspirin for about 10 days, but should have come off of it temporarily 72 hours before surgery. The neonatologists never gave that order, so Luke got some doses of aspirin that he shouldn't have, and this made it pretty difficult for his blood to coagulate after surgery. Post op took a really long time.
Dr. Mendeloff came out and talked to us about the surgery and then left. About 30 minutes to 1 hour later his nurse came out and talked to us again. She explained that during the surgery Luke's heart had trouble keeping a rhythm a few times and they had to shock him. This is pretty normal during heart surgery. However, on his way up to recovery this happened again and shocking him didn't help. She explained that his heart is too sick and too tired to beat on his own right now. So they put him on a heart/lung machine just like the one he was on during surgery. This does all the work of the heart and lungs for him. She explained that Luke can be on this machine for up to 5 days. If his heart cannot do the work on its own after these five days, it means that it will not recover and Luke will die. If it can, then they will slowly ween him off the machine and then he will recover as planned. Also with this machine there is a risk of bleeding into the brain. They will do a brain scan (sonogram?) every day to monitor for this. If he does bleed into his brain, they must take him off the machine and he will have to make it on his own or die. The surgeon and cardiologist say that he still has a very good chance for recovery, so that's good news. We are very scared about this and are on pins and needles waiting for Luke to recover. Please pray.
If Luke recovers as expected, we expect Luke to be in the Pediatric ICU for 1-2 weeks (about), and then he will go back to the Neonatal ICU where he will learn to eat without a feeding tube. This time in the NICU we are told can take anywhere to a few weeks to a few months. Heart babies typically have a pretty difficult time learning to eat on their own because they tend to tire so quickly. But Luke is strong, and we have every hope that this stage in the process will go quickly. Once he can take every feeding on his own, we can, hear this, FINALLY TAKE HIM HOME!
One final thought. On Mondays Dr. Mendeloff takes part in a conference with other leading cardio and thoracic surgeons in which they share info on cases and put their heads together to make the best decisions for patients. Dr. Mendeloff presented Luke's case in this morning's conference. Once he showed them Luke's chest x-ray, the doctors could not believe that Luke survived the pregnancy with his heart as big as he did. They have never seen that before. That's the power of prayer folks. No matter what happens, Luke is a testimony of faith and the power of prayer, simply because he survived pregnancy and was born at all.
So we implore you to pray Luke through these next 5 days. We need this baby boy healthy and to continue influencing people for his kingdom.
We thank you for the prayers that have gone up today for him (and for comfort for mamma and daddy), and we ask you to keep it up.
We love you.
Blessings,
Rachael & David
We are sitting in the OR waiting room. After 7 and a half hours, Luke is finished with surgery and is headed up to recovery in the Pediatric Cardiovascular Intensive Care Unit. The surgeon is "cautiously optimistic".
The surgeon said that he did everything he planned to do and most of it went according to plan. He put a patch over the valve that isn't working, so blood will no longer pass through that valve into the right ventricle. Instead, blood will get to the lungs to get oxygenated through a shunt that the surgeon placed between his right atrium and the aorta. He also cut out some of Luke's right atrium because it was too big. The surgeon also closed off the artery (PDA) that they've been keeping open with medication. The PDA is important for fetal anatomy, but isn't normally used in infant anatomy. The PDA normally closes within 24 hours of birth, but in Luke, we needed to keep it open so blood could get to the lungs another way. Now that we have the shunt, we don't need the PDA to stay open anymore. No more medication that makes him sleepy or causes apnea! So Luke should be awake and alert more often once he gets off of his sedation and anesthesia meds.
Because of the surgery, Luke's heart (left atrium and ventricle) is substantially smaller (and will get still smaller as time goes on). Therefore, his lungs have more room to expand, and guess what, they are both inflated! These are all answers to prayer, and we thank you for praying them and thank God for answering them.
Some things did not go according to plan. The surgery was supposed to take between 4 and 6 hours. We left Luke to a very nice anesthesiologist at a little after 8 this morning. The anesthesiologist planned to put in several new "lines" before the actual operation started. These lines are for blood draws and giving Luke medication intravenously and some other things. Luke is notoriously difficult to "stick" and establish these IV lines. The anesthesiologist tried to get these lines in for I think over two hours and couldn't get them. So Dr. Mendeloff, our surgeon, came to the rescue and got them in. Surgery commenced about 11:00-11:30. The other thing that didn't go according to plan is that patients who have a shunt put in like Luke are prescribed baby aspirin to avoid clotting at the shunt site. Luke's been on aspirin for about 10 days, but should have come off of it temporarily 72 hours before surgery. The neonatologists never gave that order, so Luke got some doses of aspirin that he shouldn't have, and this made it pretty difficult for his blood to coagulate after surgery. Post op took a really long time.
Dr. Mendeloff came out and talked to us about the surgery and then left. About 30 minutes to 1 hour later his nurse came out and talked to us again. She explained that during the surgery Luke's heart had trouble keeping a rhythm a few times and they had to shock him. This is pretty normal during heart surgery. However, on his way up to recovery this happened again and shocking him didn't help. She explained that his heart is too sick and too tired to beat on his own right now. So they put him on a heart/lung machine just like the one he was on during surgery. This does all the work of the heart and lungs for him. She explained that Luke can be on this machine for up to 5 days. If his heart cannot do the work on its own after these five days, it means that it will not recover and Luke will die. If it can, then they will slowly ween him off the machine and then he will recover as planned. Also with this machine there is a risk of bleeding into the brain. They will do a brain scan (sonogram?) every day to monitor for this. If he does bleed into his brain, they must take him off the machine and he will have to make it on his own or die. The surgeon and cardiologist say that he still has a very good chance for recovery, so that's good news. We are very scared about this and are on pins and needles waiting for Luke to recover. Please pray.
If Luke recovers as expected, we expect Luke to be in the Pediatric ICU for 1-2 weeks (about), and then he will go back to the Neonatal ICU where he will learn to eat without a feeding tube. This time in the NICU we are told can take anywhere to a few weeks to a few months. Heart babies typically have a pretty difficult time learning to eat on their own because they tend to tire so quickly. But Luke is strong, and we have every hope that this stage in the process will go quickly. Once he can take every feeding on his own, we can, hear this, FINALLY TAKE HIM HOME!
One final thought. On Mondays Dr. Mendeloff takes part in a conference with other leading cardio and thoracic surgeons in which they share info on cases and put their heads together to make the best decisions for patients. Dr. Mendeloff presented Luke's case in this morning's conference. Once he showed them Luke's chest x-ray, the doctors could not believe that Luke survived the pregnancy with his heart as big as he did. They have never seen that before. That's the power of prayer folks. No matter what happens, Luke is a testimony of faith and the power of prayer, simply because he survived pregnancy and was born at all.
So we implore you to pray Luke through these next 5 days. We need this baby boy healthy and to continue influencing people for his kingdom.
We thank you for the prayers that have gone up today for him (and for comfort for mamma and daddy), and we ask you to keep it up.
We love you.
Blessings,
Rachael & David
Post Heart Catherization
Originally posted May 29, 2009
Here's the next update on our little champion Luke:
Yesterday Luke underwent a proceedure called a heart catheterization. In this proceedure the doctor inserted a tiny catheter in a blood vessel in Luke's leg. Then he threaded the catheter up the blood vessel into Luke's heart. From there he took still and movie pictures of his heart and measured the pressures of blood flow in various places. For this proceedure, Luke was under general anesthesia. It was very hard for me to watch all those doctors and nurses wheel him down the hall where I couldn't follow. It didn't help that he was upset by all the jostling before they gave him anesthesia. All I could do was kiss him goodbye and cry and pray that things would go okay.
Things did go okay. The proceedure took about 2 and 1/2 hours. The nurse called us periodically throughout the proceedure to tell us that Luke was doing okay. Afterwards when the doctor came out to report, he told us that he had had trouble inserting the catheter. So the heart surgeon had to come in and make an incision to insert the catheter. After that, the proceedure went very smoothly. The doctor said that he discovered that there is a healthy artery going to the lung that isn't inflated. This is really good news because that means that this lung is getting blood flow and is alive, not just a mass of useless tissue. Hopes for that lung inflating are good. The doctor also said that the proceedure confirmed the plan for surgery soon in which they will put a shunt in his heart to make a way for blood to get to the lungs without medication. This is good news too.
When Luke came out of the proceedure he was very still and asleep for the rest of the day. I called to check on him in the middle of the night, and the nurse said she had given him some pain medication. When we came to the hospital this morning, Luke needed a blood transfusion because one of his blood tests was less than great. He also was retaining fluid, so they gave him a dierhetic. All in all he's doing very well, and recovery is expected to be uneventful.
We talked with Dr. Kao (his cardiologist) twice yesterday, and she is very bright about Luke's future. She was very encouraged to know that both lungs are getting blood flow. She and Dr. Mendeloff have set surgery for Monday, June 8, first thing in the morning. After that, Luke will head up to the Pediatric ICU in the cardiac ward for recovery for an expected week to 10 days. Then he will return to NICU to learn to eat and breathe on his own. We don't know how long that will take. It could take a long time. Then, Lord willing, we will take him home until his next surgery at 4-6 months old. David and I were hoping for surgery to be sooner, but we are encouraged knowing that Dr. Mendeloff is not squeezing Luke in somewhere, but the surgery will be planned, deliberate, and on the docket first for the week. We like our surgeons fresh and full of energy and focus. :)
Thanks for praying. Yesterday was trying, but we all made it through praise be to God!
Blessings,
Rachael & David
Here's the next update on our little champion Luke:
Yesterday Luke underwent a proceedure called a heart catheterization. In this proceedure the doctor inserted a tiny catheter in a blood vessel in Luke's leg. Then he threaded the catheter up the blood vessel into Luke's heart. From there he took still and movie pictures of his heart and measured the pressures of blood flow in various places. For this proceedure, Luke was under general anesthesia. It was very hard for me to watch all those doctors and nurses wheel him down the hall where I couldn't follow. It didn't help that he was upset by all the jostling before they gave him anesthesia. All I could do was kiss him goodbye and cry and pray that things would go okay.
Things did go okay. The proceedure took about 2 and 1/2 hours. The nurse called us periodically throughout the proceedure to tell us that Luke was doing okay. Afterwards when the doctor came out to report, he told us that he had had trouble inserting the catheter. So the heart surgeon had to come in and make an incision to insert the catheter. After that, the proceedure went very smoothly. The doctor said that he discovered that there is a healthy artery going to the lung that isn't inflated. This is really good news because that means that this lung is getting blood flow and is alive, not just a mass of useless tissue. Hopes for that lung inflating are good. The doctor also said that the proceedure confirmed the plan for surgery soon in which they will put a shunt in his heart to make a way for blood to get to the lungs without medication. This is good news too.
When Luke came out of the proceedure he was very still and asleep for the rest of the day. I called to check on him in the middle of the night, and the nurse said she had given him some pain medication. When we came to the hospital this morning, Luke needed a blood transfusion because one of his blood tests was less than great. He also was retaining fluid, so they gave him a dierhetic. All in all he's doing very well, and recovery is expected to be uneventful.
We talked with Dr. Kao (his cardiologist) twice yesterday, and she is very bright about Luke's future. She was very encouraged to know that both lungs are getting blood flow. She and Dr. Mendeloff have set surgery for Monday, June 8, first thing in the morning. After that, Luke will head up to the Pediatric ICU in the cardiac ward for recovery for an expected week to 10 days. Then he will return to NICU to learn to eat and breathe on his own. We don't know how long that will take. It could take a long time. Then, Lord willing, we will take him home until his next surgery at 4-6 months old. David and I were hoping for surgery to be sooner, but we are encouraged knowing that Dr. Mendeloff is not squeezing Luke in somewhere, but the surgery will be planned, deliberate, and on the docket first for the week. We like our surgeons fresh and full of energy and focus. :)
Thanks for praying. Yesterday was trying, but we all made it through praise be to God!
Blessings,
Rachael & David
Luke is Two Weeks Old!
Originally posted May 26, 2009
Luke has successfully turned two weeks old! Yay Luke!
For the past couple of days, we've been in a sort of holding pattern and will be for a couple more. We've certainly had good days and bad days in the last week. There have been times where Luke's oxygen saturation levels were very worrisome, even when he was on 70% oxygen. We have also seen times this week where Luke required no extra oxygen above room air and his saturation levels were fantastic. The past two days and nights have been really good ones, praise God. The doctors and nurses think that this is probably because they just gave him another dose of Lasix, which removes the fluid from his lungs, making it easier to breathe. David and I are holding faith that his improved breathing is because God has answered our prayers and his lung has inflated (no doctors have told us that this is their theory - that's just our theory). They won't truly know the exact state of his right lung until they get to surgery.
The CT scan that Luke recieved last week largely motivated the doctors to go ahead and plan for surgery soon. On Friday Luke got a sonogram of his heart (echocardiogram) and nothing has changed. We still are not getting any blood flow through the Pulminary Artery. Thus our former hopes of Luke's condition improving with just medication are a no go. His defect must be corrected with heart surgery. On Thursday afternoon, Luke will undergo a proceedure called a heart catheterization. They will insert a catheter through one of his blood vessels probably in his leg and thread the catheter up to his heart. Then they inject dye into his heart and essentially take a movie of the flow and pressures of the blood flow through his heart. This proceedure is expected to take between 30 minutes and 3 hours, and will help the doctors decide where to place his shunt in the surgery.
The next step is surgery that will take place between this Friday and next Friday, depending upon the surgeon's schedule. We need one particular surgeon's skills for this, and he is in very high demand. If Luke's condition worsens, the cardiologist promised me that we can move up the surgery to an emergency level, but right now we're not on an ASAP basis. Meanwhile, the next few days give Luke a little more time to get some last growing and strengthening in before they cut open his tiny chest. Mom and Dad can't go with him through the heart cath proceedure, so pray for us as we wait and hope. We have not been informed yet of the exact risks etc. of the heart cath proceedure, but we are told by the neonatologist that all babies in his experience have done just fine through the proceedure. One baby in his experience has done poorly after the proceedure. So pray for Luke that he gets through this, like the other proceedures, "better than we expected".
Luke continues to grow. He's gained about 9 oz. since his birth, but some of this is water weight due to his medication. David and I take turns and one of us gets to hold him for about an hour each day. We've seen a little more of his beautiful eyes. He HATES getting his diaper changed. We've now brought blankets from home for him to be wrapped in, which I think make him a little more comfortable. He loves being swaddled. The docs have continued to increase his feedings; he is no longer receiving supplemental nutrition, just mom's milk. So, lots of things to be thankful for. Lots of things we're still worried about. David and I checked out of our hotel on Sunday for the time being. We're spending the next few days until Luke's surgery commuting back and forth from Terrell, then we'll move back into the hotel for his recovery from surgery. This commute makes for an even longer day, but we do enjoy being back in familiar surroundings.
Thank you for your continued prayers. I see God work in Luke's life and in ours every day. Pray for David and I, as even two weeks on the NICU are wearing. Not getting a lot of sleep, and sometimes that makes it a little hard to not surrender to dispair.
We love you. More later. Thanks for praying.
Rachael & David
Luke has successfully turned two weeks old! Yay Luke!
For the past couple of days, we've been in a sort of holding pattern and will be for a couple more. We've certainly had good days and bad days in the last week. There have been times where Luke's oxygen saturation levels were very worrisome, even when he was on 70% oxygen. We have also seen times this week where Luke required no extra oxygen above room air and his saturation levels were fantastic. The past two days and nights have been really good ones, praise God. The doctors and nurses think that this is probably because they just gave him another dose of Lasix, which removes the fluid from his lungs, making it easier to breathe. David and I are holding faith that his improved breathing is because God has answered our prayers and his lung has inflated (no doctors have told us that this is their theory - that's just our theory). They won't truly know the exact state of his right lung until they get to surgery.
The CT scan that Luke recieved last week largely motivated the doctors to go ahead and plan for surgery soon. On Friday Luke got a sonogram of his heart (echocardiogram) and nothing has changed. We still are not getting any blood flow through the Pulminary Artery. Thus our former hopes of Luke's condition improving with just medication are a no go. His defect must be corrected with heart surgery. On Thursday afternoon, Luke will undergo a proceedure called a heart catheterization. They will insert a catheter through one of his blood vessels probably in his leg and thread the catheter up to his heart. Then they inject dye into his heart and essentially take a movie of the flow and pressures of the blood flow through his heart. This proceedure is expected to take between 30 minutes and 3 hours, and will help the doctors decide where to place his shunt in the surgery.
The next step is surgery that will take place between this Friday and next Friday, depending upon the surgeon's schedule. We need one particular surgeon's skills for this, and he is in very high demand. If Luke's condition worsens, the cardiologist promised me that we can move up the surgery to an emergency level, but right now we're not on an ASAP basis. Meanwhile, the next few days give Luke a little more time to get some last growing and strengthening in before they cut open his tiny chest. Mom and Dad can't go with him through the heart cath proceedure, so pray for us as we wait and hope. We have not been informed yet of the exact risks etc. of the heart cath proceedure, but we are told by the neonatologist that all babies in his experience have done just fine through the proceedure. One baby in his experience has done poorly after the proceedure. So pray for Luke that he gets through this, like the other proceedures, "better than we expected".
Luke continues to grow. He's gained about 9 oz. since his birth, but some of this is water weight due to his medication. David and I take turns and one of us gets to hold him for about an hour each day. We've seen a little more of his beautiful eyes. He HATES getting his diaper changed. We've now brought blankets from home for him to be wrapped in, which I think make him a little more comfortable. He loves being swaddled. The docs have continued to increase his feedings; he is no longer receiving supplemental nutrition, just mom's milk. So, lots of things to be thankful for. Lots of things we're still worried about. David and I checked out of our hotel on Sunday for the time being. We're spending the next few days until Luke's surgery commuting back and forth from Terrell, then we'll move back into the hotel for his recovery from surgery. This commute makes for an even longer day, but we do enjoy being back in familiar surroundings.
Thank you for your continued prayers. I see God work in Luke's life and in ours every day. Pray for David and I, as even two weeks on the NICU are wearing. Not getting a lot of sleep, and sometimes that makes it a little hard to not surrender to dispair.
We love you. More later. Thanks for praying.
Rachael & David
CT Scan Prelim Results
Originally posted May 22, 2009
I know I just wrote a note yesterday, but this morning we got some pretty important information on Luke's condition, wanted to share it with you all so you can continue to pray specifically.
First thing this morning Luke had to go down for a CT scan. David and I were not allowed to go with him, so we arrived at the hospital just after he had returned to his room. Not long after that the neonatologist came to share with us the preliminary results of the CT scan after talking with the radiologist.
Luke has been having so much trouble breathing because he's operating on 2/3 of one lung. The CT scan showed that one of his lungs and the apex portion of his other lung never even inflated because his heart is so large that it is displacing all of the other thoracic organs. This is very serious indeed. We will know a lot more after the radiologist has her full report completed, but this is what it looks like. The good news is that it appears that all of the anatomy that Luke needs to breathe is present, just displaced - pushed out of the way. The neonatologist told us that he plans to do some tricks with Luke's ventilator settings to see if he can push back on the heart with air and try to inflate Luke's lung. Doc seems pretty confident that this is possible. If not, the surgeons can probably inflate it surgically when they go in for Luke's first heart surgery. If that can't even happen, the doc explained that Luke can live a fairly normal life on just two thirds of one lung. He won't be playing contact sports, but he shouldn't need a ventialtor long term either.
On Mondays here at Medical City, all of the cardio and thoracic surgeons meet together for a conference to talk about thier cases. Luke's case will be presented at this Monday's cofnerence, so we will have lots of doctors putting their heads together to come up with the best plan for Luke's treatment.
David and are scared at this news, but somewhat relieved that at least we know the probable reason why Luke is not breathing well. Last night was a bad one for little Luke - they needed his oxygen up to the 70's % and he still needed a breathing treatment. He's doing a little better today, and the doc said that Luke tolerated the field trip to the CT scan much better than he expected. What a champ!
So we need to pray that Luke's lung inflates. Somehow - with ventilator support, surgically, or supernaturally. I don't care. I just want my little boy to be able to breathe.
To leave on a postive note, after Luke's field trip this morning he was awake for a good 20 minutes or so. He was looking around, showing us his beautiful blue eyes, and following Mama and Daddy around the room with his eyes. This is the longest we've seen him awake in his 11 days with us. What a gift!
Thanks for praying. More later.
Blessings,
Rachael & David
I know I just wrote a note yesterday, but this morning we got some pretty important information on Luke's condition, wanted to share it with you all so you can continue to pray specifically.
First thing this morning Luke had to go down for a CT scan. David and I were not allowed to go with him, so we arrived at the hospital just after he had returned to his room. Not long after that the neonatologist came to share with us the preliminary results of the CT scan after talking with the radiologist.
Luke has been having so much trouble breathing because he's operating on 2/3 of one lung. The CT scan showed that one of his lungs and the apex portion of his other lung never even inflated because his heart is so large that it is displacing all of the other thoracic organs. This is very serious indeed. We will know a lot more after the radiologist has her full report completed, but this is what it looks like. The good news is that it appears that all of the anatomy that Luke needs to breathe is present, just displaced - pushed out of the way. The neonatologist told us that he plans to do some tricks with Luke's ventilator settings to see if he can push back on the heart with air and try to inflate Luke's lung. Doc seems pretty confident that this is possible. If not, the surgeons can probably inflate it surgically when they go in for Luke's first heart surgery. If that can't even happen, the doc explained that Luke can live a fairly normal life on just two thirds of one lung. He won't be playing contact sports, but he shouldn't need a ventialtor long term either.
On Mondays here at Medical City, all of the cardio and thoracic surgeons meet together for a conference to talk about thier cases. Luke's case will be presented at this Monday's cofnerence, so we will have lots of doctors putting their heads together to come up with the best plan for Luke's treatment.
David and are scared at this news, but somewhat relieved that at least we know the probable reason why Luke is not breathing well. Last night was a bad one for little Luke - they needed his oxygen up to the 70's % and he still needed a breathing treatment. He's doing a little better today, and the doc said that Luke tolerated the field trip to the CT scan much better than he expected. What a champ!
So we need to pray that Luke's lung inflates. Somehow - with ventilator support, surgically, or supernaturally. I don't care. I just want my little boy to be able to breathe.
To leave on a postive note, after Luke's field trip this morning he was awake for a good 20 minutes or so. He was looking around, showing us his beautiful blue eyes, and following Mama and Daddy around the room with his eyes. This is the longest we've seen him awake in his 11 days with us. What a gift!
Thanks for praying. More later.
Blessings,
Rachael & David
Quick Luke Update
Originally posted May 21, 2009
Hopefully this won't be as long as my "weekly" updates that I share with all of you on Luke, but I just wanted to let you know about the last few days and ask for some specific prayer warrioring.
Tuesday, the neonatologist came in and talked with me while David was out in the lobby trying to get a little sermon work in. The neonatologist talked with me about Luke's prognosis, saying that Luke's medical situation is very unique and very very serious. We knew that, but he indicated that Luke's prognosis is worse than we had talked about before.
Luke is having quite a bit of trouble breathing. We keep having to raise the level of oxygen he's getting through his ventilator, and we don't really know why. Monday and Monday night was particularly bad. The neonatologist wanted David and I to know that while we of course had the option of pursuing every medical treatment available, he also wanted us to know that we have the option of doing nothing. We have the option of taking him home and letting him die peacefully without putting him through months of NICU, tubes, IVs, surgeries, etc. The doctor was very kind as he was saying this, and eventually we figured out that he just wanted us to know that the medical staff would not judge us if and when we decide to "stop" pursuing medical treatment and take him home.
That sounds a whole lot like giving up to me.
So, David and I spent abou 24 hours seriously thinking about what if we lost our precious baby boy. It didnt' take long for us to decide that we would do everything in our power to help him get well, no matter the time or financial cost, as long as Luke has even a very slim chance at a normal life. But have again been slapped in the face with the possible reality that Luke might not make it through surgeries #1, #2, or #3. We spent a long time in tears and in silence and in prayer.
Yesterday afternoon we finally got to speak with Luke's cardiologist, Dr. Kao. She told us that our plan of three surgeries hasn't changed. His heart hasn't changed from the past tests she has done. We're still going to follow the plan. She said it is too early to tell what kind of prognosis Luke really has, but she was quite positive and hopeful that she and Dr. Mendeloff (the surgeon) can give Luke a pretty good shot at a normal life. Her idea about Luke's breathing is that it's possible that his heart (right atrium) is so enlarged that it is pressing on his bronchial tubes or trachea and making it difficult for Luke to get good oxygen flow. She said that if Luke has another bad day like Monday, she will do a CAT scan of his chest and then decide how to proceed. Yesterday and today have been pretty good days so far.
I am reminded that these doctors, as kind and as brilliant as the are, may not realize that God is in control of this situation. We weren't even supposed to make it to 26 weeks, remember? We made it to 38 weeks and 3 days - full term. God has continually surprised and delighted us with his mercy and provision. I fully believe that he's not about to stop now. We pray that God's glory and power is shown to both believers and non-believers alike, and we will know that the LORD is God.
Please pray for Luke's breathing. Pray that he will need less and and less extra oxygen to keep him stable, and that he will be able to breathe normally. Pray that whatever is causeing his breathing difficulties, whether it's the size of his heart or something else, is healed without medical intervention. Pray that God's will is done in the timing of his surgeries. Pray for strength and courage and faith for all three of us.
We love you.
Thanks for praying,
Rachael & David
Hopefully this won't be as long as my "weekly" updates that I share with all of you on Luke, but I just wanted to let you know about the last few days and ask for some specific prayer warrioring.
Tuesday, the neonatologist came in and talked with me while David was out in the lobby trying to get a little sermon work in. The neonatologist talked with me about Luke's prognosis, saying that Luke's medical situation is very unique and very very serious. We knew that, but he indicated that Luke's prognosis is worse than we had talked about before.
Luke is having quite a bit of trouble breathing. We keep having to raise the level of oxygen he's getting through his ventilator, and we don't really know why. Monday and Monday night was particularly bad. The neonatologist wanted David and I to know that while we of course had the option of pursuing every medical treatment available, he also wanted us to know that we have the option of doing nothing. We have the option of taking him home and letting him die peacefully without putting him through months of NICU, tubes, IVs, surgeries, etc. The doctor was very kind as he was saying this, and eventually we figured out that he just wanted us to know that the medical staff would not judge us if and when we decide to "stop" pursuing medical treatment and take him home.
That sounds a whole lot like giving up to me.
So, David and I spent abou 24 hours seriously thinking about what if we lost our precious baby boy. It didnt' take long for us to decide that we would do everything in our power to help him get well, no matter the time or financial cost, as long as Luke has even a very slim chance at a normal life. But have again been slapped in the face with the possible reality that Luke might not make it through surgeries #1, #2, or #3. We spent a long time in tears and in silence and in prayer.
Yesterday afternoon we finally got to speak with Luke's cardiologist, Dr. Kao. She told us that our plan of three surgeries hasn't changed. His heart hasn't changed from the past tests she has done. We're still going to follow the plan. She said it is too early to tell what kind of prognosis Luke really has, but she was quite positive and hopeful that she and Dr. Mendeloff (the surgeon) can give Luke a pretty good shot at a normal life. Her idea about Luke's breathing is that it's possible that his heart (right atrium) is so enlarged that it is pressing on his bronchial tubes or trachea and making it difficult for Luke to get good oxygen flow. She said that if Luke has another bad day like Monday, she will do a CAT scan of his chest and then decide how to proceed. Yesterday and today have been pretty good days so far.
I am reminded that these doctors, as kind and as brilliant as the are, may not realize that God is in control of this situation. We weren't even supposed to make it to 26 weeks, remember? We made it to 38 weeks and 3 days - full term. God has continually surprised and delighted us with his mercy and provision. I fully believe that he's not about to stop now. We pray that God's glory and power is shown to both believers and non-believers alike, and we will know that the LORD is God.
Please pray for Luke's breathing. Pray that he will need less and and less extra oxygen to keep him stable, and that he will be able to breathe normally. Pray that whatever is causeing his breathing difficulties, whether it's the size of his heart or something else, is healed without medical intervention. Pray that God's will is done in the timing of his surgeries. Pray for strength and courage and faith for all three of us.
We love you.
Thanks for praying,
Rachael & David
Luke is One Week Old!
Originally posted May 18, 2009
Wanted to celebrate with everyone that our little champion has made it through the first week of life.
We've had some really rough moments and some moments of triumph. All in all, we're just really thankful that Luke is doing as well as he is. I know that this is because of all the prayers going up for him every day all around the world.
Then night Luke was born, he was taken directly to NICU (That stands for Neonatal Intensive Care Unit) and examined by the neonatologist and Dr. Kao, our beloved cardiologist. They immediately decided to put Luke on a medication called Prostin which will keep open the Patent Ductus Arteriouis. This is an artery that normally closes about 24 hours after birth, but in Luke's case, we need to keep it open because it is the only way that we can get blood to flow to his lungs to get oxygenated. This medication makes Luke very sleepy, so he spends about 98% of his time with his eyes closed. When he does open his eyes, it's just a little slit, so we can't really even see what color they are.
Another side effect of this medication is that it tends to cause him to have apneic spells. This is like when people have sleep apnea--Luke just forgets to breathe sometimes. As a result, the doctors constantly monitor his respiration rate, heart rate, and oxygen saturation. It also has caused Luke to need a respirator and a little extra oxygen. Over the past week, they attempted to take him off the respirator (because he was doing very well) and put him on a device called a CPAP (no idea what that stands for). This is a less invasive way to help him breathe because it goes in his nose rather than down his throat. He was on the CPAP (and another version called the SiPAP) for about a day and a half before the doctor put him back on the ventilator. She said that Luke was just spending too much energy trying to breathe and was tiring out. We need him to rest and grow and get stronger, not wear out. So though going back on the respirator is a step back, it's really going to be better for him in the long run.
The scaireist thing that happened this week was as a result of another side effect of the Prostin. On Thursday my mom and I came back in from lunch (David had gone to the hotel for a much needed rest) and found a neonatologist and two nurses at his bedside and his alarms were going off. After a few minutes of watching, horrified and terrified, the doctor explained to me that his heart rate had skyrocketed to over 200 bpm and was erratic. He asked me to wait outside while they stabilized him. Without David, that was the scariest walk down a halway that I ever took. About half an hour later the doctor came out and told us that they had stabliized him by giving him a different medication to counteract the side effect of the Prostin. His heart rate has been steady since then.
Luke is fed through a feeding tube, I'm not able to feed him directly. Instead, I pump and they feed him my milk through his tube (TMI for some of you, sorry). (Doing this every two hours admittedly makes me feel a little like a dairy cow.) With the feeding tube, they can check how much Luke has absorbed during each feeding. Sometimes he absorbes alot, but more often than not, he absorbs about half or less of what he's been given. We need him to absorb more milk to give him more calories to make him grow strong and big to get ready for surgery.
When Luke was born, they put two lines in his belly button - one for medication to go in, one for blood to get out. While these lines were in, we weren't able to change his diaper or hold him. Day before yesterday they attempted to put a PIC line in (again, I can't tell you what it stands for). The doctor was not able to do it - Luke's veins are so fragile that they couldn't get the catheter threaded through. But yesterday a neonatologist very experienced with the procedure was successful. The PIC line is a little like an IV, but the tube is threaded through his veins and stops next to his heart. This allows medication to go in, but not blood to go out. So Luke has to be stuck for his blood work every day (poor little guy). I was very worried about the procedure because it's pretty painful, and they decided it would be best for Luke's breathing not to sedate him or use anesthetic. I was a mess thinking about my tiny one going through such pain. But on the good side, this line is easier to maintain, and so heaven happened last night. I GOT TO HOLD HIM! For the first time for a whole hour while he was receiving his feeding, I got to sit in a rocker in his room and hold him close. It was blissful, and I think both David and I cried. It was a long wait to finally get to hold him close, kiss him, and smell him, and rock him and sing to him. If Luke has a good evening, David might get a turn to hold him tonight. We'll see.
David and I are doing really well, all things considered. Finally getting to hold Luke really boosted all of our spirits. Luke slept so peacefully and absorbed more food last night than he ever has. We're staying at a hotel just a few minutes north of the hospital, so we can get to the hospital in record time if necessary. I'm coming down off of pregnancy hormones, so I'm quite emotional at times, but David has been golden. He's been so considerate of my post-op pain and varied emotions. I was honestly a little worried about how my love for David would change when our son was born. I didn't need to worry. My love for both David and Luke has increased exponentially. Their love for me and your prayers are what get me through each day (and maybe a couple of pain pills).
So what's next? Luke will get an echocardiogram (sonogram of his heart) on Wednesday, and we should be able to discuss the results with his cardiologist a day or two later. This ECG will let us know if Luke is getting any blood through his Pulmonary Artery. If he is, we may be able to put off surgery for a little longer, allowing him to grow and become stronger. If not, we may be looking at the first of three surgeries sooner rather than later. A heart transplant is still an option, but we don't know how likely that option is. For those of you who want to pray specifically, pray that God's will is done with his Pulminary Artery and that the doctors will decide to operate at the perfect time.
I just wanted spend some time going into more detail about Luke's condition and treatment, for those of you who are interested. As always, we so appreciate your prayers, thoughts, and encouragement. We love you.
Blessings,
Rachael & David
Wanted to celebrate with everyone that our little champion has made it through the first week of life.
We've had some really rough moments and some moments of triumph. All in all, we're just really thankful that Luke is doing as well as he is. I know that this is because of all the prayers going up for him every day all around the world.
Then night Luke was born, he was taken directly to NICU (That stands for Neonatal Intensive Care Unit) and examined by the neonatologist and Dr. Kao, our beloved cardiologist. They immediately decided to put Luke on a medication called Prostin which will keep open the Patent Ductus Arteriouis. This is an artery that normally closes about 24 hours after birth, but in Luke's case, we need to keep it open because it is the only way that we can get blood to flow to his lungs to get oxygenated. This medication makes Luke very sleepy, so he spends about 98% of his time with his eyes closed. When he does open his eyes, it's just a little slit, so we can't really even see what color they are.
Another side effect of this medication is that it tends to cause him to have apneic spells. This is like when people have sleep apnea--Luke just forgets to breathe sometimes. As a result, the doctors constantly monitor his respiration rate, heart rate, and oxygen saturation. It also has caused Luke to need a respirator and a little extra oxygen. Over the past week, they attempted to take him off the respirator (because he was doing very well) and put him on a device called a CPAP (no idea what that stands for). This is a less invasive way to help him breathe because it goes in his nose rather than down his throat. He was on the CPAP (and another version called the SiPAP) for about a day and a half before the doctor put him back on the ventilator. She said that Luke was just spending too much energy trying to breathe and was tiring out. We need him to rest and grow and get stronger, not wear out. So though going back on the respirator is a step back, it's really going to be better for him in the long run.
The scaireist thing that happened this week was as a result of another side effect of the Prostin. On Thursday my mom and I came back in from lunch (David had gone to the hotel for a much needed rest) and found a neonatologist and two nurses at his bedside and his alarms were going off. After a few minutes of watching, horrified and terrified, the doctor explained to me that his heart rate had skyrocketed to over 200 bpm and was erratic. He asked me to wait outside while they stabilized him. Without David, that was the scariest walk down a halway that I ever took. About half an hour later the doctor came out and told us that they had stabliized him by giving him a different medication to counteract the side effect of the Prostin. His heart rate has been steady since then.
Luke is fed through a feeding tube, I'm not able to feed him directly. Instead, I pump and they feed him my milk through his tube (TMI for some of you, sorry). (Doing this every two hours admittedly makes me feel a little like a dairy cow.) With the feeding tube, they can check how much Luke has absorbed during each feeding. Sometimes he absorbes alot, but more often than not, he absorbs about half or less of what he's been given. We need him to absorb more milk to give him more calories to make him grow strong and big to get ready for surgery.
When Luke was born, they put two lines in his belly button - one for medication to go in, one for blood to get out. While these lines were in, we weren't able to change his diaper or hold him. Day before yesterday they attempted to put a PIC line in (again, I can't tell you what it stands for). The doctor was not able to do it - Luke's veins are so fragile that they couldn't get the catheter threaded through. But yesterday a neonatologist very experienced with the procedure was successful. The PIC line is a little like an IV, but the tube is threaded through his veins and stops next to his heart. This allows medication to go in, but not blood to go out. So Luke has to be stuck for his blood work every day (poor little guy). I was very worried about the procedure because it's pretty painful, and they decided it would be best for Luke's breathing not to sedate him or use anesthetic. I was a mess thinking about my tiny one going through such pain. But on the good side, this line is easier to maintain, and so heaven happened last night. I GOT TO HOLD HIM! For the first time for a whole hour while he was receiving his feeding, I got to sit in a rocker in his room and hold him close. It was blissful, and I think both David and I cried. It was a long wait to finally get to hold him close, kiss him, and smell him, and rock him and sing to him. If Luke has a good evening, David might get a turn to hold him tonight. We'll see.
David and I are doing really well, all things considered. Finally getting to hold Luke really boosted all of our spirits. Luke slept so peacefully and absorbed more food last night than he ever has. We're staying at a hotel just a few minutes north of the hospital, so we can get to the hospital in record time if necessary. I'm coming down off of pregnancy hormones, so I'm quite emotional at times, but David has been golden. He's been so considerate of my post-op pain and varied emotions. I was honestly a little worried about how my love for David would change when our son was born. I didn't need to worry. My love for both David and Luke has increased exponentially. Their love for me and your prayers are what get me through each day (and maybe a couple of pain pills).
So what's next? Luke will get an echocardiogram (sonogram of his heart) on Wednesday, and we should be able to discuss the results with his cardiologist a day or two later. This ECG will let us know if Luke is getting any blood through his Pulmonary Artery. If he is, we may be able to put off surgery for a little longer, allowing him to grow and become stronger. If not, we may be looking at the first of three surgeries sooner rather than later. A heart transplant is still an option, but we don't know how likely that option is. For those of you who want to pray specifically, pray that God's will is done with his Pulminary Artery and that the doctors will decide to operate at the perfect time.
I just wanted spend some time going into more detail about Luke's condition and treatment, for those of you who are interested. As always, we so appreciate your prayers, thoughts, and encouragement. We love you.
Blessings,
Rachael & David
Welcome Luke!
Lucas Hermon Chisholm
May 11, 2009
6:06 pm
5 lbs 10 oz
19 in
6:06 pm
5 lbs 10 oz
19 in
Originally posted May 14, 2009
Thanks for your continued prayers everyone!!!
I wanted to take the time to update everyone on the arrival and survival of our brand new son, Luke. Here's the rundown.
Sunday night I went into the hospital to begin my induction in the morning. Both sets of our parents and David's sisters arrived in Dallas that evening as well and stayed in a nearby hotel. Monday morning, a little later than expected, they finally took me to Labor and Delivery. After I got my epidural, they started me on the drug to get my labor going. Unexpected thing number one happened. Right after they gave me the test dose of epidural, my blood pressure dropped suddenly and significantly and I almost passed out. After I recovered (yay for L&D nurses!), they told me that I was especially sensitive to the epidural. They told me not to wait until I was in pain to ask to get started on the drug (I was going to wait until I had some painful contractions to start receiving drugs) because a strong dose at the beginning would be harmful to me (and probably to Luke). So I began pushing my "button" right after that. I "labored" (not in pain, so it wasn't really hard work) from about 10am to almost 5 (leaving out the gory details). At around noon, my OB told me that Luke was having some trouble keeping his heart rate up after each of my contractions. They put me on oxygen to try and remedy that, but around 5, I had dilated to about 4cm, and Dr. Napier said that oxygen wasn't working for us. She said had I been closer to 10 cm, she might have let me deliver naturally, but as it was I was still about 5 hours away from pushing. So, she made the decision to have Luke delivered by C-section. I was disappointed, but we wanted what is best for Luke, so no protest.
David scrubbed in and they wheeled me to the OR. I was having a lot of trouble controlling my tears. David sat with me on my side of the sheet and talked with me and encouraged me. Lucas Hermon Chisholm was born at 6:06 pm Monday night. They didn't show him to me over the curtain, but I heard him cry very briefly (a treasured sound when I haven't heard him since). David went over as the neonatologist examined him right away. A few minutes later they brought him over to me. My arms were numb, and I couldn't hold him, but the nurse put him right next to my face, cheek to cheek, and I got to kiss his tiny face a few times before they whisked him away. We had decided ahead of time that David would go with him down to the NICU, and my mom would go into recovery with me. It seemed like forever for them to sew me up and get me into recovery, and I don't think I've ever felt so alone.
Finally, in recovery, I saw several people, but my mom stayed with me the whole time. David came back up and told me that Luke was stable and that he was 19 inches long. Later we found out that he weighed 5 lb. 10 oz. Such a big boy! I was not even hoping for a normal sized baby, but God answers even unspoken prayers. He may be small, but he's still within my range of normal.
So I got to see him on my way down to the post partum unit for about 10 minutes, but I could not reach him. He was already connected to so many wires and tubes, that it made holding him impossible. I think that is still the most difficult part, that I can't hold him. They started him on the medication that will keep his PDA artery open and allow blood to bypass the faulty valve and get to the lungs to get oxygenated. He is stable and doing well on this medication.
Today we had our first big scare. My mom and I came back from lunch today back up to the NICU (David had gone down to Terrell to take care of some things). When I arrived, the neonatologist and two nurses were standing around his tiny bed. The nurse told me that she had looked up at his monitors a minute ago and saw that his heart rate had skyrocketed. His heart rate was above 200 bpm and irregular. The neonatologist asked me to go to the waiting room while they got him stable and they would come and tell me what was going on as soon as they could. Scariest walk down a hallway in my life. David came soon after I texted him (his phone wasn't receiving calls for some reason). The doctor came out after a long time and told us that he's okay. The way his heart is built, the fast and irregular heart rate are expected. They put him on some medication to get this symptom under control, but won't be surprised if the same thing happens again. They will be monitoring him even more carefully.
Some hopeful news, we got to talk to the cardiologist this evening before we left. She reviewed his echocardiogram with the surgeon. They have decided to wait on making a decision about surgery. They will keep him on the prostiglandin which will keep his PDA open. Since he is stable and the meds are doing what they are supposed to, this is basically buying us some time to allow his lungs to get bigger and more developed before they re-evaluated surgery options. They will keep him on this medication, as long as it is still working properly for a few days to two weeks, then they will reevaluate what we want to do for surgery. The surgeon believes that we can still go the three-surgery route that I've talked about in other notes and not have to do a transplant. That's good news.
I personally am doing okay. I got discharged from the hospital today, a day early. I'm getting around fine, but have a little pain. My greatest triumph from the last few days (besides bringing my son into this world) is that I'm finally beginning to produce enough milk to supply Luke for all of his feedings. That's one thing that I can do to give Luke the best chance for survival. There are a lot more little details of Luke's treatment and progress. I'd love to share them with you if you want to know, but not here, as this note is very long already.
I just want to thank all of you for your continued prayers. Prayers got us through the last couple of days, and have gotten us through the trauma today, not to mention the entire pregnancy. Thank those of you who came to visit and who will visit. Thank you for understanding that while we want to see you when you come, Luke is our first priority, and we might not get to visit. We love you all. Again, thank you.
Blessings,
Rachael & David
Want to take a ride on the emotional roller coaster anyone??
Originally posted May 7, 2009
Well, we had our last appointment with our maternal fetal specialist on Tuesday. Little Luke's sonogram looked pretty good - he was making breathing movements, heart is still very large, but beating, etc. When the tech did the calculations to weigh him, however, that's when we started worrying. In 3 weeks, our baby has only gained 10 oz. From 4 lb 5 oz to 4 lb 15 oz. We're still under 5 lbs. We had to wait a few minutes while she plugged the numbers into the computer, but then the tech announced that he has fallen under the 5th percentile of weight for this point of gestation. We asked to see Dr. Rosnes who came in and made the decision to that it's "time to bail." He'll grow better if we can get him born and fix his heart. He told us he would call my OB and try to arrange for us to deliver the first thing Wednesday morning. He told us to go home and wait for Dr. Napier (OB) to call.
Well, we conveniently had to wait in Dallas to pick up our friend John from the airport. I say conveniently because we didn't know if we would need to go to the hospital for the night in order to start the induction in the morning. After about an hour, I got tired of waiting and called Dr. Napier's office. She wasn't there, so I talked to her nurse who told me that Dr. Napier had received Dr. Rosnes' message, but she was in surgery all day and wouldn't have an answer for me till tomorrow. So we picked up John and headed home. Later that afternoon, we received a voice mail from Dr. Napier saying that she had scheduled us for induction first thing Thursday morning. Although I was admittedly a little disappointed that they had chosen our wedding anniversary for the induction date, David and I started preparing for it. We had an extra day to mow the lawn, get food for the kitties, clean the house, etc. We also got to hang out with friends one last time before the big day. My parents made flight arrangements, and David's parents planned to drive down yesterday morning.
I had an OB appointment yesterday morning, and I went to ask her some final questions. Everything was a go, and so I left the doctor's office emotional but prepared to have a baby the next morning. On the drive home I received a call from Dr. Napier's office who told me that our coordinator had discovered that our heart surgeon Dr. Medeloff was leaving town and would not be back until Monday. We need that guy. So consequently, our team of medical professionals deemed it necessary to push the induction back until Monday when everybody can be there for Luke's arrival. Called my parents - "Don't get on a plane!" Called David's parents - "I know you're halfway here, but turn around. Come back Sunday." Called the minister who was covering for David Sunday morning - "I know you've worked 3 hours on a sermon for Sunday, but never mind." It was a little bit like turning the Titanic around. I'm glad nobody told Luke to go ahead and get started. It's a little bit harder to push a baby back in.
So, the up to date plans are that I will be admitted to the hospital on Sunday evening at 5:00. They will put me on monitors and give me something nice to help me get a good night's sleep. (Hallelujah!) Then they will start inducing me at 8:00 Monday morning the 11th. Not our anniversary. Not Mother's Day. And to David's slight disappointment, not Cinco di Mayo. Our parents and David's siblings are all planning on arriving Sunday afternoon.
So we are gearing up for "B" day, which is a little like D-day on Monday morning. I'm a little relieved that I get to go into the hospital the night before, get used to my surroundings and get mentally prepared for the task ahead. They are going to start by inducing me, but Dr. Napier told me that very small babies sometimes have a difficult time tolerating labor, so C-section is still a very real possibility. One positive is the answer I got when I asked Dr. Rosnes if they would whisk Luke away immediately after the cord was cut, or if I would get to hold him for a few minutes. The answer was yes, I would probably get to hold him for just a few minutes before they took him to NICU to begin treating him. That makes me happy.
So, pray for us on Monday as we bring Little Luke into the world. We thank you for your prayers and encouragement up to this point. We love you all.
Blessings,
Rachael & David
Well, we had our last appointment with our maternal fetal specialist on Tuesday. Little Luke's sonogram looked pretty good - he was making breathing movements, heart is still very large, but beating, etc. When the tech did the calculations to weigh him, however, that's when we started worrying. In 3 weeks, our baby has only gained 10 oz. From 4 lb 5 oz to 4 lb 15 oz. We're still under 5 lbs. We had to wait a few minutes while she plugged the numbers into the computer, but then the tech announced that he has fallen under the 5th percentile of weight for this point of gestation. We asked to see Dr. Rosnes who came in and made the decision to that it's "time to bail." He'll grow better if we can get him born and fix his heart. He told us he would call my OB and try to arrange for us to deliver the first thing Wednesday morning. He told us to go home and wait for Dr. Napier (OB) to call.
Well, we conveniently had to wait in Dallas to pick up our friend John from the airport. I say conveniently because we didn't know if we would need to go to the hospital for the night in order to start the induction in the morning. After about an hour, I got tired of waiting and called Dr. Napier's office. She wasn't there, so I talked to her nurse who told me that Dr. Napier had received Dr. Rosnes' message, but she was in surgery all day and wouldn't have an answer for me till tomorrow. So we picked up John and headed home. Later that afternoon, we received a voice mail from Dr. Napier saying that she had scheduled us for induction first thing Thursday morning. Although I was admittedly a little disappointed that they had chosen our wedding anniversary for the induction date, David and I started preparing for it. We had an extra day to mow the lawn, get food for the kitties, clean the house, etc. We also got to hang out with friends one last time before the big day. My parents made flight arrangements, and David's parents planned to drive down yesterday morning.
I had an OB appointment yesterday morning, and I went to ask her some final questions. Everything was a go, and so I left the doctor's office emotional but prepared to have a baby the next morning. On the drive home I received a call from Dr. Napier's office who told me that our coordinator had discovered that our heart surgeon Dr. Medeloff was leaving town and would not be back until Monday. We need that guy. So consequently, our team of medical professionals deemed it necessary to push the induction back until Monday when everybody can be there for Luke's arrival. Called my parents - "Don't get on a plane!" Called David's parents - "I know you're halfway here, but turn around. Come back Sunday." Called the minister who was covering for David Sunday morning - "I know you've worked 3 hours on a sermon for Sunday, but never mind." It was a little bit like turning the Titanic around. I'm glad nobody told Luke to go ahead and get started. It's a little bit harder to push a baby back in.
So, the up to date plans are that I will be admitted to the hospital on Sunday evening at 5:00. They will put me on monitors and give me something nice to help me get a good night's sleep. (Hallelujah!) Then they will start inducing me at 8:00 Monday morning the 11th. Not our anniversary. Not Mother's Day. And to David's slight disappointment, not Cinco di Mayo. Our parents and David's siblings are all planning on arriving Sunday afternoon.
So we are gearing up for "B" day, which is a little like D-day on Monday morning. I'm a little relieved that I get to go into the hospital the night before, get used to my surroundings and get mentally prepared for the task ahead. They are going to start by inducing me, but Dr. Napier told me that very small babies sometimes have a difficult time tolerating labor, so C-section is still a very real possibility. One positive is the answer I got when I asked Dr. Rosnes if they would whisk Luke away immediately after the cord was cut, or if I would get to hold him for a few minutes. The answer was yes, I would probably get to hold him for just a few minutes before they took him to NICU to begin treating him. That makes me happy.
So, pray for us on Monday as we bring Little Luke into the world. We thank you for your prayers and encouragement up to this point. We love you all.
Blessings,
Rachael & David
Luke is staying put! (for another couple of weeks)
Originally posted April 15, 2009
We visited with the maternal fetal specialist (MFM) yesterday. David and I went up to Dallas very anxious about what would happen next. At our appointment two weeks ago, the MFM said that the baby was between the lowest 7th and 15th percentile in weight - one computer gave one number and a different computer gave the other number (which makes me question how accurate all this really is, but anyway...). I wasn't sure at the time which number we were going with, but in any case, MFM said that if we measured him in two weeks (yesterday) and he had slipped to the 5th percentile, it would be "time to bail" and we would need to deliver asap to get Luke's heart worked on. The same day after hearing the news, the OB said that it would be wise to pack our bags for staying at the hospital just in case the next time we get him measured it'd be time to deliver, and we wouldn't get the opportunity to go home first. I was really nervous because the books are all saying your baby should weigh between such and such a number by this time, which was way higher than the last figure at 3 lbs 5 oz, and not only had I not gained any weight over the past two weeks, I had LOST a pound. I was pretty certain Luke had slipped to 5% and we would be delivering last night or this morning.
Well, prayer is effective and helpful still, and Luke has only slipped 1%. I found out we were going with the 7% number, and 1% still keeps us away from 5%. Not only that, but Luke has gained a full pound since the last time we measured him (champion lightweight weighing in at 4 lbs 5 oz)! He had to have stolen it from his mommy (which is A-okay with me!). So Luke bought himself another two weeks at least to stay in his comfy cozy warm womb room. We'll measure him again in two weeks and probably go through the same process of packing the bags and the car and ready to deliver if MFM says it's time.
So, now some not so great news. Luke's lungs are concerningly small, and we want him to have lungs of steel by the time he's born so he has the best possible chance of getting through heart surgery soon after he's born. So MFM prescribed that I get some shots of steroids to encourage Luke's faster lung development. Well, my OB (who I saw right after MFM) knew exactly what he was talking about that I needed, but unfortunately didn't have the injection in her office. So she sent me up to Labor and Delivery at Medical City to get the shot there. Annoyingly, they had to admit me to the hospital for about an hour (hospital gown and everything!) so I could get the shot. This treatment is two doses, 24 hours apart. Thankfully, the hospital nurse (who was expert with a needle, I hardly felt the poke) gave me the second vile so I can just take it up to my OB's office this afternoon and they can give it to me there rather than having to be readmitted to the hospital.
I know this is already getting long, I just want to remind everyone how faithful God is--not just at answering our prayers. Many prayers went up for Luke and his parents this week that God's timing would be perfect, and Luke would be born on the perfect day. God has answered those prayers again, and I know he will answer our prayers for stronger lungs (two more weeks will sure be a big help to that). But God is also faithful in taking care of Luke's mommy. Much like earlier in my adult life (college and graduate school), I feel God's nurturing as he takes me gently by the hand and slowly introduces me to things that scare the heck out of me. I'm not going to lie, I've been really anxious about being in the hospital, having surgery, and yes, the pain that all of that means. I'm not a wimp, but to be honest I'm genuinely pretty afraid of how I'm going to manage all of this on top of having a sick baby boy who I probably will not get to hold right away to take away all of those thoughts of pain and discomfort. Yesterday, God answered that unspoken prayer too by introducing me slowly to what's to come. We got a practice day to pack our bags and the car. Practice to breath when anxiety gets overwhelming. And even practice putting on a hospital gown, laying down in bed, and even going through a little pain. It was as God was was saying, "See, you can do ALL things (even have a sick baby) through me because I strengthen you." I am re-aware of God's loving comfort and faithfulness. Was yesterday the most pleasant experience in the world?? No, but neither will Luke's birthday be. But it doesn't matter because I have God strengthening me and a I have David right along beside me. Just wanted to share that with you.
Thank you for your continued prayers as Luke progresses. We could never do this without you!
Blessings,
Rachael & David
We visited with the maternal fetal specialist (MFM) yesterday. David and I went up to Dallas very anxious about what would happen next. At our appointment two weeks ago, the MFM said that the baby was between the lowest 7th and 15th percentile in weight - one computer gave one number and a different computer gave the other number (which makes me question how accurate all this really is, but anyway...). I wasn't sure at the time which number we were going with, but in any case, MFM said that if we measured him in two weeks (yesterday) and he had slipped to the 5th percentile, it would be "time to bail" and we would need to deliver asap to get Luke's heart worked on. The same day after hearing the news, the OB said that it would be wise to pack our bags for staying at the hospital just in case the next time we get him measured it'd be time to deliver, and we wouldn't get the opportunity to go home first. I was really nervous because the books are all saying your baby should weigh between such and such a number by this time, which was way higher than the last figure at 3 lbs 5 oz, and not only had I not gained any weight over the past two weeks, I had LOST a pound. I was pretty certain Luke had slipped to 5% and we would be delivering last night or this morning.
Well, prayer is effective and helpful still, and Luke has only slipped 1%. I found out we were going with the 7% number, and 1% still keeps us away from 5%. Not only that, but Luke has gained a full pound since the last time we measured him (champion lightweight weighing in at 4 lbs 5 oz)! He had to have stolen it from his mommy (which is A-okay with me!). So Luke bought himself another two weeks at least to stay in his comfy cozy warm womb room. We'll measure him again in two weeks and probably go through the same process of packing the bags and the car and ready to deliver if MFM says it's time.
So, now some not so great news. Luke's lungs are concerningly small, and we want him to have lungs of steel by the time he's born so he has the best possible chance of getting through heart surgery soon after he's born. So MFM prescribed that I get some shots of steroids to encourage Luke's faster lung development. Well, my OB (who I saw right after MFM) knew exactly what he was talking about that I needed, but unfortunately didn't have the injection in her office. So she sent me up to Labor and Delivery at Medical City to get the shot there. Annoyingly, they had to admit me to the hospital for about an hour (hospital gown and everything!) so I could get the shot. This treatment is two doses, 24 hours apart. Thankfully, the hospital nurse (who was expert with a needle, I hardly felt the poke) gave me the second vile so I can just take it up to my OB's office this afternoon and they can give it to me there rather than having to be readmitted to the hospital.
I know this is already getting long, I just want to remind everyone how faithful God is--not just at answering our prayers. Many prayers went up for Luke and his parents this week that God's timing would be perfect, and Luke would be born on the perfect day. God has answered those prayers again, and I know he will answer our prayers for stronger lungs (two more weeks will sure be a big help to that). But God is also faithful in taking care of Luke's mommy. Much like earlier in my adult life (college and graduate school), I feel God's nurturing as he takes me gently by the hand and slowly introduces me to things that scare the heck out of me. I'm not going to lie, I've been really anxious about being in the hospital, having surgery, and yes, the pain that all of that means. I'm not a wimp, but to be honest I'm genuinely pretty afraid of how I'm going to manage all of this on top of having a sick baby boy who I probably will not get to hold right away to take away all of those thoughts of pain and discomfort. Yesterday, God answered that unspoken prayer too by introducing me slowly to what's to come. We got a practice day to pack our bags and the car. Practice to breath when anxiety gets overwhelming. And even practice putting on a hospital gown, laying down in bed, and even going through a little pain. It was as God was was saying, "See, you can do ALL things (even have a sick baby) through me because I strengthen you." I am re-aware of God's loving comfort and faithfulness. Was yesterday the most pleasant experience in the world?? No, but neither will Luke's birthday be. But it doesn't matter because I have God strengthening me and a I have David right along beside me. Just wanted to share that with you.
Thank you for your continued prayers as Luke progresses. We could never do this without you!
Blessings,
Rachael & David
Some friends are smaller than others
Originally posted March 31, 2009
Hey everyone -
It's been awhile since we've written an update on how our baby boy is doing and how the pregnancy is progressing.
First of all, the secret's out--we've decided on naming the baby Lucas Hermon Chisholm. We call him Luke, and David's going to have fun saying "Luke, I am your father." when he gets here.
We've been seeing either the Maternal Fetal Specialist (MFM) or the fetal cardiologist every week for a few weeks now. In the last several weeks there has been no change in Luke's condition - a true blessing. Not only has the fluid around his heart NOT increased, it's GONE. Thank you to everyone who had a part in praying that fluid away. He has a much higher chance of survival because he's gotten to stay in mommy's tummy that much longer.
Another praise, we've made it to the 32 week milestone. When we first learned about his condition, I remember thinking how fantastic it would be to make it to 32 weeks. Of course 40 (the length of a normal full-term pregnancy) is the best, but David and I both have been holding up 32 weeks as the goal. We've made it, and that's no accident either. Thank you for your continued prayers.
We visited the MFM today and they checked all his measurements (they don't do this every time). Luke has slipped down to being about 2 weeks behind where he should be in size at this time in the pregnancy. He's currently 3 lbs 5 oz, but still only between the 7th and 15th percentile of weight (I heard Dr. Rosnes say both of those numbers and I'm not sure which one we're going with). So we're going to begin weekly visits to the MFM instead of every two weeks. In two weeks, they will measure him again, and if he has slipped anymore behind (5th percentile or lower) in growth, Dr. Rosnes says it'll be time to bail. Meaning they'll take Luke early so they can get his heart worked on. The plan right now is to induce me at 39 weeks and 2 days on May 18th. If he's not tracking in two weeks and the docs decide we need to get him out then, that will put us at 34.
This time frame is obviously exceeding our original expectations, but is still very scary. With all the problems that Luke is expected to have at birth, we don't really need to add smallness onto the package. But first and foremost, we need to trust God. Before we even got pregnant with Luke, we prayed that God would give us a baby at the right time. We need to trust that God is going to be faithful and cause Luke to be born the very minute he needs to be. Second, we need to trust our medical professionals. We have a whole team of docs working with us to make sure Luke has the best care possible. If they say he has a better chance if they take him early, then as scary as that is, we'll go ahead and do it.
So we continue to ask for your prayers for our tiny son. Pray that he will begin tracking like he should and grow like a weed in the next two weeks. And pray that his mommy and daddy have sufficient strength to handle whatever lies ahead. Thank you again for your thoughts and prayers. We love you!
Rachael and David
Hey everyone -
It's been awhile since we've written an update on how our baby boy is doing and how the pregnancy is progressing.
First of all, the secret's out--we've decided on naming the baby Lucas Hermon Chisholm. We call him Luke, and David's going to have fun saying "Luke, I am your father." when he gets here.
We've been seeing either the Maternal Fetal Specialist (MFM) or the fetal cardiologist every week for a few weeks now. In the last several weeks there has been no change in Luke's condition - a true blessing. Not only has the fluid around his heart NOT increased, it's GONE. Thank you to everyone who had a part in praying that fluid away. He has a much higher chance of survival because he's gotten to stay in mommy's tummy that much longer.
Another praise, we've made it to the 32 week milestone. When we first learned about his condition, I remember thinking how fantastic it would be to make it to 32 weeks. Of course 40 (the length of a normal full-term pregnancy) is the best, but David and I both have been holding up 32 weeks as the goal. We've made it, and that's no accident either. Thank you for your continued prayers.
We visited the MFM today and they checked all his measurements (they don't do this every time). Luke has slipped down to being about 2 weeks behind where he should be in size at this time in the pregnancy. He's currently 3 lbs 5 oz, but still only between the 7th and 15th percentile of weight (I heard Dr. Rosnes say both of those numbers and I'm not sure which one we're going with). So we're going to begin weekly visits to the MFM instead of every two weeks. In two weeks, they will measure him again, and if he has slipped anymore behind (5th percentile or lower) in growth, Dr. Rosnes says it'll be time to bail. Meaning they'll take Luke early so they can get his heart worked on. The plan right now is to induce me at 39 weeks and 2 days on May 18th. If he's not tracking in two weeks and the docs decide we need to get him out then, that will put us at 34.
This time frame is obviously exceeding our original expectations, but is still very scary. With all the problems that Luke is expected to have at birth, we don't really need to add smallness onto the package. But first and foremost, we need to trust God. Before we even got pregnant with Luke, we prayed that God would give us a baby at the right time. We need to trust that God is going to be faithful and cause Luke to be born the very minute he needs to be. Second, we need to trust our medical professionals. We have a whole team of docs working with us to make sure Luke has the best care possible. If they say he has a better chance if they take him early, then as scary as that is, we'll go ahead and do it.
So we continue to ask for your prayers for our tiny son. Pray that he will begin tracking like he should and grow like a weed in the next two weeks. And pray that his mommy and daddy have sufficient strength to handle whatever lies ahead. Thank you again for your thoughts and prayers. We love you!
Rachael and David
Update on little man
Originally posted March 5, 2009
Just wanted to update you all on how our baby is doing and how our pregnancy is progressing.
We had two doctor's appointments this week - one with my new OB and one with the maternal fetal specialist. M/F specialist did a sonogram to check the baby out. Really, there's nothing new to report. The baby continues to grow (yay Baby!). He is a whopping 2 1/4 pounds now. He's tracking about a week behind where he should be, which is not bad at all. The doc said that it's still too early to tell how his lungs are shaping out - and thus too early to worry about how they're doing. Focusing on the positive, there's still not any fluid around his heart, and he's not showing signs of distress yet. Dr. Rosnes' plan is to get him to 34 weeks and then re-evaluate how he's doing. Obviously the longer he can stay in the womb, the better because baby boys tend to have lung problems if they are delivered early. But if he's still not distressing at 34, we'll see how close to term we can get him. Dr. Rosnes is still cautious though, as if the Baby could take a turn for the worse any day, so we will continue to see a specialist, either Dr. Rosnes or the fetal cardiologist every week for a sonogram.
We met with Dr. Napier, my new OB yesterday. It was pretty much a meeting to get to know one another--we asked each other a lot of questions. I was happy to find out that she will not deliver the Baby by C-section unless he's breech or we get started in delivery and he is not responding well to labor. She said that unless the Baby gets into distress earlier, she will induce me at about 39 weeks. That way our "team of medical professionals" who are trying to keep me healthy and the baby alive can all plan to be there and we're not scrambling to call everyone together when my water breaks at 3 in the morning.
I know that was a long note for not much news, but thank you for reading it. Most especially, thank you for praying. I know that your prayers are the reason why we are all doing so well. I know that because of your prayers God has guided us to the exact right doctors, nurses, and surgeons that need to be caring for us to give the Baby the best chance of survival.
Love and Blessings,
Rachael & David
Just wanted to update you all on how our baby is doing and how our pregnancy is progressing.
We had two doctor's appointments this week - one with my new OB and one with the maternal fetal specialist. M/F specialist did a sonogram to check the baby out. Really, there's nothing new to report. The baby continues to grow (yay Baby!). He is a whopping 2 1/4 pounds now. He's tracking about a week behind where he should be, which is not bad at all. The doc said that it's still too early to tell how his lungs are shaping out - and thus too early to worry about how they're doing. Focusing on the positive, there's still not any fluid around his heart, and he's not showing signs of distress yet. Dr. Rosnes' plan is to get him to 34 weeks and then re-evaluate how he's doing. Obviously the longer he can stay in the womb, the better because baby boys tend to have lung problems if they are delivered early. But if he's still not distressing at 34, we'll see how close to term we can get him. Dr. Rosnes is still cautious though, as if the Baby could take a turn for the worse any day, so we will continue to see a specialist, either Dr. Rosnes or the fetal cardiologist every week for a sonogram.
We met with Dr. Napier, my new OB yesterday. It was pretty much a meeting to get to know one another--we asked each other a lot of questions. I was happy to find out that she will not deliver the Baby by C-section unless he's breech or we get started in delivery and he is not responding well to labor. She said that unless the Baby gets into distress earlier, she will induce me at about 39 weeks. That way our "team of medical professionals" who are trying to keep me healthy and the baby alive can all plan to be there and we're not scrambling to call everyone together when my water breaks at 3 in the morning.
I know that was a long note for not much news, but thank you for reading it. Most especially, thank you for praying. I know that your prayers are the reason why we are all doing so well. I know that because of your prayers God has guided us to the exact right doctors, nurses, and surgeons that need to be caring for us to give the Baby the best chance of survival.
Love and Blessings,
Rachael & David
Yay Baby! Yay God!
Originally posted February 18, 2009
David and I are thrilled to be telling all of you the following news. First, please continue to pray for our baby. We still have a long way to go, but God is hearing and answering our prayers every day.
We visited the fetal cardiologist this morning. The baby was in a great position for the sonogram, so that step took a lot less time than it normally does. After the sonogram and the doctor looked at the pictures, she met with us. She came in the room grinning and shaking her head: "He is just doing so well! He's just doing great!" These are words we've so longed to hear. God and his strength in our baby is already blowing all of the professionals involved with us out of the water. You might remember that at some of our first visits, the fluid around his heart (hydropse) was of major concern. He needs to be monitored frequently because if the fluid increases, it would squash his heart and send him into cardiac failure. The fluid is just not increasing. The baby continues to have a strong heartbeat and continues to grow and track pretty well in spite of the severe leakage in his heart valve.
Dr. Kao (the cardiologist) spent most of the time with us today making a plan for the baby's birth. (That in itself is just tremendous!) She has referred us to a new OB who I will see in the next week or so. I will deliver at Medical City Hospital in Dallas with this new OB doc. Dr. Kao and the neonatologist there will take a look at the baby as soon as he's born. The plan is that Dr. Kao will then put him on a medication called Prolaxin (sp?). This medication is designed to increase the blood flow to his lungs so it can receive oxygen. Then we wait and see how he does on the medication. This could take anywhere from 1-4 weeks (during which he will stay in the hospital--we will not take him home yet) If he does not respond well, we will look at surgical options to repair his heart. If he does respond well and begins receiving oxygenated blood, then there's a possibility that he will just remain on the medication and avoid surgery all together.
Another bit of good news is that Dr. Kao believes that since the baby is showing no signs of distress whatsoever, I will be able to carry him to full term, or close to it. It's also looking like I'll get to deliver him naturally instead of have a C-section birth, which is fantastic for lots of reasons - I'll get to hold him right away, and the recovery time should be shorter.
So, all in all, today's doctor's visit was about as good as anybody could have hoped. Regardless of how the day went, we have a good God--a God who listens and cares about where we are. We bless His Name through the good or the bad, but it sure is easier right at this moment when things look so hopeful.
Please continue to pray for our baby and his mommy and daddy. We have lots of doctors' visits left, and a long road left to travel in this journey. We could not do it without knowing we have the emotional and prayer support of all of our friends and loved ones. Thank you for praying.
We love you,
Rachael and David
David and I are thrilled to be telling all of you the following news. First, please continue to pray for our baby. We still have a long way to go, but God is hearing and answering our prayers every day.
We visited the fetal cardiologist this morning. The baby was in a great position for the sonogram, so that step took a lot less time than it normally does. After the sonogram and the doctor looked at the pictures, she met with us. She came in the room grinning and shaking her head: "He is just doing so well! He's just doing great!" These are words we've so longed to hear. God and his strength in our baby is already blowing all of the professionals involved with us out of the water. You might remember that at some of our first visits, the fluid around his heart (hydropse) was of major concern. He needs to be monitored frequently because if the fluid increases, it would squash his heart and send him into cardiac failure. The fluid is just not increasing. The baby continues to have a strong heartbeat and continues to grow and track pretty well in spite of the severe leakage in his heart valve.
Dr. Kao (the cardiologist) spent most of the time with us today making a plan for the baby's birth. (That in itself is just tremendous!) She has referred us to a new OB who I will see in the next week or so. I will deliver at Medical City Hospital in Dallas with this new OB doc. Dr. Kao and the neonatologist there will take a look at the baby as soon as he's born. The plan is that Dr. Kao will then put him on a medication called Prolaxin (sp?). This medication is designed to increase the blood flow to his lungs so it can receive oxygen. Then we wait and see how he does on the medication. This could take anywhere from 1-4 weeks (during which he will stay in the hospital--we will not take him home yet) If he does not respond well, we will look at surgical options to repair his heart. If he does respond well and begins receiving oxygenated blood, then there's a possibility that he will just remain on the medication and avoid surgery all together.
Another bit of good news is that Dr. Kao believes that since the baby is showing no signs of distress whatsoever, I will be able to carry him to full term, or close to it. It's also looking like I'll get to deliver him naturally instead of have a C-section birth, which is fantastic for lots of reasons - I'll get to hold him right away, and the recovery time should be shorter.
So, all in all, today's doctor's visit was about as good as anybody could have hoped. Regardless of how the day went, we have a good God--a God who listens and cares about where we are. We bless His Name through the good or the bad, but it sure is easier right at this moment when things look so hopeful.
Please continue to pray for our baby and his mommy and daddy. We have lots of doctors' visits left, and a long road left to travel in this journey. We could not do it without knowing we have the emotional and prayer support of all of our friends and loved ones. Thank you for praying.
We love you,
Rachael and David
Finally Something Positive!
Originally posted February 4, 2009
Hello everyone. I want to begin this update by saying--DON'T STOP PRAYING! God hears our prayers and is already beginning to answer them. Thank you all for your fervency in your prayers. They mean so much to us.
We visited the maternal fetal specialist yesterday. The first prayer that was answered yesterday is that we didn't have to see the doctor who was so flippant and hurtful last time. Instead we got to see Dr. Rosnes who was very gentle, kind, and patient with us. He probably spent a good 20 minutes with us making sure we understood all the information, answering our questions, and giving us hope for the next weeks of our baby's life in my tummy.
Yeah, that's right - we're looking forward to several more weeks of this pregnancy according to Dr. Rosnes. Last month his colleague Dr. Wallace told us we shouldn't expect the baby to make it past 25 or 26 weeks. God is awesome and I will be 25 weeks on Friday. This just reminds me that doctors (especially pessimistic ones) are not in control. God is the only one in control of how long our baby lives. I admit it gives me pleasure that Dr. Wallace is turning out to be wrong.
Anyway. Dr. Rosnes took a good look at Baby's lungs on the sonogram. His lungs are small like we feared and placed back in his chest because his enlarged heart is taking up so much room in his chest. The doctor said his lung development is not super critical right now, even though they are small. Again, we will continue to monitor the situation and hope for the best. Maybe if Baby's heart continues to develop, but stops growing in size, it will give the rest of his body a chance to catch up.
The factor that will determine if we need to deliver him early, in other words, what will put baby in distress so that it's better to deliver him early rather than ride it out in my tummy is again if the fluid around his heart becomes too much and Baby begins gong into heart failure. Praise God, the fluid level around his heart has not increased since our first appointment with the specialists in December.
Baby is otherwise tracking pretty well still, though he has slipped a little in development. I'm about 24 1/2 weeks, and the baby's development is about 22 weeks. This isn't a huge change. He's only slipped about half of a week since December, but we want to pray that he will grow normally and become strong so he can live outside mommy's body whenever the time comes. That time may be soon, but the Doctor has given us hope that the baby will make it to 28 weeks and beyond. The doctor even mentioned maybe making it to 37-38 weeks. Wouldn't that be marvelous!
We're still a little skittish about busting out the paint for the nursery, but we are definitely so much more hopeful than we were after the last appointment.
Please continue to pray for us without ceasing. Pray of course for the baby's physical well-being, but also for his mommy and daddy that we have the strength and the courage to continue to face what's ahead.
We love you all! Blessings!
Hello everyone. I want to begin this update by saying--DON'T STOP PRAYING! God hears our prayers and is already beginning to answer them. Thank you all for your fervency in your prayers. They mean so much to us.
We visited the maternal fetal specialist yesterday. The first prayer that was answered yesterday is that we didn't have to see the doctor who was so flippant and hurtful last time. Instead we got to see Dr. Rosnes who was very gentle, kind, and patient with us. He probably spent a good 20 minutes with us making sure we understood all the information, answering our questions, and giving us hope for the next weeks of our baby's life in my tummy.
Yeah, that's right - we're looking forward to several more weeks of this pregnancy according to Dr. Rosnes. Last month his colleague Dr. Wallace told us we shouldn't expect the baby to make it past 25 or 26 weeks. God is awesome and I will be 25 weeks on Friday. This just reminds me that doctors (especially pessimistic ones) are not in control. God is the only one in control of how long our baby lives. I admit it gives me pleasure that Dr. Wallace is turning out to be wrong.
Anyway. Dr. Rosnes took a good look at Baby's lungs on the sonogram. His lungs are small like we feared and placed back in his chest because his enlarged heart is taking up so much room in his chest. The doctor said his lung development is not super critical right now, even though they are small. Again, we will continue to monitor the situation and hope for the best. Maybe if Baby's heart continues to develop, but stops growing in size, it will give the rest of his body a chance to catch up.
The factor that will determine if we need to deliver him early, in other words, what will put baby in distress so that it's better to deliver him early rather than ride it out in my tummy is again if the fluid around his heart becomes too much and Baby begins gong into heart failure. Praise God, the fluid level around his heart has not increased since our first appointment with the specialists in December.
Baby is otherwise tracking pretty well still, though he has slipped a little in development. I'm about 24 1/2 weeks, and the baby's development is about 22 weeks. This isn't a huge change. He's only slipped about half of a week since December, but we want to pray that he will grow normally and become strong so he can live outside mommy's body whenever the time comes. That time may be soon, but the Doctor has given us hope that the baby will make it to 28 weeks and beyond. The doctor even mentioned maybe making it to 37-38 weeks. Wouldn't that be marvelous!
We're still a little skittish about busting out the paint for the nursery, but we are definitely so much more hopeful than we were after the last appointment.
Please continue to pray for us without ceasing. Pray of course for the baby's physical well-being, but also for his mommy and daddy that we have the strength and the courage to continue to face what's ahead.
We love you all! Blessings!
Some good, Some bad
Originally posted January 17, 2009
David and I had our latest visit with the fetal cardiac specialist, Dr. Kao, yesterday. This was the first doctor's appointment in a month where I haven't cried afterword for one reason or another.
First the good news: Dr. Kao was very encouraged to see that the baby is doing so well. Yes, his heart is enlarged, but the fluid level around his heart is not increasing. The baby is growing and tracking well and reaching his fetal milestones in every other area. He is currently showing no signs of distress due to his heart problems, and I am feeling him move multiple times daily. Sometimes I think I have a kick boxer living in my tummy. Also, we had several tests done to check for chromosomal abnormalities in my system to see if I'm a carrier for things like Down's syndrome, Cystic fibrosis, and a rarer abnormality called DiGeorge syndrome that causes it's carriers to be more likely to have congenital heart defects (I had one, and now my son has one). The good news is that 3 of the 5 tests they have run have come back with negative results (not a carrier), so there is a minuscule chance that our baby will be born with these chromosomal defects. Praise God! Still waiting for results on the last 2.
So the bad news: Dr. Kao said she can understand why Dr. Wallace gave us such a pessimistic prognosis last Monday. She said the baby's heart is very, very enlarged. So much so, that his heart may start hampering the development of his lungs, if it hasn't already. So we eagerly await Feb. 3 when I meet with the maternal fetal specialist (NOT Dr. Wallace this time) to see how his lungs are doing. Dr. Kao says that even a healthy baby has a slim chance of living if delivered between 20 and 26 weeks or so. She told us that the baby really has no chance of living unless he is delivered after 28 weeks. I was 22 yesterday, so we have at least 6 to go. The bad news about this is that if the little one does fall into distress between now and 28 weeks, there is pretty much nothing that can be done - he doesn't have a chance either way. So we really need to pray that he makes it to 28 weeks. 30, 31, 32 would definitely be better. As far as our options after he is born, we are looking at 3 of them, all depending on how his lungs are functioning. First, if his lungs are doing well, they may decide to wait and see if medication will fix the problem. They can use medication to keep one of the pipes open to receive oxygen for his blood. If his lungs are not doing well, depending on the severity of his condition they may decide either to do the series of three surgeries we discussed earlier, or they may decide to do a total heart transplant. If the three surgeries are the option we choose, the first one will take place within 24 hours after he is born. All good information to have. Dr. Kao told me that the more I can rest, the better. She didn't go so far as to prescribe bed rest, but I got the point. I'm actually a little relieved to have SOMETHING that I can actively do to try and help my baby survive. So I'll be taking it easy from now on.
So the things David and I are praying for include: that God reduces the swelling in his heart, and continues to disallow fluid to build up around his heart, to keep his heart beating for another 6 weeks, to allow his lungs to develop normally, and for God to prepare and send us a new OB doc to deliver this special child because the phenomenal OB that I love won't be able to deliver me at the hospital where he can receive the best care, and that God will prepare a special surgeon at Medical City hospital just for this baby so that I can deliver him at the same hospital where he will be treated for his heart condition.
Thank you for your continued prayers. THEY ARE WORKING. Also pray that David and I continue to have the strength and the patience to wait out the next 6 weeks. Blessings to all of you.
Thanks again,
Rachael and David
David and I had our latest visit with the fetal cardiac specialist, Dr. Kao, yesterday. This was the first doctor's appointment in a month where I haven't cried afterword for one reason or another.
First the good news: Dr. Kao was very encouraged to see that the baby is doing so well. Yes, his heart is enlarged, but the fluid level around his heart is not increasing. The baby is growing and tracking well and reaching his fetal milestones in every other area. He is currently showing no signs of distress due to his heart problems, and I am feeling him move multiple times daily. Sometimes I think I have a kick boxer living in my tummy. Also, we had several tests done to check for chromosomal abnormalities in my system to see if I'm a carrier for things like Down's syndrome, Cystic fibrosis, and a rarer abnormality called DiGeorge syndrome that causes it's carriers to be more likely to have congenital heart defects (I had one, and now my son has one). The good news is that 3 of the 5 tests they have run have come back with negative results (not a carrier), so there is a minuscule chance that our baby will be born with these chromosomal defects. Praise God! Still waiting for results on the last 2.
So the bad news: Dr. Kao said she can understand why Dr. Wallace gave us such a pessimistic prognosis last Monday. She said the baby's heart is very, very enlarged. So much so, that his heart may start hampering the development of his lungs, if it hasn't already. So we eagerly await Feb. 3 when I meet with the maternal fetal specialist (NOT Dr. Wallace this time) to see how his lungs are doing. Dr. Kao says that even a healthy baby has a slim chance of living if delivered between 20 and 26 weeks or so. She told us that the baby really has no chance of living unless he is delivered after 28 weeks. I was 22 yesterday, so we have at least 6 to go. The bad news about this is that if the little one does fall into distress between now and 28 weeks, there is pretty much nothing that can be done - he doesn't have a chance either way. So we really need to pray that he makes it to 28 weeks. 30, 31, 32 would definitely be better. As far as our options after he is born, we are looking at 3 of them, all depending on how his lungs are functioning. First, if his lungs are doing well, they may decide to wait and see if medication will fix the problem. They can use medication to keep one of the pipes open to receive oxygen for his blood. If his lungs are not doing well, depending on the severity of his condition they may decide either to do the series of three surgeries we discussed earlier, or they may decide to do a total heart transplant. If the three surgeries are the option we choose, the first one will take place within 24 hours after he is born. All good information to have. Dr. Kao told me that the more I can rest, the better. She didn't go so far as to prescribe bed rest, but I got the point. I'm actually a little relieved to have SOMETHING that I can actively do to try and help my baby survive. So I'll be taking it easy from now on.
So the things David and I are praying for include: that God reduces the swelling in his heart, and continues to disallow fluid to build up around his heart, to keep his heart beating for another 6 weeks, to allow his lungs to develop normally, and for God to prepare and send us a new OB doc to deliver this special child because the phenomenal OB that I love won't be able to deliver me at the hospital where he can receive the best care, and that God will prepare a special surgeon at Medical City hospital just for this baby so that I can deliver him at the same hospital where he will be treated for his heart condition.
Thank you for your continued prayers. THEY ARE WORKING. Also pray that David and I continue to have the strength and the patience to wait out the next 6 weeks. Blessings to all of you.
Thanks again,
Rachael and David
Not Looking Good for the Home Team
Originally posted January 6, 2009
Well, we had our latest sonogram yesterday. To our dismay, we had a different doctor than we did three weeks ago. This doctor delivered bad news with the delicacy of a newscaster reporting the day's weather. It made me so angry.
So the bad news... The doctor said that he didn't think the fluid around the heart was substantially more than at our last sonogram (we breathed a sigh of relief there). However, the baby's heart is extremely enlarged. He said that with the heart being so enlarged this early in our pregnancy, it was unlikely that the baby will survive until viability, much less survive until full term. This doctor said that the baby can't possibly survive outside the womb until 25-26 weeks when they could deliver the baby early and get on with his multiple surgeries. My OB told me the baby could survive outside at 20. Today I am 20 weeks and 4 days.
So today my prayers get more basic and more desperate. Of course we're still praying for a total miracle. I absolutely believe that God could reach down and suddenly cause Baby's tricuspid valve to begin working. My main prayer is simpler than that: just keep his heart beating for 6 more weeks. I don't care if he's months premature, and I have to meet my son for the first time as he's living in a box with life support. I don't care if I don't get to hold him for weeks or months after he's born. Just keep his heart beating so we can deliver him alive and fix his heart. I'm also praying that I never have to see that doctor again because his flippancy has wounded me deeply.
I also want to say I"m sorry to any of you who have miscarried a baby or lost an infant. I wish I had treated you with more compassion and empathy in the past. Now that I have my little one growing inside me, I understand so deeply the love and connection that comes immediately after you find out you're pregnant. I also understand how terrifying and agonizing it is to face the possibility of losing that baby. You didn't lose just another pregnancy. It's not just another miscarriage. You lost a child as dear to you as if that child were already out in the world crawling around and smiling up at you.
I know this is a pretty dramatic note for some of you to read. I'm sorry if it's gushy. I don't think I've ever been in such pain, and I know it's going to get harder, whatever happens to this precious boy of mine.
Thank you for your continued prayers, your love, and your words of encouragement. We love you all.
Blessings,
Rachael and David
Well, we had our latest sonogram yesterday. To our dismay, we had a different doctor than we did three weeks ago. This doctor delivered bad news with the delicacy of a newscaster reporting the day's weather. It made me so angry.
So the bad news... The doctor said that he didn't think the fluid around the heart was substantially more than at our last sonogram (we breathed a sigh of relief there). However, the baby's heart is extremely enlarged. He said that with the heart being so enlarged this early in our pregnancy, it was unlikely that the baby will survive until viability, much less survive until full term. This doctor said that the baby can't possibly survive outside the womb until 25-26 weeks when they could deliver the baby early and get on with his multiple surgeries. My OB told me the baby could survive outside at 20. Today I am 20 weeks and 4 days.
So today my prayers get more basic and more desperate. Of course we're still praying for a total miracle. I absolutely believe that God could reach down and suddenly cause Baby's tricuspid valve to begin working. My main prayer is simpler than that: just keep his heart beating for 6 more weeks. I don't care if he's months premature, and I have to meet my son for the first time as he's living in a box with life support. I don't care if I don't get to hold him for weeks or months after he's born. Just keep his heart beating so we can deliver him alive and fix his heart. I'm also praying that I never have to see that doctor again because his flippancy has wounded me deeply.
I also want to say I"m sorry to any of you who have miscarried a baby or lost an infant. I wish I had treated you with more compassion and empathy in the past. Now that I have my little one growing inside me, I understand so deeply the love and connection that comes immediately after you find out you're pregnant. I also understand how terrifying and agonizing it is to face the possibility of losing that baby. You didn't lose just another pregnancy. It's not just another miscarriage. You lost a child as dear to you as if that child were already out in the world crawling around and smiling up at you.
I know this is a pretty dramatic note for some of you to read. I'm sorry if it's gushy. I don't think I've ever been in such pain, and I know it's going to get harder, whatever happens to this precious boy of mine.
Thank you for your continued prayers, your love, and your words of encouragement. We love you all.
Blessings,
Rachael and David
Pregnancy Update
Originally posted December 24, 2008
I just wanted to take a moment to thank all of you for the overwhelming response of thoughts, encouragement, and most importantly prayer that we have received from all of you when we told you about our baby's heart. The morning after our sonogram was one of my lowest and darkest times ever, but when I turned on my computer and logged on to facebook that morning I just cried with thanksgiving as God lavished mercy and love on me through my friends and spiritual family on facebook. So thanks so much for all your continuing prayers, thoughts, and words of encouragement. They are precious to both me and David.
My doctor called yesterday, just to check on me (talk about outstanding bedside manner! I love that woman!). She said that she spoke personally with the first doctor that performed my sonogram last week (not the fetal cardiac specialist). This doctor had conferred with the cardiac specialist and they decided that pericardial effusion is pretty substantial, serious, and is our major concern right now. Pericardial effusion is when fluid leaks out from the heart and into the pericardial sac. This is very dangerous because if the fluid level becomes to great, the pressure of the fluid could crush the baby's heart, causing it to stop beating and the baby to die. If he was outside the womb, my understanding is that the doctors could drain the fluid, but they are not able to do this in the womb. So we have to wait, pray, and get lots of sonograms to monitor the fluid level around the heart (as well as wait expectantly for God, the great physician, to fix the valve in his tiny little heart). My next sonogram is on Monday, Jan. 5th. I have an appointment with my regular OB a week before that to check the heartbeat.
On a happy note, I'm about 90% sure that I felt the baby move for the first time last night. That confirmation of life was such a relief and was the best Christmas present I could have asked for!
Thank you all again for the encouraging messages and the prayers. Please continually pray for our son, and for his mommy and daddy that we will be strong enough and have enough faith to get through whatever is to come.
Blessings to all of you, and Merry Christmas.
I just wanted to take a moment to thank all of you for the overwhelming response of thoughts, encouragement, and most importantly prayer that we have received from all of you when we told you about our baby's heart. The morning after our sonogram was one of my lowest and darkest times ever, but when I turned on my computer and logged on to facebook that morning I just cried with thanksgiving as God lavished mercy and love on me through my friends and spiritual family on facebook. So thanks so much for all your continuing prayers, thoughts, and words of encouragement. They are precious to both me and David.
My doctor called yesterday, just to check on me (talk about outstanding bedside manner! I love that woman!). She said that she spoke personally with the first doctor that performed my sonogram last week (not the fetal cardiac specialist). This doctor had conferred with the cardiac specialist and they decided that pericardial effusion is pretty substantial, serious, and is our major concern right now. Pericardial effusion is when fluid leaks out from the heart and into the pericardial sac. This is very dangerous because if the fluid level becomes to great, the pressure of the fluid could crush the baby's heart, causing it to stop beating and the baby to die. If he was outside the womb, my understanding is that the doctors could drain the fluid, but they are not able to do this in the womb. So we have to wait, pray, and get lots of sonograms to monitor the fluid level around the heart (as well as wait expectantly for God, the great physician, to fix the valve in his tiny little heart). My next sonogram is on Monday, Jan. 5th. I have an appointment with my regular OB a week before that to check the heartbeat.
On a happy note, I'm about 90% sure that I felt the baby move for the first time last night. That confirmation of life was such a relief and was the best Christmas present I could have asked for!
Thank you all again for the encouraging messages and the prayers. Please continually pray for our son, and for his mommy and daddy that we will be strong enough and have enough faith to get through whatever is to come.
Blessings to all of you, and Merry Christmas.
Please Pray for Our Sick Baby!
Originally posted December 17, 2008
We went to get a sonogram today for our baby thinking we would leave overjoyed with the knowledge of whether to paint the nursery pink or blue. Instead we found ourselves sitting across the table from a fetal cardiologist explaining to us that one of the valves in his heart hasn’t formed correctly and there is a 20-25% chance that he won’t make it to term. The other scenario is that he does make it to term and immediately has to undergo surgery to enable his heart to work. He would then have to undergo two more surgeries, one at 4-6 months and one at 3 years, to basically shut down the lower half of his heart and enable him to live on two heart chambers instead of four. After that he could live a normal life and do everything that other kids do, except he will never make a professional athlete. Considering his father, that was a slim possibility at best.
We would ask all of you to pray for our son. Pray that his heart gets stronger and that he is able to make it to term. Pray that Rachael and I have the strength to get through this. There is nothing we can do, but we serve a God who can do anything.
We went to get a sonogram today for our baby thinking we would leave overjoyed with the knowledge of whether to paint the nursery pink or blue. Instead we found ourselves sitting across the table from a fetal cardiologist explaining to us that one of the valves in his heart hasn’t formed correctly and there is a 20-25% chance that he won’t make it to term. The other scenario is that he does make it to term and immediately has to undergo surgery to enable his heart to work. He would then have to undergo two more surgeries, one at 4-6 months and one at 3 years, to basically shut down the lower half of his heart and enable him to live on two heart chambers instead of four. After that he could live a normal life and do everything that other kids do, except he will never make a professional athlete. Considering his father, that was a slim possibility at best.
We would ask all of you to pray for our son. Pray that his heart gets stronger and that he is able to make it to term. Pray that Rachael and I have the strength to get through this. There is nothing we can do, but we serve a God who can do anything.
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