Instead of continuing to increase the amount of formula Grant is taking by bottle, the last few days he has been taking less and less. When we go to give him his bottle he starts shaking his head side to side, flailing his arms around and kicking his legs. The last two nights as I've attempted to hold the bottle in his mouth, in spite of his attempts to reject it, he has responded by throwing up all over me. :)
The nurse told me that some babies get really used to tube feeding and don't like the bottle because it is too much work to suck. I really hope that this is not what Grant has decided because we are eager to get the tube out. But, he has to drink all his bottles by mouth for that to be a reality. Please pray that Grant would start to like his bottle again.
Tuesday, January 16, 2007
Monday, January 15, 2007
We've Come So Far
Today I was looking back at our earliest blogs surrounding Grant's birth and the first week of his life. It really hit me how far he's come. Sometimes I tend to get frustrated by the oxygen or having to wake him in the middle of the night to give him meds, and I forget to be thankful for all the answered prayers we have seen.
A few days ago after a sleepless night, a delivery of a second malfunctioning oxygen compressor and a baby that cried every time I put him down, I said to a friend, "This is too hard. I just can't do it." When I've said that before to people they tend to answer, "Yes, you can." But, this person surprised me with their answer. They said, "You are right. You can't do it because you are trying to do it alone. That is why you need to invite Christ to carry your burden. Then it won't feel so heavy." That was a real turning point for me. When I try to care for Grant on my own and forget to talk to God throughout the day I feel burned out and anxious. But, when I ask God for His help and His peace and His wisdom when caring for Grant, He gives it to me. I am so thankful that we have a personal God, one that we can talk to and whose voice we can hear if we are still enough to listen. He has heard our prayers and yours. Thank you God, and thank you friends.
A few days ago after a sleepless night, a delivery of a second malfunctioning oxygen compressor and a baby that cried every time I put him down, I said to a friend, "This is too hard. I just can't do it." When I've said that before to people they tend to answer, "Yes, you can." But, this person surprised me with their answer. They said, "You are right. You can't do it because you are trying to do it alone. That is why you need to invite Christ to carry your burden. Then it won't feel so heavy." That was a real turning point for me. When I try to care for Grant on my own and forget to talk to God throughout the day I feel burned out and anxious. But, when I ask God for His help and His peace and His wisdom when caring for Grant, He gives it to me. I am so thankful that we have a personal God, one that we can talk to and whose voice we can hear if we are still enough to listen. He has heard our prayers and yours. Thank you God, and thank you friends.
Thursday, January 11, 2007
Right on Track
We just got back from U of M for Grant's first check up. They said he is right on track in terms of his progress. He still has some congestion in his lungs, but much less than when we left the hospital. His respitory rate has improved and his chest scar is healing nicely. They want to keep him on the oxygen for now and will re-evaluate his need for it at our next appointment on February 8. (Start praying now!) He is gaining weight, but is still not eating as much as a healthy baby at his age. They told us that if he drinks his whole bottle by mouth for 24 hours, we can pull the tube. Right now he drinks his whole bottle 2-3 times in a 24 hour period and we have to tube the rest. However, we started "suck therapy" yesterday and I'm hoping Grant will continue to improve on the bottle.
Wednesday, January 10, 2007
Tuesday, January 09, 2007
One month update
Grant is one month old today. Our visiting nurse came today and had both good news and not so good news. The good news is that Grant gained a pound this past week! The not so good news is that his respitory rate is "higher than we'd like to see." So, we continue to pray and we'll see what the doctor at U of M says on Thursday.
Sunday, January 07, 2007
Visiting nurse
Our visiting nurse came this week to check on Grant and things went well. He has gained a little weight (2 oz) since leaving the hospital and is keeping down his formula. (Thanks for your prayers! We've had no projectile vomiting since the last post!) We go back to U of M on Thursday for lung x-rays and to meet with Grant's doctors.
Thursday, January 04, 2007
Grant's first outing
Yesterday Grant got to see the outside world for the first time since we came home from the hospital. It is not an easy thing to get Grant out of the house because he has to be hooked up to the portable oxygen tank at all times. Right now it takes both Jim and me to do this, but hopefully after a while I will feel comfortable doing it myself. Jim plans to go back next week, after a full month off. I'm so thankful to have his help this week as we settle into life.
My mom has been an amazing help running errands, feeding Grant, singing to him and making his special "protein shakes." Speaking of "protein shakes" (a special high calorie formula that Grant needs), please pray that Grant's stomach tolerates the new recipe that we are starting tonight. We tried to give it to him a few days ago, but his little tummy wouldn't tolerate it. He really needs to gain weight and strength at this point. Please also continue to pray for healing for Grant's lungs. He continues to breathe really fast, which is within the normal range for him, but still faster than healthy babies. He can only take a few sips from his bottle at this point before he needs to rest and take catch his breath.
On the other hand, his lungs must be working pretty well, because I can hear a cry in the next room...
My mom has been an amazing help running errands, feeding Grant, singing to him and making his special "protein shakes." Speaking of "protein shakes" (a special high calorie formula that Grant needs), please pray that Grant's stomach tolerates the new recipe that we are starting tonight. We tried to give it to him a few days ago, but his little tummy wouldn't tolerate it. He really needs to gain weight and strength at this point. Please also continue to pray for healing for Grant's lungs. He continues to breathe really fast, which is within the normal range for him, but still faster than healthy babies. He can only take a few sips from his bottle at this point before he needs to rest and take catch his breath.
On the other hand, his lungs must be working pretty well, because I can hear a cry in the next room...
Tuesday, January 02, 2007
Almost Normal Crazy
I think life at home with Grant is just now starting to become more like what new parents experience when they arrive home with a new, healthy baby--crazy, yes, but a normal crazy.
We're so thankful: Grant is doing great; Shan is being an all-star mom; Shan's mom (now a Grandma!) has been such a big help; friends from Genesis (our church) are providing us with meals; and it is sunny today (perhaps the biggest miracle of all given that it is January in Michigan).
Our only real problem is that Michigan lost the Rose Bowl. Oh, and we need more sleep. A lot more sleep. But that is a normal rite of passage for new parents and is nothing worth taking up cyberspace to jabber on about.
Since we're normally not big bloggers, our posts will be a bit less frequent going forward. We'll put up some pictures, perhaps, and we'll definitely give updates on our next four big hurdles:
1. Follow-up appointment with our cardiovascular nurse practicioner, Katie, on 1/11/07
2. First appointment with our cardiolist, Dr. Cotts, on 2/08/07
3. Grant not needing the feeding tube in his nose (he grows stronger)
4. Grant graduating from the oxygen tank (lungs heal and high pulmonary blood pressure gone)
Thank you for continuing to pray for our family!
We're so thankful: Grant is doing great; Shan is being an all-star mom; Shan's mom (now a Grandma!) has been such a big help; friends from Genesis (our church) are providing us with meals; and it is sunny today (perhaps the biggest miracle of all given that it is January in Michigan).
Our only real problem is that Michigan lost the Rose Bowl. Oh, and we need more sleep. A lot more sleep. But that is a normal rite of passage for new parents and is nothing worth taking up cyberspace to jabber on about.
Since we're normally not big bloggers, our posts will be a bit less frequent going forward. We'll put up some pictures, perhaps, and we'll definitely give updates on our next four big hurdles:
1. Follow-up appointment with our cardiovascular nurse practicioner, Katie, on 1/11/07
2. First appointment with our cardiolist, Dr. Cotts, on 2/08/07
3. Grant not needing the feeding tube in his nose (he grows stronger)
4. Grant graduating from the oxygen tank (lungs heal and high pulmonary blood pressure gone)
Thank you for continuing to pray for our family!
Sunday, December 31, 2006
Happy New Year!
We're doing fine and sure are thankful to be heading in the right direction.
Yet in many ways, this stage of the journey is the hardest yet. All the medical care we have to give Grant takes more time and energy than just the regular new parent stuff. Add the two together and we haven't slept much, that is for sure. But, Grant is doing fairly well.
One big item in Grant's recovery is an increased calorie diet. However, Grant has not been feeding well since we arrived home so we are wrestling with all the variables trying to get it to work. Please pray that Grant would begin to eat more and to digest it well.
Thanks again for everything. Godspeed in 2007!
Yet in many ways, this stage of the journey is the hardest yet. All the medical care we have to give Grant takes more time and energy than just the regular new parent stuff. Add the two together and we haven't slept much, that is for sure. But, Grant is doing fairly well.
One big item in Grant's recovery is an increased calorie diet. However, Grant has not been feeding well since we arrived home so we are wrestling with all the variables trying to get it to work. Please pray that Grant would begin to eat more and to digest it well.
Thanks again for everything. Godspeed in 2007!
Saturday, December 30, 2006
Grant's Echo
Before we could leave the hospital, Grant had to have an echo, lung x-rays etc. When the doctors came to Grant's room that night they had some disappointing news for us. They said the echo showed "a somewhat prominent left-sided vein draining superiorly into the left innominate vein from an unclear origin." Translation- Grant has an extra vein that is still connected wrong. The implications for this are unclear at this time. Practically, it means that Grant's oxygen flow is decreased about 10%. The lifestyle challenges for this are similar to someone who has a hole in their heart. This is not a reason to go back and do more surgery. However, if this vein becomes obstructed, like his original veins did, this would become a problem and more surgery would be required.
Sometime later one of the cardiologists came back and told us that she talked to the surgeon and he said he did not see this vein during the surgery. He does not think that the extra vein exists. This is a possiblity, the cardiologist told us, because echos are sometimes not clear. However, on our discharge report from the hospital, it states that Grant still has an extra superior vein connected incorrectly. When talking to the cardiologist that we will meet with on an ongoing basis once home, he said all we can do for now is keep an eye on it, continue to get echos and make decisions as Grant grows stronger and his heart gets bigger. He was very reassuring in terms of believing we can catch a problem like obstruction before it becomes an emergency situation. His last words to me were, "this is for me to worry about. Not you."
I feel so thankful that Grant is doing as well as he is. I have great hope that once we get through the next few months Grant will not be too different from most healthy kids. Right now we are overwhelmed by the amount of care he needs. It takes two of us to care for him most of the time because we are still learning how to be nurses in addition to parents. We do have a visiting nurse coming by tomorrow to help with a few things. I'm not sure I'm ever going to let Jim go back to work...
I love being a mom and I think Grant is going to thrive being out of the hospital. He must be enjoying not hearing beeps go off every five seconds. I know I am. :)
Prayer requests:
1. That Grant's heart and lungs continue to heal. (We'd love to get off the oxygen ASAP so Grant can be more mobile around the house. Right now he's plugged into the wall.)
2. That Grant does not develop any infections from his incisions.
3. That Grant's extra vein would never become obstructed.
Thank you friends!
Sometime later one of the cardiologists came back and told us that she talked to the surgeon and he said he did not see this vein during the surgery. He does not think that the extra vein exists. This is a possiblity, the cardiologist told us, because echos are sometimes not clear. However, on our discharge report from the hospital, it states that Grant still has an extra superior vein connected incorrectly. When talking to the cardiologist that we will meet with on an ongoing basis once home, he said all we can do for now is keep an eye on it, continue to get echos and make decisions as Grant grows stronger and his heart gets bigger. He was very reassuring in terms of believing we can catch a problem like obstruction before it becomes an emergency situation. His last words to me were, "this is for me to worry about. Not you."
I feel so thankful that Grant is doing as well as he is. I have great hope that once we get through the next few months Grant will not be too different from most healthy kids. Right now we are overwhelmed by the amount of care he needs. It takes two of us to care for him most of the time because we are still learning how to be nurses in addition to parents. We do have a visiting nurse coming by tomorrow to help with a few things. I'm not sure I'm ever going to let Jim go back to work...
I love being a mom and I think Grant is going to thrive being out of the hospital. He must be enjoying not hearing beeps go off every five seconds. I know I am. :)
Prayer requests:
1. That Grant's heart and lungs continue to heal. (We'd love to get off the oxygen ASAP so Grant can be more mobile around the house. Right now he's plugged into the wall.)
2. That Grant does not develop any infections from his incisions.
3. That Grant's extra vein would never become obstructed.
Thank you friends!
Friday, December 29, 2006
We're home!
Hooray! We arrived home from the hospital late last night and have been busy ever since- setting up oxygen, feeding Grant through his tube, giving medication around the clock etc. Jim promises to fill you in on details of Grant's status and our last few days at the hospital soon.
Wednesday, December 27, 2006
Tuesday, December 26, 2006
Waiting for test results
Today Grant had an EKG, eco and lung x-rays. The results of these tests will tell us more about Grant's progress and when we get to go home. We are currently waiting for the doctors to come in and interpret the results for us. We are so thankful to be going home soon. (Sometime this week, most likely.) But, at the same time I have to admit that I am overwhelmed. Today a man came in and explained to us how to hook the oxygen tank up for our car ride home...I put the feeding tube down Grant's nose for the first time today.. and I learned to give him steroids through his little mask...
We are so thankful for his progress, but it is begining to sink in how much care he is going to need even at home. The good news is all of this should be temporary. We'll let you know as soon as we hear from the doctors on our official departure date.
We are so thankful for his progress, but it is begining to sink in how much care he is going to need even at home. The good news is all of this should be temporary. We'll let you know as soon as we hear from the doctors on our official departure date.
Monday, December 25, 2006
Sunday, December 24, 2006
I'm Afraid We're Annoyingly Thankful
We have so much to be thankful for...
-We have such amazingly loving friends. Messages on the blog, emails, calls, visits, tears, ears, food and prayers--we're overwhelmed with your generous care.
-Even more precious to us has been our loving family. Thank you, thank you, thank you to each and every one. Your love-in-action has made all the difference.
-And most of all, we are so thankful for the love of Jesus. It has been such a gift to so tangibly experience God's peace and tender care through all of this. People can chat theory and theology all they want, but nobody can argue with our genuine encounters with God.
-Grant has been more wide-eyed and bushy-tailed (I don't know where he got the tail; must be Shannon's side).
-He's been so very content.
-He is taking an increasing percentage of his meals from a bottle vs. a feeding tube (means he is getting stronger).
-The chest tube has been removed. Hooray! It drained almost nothing in the last 36 hours so they said it was okay for it to come out. The day before it drained more than ever, meaning it would need to stay in longer; the doc said it might need to be in until Tuesday the 26th. But after we blogged for prayer on this it just dried right up. This is huge because it was the last big hurdle before we can go home.
-We've been able now to hold him quite a bit which has been just fantastic for all of us.
-UM Hospital nurses and doctors are absolutely incredible. One of the cardiologist doctors told me that if Grant had been born in most other areas of the country he likely wouldn't have made it. The UM hospital is one of the handful of places that are able to handle such a situation. There aren't many emergencies in pediatric cardiology--most conditions aren't immediately fatal. The obstruction Grant had along with his goofed-up plumbing, however, is the one and only cardiac emergency situation for kids. Put it this way--the helicopter ride Grant took to the UM Hospital was a life-saver. And I found this interesting: the doc surmised that if Grant had been born just 5-10 years ago he probably wouldn't have made it. Advancements in recent years have been that dramatic.
-We'll probably be able to go home on Tuesday the 26th or 27th.
-The doctors expect Grant to go on to a full recovery and be completely normal and healthy. I asked the doctor to expound on his definition of "normal"--I mean, can Grant be on both the chess team and the football team someday...or just chess? He said, and I paraphrase, the sky is the limit. The condition Grant had (so nice to be able to say had vs. has) is one of the few that actually have a fix, whereas most congenital heart conditions can only be managed with multiple surgeries and medications. Gosh, are we ever thankful for that.
Only a few challenges remain...
-Grant still isn't ready to wein off of the oxygen tubes. Please pray that he is soon able.
-Grant still needs to be fed about half of his meal through a nasogastric tube (referred to as an "NG"). I had to put a new one in him yesterday--it is kind of hard to shove 12 inches of tube down your son's nose until it gets to his stomach. But he just isn't strong enough yet to drink all of his milk from a bottle. It really isn't a big deal to do it, and once it is in it doesn't bother him much, but we'd really prefer to not have to go home with it. They say he may need it for a few weeks or even a month or so. Please pray that Grant quickly grows strong enough to take all of his milk from a bottle.
-Grant is on 4 medications and will hopefully wein off of them over the next few months: Sildenafil, which dilates blood vessels to reduce the blood pressure in his pulmonary arteries; two diuretics to also help reduce his blood pressure; and an inhaler to open his lungs and help him breathe. Please pray that his blood pressure returns to completely normal, his lungs heal completely and he is able to successfully wein off each medication.
-About 10% of patients that had Grant's condition have difficulties down the road. Some need a follow-up open-heart surgery, but that generally pops up within a year. Once a year has past, only a very small percentage ever has issues later. Grant's procedure went great and they expect him to be fine, but please pray that the pulmonary veins they surgically attached to his heart remain perfectly healthy and continue to grow along with Grant as he grows.
So, our dream is that many of you would continue to pray for Grant throughout 2007 for complete healing and that all of the wonderful things God has in store for Grant would someday come to pass.
Merry Christmas! And to some of our friends, Happy Kwanzaa! And to others, Happy (belated) Hanukkah! We so love you all,
Jim, Shannon & Grant.
-We have such amazingly loving friends. Messages on the blog, emails, calls, visits, tears, ears, food and prayers--we're overwhelmed with your generous care.
-Even more precious to us has been our loving family. Thank you, thank you, thank you to each and every one. Your love-in-action has made all the difference.
-And most of all, we are so thankful for the love of Jesus. It has been such a gift to so tangibly experience God's peace and tender care through all of this. People can chat theory and theology all they want, but nobody can argue with our genuine encounters with God.
-Grant has been more wide-eyed and bushy-tailed (I don't know where he got the tail; must be Shannon's side).
-He's been so very content.
-He is taking an increasing percentage of his meals from a bottle vs. a feeding tube (means he is getting stronger).
-The chest tube has been removed. Hooray! It drained almost nothing in the last 36 hours so they said it was okay for it to come out. The day before it drained more than ever, meaning it would need to stay in longer; the doc said it might need to be in until Tuesday the 26th. But after we blogged for prayer on this it just dried right up. This is huge because it was the last big hurdle before we can go home.
-We've been able now to hold him quite a bit which has been just fantastic for all of us.
-UM Hospital nurses and doctors are absolutely incredible. One of the cardiologist doctors told me that if Grant had been born in most other areas of the country he likely wouldn't have made it. The UM hospital is one of the handful of places that are able to handle such a situation. There aren't many emergencies in pediatric cardiology--most conditions aren't immediately fatal. The obstruction Grant had along with his goofed-up plumbing, however, is the one and only cardiac emergency situation for kids. Put it this way--the helicopter ride Grant took to the UM Hospital was a life-saver. And I found this interesting: the doc surmised that if Grant had been born just 5-10 years ago he probably wouldn't have made it. Advancements in recent years have been that dramatic.
-We'll probably be able to go home on Tuesday the 26th or 27th.
-The doctors expect Grant to go on to a full recovery and be completely normal and healthy. I asked the doctor to expound on his definition of "normal"--I mean, can Grant be on both the chess team and the football team someday...or just chess? He said, and I paraphrase, the sky is the limit. The condition Grant had (so nice to be able to say had vs. has) is one of the few that actually have a fix, whereas most congenital heart conditions can only be managed with multiple surgeries and medications. Gosh, are we ever thankful for that.
Only a few challenges remain...
-Grant still isn't ready to wein off of the oxygen tubes. Please pray that he is soon able.
-Grant still needs to be fed about half of his meal through a nasogastric tube (referred to as an "NG"). I had to put a new one in him yesterday--it is kind of hard to shove 12 inches of tube down your son's nose until it gets to his stomach. But he just isn't strong enough yet to drink all of his milk from a bottle. It really isn't a big deal to do it, and once it is in it doesn't bother him much, but we'd really prefer to not have to go home with it. They say he may need it for a few weeks or even a month or so. Please pray that Grant quickly grows strong enough to take all of his milk from a bottle.
-Grant is on 4 medications and will hopefully wein off of them over the next few months: Sildenafil, which dilates blood vessels to reduce the blood pressure in his pulmonary arteries; two diuretics to also help reduce his blood pressure; and an inhaler to open his lungs and help him breathe. Please pray that his blood pressure returns to completely normal, his lungs heal completely and he is able to successfully wein off each medication.
-About 10% of patients that had Grant's condition have difficulties down the road. Some need a follow-up open-heart surgery, but that generally pops up within a year. Once a year has past, only a very small percentage ever has issues later. Grant's procedure went great and they expect him to be fine, but please pray that the pulmonary veins they surgically attached to his heart remain perfectly healthy and continue to grow along with Grant as he grows.
So, our dream is that many of you would continue to pray for Grant throughout 2007 for complete healing and that all of the wonderful things God has in store for Grant would someday come to pass.
Merry Christmas! And to some of our friends, Happy Kwanzaa! And to others, Happy (belated) Hanukkah! We so love you all,
Jim, Shannon & Grant.
Saturday, December 23, 2006
Friday, December 22, 2006
Chest tube update
The chest tube didn't come out again today. There is still too much drainage from the surgery. They said it won't come out tomorrow either. Please pray that his drainage slows down to less than 3 cc's. Right now it is over 20. (Unfortunately, this is an increase from yesterday.)
Thursday, December 21, 2006
Onward & Upward
The kid almost seems normal now--he whines, cries, eats out of a bottle in addition to the feeding tube, sleeps all day and then poops like a rhino. And we love it.
Saw the senior doc today and he said Grant is doing great. Chest tube is still in though...please pray the drainage stops so they can take it out tomorrow.
His lungs are slowly repairing and doc said they will recover completely in time. Hooray!
So, next steps are:
1. Chest tube out
2. Slowly get off the oxygen
3. Go home (we'll most likely be released the middle of next week)
4. Wean off the meds over the course of several weeks
5. Have periodic check-ups to see how he is doing as some percentage of TAPVR patients require a second surgery within a year.
Shannon has been having difficulty sleeping again, which really triggers a downward spiral--thank you for continuing to pray for her.
We love you all!
Saw the senior doc today and he said Grant is doing great. Chest tube is still in though...please pray the drainage stops so they can take it out tomorrow.
His lungs are slowly repairing and doc said they will recover completely in time. Hooray!
So, next steps are:
1. Chest tube out
2. Slowly get off the oxygen
3. Go home (we'll most likely be released the middle of next week)
4. Wean off the meds over the course of several weeks
5. Have periodic check-ups to see how he is doing as some percentage of TAPVR patients require a second surgery within a year.
Shannon has been having difficulty sleeping again, which really triggers a downward spiral--thank you for continuing to pray for her.
We love you all!
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