Tuesday, January 30, 2007
Still at U of M
We're still at U of M. Grant's color looks better since his transfusion, but we don't have many answers beyond that. He's still not eating from the bottle and is very much in pain most of his waking hours. We've found a lot of things that don't work, but we're still doing trial and error to find out what it will take to make him feel better.
Monday, January 29, 2007
Transfusion complete
Grant just finished getting his blood transfusion. They will continue to closely monitor him to make sure he doesn't spike a fever and that his body reacts well to the blood. It is exciting to think that he won't be anemic anymore and that his heart can stop working so hard.
Assuming all goes well with the transfusion, our next concern is that he still won't take the bottle and is clearly miserable when taking food through his nose tube. The occupational therapist we saw today said that Grant now associates the bottle with extreme pain. Please pray that Grant sees food as enjoyable. We also have the problem that when he gets food through the tube he continues to throw it up. Hence, us ending up in the ER twice for dehydration. Our favorite nurse here at the hospital told us not to leave until Grant keeps his food down for 24 hours. However, we are having trouble actualy getting a GI doctor to our room. Please pray that we can get Grant's reflux under control so he can be out of his misery and we can go home.
Assuming all goes well with the transfusion, our next concern is that he still won't take the bottle and is clearly miserable when taking food through his nose tube. The occupational therapist we saw today said that Grant now associates the bottle with extreme pain. Please pray that Grant sees food as enjoyable. We also have the problem that when he gets food through the tube he continues to throw it up. Hence, us ending up in the ER twice for dehydration. Our favorite nurse here at the hospital told us not to leave until Grant keeps his food down for 24 hours. However, we are having trouble actualy getting a GI doctor to our room. Please pray that we can get Grant's reflux under control so he can be out of his misery and we can go home.
We Love Blood Donors
We're back at U of M. Grant developed a fever yesterday, so we went to Beaumont and they transported us to Ann Arbor.
So, the bad news is that Grant has been having difficulties.
The good news is that they have identified the causes:
1. Anemia (low on red blood cells)
2. Virus (his 2nd one in two weeks)
It is also good news that the anemia and virus are not heart-related issues.
But the bad news is that they do negatively affect his heart.
But the good news is that they think they have a solution!
Well, there is no solution to the virus but to let it run it course and to make sure Grant stays hydrated via an IV (he hasn't been able to handle his feedings). So this is fine and he already appears much better today than yesterday.
The anemia is normal for a newborn his age, but Grant doesn't have the reserves to handle it. Red blood cells deliver oxygen to the body...so when the body is anemic it compensates by pumping the heart harder. Ah, therein lies the rub--Grant's heart already works too hard, so the whole thing is too much for him to handle well. So they are doing a blood transfusion this morning. This will flush his body with the red blood cells he needs and will literally give him breathing room to heal. They believe his body will then be able to begin producing enough of his own red blood cells over the next few weeks.
They are optimistic that the transfusion will help him fight off the virus and dramatically improve his strength. So if this works as the believe and hope, Grant could very well begin to steadily improve without any more of these setbacks we've been experiencing.
Please pray that:
1. The blood he receives is not infected or contaminated in any way (estimated 1 in 30,000 have some nasty gunk in it) and that Grant's body accepts it.
2. His body quickly nukes the virus.
3. He begins to eat from his bottle easily and consistently.
4. That his heart and lungs fully heal.
The final bit of good news is that Shannon is doing great--peaceful, trusting, calm and we both slept very well last night. Thanks for everything, everybody!
So, the bad news is that Grant has been having difficulties.
The good news is that they have identified the causes:
1. Anemia (low on red blood cells)
2. Virus (his 2nd one in two weeks)
It is also good news that the anemia and virus are not heart-related issues.
But the bad news is that they do negatively affect his heart.
But the good news is that they think they have a solution!
Well, there is no solution to the virus but to let it run it course and to make sure Grant stays hydrated via an IV (he hasn't been able to handle his feedings). So this is fine and he already appears much better today than yesterday.
The anemia is normal for a newborn his age, but Grant doesn't have the reserves to handle it. Red blood cells deliver oxygen to the body...so when the body is anemic it compensates by pumping the heart harder. Ah, therein lies the rub--Grant's heart already works too hard, so the whole thing is too much for him to handle well. So they are doing a blood transfusion this morning. This will flush his body with the red blood cells he needs and will literally give him breathing room to heal. They believe his body will then be able to begin producing enough of his own red blood cells over the next few weeks.
They are optimistic that the transfusion will help him fight off the virus and dramatically improve his strength. So if this works as the believe and hope, Grant could very well begin to steadily improve without any more of these setbacks we've been experiencing.
Please pray that:
1. The blood he receives is not infected or contaminated in any way (estimated 1 in 30,000 have some nasty gunk in it) and that Grant's body accepts it.
2. His body quickly nukes the virus.
3. He begins to eat from his bottle easily and consistently.
4. That his heart and lungs fully heal.
The final bit of good news is that Shannon is doing great--peaceful, trusting, calm and we both slept very well last night. Thanks for everything, everybody!
Saturday, January 27, 2007
A trip to the ER
You'll have to excuse this blog if it doesn't make sense. We were in the ER all night and I have not yet slept. Yesterday Grant threw up 5 of his feedings and slept most of the day. (Those of you who have met him know that he is usually very alert during the day.) He was also coughing a lot and his eyes looked glassy. Needless to say, he wasn't behaving normally. We were worried about possible dehydration and thought the cough might indicate an infection. So, after consulting with our pediatrician and a cardiologist at U of M, we took him to Beaumont, just to be safe. The conclusion was that Grant was a bit dehydrated, so they gave him fluid through an iv. He then kept his most of his next feeding down, so they let us go home.
While Grant was getting checked out I also ended up in the ER. I have been getting hives/rash on my hands for the last couple of days and while at the hospital it got really bad and the nurse suggested I get it checked out, as long as we were just sitting around waiting for Grant's blood work to come back. The conclusion: I am allergic to Germ-X hand sanitizer! I use it a hundred times a day to make sure I am not spreading anything to Grant and had been using it like crazy while we were sitting in the ER. So, I got a steroid and some topical cream and I should be better soon. I guess I'll have to go back to the old fashioned hand washing.
My sweet sister-in-law, Jill, is on her way down from Midland to watch Grant for the day so I can get some sleep. Jim is giving the talk at our church this weekend, so he's pretty tied up preparing his message.
It continues to be an adventure at the Niedzinski household. Thanks for continuing to pray for us, bring us meals etc. We couldn't do it without you.
While Grant was getting checked out I also ended up in the ER. I have been getting hives/rash on my hands for the last couple of days and while at the hospital it got really bad and the nurse suggested I get it checked out, as long as we were just sitting around waiting for Grant's blood work to come back. The conclusion: I am allergic to Germ-X hand sanitizer! I use it a hundred times a day to make sure I am not spreading anything to Grant and had been using it like crazy while we were sitting in the ER. So, I got a steroid and some topical cream and I should be better soon. I guess I'll have to go back to the old fashioned hand washing.
My sweet sister-in-law, Jill, is on her way down from Midland to watch Grant for the day so I can get some sleep. Jim is giving the talk at our church this weekend, so he's pretty tied up preparing his message.
It continues to be an adventure at the Niedzinski household. Thanks for continuing to pray for us, bring us meals etc. We couldn't do it without you.
Friday, January 26, 2007
Experiment gone bad...for now
Shortly after my last blog posting I decided to just go for it and yank the feeding tube. To make a long story short, the I just put the tube back in. Grant tried to eat from his bottle a little bit (less than an ounce) but each time he did he would breathe really hard and sometimes throw up. We decided that it is most important for him to be able to get enough air and not get so tired from sucking. (Not that he was really sucking his bottle that much anyway.) He's asleep right now from crying so hard while we put the tube in and retaped his face. I think we are going to wait to see the doctor and find out if his iron stats have improved before we yank the tube again. That way his heart should be pumping the right amount of oxygen and it won't be a heart issue anymore, just a hunger strike. :)
Thursday, January 25, 2007
So many variables
We're home from the hospital and Grant started on his iron supplements today. Please pray that the iron will have the right impact and that his breathing will slow down as a result. Unfortunately, he is still really unhappy (thrashing, grunting etc.) and has thrown up both his feedings today. He won't take the bottle again. We are not sure if we should take out his feeding tube because it could be making his acid reflux worse, or to keep it in because that is the only way he is getting nutrients at this point. It appears he can't both suck the bottle and get air. But, we've heard of other babies who were so happy to have the tube out that they started eating again. There are so many variables and things to try. I am feeling pretty overwhelmed...
Wednesday, January 24, 2007
Post-Catheter Update
The procedure went well! We don't have all of the answers yet, as the final debrief with the doctors will be this afternoon.
What we do know:
-The evil extra vein that showed up in the echogram they did the other week turned out to be a vein that the surgeon had actually closed off! So it is of no concern at all and can be ignored. There must have been some miscommunication/lack of communication between our cardiologists and the surgeon for them to have not figured this out prior to today's heart catheter. But, no matter--this is very, very good news.
-They found that Grant does have elevated pulmonary pressure (the blood that is coming from the lungs into Grant's heart is flowing faster than they want--kinda like when you put your thumb on the end of a garden hose and it makes the water shoot out faster). There is nothing they can do except give Grant time to see of he'll improve. We haven't yet talked about probabilities, long-term impact, etc. We hope to know more soon.
-They discovered that Grant is anemic (he has low levels of red blood cells) which may be contributing to the elevated pulmonary pressure. He had a blood transfusion during his surgery, so this just recently developed as his own blood became a larger and larger percentage of the whole. The short term solution is medication, but we haven't yet talked with them about the cause, how to fix it for good, long term ramifications, etc.
-As Shannon posted, the gut-doctor put Grant on Zantac to treat his bad acid reflux. It is such a relief that Grant's horrific suffering wasn't linked to his heart! He has already gotten quite a bit better. We're going to be taking Grant's nose tube out next week to see if he'll eat enough through the bottle. We think he will which will make our life so much easier, increase the sleep we're getting and will help with the acid reflux.
Our cardiologist that did the cath said "we're not out of the woods yet...". By that he means that if the pulmonary pressures don't improve and the anemia isn't fixed, then worst case scenario is another open heart surgery. Yuck.
As I've been typing this Grant should have awakened from his sedation...but he hasn't. If he doesn't wake in the next 45 minutes then he'll have to stay the night (bummer). And they would then do a blood transfusion while we're here to improve his red blood cell count.
Well, we may not be out of the woods yet, but we certainly see the end of the forest and we're making a beeline for it.
Shannon and I are doing well and are so thankful for all of your love, prayer, care and support.
What we do know:
-The evil extra vein that showed up in the echogram they did the other week turned out to be a vein that the surgeon had actually closed off! So it is of no concern at all and can be ignored. There must have been some miscommunication/lack of communication between our cardiologists and the surgeon for them to have not figured this out prior to today's heart catheter. But, no matter--this is very, very good news.
-They found that Grant does have elevated pulmonary pressure (the blood that is coming from the lungs into Grant's heart is flowing faster than they want--kinda like when you put your thumb on the end of a garden hose and it makes the water shoot out faster). There is nothing they can do except give Grant time to see of he'll improve. We haven't yet talked about probabilities, long-term impact, etc. We hope to know more soon.
-They discovered that Grant is anemic (he has low levels of red blood cells) which may be contributing to the elevated pulmonary pressure. He had a blood transfusion during his surgery, so this just recently developed as his own blood became a larger and larger percentage of the whole. The short term solution is medication, but we haven't yet talked with them about the cause, how to fix it for good, long term ramifications, etc.
-As Shannon posted, the gut-doctor put Grant on Zantac to treat his bad acid reflux. It is such a relief that Grant's horrific suffering wasn't linked to his heart! He has already gotten quite a bit better. We're going to be taking Grant's nose tube out next week to see if he'll eat enough through the bottle. We think he will which will make our life so much easier, increase the sleep we're getting and will help with the acid reflux.
Our cardiologist that did the cath said "we're not out of the woods yet...". By that he means that if the pulmonary pressures don't improve and the anemia isn't fixed, then worst case scenario is another open heart surgery. Yuck.
As I've been typing this Grant should have awakened from his sedation...but he hasn't. If he doesn't wake in the next 45 minutes then he'll have to stay the night (bummer). And they would then do a blood transfusion while we're here to improve his red blood cell count.
Well, we may not be out of the woods yet, but we certainly see the end of the forest and we're making a beeline for it.
Shannon and I are doing well and are so thankful for all of your love, prayer, care and support.
Tuesday, January 23, 2007
Acid reflux
We visited the GI doctor today and he thinks Grant has a pretty clear cut case of acid reflux. He also believes the reason it has gotten so bad is that the NG tube is irritating him and making the whole thing pretty darn painful. He prescribed zantac and said it should start working anywhere from 48 hours to 2 weeks. In His mercy God seems to be speeding up the process and Grant has improved after just one dose. After his first dose he drank half his bottle! He is not quite his normal self yet, but is calmer than he's been all week. We have the heart cath at 9am tomorrow and they said it should take 2 hours. We'll update you then.
Monday, January 22, 2007
A Day of Fasting
A friend of ours suggested an idea to us that we'd be remiss to ignore: she encouraged us to ask those of you who are followers of Jesus and are familiar with the practice of fasting to join us in a day of prayer and fasting for Grant on Wednesday the 24th (the day of his heart cath)that he'd be completely well.
To all of our friends who are not followers of Jesus--please don't feel left out! Know that we love you and very much appreciate all of your kindness, encouragement and care.
To all of our friends who are not followers of Jesus--please don't feel left out! Know that we love you and very much appreciate all of your kindness, encouragement and care.
Doctor's Visit
Last night Grant continued to scream, fight, gag and throw up during his feedings. After talking to a U of M doc this morning, he suggested we get Grant checked out for possible acid reflux. So, we went to our local pediatrician this morning who said there are so many variables that she is sending us to a GI doctor. So, we are waiting to hear when that appointment will be. (Sometime today or tomorrow.) The heart cath is still scheduled for Wednesday.
Sunday, January 21, 2007
Waiting for Morning
This is now getting really difficult as Grant has begun to suffer. He has times of intermittent normal behavior with times where he thrashes his arms, jerks his head and contracts his whole body while trying to cry through desperate gasps for air.
I wept as I held him in my hands, incensed at his faceless torturer. It's pure horror to watch and not be able to console him, to get my hands on the problem and tear it to pieces.
It is one thing to be inconvenienced, to be a bit low on sleep, to have to learn to shed our anxieties into the capable hands of the God who so tangibly loves and cares for us...but to see my son so miserable makes me furious.
I'll go pray for Grant now, as I can hear him struggling in his crib. Then I'll lay down, chat with God a bit about all this and most certainly feel better. And then there'll be morning--always there with a delivery of fresh hope, renewed energy and hopefully a ray or two of sun.
He always, always get us through.
I wept as I held him in my hands, incensed at his faceless torturer. It's pure horror to watch and not be able to console him, to get my hands on the problem and tear it to pieces.
It is one thing to be inconvenienced, to be a bit low on sleep, to have to learn to shed our anxieties into the capable hands of the God who so tangibly loves and cares for us...but to see my son so miserable makes me furious.
I'll go pray for Grant now, as I can hear him struggling in his crib. Then I'll lay down, chat with God a bit about all this and most certainly feel better. And then there'll be morning--always there with a delivery of fresh hope, renewed energy and hopefully a ray or two of sun.
He always, always get us through.
Saturday, January 20, 2007
Still a mystery
It's Saturday morning and Grant had a rough night. He was constantly grunting (gasping for air) and flailing his arms and legs. Any time we put the bottle in his mouth he gagged. We tube fed him throughout the night and he kept it all down. We talked to the doctors several times throughout the day yesterday. Our cardiologist is amazing and kept calling us at home to check on us. He kept apologizing that they can't figure out what is wrong with Grant and recognized how frustrated we must be as parents. He said he will not rest until Grant is better. He rescheduled the heart cath for Wednesday in hopes that any virus Grant has will be gone by then. However, he said if he continues this behavior we could bring him in on Monday and they'd probably do it then. The danger in letting Grant continue to grunt and struggle to get air is that at some point his heart may just give up from working so hard. But, at the same time they said that they won't do anything for him at the hospital except watch him if we bring him in over the weekend. So, they advised us to watch him very closely at home (thank you Jim for taking the 9pm-5am shift last night)and bring him in if he gets worse. This is all so confusing and not clear cut. Please pray for wisdom for Jim and me to know what to do.
Thursday, January 18, 2007
We're home!
We just arrived home with Grant and I thought I'd update you while grandma gives Grant his bottle. Grant is stable, but there is concern about an underlying problem. The fact that the veins are more constricted since surgery and the extra vein is unexplainable has caused the doctors to schedule a heart cath for January 31 at 11am. They are concerned enough to try to get to the bottom of this.
But, Grant is getting closer and closer to being back to his normal self. So, our hope is that it was just a virus and the surgery did in fact fix everything.
Prayer Requests:
1. Peace for us in caring for Grant at home after such a scare
2. That if there is still a problem with Grant's heart/veins, God would do a miracle and the cath would show it
3. Healing for Grant's lungs
Thanks for your prayer support through this. We believe it is what got us out of the hospital so fast!
But, Grant is getting closer and closer to being back to his normal self. So, our hope is that it was just a virus and the surgery did in fact fix everything.
Prayer Requests:
1. Peace for us in caring for Grant at home after such a scare
2. That if there is still a problem with Grant's heart/veins, God would do a miracle and the cath would show it
3. Healing for Grant's lungs
Thanks for your prayer support through this. We believe it is what got us out of the hospital so fast!
Headed Home?
Grant is improving. However, he is still not the same baby he was a week ago. He is grunting a lot (which is a sign that he's trying to get air) and breathing fast. However, he is starting to drink from his bottle again and seems a lot calmer than he was yesterday.
The doctor came in this morning and said that if Grant continues to drink from his bottle (a sign that he has enough air to suck) then we could go home tonight. The good news is that Grant did drink a significant portion of his first bottle this morning...but, then he proceeded to throw it up. So, again, the situation is not clear cut. The doctor then said that Grant has to make it through the day without throwing up again in order to go home.
So, what was actually the problem? No one is really sure. Although they are willing to send us home, they still want to investigate what caused the flair up. So, they scheduled a heart cath for next week to try to get to the bottom of it. They could keep us in the hospital until then, but they think he'll get stronger and healthier faster if he's at home.
In short, please pray that Grant's breathing slows, he sucks his bottle and he doesn't puke. :) If all this happens we'll see our own bed tonight. We'll keep you posted.
The doctor came in this morning and said that if Grant continues to drink from his bottle (a sign that he has enough air to suck) then we could go home tonight. The good news is that Grant did drink a significant portion of his first bottle this morning...but, then he proceeded to throw it up. So, again, the situation is not clear cut. The doctor then said that Grant has to make it through the day without throwing up again in order to go home.
So, what was actually the problem? No one is really sure. Although they are willing to send us home, they still want to investigate what caused the flair up. So, they scheduled a heart cath for next week to try to get to the bottom of it. They could keep us in the hospital until then, but they think he'll get stronger and healthier faster if he's at home.
In short, please pray that Grant's breathing slows, he sucks his bottle and he doesn't puke. :) If all this happens we'll see our own bed tonight. We'll keep you posted.
Wednesday, January 17, 2007
No Answers Yet
Summary:
They aren't sure why Grant has regressed a bit. He is actually about 20% better than yesterday morning, but still not good enough to call this little episode just a bump in the road. They are considering a bunch of theories regarding the cause and they'll decide tomorrow what to do. Please pray that Grant's lungs and heart heal and that the doctors have wisdom about what to do next.
Details:
They have several theories about what may be causing Grant's regression...
-An infection, though I think they actually ruled that out.
-A hidden virus that is sapping up the tiny energy reserves Grant has, therefore causing his heart to struggle to do its job. Solution: hang out in the hospital until it clears.
-The x-rays of the lungs aren't horrible...but they aren't as good as they would like and expect at this stage in Grant's recovery. But they don't think it's likely that their condition would be causing the level of struggle Grant is experiencing, but it could play a role. Solution: There isn't one, really. They still hope and expect the lungs to get with the program and heal up completely, but they can't be for sure that they will.
-Just before we left the hospital December 28th, they did a final echogram (similar to an ultrasound) on Grant's heart, and lo-and-behold, they saw another rogue vein staggering off into Nowhereville that they didn't know about when they first did the surgery. They discussed it with the surgeon who argued back that he had Grant wide-open during surgery and made sure there were no naughty veins in places they shouldn't be. He asserted that the echogram must be mistaken (they aren't the most precise tools, understand). There was evidence to support his view--Grant's oxygen levels, heart rate and breathing rate were all in the range of what they expected at the time. So, whether the vein was there or not mattered little because if it was there it was small enough to not cause much of a problem anyway. They surmised that it may never cause a problem and could just be left alone (kind of like an appendix). They would plan to do some more tests down the road to see if it was really there and to just keep an eye on things.
While I love our surgeon's conviction (and trust and respect him completely, by the way), it appears from the new echogram they did today that the infamous vein does indeed exist. However, from what they can see, it still doesn't seem like it would be to blame for Grant's current condition, either. But they can't be for sure from just an echogram. Solution: They'll do a heart catheterization (that's where they shove a tube up a vein in his arm or leg into his heart so they can examine it). That'll give them the data they need to determine if the weirdo vein is causing any problems. If it is, there is a chance they can do something about it right then and there with no extra invasive surgery required (whew!). They would prefer to wait a week to do this so they can rule out the virus theory 100%, but they may do it tomorrow anyway; they're just not sure yet.
So, there you have it. Shannon is doing fantastic and I'm so thankful for that. Thanks for being faithful readers and pray-ers!
They aren't sure why Grant has regressed a bit. He is actually about 20% better than yesterday morning, but still not good enough to call this little episode just a bump in the road. They are considering a bunch of theories regarding the cause and they'll decide tomorrow what to do. Please pray that Grant's lungs and heart heal and that the doctors have wisdom about what to do next.
Details:
They have several theories about what may be causing Grant's regression...
-An infection, though I think they actually ruled that out.
-A hidden virus that is sapping up the tiny energy reserves Grant has, therefore causing his heart to struggle to do its job. Solution: hang out in the hospital until it clears.
-The x-rays of the lungs aren't horrible...but they aren't as good as they would like and expect at this stage in Grant's recovery. But they don't think it's likely that their condition would be causing the level of struggle Grant is experiencing, but it could play a role. Solution: There isn't one, really. They still hope and expect the lungs to get with the program and heal up completely, but they can't be for sure that they will.
-Just before we left the hospital December 28th, they did a final echogram (similar to an ultrasound) on Grant's heart, and lo-and-behold, they saw another rogue vein staggering off into Nowhereville that they didn't know about when they first did the surgery. They discussed it with the surgeon who argued back that he had Grant wide-open during surgery and made sure there were no naughty veins in places they shouldn't be. He asserted that the echogram must be mistaken (they aren't the most precise tools, understand). There was evidence to support his view--Grant's oxygen levels, heart rate and breathing rate were all in the range of what they expected at the time. So, whether the vein was there or not mattered little because if it was there it was small enough to not cause much of a problem anyway. They surmised that it may never cause a problem and could just be left alone (kind of like an appendix). They would plan to do some more tests down the road to see if it was really there and to just keep an eye on things.
While I love our surgeon's conviction (and trust and respect him completely, by the way), it appears from the new echogram they did today that the infamous vein does indeed exist. However, from what they can see, it still doesn't seem like it would be to blame for Grant's current condition, either. But they can't be for sure from just an echogram. Solution: They'll do a heart catheterization (that's where they shove a tube up a vein in his arm or leg into his heart so they can examine it). That'll give them the data they need to determine if the weirdo vein is causing any problems. If it is, there is a chance they can do something about it right then and there with no extra invasive surgery required (whew!). They would prefer to wait a week to do this so they can rule out the virus theory 100%, but they may do it tomorrow anyway; they're just not sure yet.
So, there you have it. Shannon is doing fantastic and I'm so thankful for that. Thanks for being faithful readers and pray-ers!
Tuesday, January 16, 2007
Back at the hospital
We're at U of M right now and they are running tests on Grant. So far they've found out that the restriction in his veins has gone from 3 (at the time of his discharge) to 7. They usually don't do surgery unless it is a 12 or higher. However, the doctors told us that going from a 3 to a 7 is probably not enough to cause the distress that Grant is showing. So, they are continuing to run more tests to try to find out what other underlying problems there might be.
They tested him for RSV and it was negative. There is one other infection that they think might be a likely cause, but we don't have the results for it back yet. Please continue to pray, pray, pray.
They tested him for RSV and it was negative. There is one other infection that they think might be a likely cause, but we don't have the results for it back yet. Please continue to pray, pray, pray.
A Step Backward
Over the last few days Grant has had difficulty breathing and showed some signs of congestive heart failure (essentially the heart is having trouble pumping blood as it should). The symptons were bad enough today that Shannon called the cardiologist at the University of Michigan to tell him about it. He had us go to the local emergency room (Royal Oak Beaumont) and they confirmed our suspicions. Grant is not in an "oh-my-gosh-this-is-an-emergency" state, but the boy ain't right, as they say.
They poked, prodded, and took some x-rays and blood tests. He has a more fluid in his lungs than he did at our check-up last week, so this is likely the culprit. Beaumont is shipping us back to the UM hospital for Grant to be re-admitted.
We don't yet know what happens once we're there or what this all means, exactly. It is very possible that this could be a relatively common (though unfortunate) glitch in the healing process--a step backward, if you will--and Grant just needs a bit of extra rest and help to get over the hump. Or it might be something more serious; we don't know.
Please pray for:
1. Shannon and I to be calm and to find ourselves able to converse with and trust in God.
2. Grant's lungs and entire vascular system to be completely healed.
Thank you all! We'll keep you updated...
They poked, prodded, and took some x-rays and blood tests. He has a more fluid in his lungs than he did at our check-up last week, so this is likely the culprit. Beaumont is shipping us back to the UM hospital for Grant to be re-admitted.
We don't yet know what happens once we're there or what this all means, exactly. It is very possible that this could be a relatively common (though unfortunate) glitch in the healing process--a step backward, if you will--and Grant just needs a bit of extra rest and help to get over the hump. Or it might be something more serious; we don't know.
Please pray for:
1. Shannon and I to be calm and to find ourselves able to converse with and trust in God.
2. Grant's lungs and entire vascular system to be completely healed.
Thank you all! We'll keep you updated...
Pray for Grant's feeding
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.
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.
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!
Subscribe to:
Posts (Atom)