Thursday, January 5, 2012
As promised!
Wednesday, January 4, 2012
Prayers for others
Hi friends,
It's late...and I am supposed to be in bed. But just before I finished my nightly routine I felt like the Lord brought two things to my mind tonight to pray for and I wanted to share them with you all. I apologize if my writing is sub-par this time around...I'm so tired.
Since we've been regulars in the NNICU and the family waiting room we've met several families with children who are also very sick. Each day we meet new families with babies and children that are facing tough journeys. We've witnessed some very difficult times in the lives of the people around us and our heart breaks each time we hear about a baby or child's struggle to get healthy and go home. Will you also pray for these families when you remember Jude in your prayers? My heart aches for the challenges and pain that so many of these families are weathering. Pray that they can have peace, wisdom and strength to endure each day.
And secondly, will you all lift up a prayer of thanksgiving for the amazing nurses that we've come to love during Jude's times at MUSC? They've become such an amazing support system for Brian and I...and they provide such amazing care for Jude. When Jude was on ECMO he had nurses that were ECMO specialist exclusively and now that he is off of ECMO he has several different nurses. But the ECMO specialist nurses continue to check in on Jude by visiting him and calling to see how he is doing. It has truly touched us how much they've taken to our little guy. We are thankful that the Lord placed these ladies (and one man!) in Jude's life (and ours)!
That's all for now....until tomorrow!
P.S. Jude's last blood gas at 10pm was good. Thankful for good news before I go to sleep!
It's late...and I am supposed to be in bed. But just before I finished my nightly routine I felt like the Lord brought two things to my mind tonight to pray for and I wanted to share them with you all. I apologize if my writing is sub-par this time around...I'm so tired.
Since we've been regulars in the NNICU and the family waiting room we've met several families with children who are also very sick. Each day we meet new families with babies and children that are facing tough journeys. We've witnessed some very difficult times in the lives of the people around us and our heart breaks each time we hear about a baby or child's struggle to get healthy and go home. Will you also pray for these families when you remember Jude in your prayers? My heart aches for the challenges and pain that so many of these families are weathering. Pray that they can have peace, wisdom and strength to endure each day.
And secondly, will you all lift up a prayer of thanksgiving for the amazing nurses that we've come to love during Jude's times at MUSC? They've become such an amazing support system for Brian and I...and they provide such amazing care for Jude. When Jude was on ECMO he had nurses that were ECMO specialist exclusively and now that he is off of ECMO he has several different nurses. But the ECMO specialist nurses continue to check in on Jude by visiting him and calling to see how he is doing. It has truly touched us how much they've taken to our little guy. We are thankful that the Lord placed these ladies (and one man!) in Jude's life (and ours)!
That's all for now....until tomorrow!
P.S. Jude's last blood gas at 10pm was good. Thankful for good news before I go to sleep!
Four weeks and one day old
Jude had a pretty steady day today. His gases were pretty good and we remain hopeful that they will continue to trend in the right direction. He continues to handle being on the oscillator pretty well and we are also hopeful that he will be able to adapt to the weaning of the settings. The doctors would still like to see him comfortable at lower settings on the oscillator so that Jude can hopefully move to the traditional ventilator soon. As Brian mentioned in the post from yesterday it is difficult to wait for things to move forward but we are certain that the Lord's timing is perfect.
At this point, we are anticipating a visit from the surgeon tomorrow sometime and the doctors are hopeful that Jude can have his CDH repair surgery Monday or early next week. Nothing is set in stone right now so please join us praying that Jude's body will be ready for surgery when the surgeon is ready for surgery. We are anxious for him to get his repair as soon as possible but we are also certain that we want him "at his best" before surgery too. It's such a tough place to be as parents. We are so worried for him. We truly desire your prayers and we continue to remain thankful for all of you who are faithfully reading our blog in hopes of knowing how to pray for Jude and our family.
Now, on to a few fun facts about Jude's day:
1. When we arrived this morning Jude was quite alert. He was moving just a little bit (legs and arms) and was looking at us with his big blue eyes. (I took a video of him and I hope to post it sometime tomorrow) He reminds me so much of Annabelle when she was just a few weeks old. His little face is so expressive (despite being heavily sedated) and he looks like he would try to talk if he did not have tubes in his throat. He is simply adorable and lovable.
2. Jude had a little bit of tummy time last night and this afternoon. He LOVED it. He seems most comfortable on his tummy and hopefully he will be given the opportunity to lay on his tummy a little more now. (I also have pictures of this and I hope to post them tomorrow too) I know it must feel good to lay in a different position after being on your back for four weeks!
The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
“The LORD is my portion,” says my soul,
“therefore I will hope in him.”
(Lamentations 3:22-24 ESV)
At this point, we are anticipating a visit from the surgeon tomorrow sometime and the doctors are hopeful that Jude can have his CDH repair surgery Monday or early next week. Nothing is set in stone right now so please join us praying that Jude's body will be ready for surgery when the surgeon is ready for surgery. We are anxious for him to get his repair as soon as possible but we are also certain that we want him "at his best" before surgery too. It's such a tough place to be as parents. We are so worried for him. We truly desire your prayers and we continue to remain thankful for all of you who are faithfully reading our blog in hopes of knowing how to pray for Jude and our family.
Now, on to a few fun facts about Jude's day:
1. When we arrived this morning Jude was quite alert. He was moving just a little bit (legs and arms) and was looking at us with his big blue eyes. (I took a video of him and I hope to post it sometime tomorrow) He reminds me so much of Annabelle when she was just a few weeks old. His little face is so expressive (despite being heavily sedated) and he looks like he would try to talk if he did not have tubes in his throat. He is simply adorable and lovable.
2. Jude had a little bit of tummy time last night and this afternoon. He LOVED it. He seems most comfortable on his tummy and hopefully he will be given the opportunity to lay on his tummy a little more now. (I also have pictures of this and I hope to post them tomorrow too) I know it must feel good to lay in a different position after being on your back for four weeks!
The steadfast love of the LORD never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
“The LORD is my portion,” says my soul,
“therefore I will hope in him.”
(Lamentations 3:22-24 ESV)
Tuesday, January 3, 2012
Waiting
After several days of consistent progress, Jude stalled today: Despite attempts to wean him further on the oscillatory ventilator, his blood gas analyses conducted throughout the day revealed increasing carbon dioxide levels.
To be sure, it seems Jude has been weaned on the ventilator to the point that he's now moving into more challenging territory where his lungs will be pushed to work harder than before. Moreover, Jude still has some pulmonary edema, or fluid accumulation in his lungs, which is impeding the gas exchange that normally occurs during respiration. However, despite these and other variables (e.g. a markedly underdeveloped left lung, agitation) that could account for Jude's higher levels of CO2, we're still scratching our heads when we consider that Jude is oxygenating well (i.e. all things considered, his lungs are doing a fair job of putting oxygen into his blood) but he's continuing to have difficulty expelling CO2 from his bloodstream.
Jude's problem with blowing off CO2 is nothing new, either. When Jude was on ECMO, the sweep gas setting, which most directly regulated his CO2 levels, was the hardest setting to wean. While there's no exact equivalent to that setting on the oscillatory ventilator, the one that most directly impacts his CO2 is becoming more difficult to wean, too.
So what do we do now? We wait.
Jude's doctor has given him Lasix, a diuretic, which prompts him to urinate and will hopefully help reduce the edema that has accumulated in his body, particularly in his lungs, and free his lungs to inflate, expand, and function better. There are several other measures that can be taken to help Jude, too, but getting his weight down and hopefully relieving his pulmonary edema through use of the diuretic is the primary strategy for now, I think.
The ultimate goal of weaning Jude on the oscillatory ventilator is to help him transition to a conventional ventilator, which provides less support but offers surgical advantages over the oscillator. Jude's doctor will soon discuss his status with the pediatric surgeon, and then, provided the surgeon is agreeable to the idea, a tentative plan involving a trial on the conventional ventilator may be in order. Provided such a hypothetical trial run were to happen, and if the trial wasn't a crushing defeat, then Jude might be taken for surgery shortly thereafter. However, such a plan may or may not come to fruition, as the surgeon may not like the idea or Jude may not successfully wean on the oscillator in order to make such a trial even defensible.
The last 24-36 hours have been a challenge for us since Jude's progress has stagnated. We are very thankful that our God gave Jude several great days after coming off ECMO, but we feel that the roller coaster may be starting to dive once more.
Knowing that Jude needs healing that only He can give, we pray that God's steadfast love and supernatural healing will rest on him. And as we grow weary and impatient in the midst of Jude's suffering, we pray that we wouldn't steel ourselves and try to muster strength or endurance out of our paltry resources. We pray that instead, by God's own grace and through His Spirit, we would trust in His promises, and that when we falter, we might fall into His arms and be carried.
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has borne in me these songs
And if I weep let it be as a man
Who is longing for his home.
(From "If I Stand" by Rich Mullins)
Have you not known? Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
(Isaiah 40:28-31)
To be sure, it seems Jude has been weaned on the ventilator to the point that he's now moving into more challenging territory where his lungs will be pushed to work harder than before. Moreover, Jude still has some pulmonary edema, or fluid accumulation in his lungs, which is impeding the gas exchange that normally occurs during respiration. However, despite these and other variables (e.g. a markedly underdeveloped left lung, agitation) that could account for Jude's higher levels of CO2, we're still scratching our heads when we consider that Jude is oxygenating well (i.e. all things considered, his lungs are doing a fair job of putting oxygen into his blood) but he's continuing to have difficulty expelling CO2 from his bloodstream.
Jude's problem with blowing off CO2 is nothing new, either. When Jude was on ECMO, the sweep gas setting, which most directly regulated his CO2 levels, was the hardest setting to wean. While there's no exact equivalent to that setting on the oscillatory ventilator, the one that most directly impacts his CO2 is becoming more difficult to wean, too.
So what do we do now? We wait.
Jude's doctor has given him Lasix, a diuretic, which prompts him to urinate and will hopefully help reduce the edema that has accumulated in his body, particularly in his lungs, and free his lungs to inflate, expand, and function better. There are several other measures that can be taken to help Jude, too, but getting his weight down and hopefully relieving his pulmonary edema through use of the diuretic is the primary strategy for now, I think.
The ultimate goal of weaning Jude on the oscillatory ventilator is to help him transition to a conventional ventilator, which provides less support but offers surgical advantages over the oscillator. Jude's doctor will soon discuss his status with the pediatric surgeon, and then, provided the surgeon is agreeable to the idea, a tentative plan involving a trial on the conventional ventilator may be in order. Provided such a hypothetical trial run were to happen, and if the trial wasn't a crushing defeat, then Jude might be taken for surgery shortly thereafter. However, such a plan may or may not come to fruition, as the surgeon may not like the idea or Jude may not successfully wean on the oscillator in order to make such a trial even defensible.
The last 24-36 hours have been a challenge for us since Jude's progress has stagnated. We are very thankful that our God gave Jude several great days after coming off ECMO, but we feel that the roller coaster may be starting to dive once more.
Knowing that Jude needs healing that only He can give, we pray that God's steadfast love and supernatural healing will rest on him. And as we grow weary and impatient in the midst of Jude's suffering, we pray that we wouldn't steel ourselves and try to muster strength or endurance out of our paltry resources. We pray that instead, by God's own grace and through His Spirit, we would trust in His promises, and that when we falter, we might fall into His arms and be carried.
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has borne in me these songs
And if I weep let it be as a man
Who is longing for his home.
(From "If I Stand" by Rich Mullins)
Have you not known? Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the LORD shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.
(Isaiah 40:28-31)
Monday, January 2, 2012
Monday with our boy
Hi friends! Jude's mommy here...
Just wanted to give all of you a quick update on our little guy. Today Jude continued to rest (he snoozed quite a bit today, but as a nurse told us today, "snoozing means that he is growing!) and settle into using the oscillatory ventilator. Overall he had a good day and the doctors were pleased with his progress. Jude took a few steps back on the settings on the oscillatory ventilator but his blood gases remain mostly positive.
I want to echo Brian's requests for prayer in the following areas:
1. Please join us in praying that Jude can continue to progress steadily on the oscillatory ventilator in hopes of going onto the conventional ventilator. The surgeons would like for Jude to be on an conventional ventilator for surgery.
2. Pray for Jude's lungs and that they would remain open, that he would experience good gas exchange in his lungs.
3. Pray that no significant pulmonary hypertension or other cardiovascular issues would present.
4. Pray that conditions would continue to be increasingly favorable for the surgery to fix his diaphragmatic hernia.
We've been so excited over the last few days because the Lord provided a way for Jude to come off of ECMO safely and he has remained mostly stable since. However, after experiencing several positive days we are beginning to face the reality again: Jude's life is still at risk. CDH is a very serious condition and Jude's battle is likely not even halfway done. He has yet to have his repair surgery and the days/weeks after Jude's surgery are the some of the most critical. We simply have to wait and see what Jude's lungs and heart are capable of. We are so anxious for Jude to have his CDH repair surgery but we are also so nervous about how his little body will perform afterwards. Will you join us in praying NOW for his little body to be prepared for the big push after his repair? We don't know yet when his surgery will take place but we know that the Lord is faithful and that his plan for Jude and our family is good. We are truly resting and trusting in that.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
Just wanted to give all of you a quick update on our little guy. Today Jude continued to rest (he snoozed quite a bit today, but as a nurse told us today, "snoozing means that he is growing!) and settle into using the oscillatory ventilator. Overall he had a good day and the doctors were pleased with his progress. Jude took a few steps back on the settings on the oscillatory ventilator but his blood gases remain mostly positive.
I want to echo Brian's requests for prayer in the following areas:
1. Please join us in praying that Jude can continue to progress steadily on the oscillatory ventilator in hopes of going onto the conventional ventilator. The surgeons would like for Jude to be on an conventional ventilator for surgery.
2. Pray for Jude's lungs and that they would remain open, that he would experience good gas exchange in his lungs.
3. Pray that no significant pulmonary hypertension or other cardiovascular issues would present.
4. Pray that conditions would continue to be increasingly favorable for the surgery to fix his diaphragmatic hernia.
We've been so excited over the last few days because the Lord provided a way for Jude to come off of ECMO safely and he has remained mostly stable since. However, after experiencing several positive days we are beginning to face the reality again: Jude's life is still at risk. CDH is a very serious condition and Jude's battle is likely not even halfway done. He has yet to have his repair surgery and the days/weeks after Jude's surgery are the some of the most critical. We simply have to wait and see what Jude's lungs and heart are capable of. We are so anxious for Jude to have his CDH repair surgery but we are also so nervous about how his little body will perform afterwards. Will you join us in praying NOW for his little body to be prepared for the big push after his repair? We don't know yet when his surgery will take place but we know that the Lord is faithful and that his plan for Jude and our family is good. We are truly resting and trusting in that.
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. - Jeremiah 29:11
Sunday, January 1, 2012
A New Year Begins With a Good Day
The first day of the new year was a good one for our baby boy.
Jude continued to show progress today: His blood gas analysis results were great, and the medical staff weaned him on the ventilator throughout the day. The weaning has been somewhat conservative, as is necessary to prevent respiratory complications, but Jude has consistently shown improvement since he was decannulated on Friday. He was a little puffy in his appearance this morning, but that seemed to slowly improve through the afternoon, particularly after he was given a dose of Lasix and had some good urine output. His chest x-ray from today looked good as well: His right lung is expanded, and his left lung has also opened up quite a bit, too.
If Jude continues to have good blood gas results as he's weaned even further on the oscillatory ventilator, then it's likely that he'll be moved onto the conventional ventilator in the next tomorrow or Tuesday. We expect that soon after that, provided he remains stable, his surgeon will want to do his surgical repair. We'll share info about his prospective surgery as we learn more over the next day or two.
Over the next few days, please be in prayer with us that the Lord would continue to carry Jude through these difficult times. We pray that his lungs would remain open, that he would experience good gas exchange in his lungs, that no significant pulmonary hypertension or other cardiovascular issues would present, that he would transition smoothly to a conventional ventilator, and that conditions would continue to be increasingly favorable for the surgery to fix his diaphragmatic hernia.
We are incredibly thankful for the wonderful upswing that Jude has been experiencing, particularly since coming off ECMO. It is amazing to pause and consider the many obstacles that Jude has encountered and how the Lord has sustained him through them all. Multiple ECMO circuit changes, emergent insertion of a drain in his abdomen, peritonitis, sepsis -- these things and the complications that followed were very real setbacks, and yet Jude has been delivered through all of them. Thanks be to God!
Jude continued to show progress today: His blood gas analysis results were great, and the medical staff weaned him on the ventilator throughout the day. The weaning has been somewhat conservative, as is necessary to prevent respiratory complications, but Jude has consistently shown improvement since he was decannulated on Friday. He was a little puffy in his appearance this morning, but that seemed to slowly improve through the afternoon, particularly after he was given a dose of Lasix and had some good urine output. His chest x-ray from today looked good as well: His right lung is expanded, and his left lung has also opened up quite a bit, too.
If Jude continues to have good blood gas results as he's weaned even further on the oscillatory ventilator, then it's likely that he'll be moved onto the conventional ventilator in the next tomorrow or Tuesday. We expect that soon after that, provided he remains stable, his surgeon will want to do his surgical repair. We'll share info about his prospective surgery as we learn more over the next day or two.
Over the next few days, please be in prayer with us that the Lord would continue to carry Jude through these difficult times. We pray that his lungs would remain open, that he would experience good gas exchange in his lungs, that no significant pulmonary hypertension or other cardiovascular issues would present, that he would transition smoothly to a conventional ventilator, and that conditions would continue to be increasingly favorable for the surgery to fix his diaphragmatic hernia.
We are incredibly thankful for the wonderful upswing that Jude has been experiencing, particularly since coming off ECMO. It is amazing to pause and consider the many obstacles that Jude has encountered and how the Lord has sustained him through them all. Multiple ECMO circuit changes, emergent insertion of a drain in his abdomen, peritonitis, sepsis -- these things and the complications that followed were very real setbacks, and yet Jude has been delivered through all of them. Thanks be to God!
A note from Rose
Hi friends,
Just a quick message from me (Rose)! Brian will likely write a full update on Jude later tonight but I wanted to share a few things with you.
1. Thank you to ALL of you who have emailed us about potential storage space for my breast milk for Jude! I hope to contact each of you about working out how and when I could store my milk in your homes. Thank you for being so generous and giving so that Jude can benefit from my breast milk in the future. I've overfilled my space at the hospital (4 drawers worth) and I've also filled the freezer at the house where we are staying so I am VERY thankful for extra space to store my milk until Jude can begin feeds. He will likely be given the opportunity to try eating soon after his CDH repair surgery. I'm glad that I've been able to store up plenty of milk for our little guy. Thank you!
2. We also want to thank all of you for the many ways that you have shown your love and support for Jude and our family. We want to apologize for not being as available as we wish we could be to all of you. As you can imagine, our life looks much different than it looked a month ago. We spend most of our day at the hospital and when we return to the house we have plenty of things to do to prepare for the next day. Thank you for all you've done to support us and forgive us for not being able to thank you in person. Each day we reflect on the many ways that the Lord continues to bless us through the love you all give to Jude and our family and each day we are overwhelmed with gratitude.
3. One thing that we've not shared on the blog yet is that currently Brian and I are the only people visiting Jude in the NNICU. More than a week ago we decided to limit the visits from others so that Jude's exposure to viruses, etc. would be minimal. As you all know, Jude had a severe infection that could have taken his life and because of this horrible scare we've decided to postpone all visits from people other than Brian and I at least until after he has his CDH repair surgery. And we may wait quite awhile after that to allow visitors. It was a hard choice to make but we feel that it is the best choice right now to minimize the amount of germs that Jude will encounter. Please continue to pray for Jude to remain healthy and free from infection and illness.
I think that is all for now...look for another blog from Brian later tonight with a fuller update on Jude's progress today. I must say that it was a good day! In addition to the progress that Jude made medically we were able to spend a lot of time being parents to Jude. We took his temperature, changed his diapers, helped change his bedding and gave him a few tastes of breast milk. It was so nice to do things to help care for Jude. We could not help care for him nearly as much while he was on ECMO so we are thankful for the opportunity to interact and care for our little man.
Just a quick message from me (Rose)! Brian will likely write a full update on Jude later tonight but I wanted to share a few things with you.
1. Thank you to ALL of you who have emailed us about potential storage space for my breast milk for Jude! I hope to contact each of you about working out how and when I could store my milk in your homes. Thank you for being so generous and giving so that Jude can benefit from my breast milk in the future. I've overfilled my space at the hospital (4 drawers worth) and I've also filled the freezer at the house where we are staying so I am VERY thankful for extra space to store my milk until Jude can begin feeds. He will likely be given the opportunity to try eating soon after his CDH repair surgery. I'm glad that I've been able to store up plenty of milk for our little guy. Thank you!
2. We also want to thank all of you for the many ways that you have shown your love and support for Jude and our family. We want to apologize for not being as available as we wish we could be to all of you. As you can imagine, our life looks much different than it looked a month ago. We spend most of our day at the hospital and when we return to the house we have plenty of things to do to prepare for the next day. Thank you for all you've done to support us and forgive us for not being able to thank you in person. Each day we reflect on the many ways that the Lord continues to bless us through the love you all give to Jude and our family and each day we are overwhelmed with gratitude.
3. One thing that we've not shared on the blog yet is that currently Brian and I are the only people visiting Jude in the NNICU. More than a week ago we decided to limit the visits from others so that Jude's exposure to viruses, etc. would be minimal. As you all know, Jude had a severe infection that could have taken his life and because of this horrible scare we've decided to postpone all visits from people other than Brian and I at least until after he has his CDH repair surgery. And we may wait quite awhile after that to allow visitors. It was a hard choice to make but we feel that it is the best choice right now to minimize the amount of germs that Jude will encounter. Please continue to pray for Jude to remain healthy and free from infection and illness.
I think that is all for now...look for another blog from Brian later tonight with a fuller update on Jude's progress today. I must say that it was a good day! In addition to the progress that Jude made medically we were able to spend a lot of time being parents to Jude. We took his temperature, changed his diapers, helped change his bedding and gave him a few tastes of breast milk. It was so nice to do things to help care for Jude. We could not help care for him nearly as much while he was on ECMO so we are thankful for the opportunity to interact and care for our little man.
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