I just got off the phone with Jude's nurse. The surgeons stopped the procedure after they discovered the problem with his bowel, regrouped, put in a femoral catheter, ordered extra units of blood and other things they would need, then they began again about 30-45 minutes ago, I think.
As of 11:30, Jude was still stable, he hadn't lost any more blood than is to be expected with his surgical repair, his liver had been moved (it may have been in his chest after all, although we're not certain), and the surgeons were beginning to look more closely at his diaphragm, which was coming into view. Jude's nurse said that it looked like there was, in fact, some diaphragm, but they hadn't been able to get a good look yet.
We're happy about this first report, but the surgery is probably going to last a long time, so we're trying to pace ourselves as much as we can. Please continue to pray with us!
Monday, January 9, 2012
Urgent Prayer Request -- Problem in Surgery
Folks,
Rose and I just got some very troubling news, and we ask that you join us in pleading God's mercy and healing for Jude.
After the surgeon opened up Jude, he found "the worst thing he could have found:" Because of Jude's recent peritonitis, Jude's bowel is matted and fused together, and his liver is enlarged. The surgeon is going to attempt to unravel his bowel and organs, but he is very worried about bleeding from the blood vessels caught up in his organs there. As yet, he can't even see Jude's diaphragm to determine how big the defect is.
This is extremely serious and life threatening. It's not certain whether the surgeon will be successful in what he now has to do. Jude's specific problem and circumstances leading up to now are very unique, and it sounds like the surgeons have never seen anything quite like this before. The procedure will now take much longer as the surgeon begins the tedious work of gently pulling apart his organs.
Please, please join us and pray for Jude's healing. We know that so many of you have already been in prayer for him, and we are so very thankful. We know that God can work miracles, and Jude needs one.
This story has stuck with me since our pastor mentioned it in a sermon some time back:
And they came to Jericho. And as he was leaving Jericho with his disciples and a great crowd, Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside. And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!” And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.” And they called the blind man, saying to him, “Take heart. Get up; he is calling you.” And throwing off his cloak, he sprang up and came to Jesus. And Jesus said to him, “What do you want me to do for you?” And the blind man said to him, “Rabbi, let me recover my sight.” And Jesus said to him, “Go your way; your faith has made you well.” And immediately he recovered his sight and followed him on the way.
(Mark 10:46-52)
Rose and I just got some very troubling news, and we ask that you join us in pleading God's mercy and healing for Jude.
After the surgeon opened up Jude, he found "the worst thing he could have found:" Because of Jude's recent peritonitis, Jude's bowel is matted and fused together, and his liver is enlarged. The surgeon is going to attempt to unravel his bowel and organs, but he is very worried about bleeding from the blood vessels caught up in his organs there. As yet, he can't even see Jude's diaphragm to determine how big the defect is.
This is extremely serious and life threatening. It's not certain whether the surgeon will be successful in what he now has to do. Jude's specific problem and circumstances leading up to now are very unique, and it sounds like the surgeons have never seen anything quite like this before. The procedure will now take much longer as the surgeon begins the tedious work of gently pulling apart his organs.
Please, please join us and pray for Jude's healing. We know that so many of you have already been in prayer for him, and we are so very thankful. We know that God can work miracles, and Jude needs one.
This story has stuck with me since our pastor mentioned it in a sermon some time back:
And they came to Jericho. And as he was leaving Jericho with his disciples and a great crowd, Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside. And when he heard that it was Jesus of Nazareth, he began to cry out and say, “Jesus, Son of David, have mercy on me!” And many rebuked him, telling him to be silent. But he cried out all the more, “Son of David, have mercy on me!” And Jesus stopped and said, “Call him.” And they called the blind man, saying to him, “Take heart. Get up; he is calling you.” And throwing off his cloak, he sprang up and came to Jesus. And Jesus said to him, “What do you want me to do for you?” And the blind man said to him, “Rabbi, let me recover my sight.” And Jesus said to him, “Go your way; your faith has made you well.” And immediately he recovered his sight and followed him on the way.
(Mark 10:46-52)
Jude's Surgery Moved Up to 9 AM Today!
We got a call from the NICU about 30 minutes ago indicating that Jude has been moved up to be the surgeons' first case of the day, so he'll be taken down to the OR around 9 AM and the surgery will begin soon thereafter.
We were surprised that Jude's surgeon decided to make this last minute change, but hopefully it will be to his benefit. We are scrambling to all get ready and head down to the hospital, but I wanted to take a moment to let you all know what's going on.
Please pray for our little boy and the medical staff who will be performing the surgery. May God's healing hands continue to rest on our little boy and may He give the surgeons and other staff wisdom and skilled hands to lovingly care for him as they attempt to mend his little body.
We were surprised that Jude's surgeon decided to make this last minute change, but hopefully it will be to his benefit. We are scrambling to all get ready and head down to the hospital, but I wanted to take a moment to let you all know what's going on.
Please pray for our little boy and the medical staff who will be performing the surgery. May God's healing hands continue to rest on our little boy and may He give the surgeons and other staff wisdom and skilled hands to lovingly care for him as they attempt to mend his little body.
Sunday, January 8, 2012
Surgery Tomorrow -- Prayers Requested (and a little bit of snuggling)
As we prepare to start a new week and cross off another day at the beginning of Jude's second month of life, we're preparing ourselves (as much as we can, I suppose) for his surgery, which is scheduled for 1:30 pm tomorrow afternoon. It's hard to believe that more than a month has passed since he was born and that he's had to endure so many difficulties and setbacks to make it to his surgical repair, but the Lord has done amazing things as He has accomplished His plans for Jude along the way, and we're confident and hopeful that He will carry Jude just as well through surgery and its aftermath.
So what will tomorrow look like?
Although we understand that it's possible to perform surgical repair for a diaphragmatic hernia laparoscopically (i.e. via small incision(s) that are minimally invasive), Jude's surgeon has determined that instead he will open him through a large incision on his torso and manually move the abdominal organs in his chest down into the areas where they should be. He may or may not have tubes or drains inserted to relieve his body of excess fluid. Jude will be on a ventilator for the duration of the surgery, and he'll be given both anesthesia and a paralytic drug, which will render him motionless for the procedure. After surgery is over, he'll be brought back up to the NICU to recover.
Post-surgery, here are some issues that Jude and the medical staff may or may not have to contend with, so Rose and I ask for your prayer for them:
Now on to the snuggling! (from Rose)
A few days ago we were told that if Jude was able to get onto the conventional ventilator then I might have the opportunity to hold him. When Jude surprised us with the switch yesterday I was hopeful that I might have the opportunity to hold Jude, but I wasn't quite sure if the doctors would allow it. This morning in rounds the docs gave the "ok" for me to hold him for a few minutes as long as he handled it well and as long as his stats remained steady.
So, this afternoon I sat on a big comfy chair and held my sweet son for the first time. What an amazing moment! Jude was so snuggly and so comfy on my chest that he had the best of his best CO2 levels for the day! It made me so happy to know that he was so peaceful laying on my chest. He was doing so well, in fact, that I was able to hold him for three hours! I would have held him even longer if I could have!
I am so thankful that the Lord provided a way for me to hold Jude before his big surgery tomorrow. My heart is so full this evening! We took MANY pictures and videos of our snuggling session and we hope to post a few tomorrow afternoon as we sit in the waiting room during Jude's surgery.
Thank you for your prayers for Jude. Tomorrow is such a big day but I feel more confident knowing that the Lord is with Jude and that so many of you are praying. We will update you on how he is doing as often as we can.
Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.
(Matthew 6:34)
So what will tomorrow look like?
Although we understand that it's possible to perform surgical repair for a diaphragmatic hernia laparoscopically (i.e. via small incision(s) that are minimally invasive), Jude's surgeon has determined that instead he will open him through a large incision on his torso and manually move the abdominal organs in his chest down into the areas where they should be. He may or may not have tubes or drains inserted to relieve his body of excess fluid. Jude will be on a ventilator for the duration of the surgery, and he'll be given both anesthesia and a paralytic drug, which will render him motionless for the procedure. After surgery is over, he'll be brought back up to the NICU to recover.
Post-surgery, here are some issues that Jude and the medical staff may or may not have to contend with, so Rose and I ask for your prayer for them:
- Jude will be given a lot of fluid during surgery, and he'll probably take fluid on board as his body reacts to the surgical trauma, so fluid management will be a big issue that the medical staff will need to deal with in the days and/or weeks to come. If you've been following this blog for a while, then you probably know how fluid can put pressure on various organs and thus hinder their functioning. We're praying that any extra fluid he retains won't put inordinate pressure on the surrounding tissues or organs, and that it won't restrict his blood flow to any parts of his body.
- Although Jude has already weathered a lot of pain as a result of medical problems or procedures, his surgical repair will probably be the most painful thing that he'll have to endure while he's in the hospital; consequently, the medical staff caring for him will have to be very vigilant and careful as they manage his pain post-surgery. Jude has already been on morphine (narcotic for pain relief) and Versed (sedative) drips for about a month, and he has received boluses of both of those drugs plus lorazepam (anti-anxiety drug) periodically as needed. Because he's been on morphine and Versed for so long and his dosages have been steadily increased, he has developed a tolerance to those medications, which may make using them for pain relief/sedation more difficult. Jude has yet to really receive much fentanyl, a powerful synthetic narcotic that's much more potent than morphine, so that may come into play as needed. We're praying that the Lord would minimize his pain as much as possible, that he would give wisdom to the medical staff as they determine which drugs to use for pain, and that the drugs would be effective in regulating his pain levels.
- Although recent echocardiograms have revealed very little evidence of pulmonary hypertension, we know that it can present again post-surgery. If it does reappear, then it could pose another obstacle to Jude's recovery. We're hopeful, however, that the scant evidence of pulmonary hypertension in recent tests portend good things for Jude, and we're praying that it won't reappear or, if it does, that it is manageable.
- Because Jude's bowel (or much of it) is in his chest and will need to be moved back to it's rightful place there is potential for trauma to his bowel which could result in gastrointestinal issues in the future. We are praying the Jude's bowel will endure the surgery and placement with no issues and that if there are issues they will be minimal.
- As with any surgical procedure, there are risks to Jude and his life. We are praying that the Lord will carry Jude through his surgery with no problems and that his vital signs will remain healthy and strong.
- After Jude's organs are moved to the appropriate places we are hopeful that his lungs will spread out and open up to be used at their full potential. We are praying that Jude's lungs will be larger and healthier than expected. We are praying that his lungs will be just the right size for sustaining Jude.
Now on to the snuggling! (from Rose)
A few days ago we were told that if Jude was able to get onto the conventional ventilator then I might have the opportunity to hold him. When Jude surprised us with the switch yesterday I was hopeful that I might have the opportunity to hold Jude, but I wasn't quite sure if the doctors would allow it. This morning in rounds the docs gave the "ok" for me to hold him for a few minutes as long as he handled it well and as long as his stats remained steady.
So, this afternoon I sat on a big comfy chair and held my sweet son for the first time. What an amazing moment! Jude was so snuggly and so comfy on my chest that he had the best of his best CO2 levels for the day! It made me so happy to know that he was so peaceful laying on my chest. He was doing so well, in fact, that I was able to hold him for three hours! I would have held him even longer if I could have!
I am so thankful that the Lord provided a way for me to hold Jude before his big surgery tomorrow. My heart is so full this evening! We took MANY pictures and videos of our snuggling session and we hope to post a few tomorrow afternoon as we sit in the waiting room during Jude's surgery.
Thank you for your prayers for Jude. Tomorrow is such a big day but I feel more confident knowing that the Lord is with Jude and that so many of you are praying. We will update you on how he is doing as often as we can.
Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.
(Matthew 6:34)
Saturday, January 7, 2012
Out With the Oscillator, In With the Conventional Vent!
Apparently, Jude was done with the oscillator today: Throughout the morning, he was breathing over the vent a lot, he was seriously distressed (i.e. making the "crying face," flailing, elevated vitals), and his blood gases were getting steadily worse, with his CO2 levels continuing to climb. His chest x-ray revealed some lung collapse on the right side and some persistent pulmonary edema. At this point, the medical staff began to consider that perhaps Jude was trying to tell them that he didn't "like" the oscillator anymore and was ready to move on to the conventional ventilator. Their suspicion turned out to be right!
Around midday, Jude was switched over to the conventional vent, and he adjusted to the change very well. As the afternoon wore on, his blood gases looked a lot better, and the gas readings became much more consistent with minimal variance. And finally, after several days of appearing to get very little rest, he sacked out. He was even sucking on his gastric suction tube while he was sleeping. :)
We're so thankful to God for this move in the right direction, and, of course (!), we never would have anticipated that it would happen in this way. Please join us in praising God for what is shaping up to be a good day, and please continue to lift Jude up with us and ask our Lord that He will protect him over the next two days and prepare him for surgery on Monday.
Bless the LORD, O my soul,
and all that is within me,
bless his holy name!
Bless the LORD, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit,
who crowns you with steadfast love and mercy,
who satisfies you with good
so that your youth is renewed like the eagle's.
(Psalm 103:1-5)
Around midday, Jude was switched over to the conventional vent, and he adjusted to the change very well. As the afternoon wore on, his blood gases looked a lot better, and the gas readings became much more consistent with minimal variance. And finally, after several days of appearing to get very little rest, he sacked out. He was even sucking on his gastric suction tube while he was sleeping. :)
We're so thankful to God for this move in the right direction, and, of course (!), we never would have anticipated that it would happen in this way. Please join us in praising God for what is shaping up to be a good day, and please continue to lift Jude up with us and ask our Lord that He will protect him over the next two days and prepare him for surgery on Monday.
Bless the LORD, O my soul,
and all that is within me,
bless his holy name!
Bless the LORD, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit,
who crowns you with steadfast love and mercy,
who satisfies you with good
so that your youth is renewed like the eagle's.
(Psalm 103:1-5)
Friday, January 6, 2012
Pray, pray, pray! (and updates)
Hi friends,
I wanted to ask for your prayers tonight again for Jude. You've all been so faithful to pray for our little guy.
This afternoon (after we left the hospital for the day) we called to check on Jude and see how his blood gases were looking. Jude's gas at around 4:30pm was a little high on the CO2 side...a little concerning but his CO2 can be a little high when he is agitated. Jude's nurse told us that she was going to get another gas at around 6:30pm and that we could call back and find out the results. At 6:30, his CO2 was even higher. Quite concerning. At this point they are not sure why his CO2 is higher but they are working to find out. His most recent x-ray suggests that one of his lungs might have collapsed just a little and that he continues to have the pulmonary edema that has been hanging around for quite some time.
The nurse told us that at this point the plan is:
1. Go up a little bit on his settings on the oscillator to support him a little better.
2. Give another dose of lasix to help get more fluid out of his system.
3. Continue to suction him often because they are getting some secretions from his lungs.
After we put Annabelle to bed Brian decided to head back up to the hospital to get a better picture of what is going on with Jude and to see what the plan seems to be. It's nice to be able to call Jude's nurse and get updates but it is even better to be able to physically be there with him as doctors/specialist visit.
What you can pray for:
1. That Jude's CO2s will go down instead of up. Pray that his gases will return to a healthy place and that they will remain there until surgery on Monday.
2. Pray that his lungs will open up and remain open until surgery on Monday.
3. Pray that all of the measures that the doctors are taking to help Jude with his recent problems will be effective.
4. Pray that Jude will be ready for surgery on Monday.
5. Pray for us as we ride through the many ups and downs that we are facing. We found out this afternoon that Jude's surgery is scheduled for 1:30pm on Monday. We are struggling a little tonight because we feel SO close to Jude's CDH repair and we are hopeful that this is not another major setback.
Please lift Jude up in prayer tonight and please continue to share his story and our prayer requests with your friends and family. We are so thankful for your desire to take your prayers for Jude's little life to our Father.
We will try to update you on Jude's status tonight after Brian gets back from the hospital.
For where two or three are gathered in my name, there am I among them.”
(Matthew 18:20 ESV)
UPDATES:
8:50pm - Brian just called and let me know that the medical staff is taking all precautions to make sure that they are aware of any problems that may be going on with Jude. They are taking blood cultures to find out if there is any chance of infection. The good news is that the last gas that they took was "beautiful" according to the nurse. Please pray that the next gas that they take is "beautiful" as well and that they continue to be "beautiful"! I will update again when he calls.
10:30pm - This gas wasn't a good one. Jude still has high CO2 levels. He is quite agitated and can't seem to get settled. They put him on antibiotics to be safe too. Please continue to pray for his gases to improve. They will check another set of gases at midnight to see if he has improved after some of the changes they made since the last one. (his positioning and suctioning out his airway)
I wanted to ask for your prayers tonight again for Jude. You've all been so faithful to pray for our little guy.
This afternoon (after we left the hospital for the day) we called to check on Jude and see how his blood gases were looking. Jude's gas at around 4:30pm was a little high on the CO2 side...a little concerning but his CO2 can be a little high when he is agitated. Jude's nurse told us that she was going to get another gas at around 6:30pm and that we could call back and find out the results. At 6:30, his CO2 was even higher. Quite concerning. At this point they are not sure why his CO2 is higher but they are working to find out. His most recent x-ray suggests that one of his lungs might have collapsed just a little and that he continues to have the pulmonary edema that has been hanging around for quite some time.
The nurse told us that at this point the plan is:
1. Go up a little bit on his settings on the oscillator to support him a little better.
2. Give another dose of lasix to help get more fluid out of his system.
3. Continue to suction him often because they are getting some secretions from his lungs.
After we put Annabelle to bed Brian decided to head back up to the hospital to get a better picture of what is going on with Jude and to see what the plan seems to be. It's nice to be able to call Jude's nurse and get updates but it is even better to be able to physically be there with him as doctors/specialist visit.
What you can pray for:
1. That Jude's CO2s will go down instead of up. Pray that his gases will return to a healthy place and that they will remain there until surgery on Monday.
2. Pray that his lungs will open up and remain open until surgery on Monday.
3. Pray that all of the measures that the doctors are taking to help Jude with his recent problems will be effective.
4. Pray that Jude will be ready for surgery on Monday.
5. Pray for us as we ride through the many ups and downs that we are facing. We found out this afternoon that Jude's surgery is scheduled for 1:30pm on Monday. We are struggling a little tonight because we feel SO close to Jude's CDH repair and we are hopeful that this is not another major setback.
Please lift Jude up in prayer tonight and please continue to share his story and our prayer requests with your friends and family. We are so thankful for your desire to take your prayers for Jude's little life to our Father.
We will try to update you on Jude's status tonight after Brian gets back from the hospital.
For where two or three are gathered in my name, there am I among them.”
(Matthew 18:20 ESV)
UPDATES:
8:50pm - Brian just called and let me know that the medical staff is taking all precautions to make sure that they are aware of any problems that may be going on with Jude. They are taking blood cultures to find out if there is any chance of infection. The good news is that the last gas that they took was "beautiful" according to the nurse. Please pray that the next gas that they take is "beautiful" as well and that they continue to be "beautiful"! I will update again when he calls.
10:30pm - This gas wasn't a good one. Jude still has high CO2 levels. He is quite agitated and can't seem to get settled. They put him on antibiotics to be safe too. Please continue to pray for his gases to improve. They will check another set of gases at midnight to see if he has improved after some of the changes they made since the last one. (his positioning and suctioning out his airway)
Thursday, January 5, 2012
Stable and Looking Toward Surgery Early Next Week
Presently, Jude is stable on the oscillator. The medical staff are still working on weaning him on the vent settings, but they're doing so conservatively in order to minimize the risk of lung collapse or otherwise compromise the progress that he's made. It feels like we're in a holding pattern as we wait for surgery early next week (per the attending neonatologist), but we know that each day is one that the Lord has made and has its own purpose.
We're thankful today that the Lord has continued to preserve Jude, and we pray that He would continue to do that. We know that God is already accomplishing amazing things through his life, even as a newborn. Please join us in praying that Jude's little body will remain healthy and free from illness or infection until his surgery early next week.
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
Proverbs 3:5-6
We're thankful today that the Lord has continued to preserve Jude, and we pray that He would continue to do that. We know that God is already accomplishing amazing things through his life, even as a newborn. Please join us in praying that Jude's little body will remain healthy and free from illness or infection until his surgery early next week.
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways submit to him,
and he will make your paths straight.
Proverbs 3:5-6
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