I'm not sure where I summoned the energy or courage to do this, but I was struck with the sudden desire to get the phone call to our insurance company over with today so we could start the ball rolling on getting a case manager assigned to our case.
The two people I talked to were very helpful and they said someone will call back in the next 2 days for more information so they can get a case manager assigned. I am so glad that first phone call is out of the way! Having fought for almost two years with a former insurance company to pay claims that it was clearly responsible for in the past, I find it difficult to imagine navigating "the system" all over again. I am reminding myself that ultimately, the former insurance company did finally pay all they owed--it was just quite a journey to get them to do so! Hopefully things will be different with the company we're with now.
Lisa
Be strong and take heart, all you who hope in the Lord. -Psalm 31:24
Tuesday, April 24, 2007
Friday, April 20, 2007
Sorry it's been so long since I posted!
I've had lots of e-mails and queries about how we're doing this week. As many of you are already aware, I work in a university counseling center as a counselor. Our situation with JB has (obviously) continued to be at the forefront of our minds this week, but with the Virginia Tech shootings, it's a little hard to be overly focused on our own situation. Our hearts go out to all the VT students, staff, faculty, and parents who are dealing with this tragedy first-hand: You are all in my heart and in my prayers this week.
As for things with JB, we're somewhat in a holding pattern until the end of June when we see the cardiologist again. Because my work load increased dramatically this week, calling the insurance company and doing some "detail work" had to be put off until next week, so I don't have much news. I did meet with director of our HR department late last week and was heartened by the caring support that was offered. It appears as though we have resources we weren't even aware of, which is a tremendous blessing. The HR director pointed out that we have the best insurance plan we could have given the circumstances. We thank God that He guided us to make the choice we did.
With my old OB's assistance, I was also able to set a first appointment with the doctor who will be my new OB at Vandy. I think I mentioned below that my favorite OB/GYN in the entire world, Dr. Donna Crowe, doen't have privileges at Vandy, so we have to switch. Losing the ability to work with her has been really hard on me, as she is fantastic. There are still a few kinks to work out with the transfer to the new OB, so please pray that situation works itself out well. Another piece of good news is that I don't need to continue to see a perinatologist since the problem is with the baby's health and not with my health. That's good because it's hard to be off work twice a month to see two doctors. It's REALLY good because all the time off I take now counts against my paid maternity leave from work later, so I have to be careful about how much time I take--two doc appts every month would really have eaten into my paid time off.
Some have asked for updated prayer requests, so here you go--some things to be praying about for the next week:
1. PRAISE for the help from Dr. Crowe and Dr. Liske in finding a new OB and making things easier for Lisa.
2. PRAISE for God's provision of good insurance.
3. PRAISE for a good benefits at Lisa's workplace (and for that matter, at Bill's job, too!).
4. PRAISE for supportive people who call and e-mail "just to check in" and send cards that make us smile.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
I know those last 5 haven't changed since the beginning of all of this, but those will probably remain on our list for quite some time to come.
I hope everyone has a peaceful weekend!
Lisa
As for things with JB, we're somewhat in a holding pattern until the end of June when we see the cardiologist again. Because my work load increased dramatically this week, calling the insurance company and doing some "detail work" had to be put off until next week, so I don't have much news. I did meet with director of our HR department late last week and was heartened by the caring support that was offered. It appears as though we have resources we weren't even aware of, which is a tremendous blessing. The HR director pointed out that we have the best insurance plan we could have given the circumstances. We thank God that He guided us to make the choice we did.
With my old OB's assistance, I was also able to set a first appointment with the doctor who will be my new OB at Vandy. I think I mentioned below that my favorite OB/GYN in the entire world, Dr. Donna Crowe, doen't have privileges at Vandy, so we have to switch. Losing the ability to work with her has been really hard on me, as she is fantastic. There are still a few kinks to work out with the transfer to the new OB, so please pray that situation works itself out well. Another piece of good news is that I don't need to continue to see a perinatologist since the problem is with the baby's health and not with my health. That's good because it's hard to be off work twice a month to see two doctors. It's REALLY good because all the time off I take now counts against my paid maternity leave from work later, so I have to be careful about how much time I take--two doc appts every month would really have eaten into my paid time off.
Some have asked for updated prayer requests, so here you go--some things to be praying about for the next week:
1. PRAISE for the help from Dr. Crowe and Dr. Liske in finding a new OB and making things easier for Lisa.
2. PRAISE for God's provision of good insurance.
3. PRAISE for a good benefits at Lisa's workplace (and for that matter, at Bill's job, too!).
4. PRAISE for supportive people who call and e-mail "just to check in" and send cards that make us smile.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
I know those last 5 haven't changed since the beginning of all of this, but those will probably remain on our list for quite some time to come.
I hope everyone has a peaceful weekend!
Lisa
Friday, April 13, 2007
A Very Public Thank You to Two Special Moms!
I have been so blessed to connect with two very special moms over the course of the last week. They have provided so much support via e-mail and have been kind enough to describe our situation on their children's blog sites and ask for prayers for us. I want to take this oppportunity to publicly thank them for taking time out of their very busy lives to support me!
The first is Kelly, Baby Max's mother. You can read more about Max at http://julian-family.blogspot.com/. Kelly is one of the most inspiring Christians I have ever met (though technically, I haven't even officially met her in person yet!). Her parents attend the same church we do, and knowing them, I'm not surprised that Kelly is a woman of great faith. I have followed Max's journey since last summer or early fall (not sure exactly when), shortly after he was born. I'm not going to go into details about Max, because I really want you to take the time to read her blog in its entirety. His family's faith will be a blessing to you if you will take the time to read it.
The second mom is Faith, Baby Gavin's mother. You can read more about Gavin at http://gavinparker.blogspot.com/. Faith is also a strong Christian woman! Gavin has HLHS and has gone through two of the three major heart surgeries he faces. I also encourage you to read her blog. Gavin is adorable and I'm sure his courage and smiles speak to the reason health professionals continue to develop and perfect HLHS treatment techniques!
Please pray for both of these babies and their families. They need many of the same prayers we do, in terms of wisdom and strength to face each new day. When I get this blog site figured out completely, I'll make sure I provide a link to their blogs so you can check in on them more easily!
Lisa (a.k.a. Jelly Bean's Mama)
The first is Kelly, Baby Max's mother. You can read more about Max at http://julian-family.blogspot.com/. Kelly is one of the most inspiring Christians I have ever met (though technically, I haven't even officially met her in person yet!). Her parents attend the same church we do, and knowing them, I'm not surprised that Kelly is a woman of great faith. I have followed Max's journey since last summer or early fall (not sure exactly when), shortly after he was born. I'm not going to go into details about Max, because I really want you to take the time to read her blog in its entirety. His family's faith will be a blessing to you if you will take the time to read it.
The second mom is Faith, Baby Gavin's mother. You can read more about Gavin at http://gavinparker.blogspot.com/. Faith is also a strong Christian woman! Gavin has HLHS and has gone through two of the three major heart surgeries he faces. I also encourage you to read her blog. Gavin is adorable and I'm sure his courage and smiles speak to the reason health professionals continue to develop and perfect HLHS treatment techniques!
Please pray for both of these babies and their families. They need many of the same prayers we do, in terms of wisdom and strength to face each new day. When I get this blog site figured out completely, I'll make sure I provide a link to their blogs so you can check in on them more easily!
Lisa (a.k.a. Jelly Bean's Mama)
Thursday, April 12, 2007
Pediatric Cardiologist Appointment Update
We're so happy and blessed to have good news to report from our Vanderbilt pediatric cardiology appt this morning! Your prayers are working!
We spent about 2 hours with Dr. Liske at Vandy this a.m. The first 45 minutes he took pictures. I have to say it was all black, white, and fuzzy to us with the occasional blue and red thrown in, so it boggles the mind how he could see anything. Anyway, then he left to compare our baby's heart measurements to normal babies' measurements and then came back in to chat.
He said Jelly Bean doesn't fit criteria for HLHS at this point. He said there isn't really a name for his condition right now, but he'll refer to it as Borderline HLHS. Jelly Bean has 4 chambers and he has all structures forming in his heart, they just aren't either big enough or complete yet on the left. The chambers and structures on the left side of his heart that aren't big enough yet still fall in the low end of healthy heart measurements. For example, his aortic valve is in the 5th percentile, while his mitral valve is in the 10th percentile. The measurements on the left side of his heart are small compared to the measurements on the right side of his heart. One of two things will happen over the rest of the pg: Either he will develop a full-blown case of HLHS or he will begin to develop a healthier heart.
Let's take the more optimistic scenario first: If his heart begins to grow into a more healthy one, he will likely still have some congential heart defects that need to be fixed either at birth or shortly thereafter. It is highly unlikely his heart will be normal at birth. At this point, we know he is likely to have a Coarctation of the Aorta. This is a minor heart defect (compared to HLHS, anyway) that requires surgery, but not open heart surgery, and can be fixed soon after birth. He also appears to have a hole in his bottom left chamber, referred to as a Ventricular Septal Defect, but Dr. Liske had trouble getting a clear picture of that area, so he couldn't be sure. If the hole is there, it might close on its own as Jelly Bean grows. If not, it will eventually require surgery. There are also problems with his aortic valve and his mitral valve; those problems could resolve during the pg or, if not, they will need to be fixed through heart surgeries.
Worst case scenario, Jelly Bean could develop full-blown HLHS. We discussed treatment options, all of which can be done at Vandy. Heart transplant is an option that we could do at Vandy, too, though we didn't focus on that. We focused on the 3-stage treatment. Accroding to Dr. Liske, Vandy currently has high success rates, right up there with Boston Children's Hospital. The two hospitals that have higher success rates right now (and only by a couple of percentage points) are Univ of Michigan and the children's hospital in Milwuakee. Dr. Liske trained at the University of Michigan and the other cardiologist, Dr. Bichell, who would be on our treatment team trained at Boston Children's. In short, we appear to have excellent treatment options at Vandy, which is such a blessing that we can hardly absorb it. To be able to at least consider staying "in our own back yard" for treatment is so stress-relieving that we are overjoyed.
All that aside, the full-blown HLHS treatment scenario is frightening to any parent. We've encountered many success stories and many tragedies when talking to HLHS parents and reading about HLHS on the internet over the past week. While optimistic and encouraging, Dr. Liske said that the treatment outcomes vary widely depending on the complications encountered as HLHS children go through each surgery. He said they would support whatever decision we reach regarding treatment of HLHS and will offer all the advice, medical information, and comfort we need while we learn more about HLHS and make decisions about Jelly Bean's treatment.
We will see him again at 34 weeks (at the end of June) for more tests to see if we can get a better idea of how Jelly Bean's heart is developing. We won't know more until then, and we may not have a true picture of what JB's heart is like until he is born. So now we watch, wait, seek second opinions, plan, and just move forward while praying for a strong, healthy
heart to develop. The goal is to make it to August 16 without Lisa going into labor. She will deliver via a planned C-section. This was actually the plan even before we were aware of Jelly Bean's heart problems.
We continue to URGENTLY need your prayers, in fact now more than ever, as we enter this period of waiting. For now, we are thrilled to even have a CHANCE at fewer problems than HLHS involves. We believe God is answering our prayers even as we speak. Most of all, we remain steadfastly confident in God's promise to give us the strength we need to face anything life throws at us. Please, continue to pray, pray, pray!!
Updated Prayer Requests:
1. PRAISE that Jelly Bean does not have full-blown HLHS!
2. PRAISE that we can consider treatment at Vanderbilt Children's Hospital.
3. PRAISE that we live in a day and time when so many options are available for treating heart problems.
4. PRAISE that God answered so many prayers for a fast appointment at VCH. Our initial appt was set for 4/19, but they called on 4/11 and offered us a 4/12 appt due to a cancellation on Dr. Liske's schedule.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy. James 5:10-11
We spent about 2 hours with Dr. Liske at Vandy this a.m. The first 45 minutes he took pictures. I have to say it was all black, white, and fuzzy to us with the occasional blue and red thrown in, so it boggles the mind how he could see anything. Anyway, then he left to compare our baby's heart measurements to normal babies' measurements and then came back in to chat.
He said Jelly Bean doesn't fit criteria for HLHS at this point. He said there isn't really a name for his condition right now, but he'll refer to it as Borderline HLHS. Jelly Bean has 4 chambers and he has all structures forming in his heart, they just aren't either big enough or complete yet on the left. The chambers and structures on the left side of his heart that aren't big enough yet still fall in the low end of healthy heart measurements. For example, his aortic valve is in the 5th percentile, while his mitral valve is in the 10th percentile. The measurements on the left side of his heart are small compared to the measurements on the right side of his heart. One of two things will happen over the rest of the pg: Either he will develop a full-blown case of HLHS or he will begin to develop a healthier heart.
Let's take the more optimistic scenario first: If his heart begins to grow into a more healthy one, he will likely still have some congential heart defects that need to be fixed either at birth or shortly thereafter. It is highly unlikely his heart will be normal at birth. At this point, we know he is likely to have a Coarctation of the Aorta. This is a minor heart defect (compared to HLHS, anyway) that requires surgery, but not open heart surgery, and can be fixed soon after birth. He also appears to have a hole in his bottom left chamber, referred to as a Ventricular Septal Defect, but Dr. Liske had trouble getting a clear picture of that area, so he couldn't be sure. If the hole is there, it might close on its own as Jelly Bean grows. If not, it will eventually require surgery. There are also problems with his aortic valve and his mitral valve; those problems could resolve during the pg or, if not, they will need to be fixed through heart surgeries.
Worst case scenario, Jelly Bean could develop full-blown HLHS. We discussed treatment options, all of which can be done at Vandy. Heart transplant is an option that we could do at Vandy, too, though we didn't focus on that. We focused on the 3-stage treatment. Accroding to Dr. Liske, Vandy currently has high success rates, right up there with Boston Children's Hospital. The two hospitals that have higher success rates right now (and only by a couple of percentage points) are Univ of Michigan and the children's hospital in Milwuakee. Dr. Liske trained at the University of Michigan and the other cardiologist, Dr. Bichell, who would be on our treatment team trained at Boston Children's. In short, we appear to have excellent treatment options at Vandy, which is such a blessing that we can hardly absorb it. To be able to at least consider staying "in our own back yard" for treatment is so stress-relieving that we are overjoyed.
All that aside, the full-blown HLHS treatment scenario is frightening to any parent. We've encountered many success stories and many tragedies when talking to HLHS parents and reading about HLHS on the internet over the past week. While optimistic and encouraging, Dr. Liske said that the treatment outcomes vary widely depending on the complications encountered as HLHS children go through each surgery. He said they would support whatever decision we reach regarding treatment of HLHS and will offer all the advice, medical information, and comfort we need while we learn more about HLHS and make decisions about Jelly Bean's treatment.
We will see him again at 34 weeks (at the end of June) for more tests to see if we can get a better idea of how Jelly Bean's heart is developing. We won't know more until then, and we may not have a true picture of what JB's heart is like until he is born. So now we watch, wait, seek second opinions, plan, and just move forward while praying for a strong, healthy
heart to develop. The goal is to make it to August 16 without Lisa going into labor. She will deliver via a planned C-section. This was actually the plan even before we were aware of Jelly Bean's heart problems.
We continue to URGENTLY need your prayers, in fact now more than ever, as we enter this period of waiting. For now, we are thrilled to even have a CHANCE at fewer problems than HLHS involves. We believe God is answering our prayers even as we speak. Most of all, we remain steadfastly confident in God's promise to give us the strength we need to face anything life throws at us. Please, continue to pray, pray, pray!!
Updated Prayer Requests:
1. PRAISE that Jelly Bean does not have full-blown HLHS!
2. PRAISE that we can consider treatment at Vanderbilt Children's Hospital.
3. PRAISE that we live in a day and time when so many options are available for treating heart problems.
4. PRAISE that God answered so many prayers for a fast appointment at VCH. Our initial appt was set for 4/19, but they called on 4/11 and offered us a 4/12 appt due to a cancellation on Dr. Liske's schedule.
5. For complete healing for our son during this pregnancy (we will ask for the moon since God made it anyway!).
6. For strength, guidance, and wisdom as we face treatment choices and decisions.
7. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
8. For God to show us the way financially so we can provide the best medical care for our son.
9. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy. James 5:10-11
Wednesday, April 11, 2007
April 8, 2007: Sharing the News of Possible HLHS
We had our 20 week ultrasound on Jelly Bean this past Tuesday and found out that we are being blessed with a baby boy!
A high-risk obstetrician we saw later the same day has tentatively diagnosed our son with a congenital heart defect. It is called Hypoplastic Left Heart Syndrome (HLHS). It is not genetic, not related to our ages, and not related to anything the baby was exposed to due to Lisa’s gall bladder surgery. It's just one of those conditions you pray you aren’t faced with as a parent. Essentially, the left side of our son’s heart is not developing as it should. It is a fatal condition if left untreated. Currently, the number of hospitals that can treat this condition with proficiency are limited. Depending on the severity of our baby's condition and whether there are other problems present, we will need to decide whether to treat him with three surgeries before the age of 3 or a heart transplant. In some severe cases, the three surgeries and a transplant are required over the course of a child’s life. Our next step on this journey is to meet with a pediatric cardiologist at Vanderbilt Children's Hospital to get confirmation of this diagnosis. This appointment should take place in the next couple of weeks.
We are doing as well as we could be under the circumstances, but we are also quite overwhelmed at the moment. As many of you know, Bill and I are both professional caregivers in our roles as mental health counselors, and we now find ourselves in great need of some TLC ourselves. However, our most immediate need is for prayer. We would ask that you place our family on your prayer list and “pray without ceasing.” We also ask that you add us to any Bible class, Bible study, or other church’s prayer list that you, your friends, or family members might be a part of. Our first priority is that our family be “covered in prayer” right now.
Our immediate prayer requests include:
1. PRAISE to God that we are expecting this child. Because we know that all situations can bring glory to God, we know that this situation will ultimately be a blessing to our family, our friends, our church, our care providers, and our community regardless of what happens. We’re just not sure what form that blessing will take yet.
2. PRAISE to God that our son has all four chambers of his heart, and blood is passing through all four chambers. Some children with this condition only have two or three chambers.
3. For complete healing for our son during this pregnancy (we are asking for the moon since God made it anyway!).
4. For an appointment with the pediatric cardiologist at Vanderbilt Children’s very soon.
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
A high-risk obstetrician we saw later the same day has tentatively diagnosed our son with a congenital heart defect. It is called Hypoplastic Left Heart Syndrome (HLHS). It is not genetic, not related to our ages, and not related to anything the baby was exposed to due to Lisa’s gall bladder surgery. It's just one of those conditions you pray you aren’t faced with as a parent. Essentially, the left side of our son’s heart is not developing as it should. It is a fatal condition if left untreated. Currently, the number of hospitals that can treat this condition with proficiency are limited. Depending on the severity of our baby's condition and whether there are other problems present, we will need to decide whether to treat him with three surgeries before the age of 3 or a heart transplant. In some severe cases, the three surgeries and a transplant are required over the course of a child’s life. Our next step on this journey is to meet with a pediatric cardiologist at Vanderbilt Children's Hospital to get confirmation of this diagnosis. This appointment should take place in the next couple of weeks.
We are doing as well as we could be under the circumstances, but we are also quite overwhelmed at the moment. As many of you know, Bill and I are both professional caregivers in our roles as mental health counselors, and we now find ourselves in great need of some TLC ourselves. However, our most immediate need is for prayer. We would ask that you place our family on your prayer list and “pray without ceasing.” We also ask that you add us to any Bible class, Bible study, or other church’s prayer list that you, your friends, or family members might be a part of. Our first priority is that our family be “covered in prayer” right now.
Our immediate prayer requests include:
1. PRAISE to God that we are expecting this child. Because we know that all situations can bring glory to God, we know that this situation will ultimately be a blessing to our family, our friends, our church, our care providers, and our community regardless of what happens. We’re just not sure what form that blessing will take yet.
2. PRAISE to God that our son has all four chambers of his heart, and blood is passing through all four chambers. Some children with this condition only have two or three chambers.
3. For complete healing for our son during this pregnancy (we are asking for the moon since God made it anyway!).
4. For an appointment with the pediatric cardiologist at Vanderbilt Children’s very soon.
5. For strength, guidance, and wisdom as we face treatment choices and decisions.
6. For good physical health and restful sleep for Bill and Lisa as we absorb this news and make decisions.
7. For God to show us the way financially so we can provide the best medical care for our son.
8. For the strength to let this child go home to God if it becomes obvious that this is God’s answer to our prayers.
And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
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