Tricia updated her blog today. Check It Out!
Nate
Showing posts with label 65Roses4Pattysue. Show all posts
Showing posts with label 65Roses4Pattysue. Show all posts
Wednesday, June 18, 2008
Sunday, June 15, 2008
Dads
I believe that, perhaps, the most influential factor of being a great dad is having a great dad. Fortunately, I have had 27 years of that kind of influence.
I'm pretty sure that Tricia has been just as fortunate.
Thanks to everyone who has/is wishing me a happy first father's day! I really appreciate it! Make sure you check out Tricia's Blog Post from early this morning.
Thanks!
Nate
I'm pretty sure that Tricia has been just as fortunate.
Thanks to everyone who has/is wishing me a happy first father's day! I really appreciate it! Make sure you check out Tricia's Blog Post from early this morning.
Thanks!
Nate
Friday, June 6, 2008
Thursday, May 29, 2008
Trust Fund
I think many of you misunderstood me (from reading the comments) when I said in my last post, "And, because I know people will ask, no, we won't use Tricia's trust fund to help buy a house"...nobody had asked, and nobody has tried to tell us how to handle the trust fund except for the people who manage the trust fund for us (called, go figure, "trustees"), In fact, the trust fund itself dictates what it can be used for (and for very good ethical and legal reasons). I specifically mentioned it in my last post because I knew somebody would ask, "Can't you use the trust fund for a house?"
Please, please, please, don't assume things. Again, you only see a small part of the big picture...if, for example, you had any idea how much Tricia's transplant meds are going to cost over the rest of her lifetime, you'd be incredibly unassuming about my last post. The trust fund is accomplishing it's purpose...providing financial support for Tricia Medical Needs Only. I can't use it for anything I want, even if I did want to. I suppose we could find a loophole for a house, but that wouldn't be helpful for us.
I honestly don't know why I even try sometimes...my last post should have simply said, "We're looking to buy a house on the OBX, thanks for your prayers." If I give just a few details about something, people misunderstand and assume crazy stuff...if I give every detail I can think of, the same thing happens. GRRRRR...
I think I know how Duncan Donuts and Rachel Ray might feel today...
And, while we really appreciate the thought, we won't allow anyone to give to us to buy a house. If you're really that zealous about giving, please, consider donating to the Cystic Fibrosis Foundation or by donating In These Ways I've Mentioned.
Thanks!
Nate
Please, please, please, don't assume things. Again, you only see a small part of the big picture...if, for example, you had any idea how much Tricia's transplant meds are going to cost over the rest of her lifetime, you'd be incredibly unassuming about my last post. The trust fund is accomplishing it's purpose...providing financial support for Tricia Medical Needs Only. I can't use it for anything I want, even if I did want to. I suppose we could find a loophole for a house, but that wouldn't be helpful for us.
I honestly don't know why I even try sometimes...my last post should have simply said, "We're looking to buy a house on the OBX, thanks for your prayers." If I give just a few details about something, people misunderstand and assume crazy stuff...if I give every detail I can think of, the same thing happens. GRRRRR...
I think I know how Duncan Donuts and Rachel Ray might feel today...
And, while we really appreciate the thought, we won't allow anyone to give to us to buy a house. If you're really that zealous about giving, please, consider donating to the Cystic Fibrosis Foundation or by donating In These Ways I've Mentioned.
Thanks!
Nate
Wednesday, May 21, 2008
Answers
Wow! You people really know how to ask some questions.
There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.
I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.
To make it easier, I split these up into categories.
Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.
Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!
Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).
Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.
Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.
Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.
I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.
Thanks!
Nate
There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.
I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.
To make it easier, I split these up into categories.
Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.
Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!
Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).
Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.
Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.
Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.
I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.
Thanks!
Nate
Sunday, March 16, 2008
(Bump) Your Offer to Help
(I'm bumping this only because several have left comments the past few days asking how they can help)
We are so thankful for the incredible amount of tangible support that is streaming in right now from all over the world. I would not mention this except that so many people have been asking...if you would like to do something to practically help us, here are a few opportunities:
> Send Tricia and Gwyneth an ECard. These have already been coming in. You send an email message to Duke, and they print them off (one per page) and bring them to our room. You can make a huge statement about Tricia's miracle and get even more people involved with your messages. Use "7800" for their room number.
> Send a card or package. Ask for our address by sending me an Email.
> Consider becoming a member of "Team Patty Sue" by financially donating to Tricia's Trust Fund. All moneys donated go directly into helping finance everything involving Tricia's CF (including the pregnancy/premature care). This trust fund is a few years old, and we are literally debt free so far because of the donations of hundreds of friends, family and loving strangers.
> (This is the best option, IMO) Take a few minutes to visit my Great Strides Home Page and consider either donating or signing up and becoming a member of our team and helping me reach my personal goal of $10,000 by Sept. 13, 2008. Every dollar raised here will go directly to CF research.
Some things that we ask you NOT to do:
> DON'T send flowers/plants. Neither Tricia or Gwyneth can have any flowers in their rooms, and I only spend sleeping hours at our hotel, so nobody would be able to enjoy them.
> DON'T send stuffed animals/toys. Stuffed animals/toys are a great breeding ground for dust and germs. Tricia's CF and upcoming double lung transplant will not allow us to have many of these things in our lives.
> Don't send live animals or spiders. That's just silly.
Thanks!
Nate
We are so thankful for the incredible amount of tangible support that is streaming in right now from all over the world. I would not mention this except that so many people have been asking...if you would like to do something to practically help us, here are a few opportunities:
> Send Tricia and Gwyneth an ECard. These have already been coming in. You send an email message to Duke, and they print them off (one per page) and bring them to our room. You can make a huge statement about Tricia's miracle and get even more people involved with your messages. Use "7800" for their room number.
> Send a card or package. Ask for our address by sending me an Email.
> Consider becoming a member of "Team Patty Sue" by financially donating to Tricia's Trust Fund. All moneys donated go directly into helping finance everything involving Tricia's CF (including the pregnancy/premature care). This trust fund is a few years old, and we are literally debt free so far because of the donations of hundreds of friends, family and loving strangers.
> (This is the best option, IMO) Take a few minutes to visit my Great Strides Home Page and consider either donating or signing up and becoming a member of our team and helping me reach my personal goal of $10,000 by Sept. 13, 2008. Every dollar raised here will go directly to CF research.
Some things that we ask you NOT to do:
> DON'T send flowers/plants. Neither Tricia or Gwyneth can have any flowers in their rooms, and I only spend sleeping hours at our hotel, so nobody would be able to enjoy them.
> DON'T send stuffed animals/toys. Stuffed animals/toys are a great breeding ground for dust and germs. Tricia's CF and upcoming double lung transplant will not allow us to have many of these things in our lives.
> Don't send live animals or spiders. That's just silly.
Thanks!
Nate
Friday, March 14, 2008
Just To Be Clear (About the Last Post)
Donating to my Great Strides Fund goes directly to CFF and is completely different from Tricia's Trust Fund, which helps us personally.
Thanks!
Nate
Thanks!
Nate
30,000
That's the number of people who suffer from Cystic Fibrosis in the US alone. Most of them are children and young adults.
GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fund-raising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. Every penny raised by Great Strides goes directly into funding research for better drugs and treatments. Every day that passes by means one day closer to the cure.
In 2007, more than $34 million was raised to support vital CF programs.
The goal for 2008 is $40 million.
Last September, Tricia and I helped organize the first ever Great Strides Walk on the OBX, raising over $30,000 with the help of a few hundred of our friends. Although our time here in Durham is limiting our ability to help much in the organization of this year's walk, we are looking forward to being there at 9am on September 13, 2008 at Dare County Family Recreation Park in Kill Devil Hills, NC.
We can all make a difference and help improve and save the lives of thousands, if not millions of people. Please, take a few minutes to visit my Great Strides Home Page and consider either donating or signing up and becoming an official member of Team PattySue and helping me reach my personal goal of $10,000. If every person who visits this blog every day would only donate one dollar, I would more than double my personal goal.
And, consider coming and walking with us, or Finding A Walk Near You.
You could walk for Seth in Elizabeth City on September 13.
You could walk for Lori in Chesapeake, VA on April 19.
Or, you could walk in honor of Tricia, Eva, Alice or somebody you know.
I want Gwyneth Rose to grow up with her mother alive and well. With your help, we can give both of my girls that opportunity.
Thanks!
Nate
GREAT STRIDES: Taking Steps to Cure Cystic Fibrosis is the Cystic Fibrosis Foundation's largest national fund-raising event. Tens of thousands of co-workers, friends and family come together each year as one community for one cause…to help find a cure for CF. Every penny raised by Great Strides goes directly into funding research for better drugs and treatments. Every day that passes by means one day closer to the cure.
In 2007, more than $34 million was raised to support vital CF programs.
The goal for 2008 is $40 million.
Last September, Tricia and I helped organize the first ever Great Strides Walk on the OBX, raising over $30,000 with the help of a few hundred of our friends. Although our time here in Durham is limiting our ability to help much in the organization of this year's walk, we are looking forward to being there at 9am on September 13, 2008 at Dare County Family Recreation Park in Kill Devil Hills, NC.
We can all make a difference and help improve and save the lives of thousands, if not millions of people. Please, take a few minutes to visit my Great Strides Home Page and consider either donating or signing up and becoming an official member of Team PattySue and helping me reach my personal goal of $10,000. If every person who visits this blog every day would only donate one dollar, I would more than double my personal goal.
And, consider coming and walking with us, or Finding A Walk Near You.
You could walk for Seth in Elizabeth City on September 13.
You could walk for Lori in Chesapeake, VA on April 19.
Or, you could walk in honor of Tricia, Eva, Alice or somebody you know.
I want Gwyneth Rose to grow up with her mother alive and well. With your help, we can give both of my girls that opportunity.
Thanks!
Nate
Tuesday, February 26, 2008
A Good Question
So, I was asked a few days ago (by a family who is facing a medical crisis):
1) How are you able to be in Duke with your girls full-time?
The simple answer is that I've been blessed with a job/career that can cater to our current situation.
When I was going through the interview process shortly before taking my current job as a "worship leader" at Nags Head Church almost two years ago, I explained to the pastors (five of them) that something like our current situation at Duke may come up in the near future. I was actually thinking just about transplantation and not about a premature baby. The pastors agreed that the church would support us if this kind of situation arose.
Last summer, after we learned that Tricia was a candidate for a transplant and we began making plans to relocate to Durham, I sat down with our pastors again and shared what the plan was...at that time, we did not yet know that Tricia was pregnant. Our original expectation (pre-pregnancy) was that we would move to Durham in early September, be listed and activated in late September, and probably be transplanted and home by Christmas. I planned on working as much as possible while away (I do a lot just on my computer), and I began preparing the people that I lead in ministry at the church to carry on without me (which they've all done with excellence).
Of course, the expected four month stay has turned into almost six months and will not be completely over for at least another two months. I haven't accomplished nearly as much work as I had originally planned, especially in the past two months, but the church and pastors have been incredibly supportive and flexible. Although all of the details haven't been worked out, I'm sure I've used up all of my vacation and sabbatical days for the next 30 years... :)
The amazing thing is that, either partly because of what God is doing in our lives, or maybe because I'm more of a Jonah than a David, the church has been experiencing some incredible things over the past few months that can truly only be attributed to God's hand of blessing. The church is growing and flourishing and being blessed in so many amazing ways...we truly miss being home and being a part of what's going on at NHC.
2) How are your medical bills being taken care of?
The simple answer is that we have no idea other than that God continues to bless us in extraordinary ways.
Tricia's yearly medical bill over the past few years is astronomical. She has spent an average of about 20 days per year in the hospital over the past three + years. We have a very high deductible, which we have met before the end of January every year. Our biggest out-of-pocket expense has been her medications and equipment.
The total cost of an average double lung transplant at Duke is somewhere in the ballpark of $300,000.
I honestly have no clue what is going on with Gwyneth's medical bills, but quite honestly, that's the least of our concerns at the moment, and we know that God will take care of us.
We have incredible health insurance (you get what you pay for)...it would take an entire blog post to share the miracle of how we we have been blessed with good, secure insurance. One of the biggest reasons that many people are turned away from being admitted into a transplant center is the inability to pay for the medical bills due to lack of insurance. Our insurance is paying for nearly every penny of Tricia's transplant, as well as several thousand dollars of our housing costs during the transplant process.
Through God's grace, my parents had the wisdom to set up a Trust Fund for Tricia about two years ago to help with her medical bills. Hundreds of family, friends and total strangers have donated to help us, for which we are incredibly grateful. This trust fund can help to cover the cost of meds, equipment, travel expenses, housing, and any other expenses related to Tricia's medical care. The trust fund does NOT cover any of Gwyneth's medical expenses or any personal finances. (If anyone is seriously interested in finding out more info about the legalities of starting a trust fund, you can email me your questions)
About a year ago, after more than one attempt, Tricia was finally accepted for Social Security Disability Isurance. It's not a pot of gold by any means, but it does help.
Also, both Tricia and Gwyneth are now receiving Medicaid benefits, which is very helpful at the drug store, especially.
I'm sure that there are even more ways to secure financial help for medical needs. The key is contacting and befriending the people who know. One of the best places to start is with a medical social worker.
I have no idea if any of this info will be helpful...I hope it is. You can ask me more questions about this stuff, but I'm not sure that I can give you much more info.
Thanks.
Nate
1) How are you able to be in Duke with your girls full-time?
The simple answer is that I've been blessed with a job/career that can cater to our current situation.
When I was going through the interview process shortly before taking my current job as a "worship leader" at Nags Head Church almost two years ago, I explained to the pastors (five of them) that something like our current situation at Duke may come up in the near future. I was actually thinking just about transplantation and not about a premature baby. The pastors agreed that the church would support us if this kind of situation arose.
Last summer, after we learned that Tricia was a candidate for a transplant and we began making plans to relocate to Durham, I sat down with our pastors again and shared what the plan was...at that time, we did not yet know that Tricia was pregnant. Our original expectation (pre-pregnancy) was that we would move to Durham in early September, be listed and activated in late September, and probably be transplanted and home by Christmas. I planned on working as much as possible while away (I do a lot just on my computer), and I began preparing the people that I lead in ministry at the church to carry on without me (which they've all done with excellence).
Of course, the expected four month stay has turned into almost six months and will not be completely over for at least another two months. I haven't accomplished nearly as much work as I had originally planned, especially in the past two months, but the church and pastors have been incredibly supportive and flexible. Although all of the details haven't been worked out, I'm sure I've used up all of my vacation and sabbatical days for the next 30 years... :)
The amazing thing is that, either partly because of what God is doing in our lives, or maybe because I'm more of a Jonah than a David, the church has been experiencing some incredible things over the past few months that can truly only be attributed to God's hand of blessing. The church is growing and flourishing and being blessed in so many amazing ways...we truly miss being home and being a part of what's going on at NHC.
2) How are your medical bills being taken care of?
The simple answer is that we have no idea other than that God continues to bless us in extraordinary ways.
Tricia's yearly medical bill over the past few years is astronomical. She has spent an average of about 20 days per year in the hospital over the past three + years. We have a very high deductible, which we have met before the end of January every year. Our biggest out-of-pocket expense has been her medications and equipment.
The total cost of an average double lung transplant at Duke is somewhere in the ballpark of $300,000.
I honestly have no clue what is going on with Gwyneth's medical bills, but quite honestly, that's the least of our concerns at the moment, and we know that God will take care of us.
We have incredible health insurance (you get what you pay for)...it would take an entire blog post to share the miracle of how we we have been blessed with good, secure insurance. One of the biggest reasons that many people are turned away from being admitted into a transplant center is the inability to pay for the medical bills due to lack of insurance. Our insurance is paying for nearly every penny of Tricia's transplant, as well as several thousand dollars of our housing costs during the transplant process.
Through God's grace, my parents had the wisdom to set up a Trust Fund for Tricia about two years ago to help with her medical bills. Hundreds of family, friends and total strangers have donated to help us, for which we are incredibly grateful. This trust fund can help to cover the cost of meds, equipment, travel expenses, housing, and any other expenses related to Tricia's medical care. The trust fund does NOT cover any of Gwyneth's medical expenses or any personal finances. (If anyone is seriously interested in finding out more info about the legalities of starting a trust fund, you can email me your questions)
About a year ago, after more than one attempt, Tricia was finally accepted for Social Security Disability Isurance. It's not a pot of gold by any means, but it does help.
Also, both Tricia and Gwyneth are now receiving Medicaid benefits, which is very helpful at the drug store, especially.
I'm sure that there are even more ways to secure financial help for medical needs. The key is contacting and befriending the people who know. One of the best places to start is with a medical social worker.
I have no idea if any of this info will be helpful...I hope it is. You can ask me more questions about this stuff, but I'm not sure that I can give you much more info.
Thanks.
Nate
Sunday, February 24, 2008
(Bump) Marathon
The marathon is taking place this morning!
Those of you who have been with us for a while might remember This Post from about 6 weeks ago.
Kelly Byrd is running the New Orleans Mardis Gras Marathon tomorrow (Sunday, Feb 24, 2008) with her friend, Patty Sue in honor of Tricia. She has been raising money for Tricia's Trust Fund for the past several weeks.
Here's what she had to say about the race...
If you would be so kind…can you pray for me and my Patty Sue (running partner) on Sat night? Typically we pray for a little pain and a lot of fun! Doesn’t usually happen but I’ll take all the help I can get! I got really sick last week and unfortunately my lungs took a beating from an infection. I couldn’t run all last week which is tough this close to the race.
The race starts Sunday at 7am. It normally takes me about 5 hours to run a marathon. I’m no Kenyan! It looks like the weather is going to be in the 70’s which is ok. 50’s would be better but I’m not complaining.
Please, join me in praying for and thinking about Kelly and Patty Sue today and tomorrow morning. We're excited to hear a report from her about the race!
You've all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You're after one that's gold eternally.
Those of you who have been with us for a while might remember This Post from about 6 weeks ago.
Kelly Byrd is running the New Orleans Mardis Gras Marathon tomorrow (Sunday, Feb 24, 2008) with her friend, Patty Sue in honor of Tricia. She has been raising money for Tricia's Trust Fund for the past several weeks.
Here's what she had to say about the race...
If you would be so kind…can you pray for me and my Patty Sue (running partner) on Sat night? Typically we pray for a little pain and a lot of fun! Doesn’t usually happen but I’ll take all the help I can get! I got really sick last week and unfortunately my lungs took a beating from an infection. I couldn’t run all last week which is tough this close to the race.
The race starts Sunday at 7am. It normally takes me about 5 hours to run a marathon. I’m no Kenyan! It looks like the weather is going to be in the 70’s which is ok. 50’s would be better but I’m not complaining.
Please, join me in praying for and thinking about Kelly and Patty Sue today and tomorrow morning. We're excited to hear a report from her about the race!
You've all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You're after one that's gold eternally.
I don't know about you, but I'm running hard for the finish line. I'm giving it everything I've got. No sloppy living for me! I'm staying alert and in top condition. I'm not going to get caught napping, telling everyone else all about it and then missing out myself.
(I Corinthians 9: 24-27)
Run a good race, Kelly!
Tuesday, February 5, 2008
(Bump) The Purpose Of This Blog
(I thought this need a friendly bump)
(I'm just warning you that you may be tempted to be offended by the following post...I'm posting this, not because I have been concerned about the present situation of this blog, but because I'm concerned about the future of this blog)
When I set out "way back" on September 5, 2007 to journal this adventure, I was hoping that I'd have an audience of more than my parents and sister-in-laws...it's been amazing watching God use our story through this blog to do so many amazing things. To help keep this blog going in the right direction, let me share a few thoughts. When I began, I had four primary purposes for this blog:
1) To have an outlet to "journal" my thoughts and feelings related to being a caregiver of a CF (and future transplant) patient.
2) To give our families and friends an easy way to keep informed about Tricia's journey with CF/Lung Transplantation.
3) To raise awareness for CF and Organ Donation/Transplantation (and now Premature Birth).
4) To give present/future CF/Transplant caregivers and patients (and now preemie families) one more resource to turn to.
I had know idea that the blog would grow to be so big. I remember just several weeks ago when I was excited when I had more than 50 hits in one day... And, with the growth has come a greater opportunity (and in my opinion, responsibility) to fulfill those purposes.
So, when I read questions about these topics, whether personal or general, I realize that this blog is fulfilling it's purpose, and I am more than happy to answer and/or point in the right direction. As I've mentioned a few times, Tricia and I feel that it would be incredibly selfish for us to have gone through this journey, no matter the final outcome, without, at least, offering to share our experiences with others.
In comparison, here are a few things that do not fit the primary purpose of this blog:
1) This blog is not a place for debate. You can like what I have to say or not, but either way, I won't let you debate or criticize me or any other person who comments about any issue. I've deleted several posts (mostly from those who think they're agreeing with me) that I've found to be offensive to either me or others who might be reading. I do my best to simply convey our story through my eyes and heart and mind without preaching about anything, and I expect the same from those who wish to comment. I welcome constructive conversations, but ultimately, I'm the one who gets to choose what that looks and reads like.
2) This blog is not a place for soliciting personal financial support. The only time I have ever posted about how anyone can help us (with gifts, donations, etc.) is when I've been bombarded with requests to do so. We are blown away by the love of both close friends and total strangers, and we can't begin to express our appreciation, but it is not something that we have ever expected or felt entitled to. You will read me asking you to help us support CFF, UNOS and The March Of Dimes, but those requests are just as much about the millions of others like us as they are about us.
3) This blog is not a place for unsolicited advice. I say this with lots of love. While I appreciate the care and concern that I have felt from people as I read the comments (and some of those comments have been very helpful), I also realize that, as you become more familiar and comfortable with us and our story, you'll also begin to feel more comfortable with advising us on how you think we should be doing things. Again, I appreciate the suggestions, especially when they come from experience, but, please, think carefully first and realize that we're only sharing with you a small portion of what's going on. When I really want some input on something, especially related to care-giving, I promise to ask you.
4) This blog is not reality TV. This blog is an exact (although not nearly thorough) account of what is really happening with our lives, sans scripts, props or writers strikes. Again, I can't tell you how encouraged Tricia and I and our families and friends have been by watching how people have embraced what God is doing in our lives. The comments and emails and cards and gifts and other blogs (linking to ours) are all the highlight of my day, and I will forever be grateful. But, with as much as we have been willing and able to be open and transparent over the past few months, we also expect to have the same amount of privacy and respect that you would expect for your family. Please, think twice before you ask an incredibly personal question, before you demand the next update, before you beg to see the latest pictures, or before you...
Finally, this post is not meant to:
1) Scare you from commenting.
2) Scare you from praying and thinking about us.
3) Scare you from caring about us and the things we care about.
4) Scare you from encouraging us and others who are reading.
5) Scare you from being "addicted" to our story.
7) Scare you from telling us your stories.
8) Scare you from emailing me.
9) Scare you from offering to come and visit (PLEASE, call or email FIRST, and DON'T be offended if we say no).
10) Scare you from praying for poop.
Thanks!
Nate
PS. I've posted this with a smile on my face and love in my heart (I know, it sounds cheesy). But, I'm disabling comments under this post because I know that many of you will either be tempted to empathize with me, be tempted to apologize for some perceived offense, be tempted to defend yourself from some perceived offense, or be tempted to tell me I'm an idiot and that you're never coming back, none of which needs to be said (or emailed!!!).
(I'm just warning you that you may be tempted to be offended by the following post...I'm posting this, not because I have been concerned about the present situation of this blog, but because I'm concerned about the future of this blog)
When I set out "way back" on September 5, 2007 to journal this adventure, I was hoping that I'd have an audience of more than my parents and sister-in-laws...it's been amazing watching God use our story through this blog to do so many amazing things. To help keep this blog going in the right direction, let me share a few thoughts. When I began, I had four primary purposes for this blog:
1) To have an outlet to "journal" my thoughts and feelings related to being a caregiver of a CF (and future transplant) patient.
2) To give our families and friends an easy way to keep informed about Tricia's journey with CF/Lung Transplantation.
3) To raise awareness for CF and Organ Donation/Transplantation (and now Premature Birth).
4) To give present/future CF/Transplant caregivers and patients (and now preemie families) one more resource to turn to.
I had know idea that the blog would grow to be so big. I remember just several weeks ago when I was excited when I had more than 50 hits in one day... And, with the growth has come a greater opportunity (and in my opinion, responsibility) to fulfill those purposes.
So, when I read questions about these topics, whether personal or general, I realize that this blog is fulfilling it's purpose, and I am more than happy to answer and/or point in the right direction. As I've mentioned a few times, Tricia and I feel that it would be incredibly selfish for us to have gone through this journey, no matter the final outcome, without, at least, offering to share our experiences with others.
In comparison, here are a few things that do not fit the primary purpose of this blog:
1) This blog is not a place for debate. You can like what I have to say or not, but either way, I won't let you debate or criticize me or any other person who comments about any issue. I've deleted several posts (mostly from those who think they're agreeing with me) that I've found to be offensive to either me or others who might be reading. I do my best to simply convey our story through my eyes and heart and mind without preaching about anything, and I expect the same from those who wish to comment. I welcome constructive conversations, but ultimately, I'm the one who gets to choose what that looks and reads like.
2) This blog is not a place for soliciting personal financial support. The only time I have ever posted about how anyone can help us (with gifts, donations, etc.) is when I've been bombarded with requests to do so. We are blown away by the love of both close friends and total strangers, and we can't begin to express our appreciation, but it is not something that we have ever expected or felt entitled to. You will read me asking you to help us support CFF, UNOS and The March Of Dimes, but those requests are just as much about the millions of others like us as they are about us.
3) This blog is not a place for unsolicited advice. I say this with lots of love. While I appreciate the care and concern that I have felt from people as I read the comments (and some of those comments have been very helpful), I also realize that, as you become more familiar and comfortable with us and our story, you'll also begin to feel more comfortable with advising us on how you think we should be doing things. Again, I appreciate the suggestions, especially when they come from experience, but, please, think carefully first and realize that we're only sharing with you a small portion of what's going on. When I really want some input on something, especially related to care-giving, I promise to ask you.
4) This blog is not reality TV. This blog is an exact (although not nearly thorough) account of what is really happening with our lives, sans scripts, props or writers strikes. Again, I can't tell you how encouraged Tricia and I and our families and friends have been by watching how people have embraced what God is doing in our lives. The comments and emails and cards and gifts and other blogs (linking to ours) are all the highlight of my day, and I will forever be grateful. But, with as much as we have been willing and able to be open and transparent over the past few months, we also expect to have the same amount of privacy and respect that you would expect for your family. Please, think twice before you ask an incredibly personal question, before you demand the next update, before you beg to see the latest pictures, or before you...
Finally, this post is not meant to:
1) Scare you from commenting.
2) Scare you from praying and thinking about us.
3) Scare you from caring about us and the things we care about.
4) Scare you from encouraging us and others who are reading.
5) Scare you from being "addicted" to our story.
7) Scare you from telling us your stories.
8) Scare you from emailing me.
9) Scare you from offering to come and visit (PLEASE, call or email FIRST, and DON'T be offended if we say no).
10) Scare you from praying for poop.
Thanks!
Nate
PS. I've posted this with a smile on my face and love in my heart (I know, it sounds cheesy). But, I'm disabling comments under this post because I know that many of you will either be tempted to empathize with me, be tempted to apologize for some perceived offense, be tempted to defend yourself from some perceived offense, or be tempted to tell me I'm an idiot and that you're never coming back, none of which needs to be said (or emailed!!!).
Friday, February 1, 2008
Update and Q&A
Gwyneth Rose is, in the words of one of her nurses, "Eating and pooping like a champ." She'll receive just a few drops of breast milk every 6 hours for about 5 days (she's on day 3, I think), and then they'll reassess and hopefully begin giving her a little more. She's on the lowest settings on the vent, and they should be moving her to the CPAP soon.
Also, she is gaining weight and is actually now above her birth weight for the first time! She's about 1lb 6.5oz. Yeah!!!
Tricia has been having some up and down days since moving out of the ICU. Her docs will not allow her to go see Gwyneth (it's been since last Saturday night), which is something she's having a hard time with, but something that she's trying to understand. She is also still very weak and has not been able to do as much PT as she was doing last weekend, which means she hasn't spent as much time outside of her room as she'd like.
She really needs to gain some weight...weight and strength will be two things she'll need going into transplant surgery that will help her during post-surgery rehabilitation. (I'll post a lot more about the transplant stuff tomorrow)
Tricia is spending most of her time focusing on breathing and on physical therapy. We have lots of books and magazines and games and tv to keep her busy, but she hasn't messed with much of it...it's amazing to me how much time and effort she is putting into getting as healthy as she can.
I've posted a lot in the past few days, an I'll probably be posting a lot in the next few days...the transplant activation could be upon us shortly, and there is a lot that I've been meaning to say that I want to get in before she's activated.
I want you to know that I've read every comment that has been written on this blog (over 9000 of them). Just an observation...I find amusing the comments that start our with, "I'm speechless/I have nothing left to say" and then go on to say more (usually lots more). I'm not being critical...I seriously think that's funny.
Please, know that, while I appreciate all of the encouraging emails that are coming our way, I DO NOT open Forwards...they're just too dangerous on several different levels. I've received several forwards from our blog readers, and I'm sure most of them are great emails, but I just send them to the trash. I'm sorry.
Time for some Q&A:
> While Gwyneth is just now getting some serious breast milk, she has been "feeding" via liquid IV, full of all of the nutrients, etc. that her little body needs. This is the big reason why she has stayed healthy without much growth over her first three weeks. With the breast milk, she is being fed via a feeding tube down her throat.
> You can buy all the baby clothes you want, but we'd prefer that you only send us something if you've taken the time to send me an email to get our address, and even then, I may tell you that we have all that we need for the time being.
> We're working on getting a PayPal account up and running for Tricia's Trust Fund (as several people have inquired about this).
> Feel free to link us and/or post about us on your blog...we appreciate all the help we can get! But, if you're going to mention our story in any kind of publication, please make sure that you get our expressed permission first.
> I'm not sure if grandparents can do the Kangaroo Care in the NICU at this point. Tricia remains on "contact isolation", which means she can't have any physical contact with Gwyneth...this will probably last until after the transplant surgery. I have promised Tricia that nobody else but me will have this opportunity until she is able to join me...it was bad enough that she was about the last person on earth to know of and see pictures of her own baby. :)
> We are planning on using some simple sign language to teach Gwyneth to communicate with us when she is young (and before she can speak). You can read more about this technique Here.
> Tricia has had a feeding tube for about a year. It has helped tremendously with her weight issues (CF patients are usually very thin), and she would recommend it to any CF patient who is struggling with their weight.
> Somebody commented, "My sympathies at the loss of your wife and daughter." Just to make sure, they're not dead. :)
> There are a few different types of ways to test for CF, and there are many different mutations of the gene among carriers which can require multiple screenings to detect. Gwyneth's only test so far has been a blood test that is not completely reliable. The standard for testing among infants is the Sweat Test, and Gwyneth is not sweating yet. I was screened via a blood lab before we were married to discover if I am a carrier of the CF gene, which I'm not, which is why we are not concerned about Gwyneth's possible status as a CFer.
> They say that you can set a goal to have your preemie out of the NICU sometime around their original (40 week) due date. If the preemie does extremely well, their time in the NICU can be cut short, and if there are complications, you can expect a longer stay.
Finally, here are a few thoughts that ran through my head as I was holding Gwyneth last night:
> My heartbeat is the first she's heard in over three weeks...the first since she last heard her mother's...
> Gwyneth is much smaller than my pug (a toy breed) was when we first got her... Below is a picture of me holding Meka the pug when we brought her home when she was just 8 weeks old...above a picture of me holding Gwyneth when she was just over 27 weeks old (gestational). I am in no way comparing my daughter with a dog...just trying to show you exactly how small Gwyneth really is.
> Although I would have preferred to share this moment with Tricia, my second choice was my mom...as I held my baby for the first time, she told me about my birth almost 27 years ago. That was special. Thanks, mom!
> Why God is blessing me in this way is beyond my comprehension.
Nate
Also, she is gaining weight and is actually now above her birth weight for the first time! She's about 1lb 6.5oz. Yeah!!!
Tricia has been having some up and down days since moving out of the ICU. Her docs will not allow her to go see Gwyneth (it's been since last Saturday night), which is something she's having a hard time with, but something that she's trying to understand. She is also still very weak and has not been able to do as much PT as she was doing last weekend, which means she hasn't spent as much time outside of her room as she'd like.
She really needs to gain some weight...weight and strength will be two things she'll need going into transplant surgery that will help her during post-surgery rehabilitation. (I'll post a lot more about the transplant stuff tomorrow)
Tricia is spending most of her time focusing on breathing and on physical therapy. We have lots of books and magazines and games and tv to keep her busy, but she hasn't messed with much of it...it's amazing to me how much time and effort she is putting into getting as healthy as she can.
I've posted a lot in the past few days, an I'll probably be posting a lot in the next few days...the transplant activation could be upon us shortly, and there is a lot that I've been meaning to say that I want to get in before she's activated.
I want you to know that I've read every comment that has been written on this blog (over 9000 of them). Just an observation...I find amusing the comments that start our with, "I'm speechless/I have nothing left to say" and then go on to say more (usually lots more). I'm not being critical...I seriously think that's funny.
Please, know that, while I appreciate all of the encouraging emails that are coming our way, I DO NOT open Forwards...they're just too dangerous on several different levels. I've received several forwards from our blog readers, and I'm sure most of them are great emails, but I just send them to the trash. I'm sorry.
Time for some Q&A:
> While Gwyneth is just now getting some serious breast milk, she has been "feeding" via liquid IV, full of all of the nutrients, etc. that her little body needs. This is the big reason why she has stayed healthy without much growth over her first three weeks. With the breast milk, she is being fed via a feeding tube down her throat.
> You can buy all the baby clothes you want, but we'd prefer that you only send us something if you've taken the time to send me an email to get our address, and even then, I may tell you that we have all that we need for the time being.
> We're working on getting a PayPal account up and running for Tricia's Trust Fund (as several people have inquired about this).
> Feel free to link us and/or post about us on your blog...we appreciate all the help we can get! But, if you're going to mention our story in any kind of publication, please make sure that you get our expressed permission first.
> I'm not sure if grandparents can do the Kangaroo Care in the NICU at this point. Tricia remains on "contact isolation", which means she can't have any physical contact with Gwyneth...this will probably last until after the transplant surgery. I have promised Tricia that nobody else but me will have this opportunity until she is able to join me...it was bad enough that she was about the last person on earth to know of and see pictures of her own baby. :)
> We are planning on using some simple sign language to teach Gwyneth to communicate with us when she is young (and before she can speak). You can read more about this technique Here.
> Tricia has had a feeding tube for about a year. It has helped tremendously with her weight issues (CF patients are usually very thin), and she would recommend it to any CF patient who is struggling with their weight.
> Somebody commented, "My sympathies at the loss of your wife and daughter." Just to make sure, they're not dead. :)
> There are a few different types of ways to test for CF, and there are many different mutations of the gene among carriers which can require multiple screenings to detect. Gwyneth's only test so far has been a blood test that is not completely reliable. The standard for testing among infants is the Sweat Test, and Gwyneth is not sweating yet. I was screened via a blood lab before we were married to discover if I am a carrier of the CF gene, which I'm not, which is why we are not concerned about Gwyneth's possible status as a CFer.
> They say that you can set a goal to have your preemie out of the NICU sometime around their original (40 week) due date. If the preemie does extremely well, their time in the NICU can be cut short, and if there are complications, you can expect a longer stay.
Finally, here are a few thoughts that ran through my head as I was holding Gwyneth last night:
> My heartbeat is the first she's heard in over three weeks...the first since she last heard her mother's...
> Gwyneth is much smaller than my pug (a toy breed) was when we first got her... Below is a picture of me holding Meka the pug when we brought her home when she was just 8 weeks old...above a picture of me holding Gwyneth when she was just over 27 weeks old (gestational). I am in no way comparing my daughter with a dog...just trying to show you exactly how small Gwyneth really is.
> Although I would have preferred to share this moment with Tricia, my second choice was my mom...as I held my baby for the first time, she told me about my birth almost 27 years ago. That was special. Thanks, mom!
> Why God is blessing me in this way is beyond my comprehension.
Nate
Sunday, January 20, 2008
8:46pm Update
> Gwyneth Rose's CF screening came back negative (which is a positive). There are some more thorough tests that can be run when she's a bit older, but we're confident that they will also come back negative. She is a carrier of the CF gene, which simply means:
> If her future husband is also a carrier, they will have a 25% chance of having a child with CF.
> If her future husband is not a carrier, their children will not have CF.
She is on the jet vent, although she is almost down to 21% oxygen (the same that you and I get from the air we're breathing right now, which is great! They are also working at weaning her back onto the normal vent, and then giving the CPAP a go again in a few days.
> Tricia is getting stronger every day. The things that I can't lip read, she can communicate by writing or typing, which is great. Her eyesight is also back to normal, so she is able to see everything clearly and read if she wants to. I've read several of my blog posts to her, starting with a few days before her surgery/sedation, and read every single comment from This Post...she loves all that she is hearing.
She's had a few scares with the trachea, when she coughs so much that it plugs up her airway. They are weaning her off the vent, and reduced her oxygen to 65% today. They say if they can get her down to 50%, they'll begin letting her breathe for a bit at a time without the vent. They also may move her back down to 7800 once she becomes more stable.
Both of their cultures have not grown anything nasty, meaning, so far, no infections. The NICU docs are coming up with a plan to get them together soon (by soon, it may still be a week or so).
> Over $11,000 has been received for Tricia's Trust Fund in the past few days! Thank you so much! Tricia and I are both amazed at the generosity, especially of total strangers!
> Most men with CF cannot have children, but there have been exceptions, and it realy depends on the specific mutation of the gene and progression of the disease (I'm pretty sure about that).
> Somebody new asked in a comment about why our baby came so early...way too much to try to recap, so please, if you have the time, go back about 2-3 weeks and you should be able to catch up quickly.
> "OBX" is short for the "Outer Banks", the thin stretch of islands on the East Coast of NC that we call home.
> I've changed my blog header (the picture up there at the top) to include Gwyneth Rose.
Here's an updated slideshow of Gwyneth Rose (song: "Miracle" by The Foo Fighters)
Nate
> If her future husband is also a carrier, they will have a 25% chance of having a child with CF.
> If her future husband is not a carrier, their children will not have CF.
She is on the jet vent, although she is almost down to 21% oxygen (the same that you and I get from the air we're breathing right now, which is great! They are also working at weaning her back onto the normal vent, and then giving the CPAP a go again in a few days.
> Tricia is getting stronger every day. The things that I can't lip read, she can communicate by writing or typing, which is great. Her eyesight is also back to normal, so she is able to see everything clearly and read if she wants to. I've read several of my blog posts to her, starting with a few days before her surgery/sedation, and read every single comment from This Post...she loves all that she is hearing.
She's had a few scares with the trachea, when she coughs so much that it plugs up her airway. They are weaning her off the vent, and reduced her oxygen to 65% today. They say if they can get her down to 50%, they'll begin letting her breathe for a bit at a time without the vent. They also may move her back down to 7800 once she becomes more stable.
Both of their cultures have not grown anything nasty, meaning, so far, no infections. The NICU docs are coming up with a plan to get them together soon (by soon, it may still be a week or so).
> Over $11,000 has been received for Tricia's Trust Fund in the past few days! Thank you so much! Tricia and I are both amazed at the generosity, especially of total strangers!
> Most men with CF cannot have children, but there have been exceptions, and it realy depends on the specific mutation of the gene and progression of the disease (I'm pretty sure about that).
> Somebody new asked in a comment about why our baby came so early...way too much to try to recap, so please, if you have the time, go back about 2-3 weeks and you should be able to catch up quickly.
> "OBX" is short for the "Outer Banks", the thin stretch of islands on the East Coast of NC that we call home.
> I've changed my blog header (the picture up there at the top) to include Gwyneth Rose.
Here's an updated slideshow of Gwyneth Rose (song: "Miracle" by The Foo Fighters)
Nate
Monday, January 14, 2008
WOW!
I've gotten several emails like the one below, but this one really amazed me, and with the sender's permission, I'm posting part of it here as an encouragement for all of us.
To make a long story short, I’m a marathon/ultra marathon runner. People always ask me…how can you run 26 miles? My response….I’ve run 50…that’s nothing. What keep me going is knowing that there are people out there who would love the opportunity to run a marathon but can’t. I’ve run next to people in wheelchairs and people with artificial legs. It’s very inspiring. It makes you think…if they can go the distance, I need to stop complaining and thank God! Whenever I run a race I like to run in honor of someone bcs it reminds me of how blessed I am.
I was set to run the Mardi Gras Marathon on 2/24. Then I heard about Tricia! Your strength, her strength and the strength of that beautiful baby girl has inspired me. With your permission I’d like to run for Tricia and donate the funds raised to your trust fund. You can tell her that I’m taking her on a 26.2 mile journey and I’ll do all the work! She just has to focus on getting better and hang on. I pray for your family every day.
If it’s ok with you, I’d like to move forward and start raising funds at our next service. I’ll be wearing her picture on my back during the run. I’ll make sure to send you photos when we (Tricia & I) cross the finish! When she wakes up you can tell her she has to better so she can run a marathon. Hopefully you’ll get a smile.
God Bless You,
K. Byrd
Thanks to everyone who has felt the need to do something for us. Whether "large" or "small", we appreciate it all. I strongly believe in the "pay it forward" principle...God blesses us, not so that we can become selfish and enjoy life on our own, but so that we can turn around and be a blessing to those around us. Please, know that we have already begun doing what we can in our small ways to bless those I've seen in need around us here at the hospital.
Nate
To make a long story short, I’m a marathon/ultra marathon runner. People always ask me…how can you run 26 miles? My response….I’ve run 50…that’s nothing. What keep me going is knowing that there are people out there who would love the opportunity to run a marathon but can’t. I’ve run next to people in wheelchairs and people with artificial legs. It’s very inspiring. It makes you think…if they can go the distance, I need to stop complaining and thank God! Whenever I run a race I like to run in honor of someone bcs it reminds me of how blessed I am.
I was set to run the Mardi Gras Marathon on 2/24. Then I heard about Tricia! Your strength, her strength and the strength of that beautiful baby girl has inspired me. With your permission I’d like to run for Tricia and donate the funds raised to your trust fund. You can tell her that I’m taking her on a 26.2 mile journey and I’ll do all the work! She just has to focus on getting better and hang on. I pray for your family every day.
If it’s ok with you, I’d like to move forward and start raising funds at our next service. I’ll be wearing her picture on my back during the run. I’ll make sure to send you photos when we (Tricia & I) cross the finish! When she wakes up you can tell her she has to better so she can run a marathon. Hopefully you’ll get a smile.
God Bless You,
K. Byrd
Thanks to everyone who has felt the need to do something for us. Whether "large" or "small", we appreciate it all. I strongly believe in the "pay it forward" principle...God blesses us, not so that we can become selfish and enjoy life on our own, but so that we can turn around and be a blessing to those around us. Please, know that we have already begun doing what we can in our small ways to bless those I've seen in need around us here at the hospital.
Nate
Sunday, January 13, 2008
Just in Case You Can't Break the Addiction...
Here are a few posts that I would love for you to visit if you missed them, or revisit again:
If you want to help us in any way.
If you know Tricia and want to leave her a message for me to read to her when she wakes (or want to just read the comments and learn more about her).
If you want to leave a comment but are computer illiterate.
If you would like to pray for a little boy with CF named Dameron (I will lvoe you forever if you do).
If you want to read our perspective from several months ago.
Also, I'm sure that the rest of our blogging family may have something to say today (Andy and Megan already have):
Rick
Andy
Megan
Janet
Nate
If you want to help us in any way.
If you know Tricia and want to leave her a message for me to read to her when she wakes (or want to just read the comments and learn more about her).
If you want to leave a comment but are computer illiterate.
If you would like to pray for a little boy with CF named Dameron (I will lvoe you forever if you do).
If you want to read our perspective from several months ago.
Also, I'm sure that the rest of our blogging family may have something to say today (Andy and Megan already have):
Rick
Andy
Megan
Janet
Nate
Saturday, January 12, 2008
Impact
What an impact you (if you're reading this, that means you) are making in our lives and across the world with you willingness to partner with us in our story. Here are a few ways I've seen so far.
> I've been looking for Joe and Kendra ever since I saw them two days ago. About an hour ago, I stepped on the elevator in the parking garage, and there was Joe. We walked and talked all the way to the NICU. I told him that a few hundred people had posted about praying for him. He said that they'll get to hold one of the boys today. Next time I see him, I'll have the web address written down so they can read the posts and be encouraged, If you haven't yet, post a prayer or encouragement for them HERE.
> The following comment was posted here by Robyn just a few minutes ago:
Dear Nathan, I will continue praying for you, Tricia and Gwyneth. My daughter Michalea is a miracle baby like Gwyneth!!! She was a preemie, born with so many physical problems and dr's told my hubby that she only had a 4% chance of survival...the Lord gave me this verse that I would like to share with you to pray over both of your girls, Psalm 118:17, they shall both live and die and proclaim the works of the Lord...I prayed that each day while in NICU with Michalea, and I would pray over the other little ones while I was there as she was in the worst NICU unit. But God is faithful, she just had her 11th birthday this week :0) I would ask though that you would also pray for us, we found out last year when my oldest daughter that was only 22 at the time- found out she is HIV postive and she was pregnant with our first grandchild and she has been very sick. I am praying for you.
Visit Her Blog and let her know you're praying for her and her family!
> The cards and packages are starting to come in. I even had somebody personally deliver some sweet t-shirts last night to the front desk. I think you're also making an impact on the staff at our hotel as they're beginning to ask me more questions about Tricia and Gwyneth Rose.
> I just received an email that about $2000 has come in already for Tricia's Trust Fund! (for example) That amount will allow me to stay at our hotel for several more weeks!
> While I was out, I did buy several things for Tricia and Gwyneth that will help continue to impact our families and friends for years.
> A 160GB external hard drive to store all of the pics and videos of Gwyneth as well as a storage space for all of the emails and such. For years, she will be able to look back on this time of her life as if she were one of us.
> A picture album of Gwyneth. I prefer to look at pics on my computer, but her mother (and her grandmothers) will want to hold a picture album. I stopped by a photo shop and printed off several of my favorite pics of her so far. I'm sure it will fill up quickly. (This album may even make it's way to NHC by next Sunday...) I was able to share a bit of Tricia's story and a few of Gwyneth's pictures with a girl at the photo shop.
> A binder for all of the ECards that are still coming in for Tricia and Gwyneth. I'm amazed, and Tricia will go blind reading them all. I'll let her crafty sisters figure out a way to make the binder look fun and pretty.
> Another huge bone for Meka the pug...OK, this one really isn't that big, but Meka kills me with kisses when I come home at the end of every day and has been sleeping with me every night, helping me to not be so lonely without my wife. She deserves an oversized treat.
> I need some help with something (Along With These). I would like to find a photo album that is decorated with a White Rose. I know there are several crafty people who are now involved with our story, and if you want to send us something homemade, that would be wonderful. BUT, DON'T go out and send us a store-bought white rose photo album because I would fear that we'd end up with 50 of the same album. (I take a lot of pictures, but I'm not a freak)
So, if you can help me search for something that might work online, or if you find something in a store, please let me know so that I can order it for myself.
I have almost caught up on reading every single comment. Thank you again. It has become the consuming pastime of my life as God is using your words of prayer and encouragement to fuel my soul and spirit (not to mention our families').
Off with Agnes (Tricia's mom) to get some dinner at the caf.
Nate
> I've been looking for Joe and Kendra ever since I saw them two days ago. About an hour ago, I stepped on the elevator in the parking garage, and there was Joe. We walked and talked all the way to the NICU. I told him that a few hundred people had posted about praying for him. He said that they'll get to hold one of the boys today. Next time I see him, I'll have the web address written down so they can read the posts and be encouraged, If you haven't yet, post a prayer or encouragement for them HERE.
> The following comment was posted here by Robyn just a few minutes ago:
Dear Nathan, I will continue praying for you, Tricia and Gwyneth. My daughter Michalea is a miracle baby like Gwyneth!!! She was a preemie, born with so many physical problems and dr's told my hubby that she only had a 4% chance of survival...the Lord gave me this verse that I would like to share with you to pray over both of your girls, Psalm 118:17, they shall both live and die and proclaim the works of the Lord...I prayed that each day while in NICU with Michalea, and I would pray over the other little ones while I was there as she was in the worst NICU unit. But God is faithful, she just had her 11th birthday this week :0) I would ask though that you would also pray for us, we found out last year when my oldest daughter that was only 22 at the time- found out she is HIV postive and she was pregnant with our first grandchild and she has been very sick. I am praying for you.
Visit Her Blog and let her know you're praying for her and her family!
> The cards and packages are starting to come in. I even had somebody personally deliver some sweet t-shirts last night to the front desk. I think you're also making an impact on the staff at our hotel as they're beginning to ask me more questions about Tricia and Gwyneth Rose.
> I just received an email that about $2000 has come in already for Tricia's Trust Fund! (for example) That amount will allow me to stay at our hotel for several more weeks!
> While I was out, I did buy several things for Tricia and Gwyneth that will help continue to impact our families and friends for years.
> A 160GB external hard drive to store all of the pics and videos of Gwyneth as well as a storage space for all of the emails and such. For years, she will be able to look back on this time of her life as if she were one of us.
> A picture album of Gwyneth. I prefer to look at pics on my computer, but her mother (and her grandmothers) will want to hold a picture album. I stopped by a photo shop and printed off several of my favorite pics of her so far. I'm sure it will fill up quickly. (This album may even make it's way to NHC by next Sunday...) I was able to share a bit of Tricia's story and a few of Gwyneth's pictures with a girl at the photo shop.
> A binder for all of the ECards that are still coming in for Tricia and Gwyneth. I'm amazed, and Tricia will go blind reading them all. I'll let her crafty sisters figure out a way to make the binder look fun and pretty.
> Another huge bone for Meka the pug...OK, this one really isn't that big, but Meka kills me with kisses when I come home at the end of every day and has been sleeping with me every night, helping me to not be so lonely without my wife. She deserves an oversized treat.
> I need some help with something (Along With These). I would like to find a photo album that is decorated with a White Rose. I know there are several crafty people who are now involved with our story, and if you want to send us something homemade, that would be wonderful. BUT, DON'T go out and send us a store-bought white rose photo album because I would fear that we'd end up with 50 of the same album. (I take a lot of pictures, but I'm not a freak)So, if you can help me search for something that might work online, or if you find something in a store, please let me know so that I can order it for myself.
I have almost caught up on reading every single comment. Thank you again. It has become the consuming pastime of my life as God is using your words of prayer and encouragement to fuel my soul and spirit (not to mention our families').
Off with Agnes (Tricia's mom) to get some dinner at the caf.
Nate
Thursday, January 10, 2008
Only God
I spent about 20 minutes with Gwythen this morning after seeing Tricia (my dad describes in the last post). She is still as perfect as can be, although they are watching many things. It is amazing to see the bond that is somehow mysteriously forming between my tow girls, separated by three floors.
During the night, Gwyneth's vent pressure was reduced from 32 to 30.
During the night, Tricia's vent pressure was reduced from 32 to 30.
Both girls are responding to my voice.
It's amazing to see...Tricia's heart-rate drops 5 points whenever I enter the room. Just a few minutes ago, Janet and Megan were with her having a contest to see who's voice could drop it the most. I walked in, and immediately put them to shame.
I've spent several minutes talking with Tricia. She'll squeeze my hand, slow her breathing, and even smile for me (once) when I ask. She's seen me twice now this morning, although I doubt she'll remember it later. They're working on helping her digestion at the moment, so I've stepped out for a few minutes.
Here are a few pics of me with Gwyneth last night (with ultra violet light).
Here are a few pictures of things hanging on Tricia's wall.
My parents shot several minutes of Gwyneth video, but I'm waiting to watch it with Tricia and will post it after we have celebrated together.
BTW, people have asked about the 65Roses4PattySue address in KDH. It will be checked daily by the trust fund administrator.
Nate
During the night, Gwyneth's vent pressure was reduced from 32 to 30.
During the night, Tricia's vent pressure was reduced from 32 to 30.
Both girls are responding to my voice.
It's amazing to see...Tricia's heart-rate drops 5 points whenever I enter the room. Just a few minutes ago, Janet and Megan were with her having a contest to see who's voice could drop it the most. I walked in, and immediately put them to shame.
I've spent several minutes talking with Tricia. She'll squeeze my hand, slow her breathing, and even smile for me (once) when I ask. She's seen me twice now this morning, although I doubt she'll remember it later. They're working on helping her digestion at the moment, so I've stepped out for a few minutes.
Here are a few pics of me with Gwyneth last night (with ultra violet light).
Here are a few pictures of things hanging on Tricia's wall.
My parents shot several minutes of Gwyneth video, but I'm waiting to watch it with Tricia and will post it after we have celebrated together.
BTW, people have asked about the 65Roses4PattySue address in KDH. It will be checked daily by the trust fund administrator.
Nate
Monday, January 7, 2008
The Time Has Come
Tricia made the decision this morning to go ahead with the C Section as early as possible. Her CO2 levels continue to rise, and her discomfort and lack of sleep is becoming almost unbearable. I'm amazed that she lasted this long, and we are not surprised that it has come so soon.
The doctors have told us that the surgery will take place either this afternoon or tomorrow, probably tomorrow. She will be Anesthetized, Intubated and Ventilated and then operated on. The C Section will take no more than a few minutes. She will be kept under for a few hours to allow her body to become accustom to the ventilator.
If her body does not accept the ventilation, she will be in serious trouble. If her body does accept, she will hopefully be weened off the ventilator until she can breathe appropriately on her own. (this will be important as we look ahead to the double lung transplant)
There are obviously many risks involved. Several things we can pray for:
> Peace for Tricia and I about this decision. We are at peace now, and have been with every decision so far, and God has blessed each and every one.
> Peace for our family. Our parents will be here with us, as well as my grandparents and maybe a few others, but many of Tricia's family either can't be here or will not be here in time for the surgery. In some ways, it's easier to be in the situation than reading/hearing about it from a distance.
> CO2 levels to remain stable or drop. Every ultrasound has shown the baby to be perfectly healthy, which means nothing has affected her so far. That could change at any time.
> The doctors and staff have been incredibly supportive. This is not a delicate operation, but it does involve a lot of risks and there will be a massive amount of people involved. Everything needs to work exactly as planned.
> Without a miraculous recovery, Tricia's Lung Function will never become well enough for her to be placed on the Double Lung Transplant list. The pulmonary docs have told us that, if everything goes well, it will be a minimum of 2-3 months until she will be well enough for a transplant.
> That God will continue to make Himself known, especially to those on the staff here who do not know Him in a personal way. God has always used Tricia's Journey to do extraordinary things, and we have seen God do amazing things already with our story in the past few weeks and months. The stories that have been coming in are concrete proof to us that we have been in the center of God's will throughout this entire process. We want the entire world to know that.
Our family and friends, and the prayers of the thousands who have heard of us have been what God is using to sustain us and give us courage and strength. No matter what happens, we are eternally thankful for all that He has done.
Nate
The doctors have told us that the surgery will take place either this afternoon or tomorrow, probably tomorrow. She will be Anesthetized, Intubated and Ventilated and then operated on. The C Section will take no more than a few minutes. She will be kept under for a few hours to allow her body to become accustom to the ventilator.
If her body does not accept the ventilation, she will be in serious trouble. If her body does accept, she will hopefully be weened off the ventilator until she can breathe appropriately on her own. (this will be important as we look ahead to the double lung transplant)
There are obviously many risks involved. Several things we can pray for:
> Peace for Tricia and I about this decision. We are at peace now, and have been with every decision so far, and God has blessed each and every one.
> Peace for our family. Our parents will be here with us, as well as my grandparents and maybe a few others, but many of Tricia's family either can't be here or will not be here in time for the surgery. In some ways, it's easier to be in the situation than reading/hearing about it from a distance.
> CO2 levels to remain stable or drop. Every ultrasound has shown the baby to be perfectly healthy, which means nothing has affected her so far. That could change at any time.
> The doctors and staff have been incredibly supportive. This is not a delicate operation, but it does involve a lot of risks and there will be a massive amount of people involved. Everything needs to work exactly as planned.
> Without a miraculous recovery, Tricia's Lung Function will never become well enough for her to be placed on the Double Lung Transplant list. The pulmonary docs have told us that, if everything goes well, it will be a minimum of 2-3 months until she will be well enough for a transplant.
> That God will continue to make Himself known, especially to those on the staff here who do not know Him in a personal way. God has always used Tricia's Journey to do extraordinary things, and we have seen God do amazing things already with our story in the past few weeks and months. The stories that have been coming in are concrete proof to us that we have been in the center of God's will throughout this entire process. We want the entire world to know that.
Our family and friends, and the prayers of the thousands who have heard of us have been what God is using to sustain us and give us courage and strength. No matter what happens, we are eternally thankful for all that He has done.
Nate
Tuesday, January 1, 2008
From Tricia
This is from Tricia's Blog, which she updated last night while I was sleeping.
Prayer Requests:
1. My lungs are in such bad condition at this point that the doctors can’t be sure of what will happen next. Please pray for the antibiotics that I am on to begin working effectively. So far, they have not helped out with any kind of improvement. Each day counts.
2. Mucus is what traps infection and keeps my o2 levels low and me from functioning at my best. I have had a hard time coughing up the gross stuff which once I do, will help my lungs out a great deal. Pray that I cough lots of it out easily without too much damage to my lungs and airways.
3. I have not slept more than 3 hours each day in the past week and a half. I am use to a normal 12-16 hours a day sleep. This is greatly effecting my body’s ability to fight infection, regain strength, and help me to get better. Please pray that I begin to sleep better. I have been on sleeping meds which have yet to help since it is a breathing issue and not just a lack of sleep desire.
4. My lung capacity is very very low, please pray I remain stable until giving birth and then waiting for a transplant.
5. If I don’t get better, I could be too sick for a transplant. Please pray this does not happen.
6. Pray for my heart to stay in good shape. It is beating slightly to fast and has been doing this for quite some time. Pray that it comes down to a normal heart rythym.
6. We don’t know yet about the details of having this baby but know it will be a complicated and risky procedure. The more time the better for the baby... a couple more weeks in my