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
Showing posts with label Q/A. Show all posts
Showing posts with label Q/A. Show all posts
Wednesday, May 21, 2008
Sunday, May 18, 2008
Q&A
I know that lots of people have questions for us...I haven't done a good Q&A in a while, so here's your chance to ask.
I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's.
Thanks!
Nate
I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's.
Thanks!
Nate
Tuesday, May 6, 2008
Blog Ads
So, many people have asked me if I've considered hosting blog ads on the CFHusband blog. I did consider it, before Gwyneth was even born, for a few minutes, but decided against it for a few different reasons.
> It doesn't fit with the Purpose Of This Blog. The purpose of this blog has never been to solicit personal financial support for our family. As I've explained before, we'd rather you give to others.
Even if I were to give moneys from blog ads to other people/organizations...
> I think blog ads are usually ugly and distracting. I don't believe I need to say more.
> There aren't many things in this world that I would actually want to advertise for on my blog.
> I feel used when I visit a blog/website that makes money off of my hit. I don't ever want anyone to feel that way when they visit my blog. Even if nobody did feel that way, I would still feel like I was going against my own character by using blog ads.
And, finally...
> I believe that blessing others is so much more powerful and memorable when you and I do it because we want to, not because we simply visit a blog/website. While we have certainly been blessed by the kindness of others over the past several months, the support of the CFF, organ donation, etc. has been so much bigger and more important. There are literally thousands upon thousands of people who will be affected (now and for years to come) through the ways you have become involved in the things we are passionate about.
Let me be sure to add, if you use ads on your blog/website, more power to you. The above are simply my thoughts and convictions about MY blog, and have nothing to do with you or your site (except that I think they're usually ugly and I might feel used).
Thanks!
Nate
> It doesn't fit with the Purpose Of This Blog. The purpose of this blog has never been to solicit personal financial support for our family. As I've explained before, we'd rather you give to others.
Even if I were to give moneys from blog ads to other people/organizations...
> I think blog ads are usually ugly and distracting. I don't believe I need to say more.
> There aren't many things in this world that I would actually want to advertise for on my blog.
> I feel used when I visit a blog/website that makes money off of my hit. I don't ever want anyone to feel that way when they visit my blog. Even if nobody did feel that way, I would still feel like I was going against my own character by using blog ads.
And, finally...
> I believe that blessing others is so much more powerful and memorable when you and I do it because we want to, not because we simply visit a blog/website. While we have certainly been blessed by the kindness of others over the past several months, the support of the CFF, organ donation, etc. has been so much bigger and more important. There are literally thousands upon thousands of people who will be affected (now and for years to come) through the ways you have become involved in the things we are passionate about.
Let me be sure to add, if you use ads on your blog/website, more power to you. The above are simply my thoughts and convictions about MY blog, and have nothing to do with you or your site (except that I think they're usually ugly and I might feel used).
Thanks!
Nate
Sunday, April 13, 2008
Q&A
I thought I'd answer some questions (as there have been a lot the past few weeks) first. I still have over 2000 comments I've yet to read from right after the transplant (I've already knocked out about 2000 over the past few days), so, as always, if I don't answer your question, it's because I can't, don't want to, already have or just haven't read your question yet (or because I plan on answering it soon in another post).
> Gwyneth is wearing clothes...has been for several weeks. The primary purpose of her clothes is to keep her warm. All of the clothes she wears are just like regular onesies, only a whole lot smaller, and most have been given/sent to us as gifts as we have yet to buy anything for her. Some come from the NICU, but just when she runs out of clean stuff we've brought in. The nurses usually dress her. Mico-preemie clothes are difficult to find except on the internet. Hopefully, someday, we can give what we're receiving away to somebody else in need.
> "Blood gas" is the level of O2 and CO2 in the blood. They take a few blood gases (draw blood to test for the levels) from Tricia every day to make sure her lungs are working the way they're supposed to. They're especially watching for dangerously high levels of CO2.
> Somebody left a comment a few days ago saying that organ donation NEEDS to be outlined in a living will...this is NOT true (at least, not in most states). Yes, a living will is one good way to insure organ donation, but most states (and soon, every state) have new laws that declare that either the drivers license or online registry is all that is needed for the deceased to insure that their organs are donated.
> I take 99% of the pictures you see here on the blog...even the ones of me holding Gwyneth. Thanks to family and nurses for the shots that even my long arms can't handle.
> Gwyneth doesn't have reflux issues. Her crib (as was her incubator) is tilted to help insure that it stays that way.
> As I've mentioned before, I'd prefer not to go into great detail about the transplant surgery....as you can imagine, it's pretty hard-core and I don't want to gross anyone out. You can very easily find lots of reliable (and lots of unreliable) info with a quick google search...I've even been told you can find a video of an actual surgery. I'll give you some of the basics of the surgery in anther post soon.
> To answer This Puzzle (like anyone even remembers), Rosie owned a house in Nyack, NY while I was a student there at Nyack College '99/'00...I could even show you which house it was (actually, could just show you the really tall fence and gate).
Thanks!
Nate
> Gwyneth is wearing clothes...has been for several weeks. The primary purpose of her clothes is to keep her warm. All of the clothes she wears are just like regular onesies, only a whole lot smaller, and most have been given/sent to us as gifts as we have yet to buy anything for her. Some come from the NICU, but just when she runs out of clean stuff we've brought in. The nurses usually dress her. Mico-preemie clothes are difficult to find except on the internet. Hopefully, someday, we can give what we're receiving away to somebody else in need.
> "Blood gas" is the level of O2 and CO2 in the blood. They take a few blood gases (draw blood to test for the levels) from Tricia every day to make sure her lungs are working the way they're supposed to. They're especially watching for dangerously high levels of CO2.
> Somebody left a comment a few days ago saying that organ donation NEEDS to be outlined in a living will...this is NOT true (at least, not in most states). Yes, a living will is one good way to insure organ donation, but most states (and soon, every state) have new laws that declare that either the drivers license or online registry is all that is needed for the deceased to insure that their organs are donated.
> I take 99% of the pictures you see here on the blog...even the ones of me holding Gwyneth. Thanks to family and nurses for the shots that even my long arms can't handle.
> Gwyneth doesn't have reflux issues. Her crib (as was her incubator) is tilted to help insure that it stays that way.
> As I've mentioned before, I'd prefer not to go into great detail about the transplant surgery....as you can imagine, it's pretty hard-core and I don't want to gross anyone out. You can very easily find lots of reliable (and lots of unreliable) info with a quick google search...I've even been told you can find a video of an actual surgery. I'll give you some of the basics of the surgery in anther post soon.
> To answer This Puzzle (like anyone even remembers), Rosie owned a house in Nyack, NY while I was a student there at Nyack College '99/'00...I could even show you which house it was (actually, could just show you the really tall fence and gate).
Thanks!
Nate
Thursday, March 27, 2008
Update and Q&A
Gwyneth Rose did great with the laser eye treatment. She'll have another exam next Tuesday, but it may be two weeks before we really know if the treatment is helping. Even with the best outcome, she will probably have slight problems with her extreme peripheral vision, which should not be an issue unless she wants to be a fighter jet pilot.
Tricia is feeling better, but is getting a little anxious to get out of here. We just got back from spending about 45 minutes outside, which she always looks forward to, and hopefully we'll get to visit with Gwyneth together later today after she (G) has got the sedatives out of her system.
Q&A:
> Currently, my Personal Great Strides Fundraising Total is at $573, which is about 5% of my goal for September 13. It is updated on a regular basis by the CFF. It's quick and easy to donate online if you're looking for a way to help us find a cure for this disease!
> As I explained Here, I give myself about 1.5 haircuts per year. I usually cut my own hair, but get my personal barber (hey Steve!) to cut it if I want something other than the buzz. I did cut hair in college, and can do a good job with more than just the buzz if it's not my own head.
> I have cut Tricia's hair, but just a trim a few times to get rid of her split ends. I'm scared to do much more...if I screw up my hair, I just cut it a little shorter and it's good to go.
And, mad props to my friend anita for catching the nod ("I was hot") to Napoleon Dynamite in my Haircut Post (also, the song is from the Nacho Libre soundtrack).
I'm headed off to the Duke Gardens to get some photos of all of the trees and flowers in full bloom!
Nate
Tricia is feeling better, but is getting a little anxious to get out of here. We just got back from spending about 45 minutes outside, which she always looks forward to, and hopefully we'll get to visit with Gwyneth together later today after she (G) has got the sedatives out of her system.
Q&A:
> Currently, my Personal Great Strides Fundraising Total is at $573, which is about 5% of my goal for September 13. It is updated on a regular basis by the CFF. It's quick and easy to donate online if you're looking for a way to help us find a cure for this disease!
> As I explained Here, I give myself about 1.5 haircuts per year. I usually cut my own hair, but get my personal barber (hey Steve!) to cut it if I want something other than the buzz. I did cut hair in college, and can do a good job with more than just the buzz if it's not my own head.
> I have cut Tricia's hair, but just a trim a few times to get rid of her split ends. I'm scared to do much more...if I screw up my hair, I just cut it a little shorter and it's good to go.
And, mad props to my friend anita for catching the nod ("I was hot") to Napoleon Dynamite in my Haircut Post (also, the song is from the Nacho Libre soundtrack).
I'm headed off to the Duke Gardens to get some photos of all of the trees and flowers in full bloom!
Nate
Tuesday, March 11, 2008
Update and Q&A
Tricia continues to do well. She set a new personal best with 10 laps around her floor yesterday, which is 2/3 of a mile. We're aiming for 1 mile by next week. She's been to see the baby almost every day for the past week, and can hold her as much as she wants.
Gwyneth Rose broke free from contact isolation yesterday with her fourth negative MRSA swab! It was so good to finally be able to touch her skin-to-skin again. She needed a blood transfusion yesterday, which meant the had to skip a feeding and put her back on the nasal cannula, but hopefully she'll be breathing on her own again soon.
She had another eye exam, and she is developing Retinopathy of Prematurity (ROP) which is very common in premature babies her age and size. They will give her another eye exam next Tuesday, and if the condition is worse, they will recommend a laser eye treatment which has good success at correcting the problem.
Q&A
> Gwyneth's hair looks anywhere from bleach blond to red to brown depending on the light and the editing affects I use on the photos. From what I can tell, it's a little darker than it was when she was born.
> Here is a post in which I talk about our own CF screening.
> Several states in the US now require CF screening for all newborns, but many do not. I think it's important for every potential parent to be aware of the possibility of CF. You can find out more about CF screening for newborns Here.
> Neither Gwyneth and nor Tricia are "out of the woods" by any means. Gwyneth still has at least two more months before she'll be cleared to go home, and that's best case scenario, and Tricia's biggest challenge yet is upcoming with the transplant surgery and recovery. They are both in extremely vulnerable conditions, and it would not take much to cause either of the them to have major issues.
> I did "claim" my blog on the blog award website, but it looks like it didn't do anything...
Nate
Gwyneth Rose broke free from contact isolation yesterday with her fourth negative MRSA swab! It was so good to finally be able to touch her skin-to-skin again. She needed a blood transfusion yesterday, which meant the had to skip a feeding and put her back on the nasal cannula, but hopefully she'll be breathing on her own again soon.
She had another eye exam, and she is developing Retinopathy of Prematurity (ROP) which is very common in premature babies her age and size. They will give her another eye exam next Tuesday, and if the condition is worse, they will recommend a laser eye treatment which has good success at correcting the problem.
Q&A
> Gwyneth's hair looks anywhere from bleach blond to red to brown depending on the light and the editing affects I use on the photos. From what I can tell, it's a little darker than it was when she was born.
> Here is a post in which I talk about our own CF screening.
> Several states in the US now require CF screening for all newborns, but many do not. I think it's important for every potential parent to be aware of the possibility of CF. You can find out more about CF screening for newborns Here.
> Neither Gwyneth and nor Tricia are "out of the woods" by any means. Gwyneth still has at least two more months before she'll be cleared to go home, and that's best case scenario, and Tricia's biggest challenge yet is upcoming with the transplant surgery and recovery. They are both in extremely vulnerable conditions, and it would not take much to cause either of the them to have major issues.
> I did "claim" my blog on the blog award website, but it looks like it didn't do anything...
Nate
Thursday, March 6, 2008
Update and Q&A
Tricia is doing most excellent. She is walking over a quarter mile everyday, and is not coughing up nearly as much junk from her lungs as she had been (which means she's infection free for the time being).
And, I bought her a new macbook today, because her PC is old and broken (and it is a PC...), so you should be seeing more of her via Facebook and email and her blog.
Gwyneth gained another ounce last night. She continues to breathe incredibly well on her own. She is already outgrowing some of the hats people have made for her. I did not buy her a mac today.
Q&A
> Gwyneth is the first grandchild on my side of the family, and the ninth on Tricia's side.
> I still read every comment, usually on the same day as it is posted.
> The picture of Tricia in my blog header was taken at a friends' wedding just before Tricia and I were married.
> The doctors are not concerned with Gwyneth's weight.
Just in case you've missed any, be sure to watch all of the CFHusband Videos next time you're bored.
Nate
And, I bought her a new macbook today, because her PC is old and broken (and it is a PC...), so you should be seeing more of her via Facebook and email and her blog.
Gwyneth gained another ounce last night. She continues to breathe incredibly well on her own. She is already outgrowing some of the hats people have made for her. I did not buy her a mac today.
Q&A
> Gwyneth is the first grandchild on my side of the family, and the ninth on Tricia's side.
> I still read every comment, usually on the same day as it is posted.
> The picture of Tricia in my blog header was taken at a friends' wedding just before Tricia and I were married.
> The doctors are not concerned with Gwyneth's weight.
Just in case you've missed any, be sure to watch all of the CFHusband Videos next time you're bored.
Nate
Monday, March 3, 2008
Stuff
Gwyneth Rose continues to do incredibly well on the nasal cannula. Her third MRSA swab came back negative, so hopefully next Monday she'll be on her way out of contact isolation.
Tricia is also doing great. She's been to see the baby several times in the past few days, which is very good for both them and me. She continues to remain infection free.
Q&A
> I've had several questions about my camera. If you'll look back over other Q&A posts, you'll find some more info about my photography "skills". I'm using the Digital Canon Rebel Ti.
Thanks!
Nate
Tricia is also doing great. She's been to see the baby several times in the past few days, which is very good for both them and me. She continues to remain infection free.
Q&A
> I've had several questions about my camera. If you'll look back over other Q&A posts, you'll find some more info about my photography "skills". I'm using the Digital Canon Rebel Ti.
Thanks!
Nate
Thursday, February 28, 2008
Q&A
> Tricia won our game of Scrabble yesterday by the score of 203 to 199. She is a spelling wiz.
> Tricia has only been outside that one time...the cold weather and the Flu have kept her from going out again.
> Tricia hasn't eaten much except for a little apple sauce and chocolate pudding. She is fed mostly via her feeding tube throughout the day.
I've had several questions about CF/Transplant related diabetes. I am not an Endocrinologist, not do I play one on tv, but here are a few things that I think are true about this subject:
> CFers are prone to diabetes for a few reasons:
- Most CFers are on a high fat/high calorie diet (which usually means high sugar/glucose levels) to help keep their weight up.
- The Pancreas is one of the organs affected by CF. The Pancreas produces Insulin. It makes sense that CFers are prone to insulin deficiency (meaning they produce insulin, just not enough).
- Many CF drugs, especially steroids, can cause diabetes.
> Tricia may or may not have had diabetes before being pregnant, but it wasn't detected until after she became pregnant. Of course, Gestational Diabetes is very common.
> So far (since delivering the baby), Tricia is still having issues with her blood sugar, which means that, especially with the upcoming transplant (and all of the transplant steroids that she'll be taking), she'll probably deal with diabetes for the rest of her life (which will also make for some crazy dietary restrictions...).
Thanks.
Nate
> Tricia has only been outside that one time...the cold weather and the Flu have kept her from going out again.
> Tricia hasn't eaten much except for a little apple sauce and chocolate pudding. She is fed mostly via her feeding tube throughout the day.
I've had several questions about CF/Transplant related diabetes. I am not an Endocrinologist, not do I play one on tv, but here are a few things that I think are true about this subject:
> CFers are prone to diabetes for a few reasons:
- Most CFers are on a high fat/high calorie diet (which usually means high sugar/glucose levels) to help keep their weight up.
- The Pancreas is one of the organs affected by CF. The Pancreas produces Insulin. It makes sense that CFers are prone to insulin deficiency (meaning they produce insulin, just not enough).
- Many CF drugs, especially steroids, can cause diabetes.
> Tricia may or may not have had diabetes before being pregnant, but it wasn't detected until after she became pregnant. Of course, Gestational Diabetes is very common.
> So far (since delivering the baby), Tricia is still having issues with her blood sugar, which means that, especially with the upcoming transplant (and all of the transplant steroids that she'll be taking), she'll probably deal with diabetes for the rest of her life (which will also make for some crazy dietary restrictions...).
Thanks.
Nate
Tuesday, February 26, 2008
Q&A
Tricia's still sleeping at 12:20pm, which gives me an opportunity to blog some more...
> If you are interested in getting my permission to play our videos for church events/services, please do so by Emailing Me.
> We've been told that Tricia has been given a score of 55 (out of 100). Apparently, 55 is incredibly high, and places her on the top of the list for patients here at Duke. That's a good thing.
> Parents of preemies (at least, here at Duke) are given the freedom to decide what they're preemie baby is going to eat, assuming that the baby is actually able to eat. The options, as far as I understand them, are basically either the birth mother's milk, donated milk or formula.
> (this varies between different transplant centers) Organ donor recipients are given the option to send a letter/card to the donor's family a year after the surgery (some choose to contact, others don't). Neither side is given any information about the other (race, age, cause of death, reason for need, etc.) until this first contact, and the primary communication is done through the transplant organizations. If the donor's family wants to respond, they can. I've heard of many stories of the donor family having a kind of adoptive relationship with the donor recipient.
> I've created a new label titled "Q/A". Click Here to see every Q&A post and find answers to other questions.
Nate
I've already blogged several times today, so don't miss the stuff below...
> If you are interested in getting my permission to play our videos for church events/services, please do so by Emailing Me.
> We've been told that Tricia has been given a score of 55 (out of 100). Apparently, 55 is incredibly high, and places her on the top of the list for patients here at Duke. That's a good thing.
> Parents of preemies (at least, here at Duke) are given the freedom to decide what they're preemie baby is going to eat, assuming that the baby is actually able to eat. The options, as far as I understand them, are basically either the birth mother's milk, donated milk or formula.
> (this varies between different transplant centers) Organ donor recipients are given the option to send a letter/card to the donor's family a year after the surgery (some choose to contact, others don't). Neither side is given any information about the other (race, age, cause of death, reason for need, etc.) until this first contact, and the primary communication is done through the transplant organizations. If the donor's family wants to respond, they can. I've heard of many stories of the donor family having a kind of adoptive relationship with the donor recipient.
> I've created a new label titled "Q/A". Click Here to see every Q&A post and find answers to other questions.
Nate
I've already blogged several times today, so don't miss the stuff below...
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
Wednesday, February 20, 2008
Transplant Update (2.20.08-3:15pm) + Q&A
The TX coordinator just came by again. Tricia signed the papers. She told us it will definitely be by the weekend, maybe tomorrow. I'll let you know.
Q&A
> As always, I say this with love... I've been asked several transplant related questions that I've already answered several times...I want to encourage you, if you're new to the blog to use the "Labels" over there on the right of your screen to do a little research. Also, Google is a great tool. I would love to answer every question, but I just don't have the time or energy, so I hope you understand. But, just to be nice...
> There is no way to know how long Tricia will be on the list...the average double lung TX wait here at Duke is a few months. The odds of Tricia being alive this time next year without a transplant are very, very small, and her window of opportunity is even smaller, so we don't have much time. It could be the minute after she gets listed, or it could never happen.
> The vent that Tricia is on is not portable. Like I said, without a new set of lungs, her CF will kill her in the near future.
> Gwyneth "sleeps" probably 22 hours a day right now (that's just my guess from observing). The only times she seems to be truly awake is when the nurses or other staff are messing with her...every now and then she'll be awake on her own for a few minutes. She does look around, but I've been told that she has little control over her eye motion, and that she probably doesn't register with anything she's seeing yet. I do think she can recognize the sound of mine and Tricia's voices (although Tricia can't speak when she's on the portable vent in the nursery).
> There's another great question that was asked that I'm going to devote an entire post to later.
Thanks!
Nate
Q&A
> As always, I say this with love... I've been asked several transplant related questions that I've already answered several times...I want to encourage you, if you're new to the blog to use the "Labels" over there on the right of your screen to do a little research. Also, Google is a great tool. I would love to answer every question, but I just don't have the time or energy, so I hope you understand. But, just to be nice...
> There is no way to know how long Tricia will be on the list...the average double lung TX wait here at Duke is a few months. The odds of Tricia being alive this time next year without a transplant are very, very small, and her window of opportunity is even smaller, so we don't have much time. It could be the minute after she gets listed, or it could never happen.
> The vent that Tricia is on is not portable. Like I said, without a new set of lungs, her CF will kill her in the near future.
> Gwyneth "sleeps" probably 22 hours a day right now (that's just my guess from observing). The only times she seems to be truly awake is when the nurses or other staff are messing with her...every now and then she'll be awake on her own for a few minutes. She does look around, but I've been told that she has little control over her eye motion, and that she probably doesn't register with anything she's seeing yet. I do think she can recognize the sound of mine and Tricia's voices (although Tricia can't speak when she's on the portable vent in the nursery).
> There's another great question that was asked that I'm going to devote an entire post to later.
Thanks!
Nate
Tuesday, February 19, 2008
11:12am Update with Q&A
We're still waiting to hear from the transplant team...it may be a while.
Tricia is having a good day again. She's busy at the moment checking emails and other stuffs.
Gwyneth is doing well. I just went down and took her birthday pictures, which I'll post later. She's doing great on the CPAP. The MRSA swab was negative...three more and we'll be back in a normal room (which I like a lot better).
Q&A:
> Tricia will probably not make it home before her transplant...she would have to be completely off the vent for that to happen, and the risk of infection and such is just too great of a risk either way.
> Tricia tells me that her trach does not hurt her at all. It's a little uncomfortable at times, and it's certainly restricting while she's attached to the vent. It's been a great thing for her so far.
> I'm actually just using the simple HP photo editing software that came with one of my printers or cameras or something...the only thing I'm really doing is a little cropping, a little antiquing, and/or a little "soft glow".
> Most of the time, I'm using a EFS 18-55mm lens with my Canon.
> The silly pics of Tricia and I from the last video were actually all taken with my MacBook Pro (way cool "laptop" with a built-in camera, for all you PC people) without any post-editing...Macs are just cool like that.
Nate
Tricia is having a good day again. She's busy at the moment checking emails and other stuffs.
Gwyneth is doing well. I just went down and took her birthday pictures, which I'll post later. She's doing great on the CPAP. The MRSA swab was negative...three more and we'll be back in a normal room (which I like a lot better).
Q&A:
> Tricia will probably not make it home before her transplant...she would have to be completely off the vent for that to happen, and the risk of infection and such is just too great of a risk either way.
> Tricia tells me that her trach does not hurt her at all. It's a little uncomfortable at times, and it's certainly restricting while she's attached to the vent. It's been a great thing for her so far.
> I'm actually just using the simple HP photo editing software that came with one of my printers or cameras or something...the only thing I'm really doing is a little cropping, a little antiquing, and/or a little "soft glow".
> Most of the time, I'm using a EFS 18-55mm lens with my Canon.
> The silly pics of Tricia and I from the last video were actually all taken with my MacBook Pro (way cool "laptop" with a built-in camera, for all you PC people) without any post-editing...Macs are just cool like that.
Nate
Monday, February 18, 2008
1:15pm Update & Q&A
Tricia is having a good day. Her fever from yesterday is gone. She's got some new clothes on, which make anyone feel good. She's sitting by the window, about to go on another trach collar trial and do some PT.
We're praying that Tricia will be listed tomorrow. We'd really appreciate it if you'd join us.
Gwyneth was moved to CPAP yesterday and is doing great so far. I got to hold her last night while they changed her incubator. They're increasing her feedings today, which is also great news.
A short Q&A:
> I actually don't drink caffeine...I never drink coffee and I only have about 1 soda w/caffeine a week.
> "Bump" means that I'm moving an older post up to the top of the list.
> Actually, Tricia's nurses do have the freedom to bump and rearrange a few of the things they do to/for her so that she can get a little more sleep at times...some do it, and others don't...I'm sure this might be different at other hospitals, but that's how it works here (and we're thankful for those nurses who are willing to do it).
I'll post some new pics later today when I have a better connection.
Thanks!
Nate
We're praying that Tricia will be listed tomorrow. We'd really appreciate it if you'd join us.
Gwyneth was moved to CPAP yesterday and is doing great so far. I got to hold her last night while they changed her incubator. They're increasing her feedings today, which is also great news.
A short Q&A:
> I actually don't drink caffeine...I never drink coffee and I only have about 1 soda w/caffeine a week.
> "Bump" means that I'm moving an older post up to the top of the list.
> Actually, Tricia's nurses do have the freedom to bump and rearrange a few of the things they do to/for her so that she can get a little more sleep at times...some do it, and others don't...I'm sure this might be different at other hospitals, but that's how it works here (and we're thankful for those nurses who are willing to do it).
I'll post some new pics later today when I have a better connection.
Thanks!
Nate
Friday, February 15, 2008
Update and Q&A
Tricia has had a good day today so far. No repercussions from her surgery yesterday. She's on the bike right now getting some PT. We're going to try to visit Gwyneth together this afternoon.
Gwyneth is doing well today. I was able to hold her again yesterday for over an hour, this time with my shirt on and her wrapped in a blanket. She has some VDay balloons and cards in and around her bed from her parents and grandparents and a few others. Below is a pic of the card I found for her from Tricia and I...click on the image to read what's on the front..."perfect" her mother told me...
Here's the stuffed, singing, moving dragon that Tricia begged me for...
Q&A:
> Tricia is still not allowed to drink anything.
> Some of you have mentioned a chalk/milk swallow test. That is called a Barium Swallow and is different than the swallow test Tricia did the other day. She has had to do the barium a few times in the past, and it's probably the thing she has hated the most out of everything she's ever had to do.
> Tricia's normal day looks like:
Wake up sometime between 5 and 8am (depending on the nurse and her willingness to let her sleep) to receive meds, "breakfast", check vitals, etc.
Sleep some more and wake up again for the doctor's rounds, usually around 9am.
Sleep some more until around 10/11am.
Receive some more meds.
Do some PT around 12/1pm.
"Eat" "lunch".
Do some more PT...maybe ride the bike.
Do a trach collar trial for a few hours.
Check email.
Receive some more meds.
Do some more PT...maybe take a walk around the hall.
"Eat" "dinner" around 6pm.
Watch some tv.
Receive some more meds.
"Eat".
Fall asleep around 10/11pm.
> Meka is not allowed in to see Tricia because she's probably got lots of bugs and stuffs all over her.
> "PS. I love you" is something I've been telling Tricia since we first started dating...I often call her "PattySue"...we haven't seen the movie, but have thought of a lawsuit...
> I get most of my cool fonts on the videos/etc. from DaFont.com and UrbanFonts.com.
> When I said that comments about my hair were cruel, I was joking...
I've had several new people ask me CF and Transplant related questions that I've already answered. If you do a little search on this blog under "labels" over their on the right of your screen you'll probably find the answer to your questions.
Nate
Gwyneth is doing well today. I was able to hold her again yesterday for over an hour, this time with my shirt on and her wrapped in a blanket. She has some VDay balloons and cards in and around her bed from her parents and grandparents and a few others. Below is a pic of the card I found for her from Tricia and I...click on the image to read what's on the front..."perfect" her mother told me...
Here's the stuffed, singing, moving dragon that Tricia begged me for...Q&A:
> Tricia is still not allowed to drink anything.
> Some of you have mentioned a chalk/milk swallow test. That is called a Barium Swallow and is different than the swallow test Tricia did the other day. She has had to do the barium a few times in the past, and it's probably the thing she has hated the most out of everything she's ever had to do.
> Tricia's normal day looks like:
Wake up sometime between 5 and 8am (depending on the nurse and her willingness to let her sleep) to receive meds, "breakfast", check vitals, etc.
Sleep some more and wake up again for the doctor's rounds, usually around 9am.
Sleep some more until around 10/11am.
Receive some more meds.
Do some PT around 12/1pm.
"Eat" "lunch".
Do some more PT...maybe ride the bike.
Do a trach collar trial for a few hours.
Check email.
Receive some more meds.
Do some more PT...maybe take a walk around the hall.
"Eat" "dinner" around 6pm.
Watch some tv.
Receive some more meds.
"Eat".
Fall asleep around 10/11pm.
> Meka is not allowed in to see Tricia because she's probably got lots of bugs and stuffs all over her.
> "PS. I love you" is something I've been telling Tricia since we first started dating...I often call her "PattySue"...we haven't seen the movie, but have thought of a lawsuit...
> I get most of my cool fonts on the videos/etc. from DaFont.com and UrbanFonts.com.
> When I said that comments about my hair were cruel, I was joking...
I've had several new people ask me CF and Transplant related questions that I've already answered. If you do a little search on this blog under "labels" over their on the right of your screen you'll probably find the answer to your questions.
Nate
Saturday, February 9, 2008
Update and Q&A
Tricia did get to see Gwyneth yesterday on her birthday...the nurses dressed Gwyneth and wrapped her and put a bow in her hair just for her mommy to see (pics coming soon).
Her fever has been low-grade for the past few days. We haven't hear yet about the latest blood culture/lab. She has some friends and family visiting today, and that always makes for a good and tiring day. She's been sleeping incredibly well.
She has had three episodes in the past week where she coughed up a small amount of blood. This is not uncommon for her (and other CFers), but it's still not the greatest thing in the world. It probably doesn't mean anything more than her throat/lungs are irritated by all of the coughing and suctioning, and that the Heparin is doing it's job, but it's no fun.
Gwyneth is doing wonderfully. She was placed back on the vent a few days ago simply because she wore herself out on the CPAP. She's doing most excellent the past few days, and should be placed back on CPAP in the next few days.
Also, she is now weighing in at a whopping 1lb 10.5oz, which means she's gained about 7oz in the past week. This is great news. I can actually see that she's gotten bigger in the past several days. The nurses continue to fight over who gets her every day and night. :)
Agnes went home for a long weekend (which she more than deserves), and my mom is here in her stay, which is very nice (she does my laundry for me...thanks, mom!) They've both been working hard at writing and sending thank-you cards out to those who have sent gifts (which is great because Tricia just can't seem to get that done right now for some reason...).
I've been able to hang with some guy friends the past few days away from the hospital for a few hours, which has been great. It's hard to be your full-self inside the walls of a hospital.
BJ tells me today that things are about the same for Nalin. They are very thankful for your thoughts and prayers.
Q&A:
> I can touch Gwyneth whenever I want to, although I'm very careful as Tricia is still on contact isolation and I don't want to transmit something between them. I usually just touch her when I first arrive at the hospital after a shower before seeing Tricia. I am able to hold her every other day, as long as she's stable, which she wasn't the past few days going from CPAP to Vent. I should be able to hold her in just a bit.
> Tricia's diabetes has only come on with the pregnancy. CF patients are very prone to diabetes, as are transplant patients (due to the large amount of steroids). She is not a good candidate for the pancreas transplant.
> Gwyneth's face is very expressive, but I'm told that she doesn't really have conscious control over her motions. She doesn't smile yet, at least not on purpose. She does yawn.
> My sleep schedule is back to normal (thanks to Tricia's great sleep), but my days have been busy, so I haven't been able to post as much as I'd like to.
> Tricia basically just told me about her CF just like she told me about any part of the rest of her life. I didn't learn all of the details until much later, but it was something that we talked about from the beginning.
> Tricia is not a candidate for a lobe transplant from living donors. (and, she's adopted, so we know nothing about her blood relatives)
Nate
PS. If I don't answer your specific question, it's either because I don't know the answer, I don't want to answer, or I've already answered (probably several times). :)
Her fever has been low-grade for the past few days. We haven't hear yet about the latest blood culture/lab. She has some friends and family visiting today, and that always makes for a good and tiring day. She's been sleeping incredibly well.
She has had three episodes in the past week where she coughed up a small amount of blood. This is not uncommon for her (and other CFers), but it's still not the greatest thing in the world. It probably doesn't mean anything more than her throat/lungs are irritated by all of the coughing and suctioning, and that the Heparin is doing it's job, but it's no fun.
Gwyneth is doing wonderfully. She was placed back on the vent a few days ago simply because she wore herself out on the CPAP. She's doing most excellent the past few days, and should be placed back on CPAP in the next few days.
Also, she is now weighing in at a whopping 1lb 10.5oz, which means she's gained about 7oz in the past week. This is great news. I can actually see that she's gotten bigger in the past several days. The nurses continue to fight over who gets her every day and night. :)
Agnes went home for a long weekend (which she more than deserves), and my mom is here in her stay, which is very nice (she does my laundry for me...thanks, mom!) They've both been working hard at writing and sending thank-you cards out to those who have sent gifts (which is great because Tricia just can't seem to get that done right now for some reason...).
I've been able to hang with some guy friends the past few days away from the hospital for a few hours, which has been great. It's hard to be your full-self inside the walls of a hospital.
BJ tells me today that things are about the same for Nalin. They are very thankful for your thoughts and prayers.
Q&A:
> I can touch Gwyneth whenever I want to, although I'm very careful as Tricia is still on contact isolation and I don't want to transmit something between them. I usually just touch her when I first arrive at the hospital after a shower before seeing Tricia. I am able to hold her every other day, as long as she's stable, which she wasn't the past few days going from CPAP to Vent. I should be able to hold her in just a bit.
> Tricia's diabetes has only come on with the pregnancy. CF patients are very prone to diabetes, as are transplant patients (due to the large amount of steroids). She is not a good candidate for the pancreas transplant.
> Gwyneth's face is very expressive, but I'm told that she doesn't really have conscious control over her motions. She doesn't smile yet, at least not on purpose. She does yawn.
> My sleep schedule is back to normal (thanks to Tricia's great sleep), but my days have been busy, so I haven't been able to post as much as I'd like to.
> Tricia basically just told me about her CF just like she told me about any part of the rest of her life. I didn't learn all of the details until much later, but it was something that we talked about from the beginning.
> Tricia is not a candidate for a lobe transplant from living donors. (and, she's adopted, so we know nothing about her blood relatives)
Nate
PS. If I don't answer your specific question, it's either because I don't know the answer, I don't want to answer, or I've already answered (probably several times). :)
Tuesday, February 5, 2008
Update and Q&A
Tricia got about 10 hours of sleep last night! She's already getting sleepy at 8:30 tonight. She sill has some catching up to do. She was feeling a little sick earlier, but is feeling better now. She received a blood transfusion today because she has been Anemic for several days...this will help prepare her for the transplant.
No word from the transplant team today, so we'll assume that we haven't been listed...
Gwyneth was back on the CPAP today...didn't do so hot on the nasal cannula last night, but that's not surprising at all at her age. Other than that, she's having a great day.
Time for some more Q&A!
> I use a Mac software called iMovie to make the videos that you've seen on this blog. As far as video editing software goes, it's junk, but it gets the job done for what I'm doing on this blog.
> When Tricia was born in 1982, the age expectancy of a CFer was in the lower 20's...the life expectancy for a CFer born today is in the mid 30's. It's because of this reason that CF has been labeled as a pediatric disease, and why it does not get nearly the exposure as other terminal diseases. So, Tricia has lived beyond her age expectancy. We have heard of a few CFers who are still alive past 50, but as I've mentioned before, every CF case is different...some are incredibly aggressive, and others are so mild they're not even diagnosed until adulthood.
> Tricia has a horrible memory for dates and times, so those of you who think she's all right about her side of our story are suckas... ;)
> We did get several weeks while Gwyneth was still in the oven to feel her kicking and moving around. Most mothers can begin to feel their baby moving around week 17. Tricia felt her for the first time on Thanksgiving day, here in the hospital.
> This blog is not one on which I want to get into deep theological discussions...that doesn't fit it's purpose, and I'm not smart enough to answer most of your questions anyway.
> I did send an email out to the K-Love contest, but only because somebody asked me to via email a few days ago. I don't listen, so if they mention our name, please let us know.
Joe and Kendra's preemie boys continue to do well. BJ and Tonya's preemie boy was having some difficulties this past weekend, but I haven't seen them in a few days. I know they would all appreciate your continued prayers.
Alice continues to do incredibly well...she was actually discharge from the hospital, which is amazing. If you want to read some great insight on what a TX patient experiences, check out Her Blog!
Thanks!
Nate
No word from the transplant team today, so we'll assume that we haven't been listed...
Gwyneth was back on the CPAP today...didn't do so hot on the nasal cannula last night, but that's not surprising at all at her age. Other than that, she's having a great day.
Time for some more Q&A!
> I use a Mac software called iMovie to make the videos that you've seen on this blog. As far as video editing software goes, it's junk, but it gets the job done for what I'm doing on this blog.
> When Tricia was born in 1982, the age expectancy of a CFer was in the lower 20's...the life expectancy for a CFer born today is in the mid 30's. It's because of this reason that CF has been labeled as a pediatric disease, and why it does not get nearly the exposure as other terminal diseases. So, Tricia has lived beyond her age expectancy. We have heard of a few CFers who are still alive past 50, but as I've mentioned before, every CF case is different...some are incredibly aggressive, and others are so mild they're not even diagnosed until adulthood.
> Tricia has a horrible memory for dates and times, so those of you who think she's all right about her side of our story are suckas... ;)
> We did get several weeks while Gwyneth was still in the oven to feel her kicking and moving around. Most mothers can begin to feel their baby moving around week 17. Tricia felt her for the first time on Thanksgiving day, here in the hospital.
> This blog is not one on which I want to get into deep theological discussions...that doesn't fit it's purpose, and I'm not smart enough to answer most of your questions anyway.
> I did send an email out to the K-Love contest, but only because somebody asked me to via email a few days ago. I don't listen, so if they mention our name, please let us know.
Joe and Kendra's preemie boys continue to do well. BJ and Tonya's preemie boy was having some difficulties this past weekend, but I haven't seen them in a few days. I know they would all appreciate your continued prayers.
Alice continues to do incredibly well...she was actually discharge from the hospital, which is amazing. If you want to read some great insight on what a TX patient experiences, check out Her Blog!
Thanks!
Nate
Sunday, February 3, 2008
Update and Q&A
After little sleep in the past 24 hours, Tricia has been sleeping now (4:29am) for about 7 hours. YEAH! She is having a few minor issues as well this past day, but I think they should be cleared up by tomorrow. Her family spent lots of time with her today, and that really made for a cheerful day for her, for which I am thankful.
Gywneth had a small setback today with her feedings, but nothing that shouldn't be resolved in the next 24 hours.
Several awesome things as well:
> She was placed on the CPAP and is doing great.
> Because of the CPAP, I was able to see her full face today (without any tubes or tape) for the very first time. She's even more beautiful than I had thought before...
> I was able to hold her again tonight, and after a rough start with her stats, she did well for about 30 minutes before they placed her back in the incubtor.
> And (this is the best for me), because she no longer has a tube down her throat, I was able to hear her voice for the very first time... Just a few tiny, quiet squeaks, but so amazing...
First, a few thoughts about a few recent comments:
> I have only heard from the professionals that the sweat test is the most reliable for determining if a child has CF. A blood test is needed to help determine the kind of CF. I understand that some of you have heard otherwise, but I can only pass on the info that I'm being given by those we trust the most.
> I think I pretty well outlined what I believe about "spiritual warfare" in This Post.
Thanks for all of the questions...I really appreciate being able to share what we're learning about everything.
> I am putting together some audio of Tricia's voice from video recordings from the past to use in Gwyneth's incubator. Tricia's voice is off and on with the trach, and even when it's there it doesn't sound much like her normal voice.
> We are planning on using sign language with Gwyneth because most infants can learn to communicate long before they can learn to talk. Sign language is one of the ways to accomplish this, and it will help her development overall. You can learn more Here.
> Tricia is not able to journal/blog at this time. She's been spending a few minutes each day trying to catch up with her internet life, but it's coming slow. I can promise you that, when this is all over with, she'll have plenty to say.
> Gwyenth's milk is coming from a local breast milk bank. I've been told that there are only 6 banks like it in the states, and you must be close enough to a bank in order to receive milk.
Finally, I've been asked lots of questions about my photography "skills"...here's what I have to say about that:
I've always loved photography. I got my first really nice Canon when I was a freshman in college. I used to take lots of landscape shots and very few portrait shots...I'll try to post some of my favorites from my past sometime. I lost the time and energy to shoot when we got married. Tricia bought me a Digital Canon Rebel XT this past Christmas. Here are a few things I do know about photography that have helped me that past several weeks:
> Go digital and take lots of pictures...I'm lucky if 1 out of every 3 pictures is one I really like.
> Disposable cameras can take amazing pictures.
> Composition is everything. If you're taking a picture of a person, fill the picture with that person and not with other stuff (see the first picture below). If you're taking a picture for perspective, fill the picture with the things you need to achieve that perspective (see the second picture below).
> Lighting is everything. A tip for you future NICU families...the UV light for jaundice takes AMAZING pictures with GREAT details. Fortunately, Gwyneth only needed the UV for about 7 days, but I am thankful that I took advantage of it (see pic below).
> Use lots of crooked angles. Pictures that totally square can get really boring...taking a picture at an angle can add a lot of visual appeal (see pic below).
> Take pictures of the things you love. If my pictures of Gwyneth and Tricia are any good, it's only because I'm in love.
Thanks!
Nate
(I was up all night and posted several times, so read below)
Gywneth had a small setback today with her feedings, but nothing that shouldn't be resolved in the next 24 hours.
Several awesome things as well:
> She was placed on the CPAP and is doing great.
> Because of the CPAP, I was able to see her full face today (without any tubes or tape) for the very first time. She's even more beautiful than I had thought before...
> I was able to hold her again tonight, and after a rough start with her stats, she did well for about 30 minutes before they placed her back in the incubtor.
> And (this is the best for me), because she no longer has a tube down her throat, I was able to hear her voice for the very first time... Just a few tiny, quiet squeaks, but so amazing...
First, a few thoughts about a few recent comments:
> I have only heard from the professionals that the sweat test is the most reliable for determining if a child has CF. A blood test is needed to help determine the kind of CF. I understand that some of you have heard otherwise, but I can only pass on the info that I'm being given by those we trust the most.
> I think I pretty well outlined what I believe about "spiritual warfare" in This Post.
Thanks for all of the questions...I really appreciate being able to share what we're learning about everything.
> I am putting together some audio of Tricia's voice from video recordings from the past to use in Gwyneth's incubator. Tricia's voice is off and on with the trach, and even when it's there it doesn't sound much like her normal voice.
> We are planning on using sign language with Gwyneth because most infants can learn to communicate long before they can learn to talk. Sign language is one of the ways to accomplish this, and it will help her development overall. You can learn more Here.
> Tricia is not able to journal/blog at this time. She's been spending a few minutes each day trying to catch up with her internet life, but it's coming slow. I can promise you that, when this is all over with, she'll have plenty to say.
> Gwyenth's milk is coming from a local breast milk bank. I've been told that there are only 6 banks like it in the states, and you must be close enough to a bank in order to receive milk.
Finally, I've been asked lots of questions about my photography "skills"...here's what I have to say about that:
I've always loved photography. I got my first really nice Canon when I was a freshman in college. I used to take lots of landscape shots and very few portrait shots...I'll try to post some of my favorites from my past sometime. I lost the time and energy to shoot when we got married. Tricia bought me a Digital Canon Rebel XT this past Christmas. Here are a few things I do know about photography that have helped me that past several weeks:
> Go digital and take lots of pictures...I'm lucky if 1 out of every 3 pictures is one I really like.
> Disposable cameras can take amazing pictures.
> Composition is everything. If you're taking a picture of a person, fill the picture with that person and not with other stuff (see the first picture below). If you're taking a picture for perspective, fill the picture with the things you need to achieve that perspective (see the second picture below).
> Lighting is everything. A tip for you future NICU families...the UV light for jaundice takes AMAZING pictures with GREAT details. Fortunately, Gwyneth only needed the UV for about 7 days, but I am thankful that I took advantage of it (see pic below).
> Use lots of crooked angles. Pictures that totally square can get really boring...taking a picture at an angle can add a lot of visual appeal (see pic below).
> Take pictures of the things you love. If my pictures of Gwyneth and Tricia are any good, it's only because I'm in love.Thanks!
Nate
(I was up all night and posted several times, so read below)
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
Wednesday, January 23, 2008
Q&A (With a Helpful Comment)
I don't have enough time to answer every question, and I encourage you to take a few minutes to do some research on your own, but here are the answers to a few questions asked recently:
> I've seen Joe & Kendra a few times, and they tell me that they and their
> I've seen Joe & Kendra a few times, and they tell me that they and their