Here are a few pics from the day.
Nate
Showing posts with label God. Show all posts
Showing posts with label God. Show all posts
Wednesday, July 2, 2008
Commitment
This past Sunday, our family participated in a parent/child dedication ceremony at church. We don't baptize infants, nor do we dedicate children by themselves. The dedication is mostly for the parents of a child. We have committed to raising Gwyneth in a home that is centered on God's love for her. My favorite part of our dedications is when we ask the entire church body to stand with us and pray, signifying that they are supporting us over the next several years in our journey together.
Here are a few pics from the day.
Nate
Here are a few pics from the day.
Nate
Monday, June 16, 2008
Negative
The results came back late this evening, and Tricia does have Post-Transplant Lymphoma. We'll be talking with the oncologists tomorrow to learn more and what the plan for treatment is.
Tricia has a few things going for her:
1) They've caught it early, which is always a good thing.
2) This is a very treatable/beatable form of cancer, perhaps even forgoing aggressive forms of chemo and other treatments.
3) There are still no signs of rejection, which makes treatment very optimistic (I'll explain more later).
4) When you've dealt with an incurable, life-shortening disease your whole life, as well as other things like diabetes and organ transplantation, cancer just doesn't seem like such a big deal as it might if Tricia were perfectly healthy otherwise. I don't say this to be flippant of cancer at all, as we know the possible severity of cancer and have friends and family who are dealing with cancer right now, a few who are dealing with serious lymphoma. But, neither Tricia or I are worried or scared about this. The doctors seem very optimistic, and, considering all Tricia has been through and still has to go through, this feels like something that God has prepared us for. We're just happy to know what it is so that we can get on with it.
Thank you for your continued prayers. To be honest, our biggest concern right now is getting Tricia out of the hospital and getting us all home ASAP. We're praying that the immediate plan does not involve more time in the hospital, especially considering that Tricia's entire family has a week of vacation planned next week on the OBX...something that Tricia has had her heart set on for nearly a year.
We'll let you know more when we can.
Thanks.
Nate
Tricia has a few things going for her:
1) They've caught it early, which is always a good thing.
2) This is a very treatable/beatable form of cancer, perhaps even forgoing aggressive forms of chemo and other treatments.
3) There are still no signs of rejection, which makes treatment very optimistic (I'll explain more later).
4) When you've dealt with an incurable, life-shortening disease your whole life, as well as other things like diabetes and organ transplantation, cancer just doesn't seem like such a big deal as it might if Tricia were perfectly healthy otherwise. I don't say this to be flippant of cancer at all, as we know the possible severity of cancer and have friends and family who are dealing with cancer right now, a few who are dealing with serious lymphoma. But, neither Tricia or I are worried or scared about this. The doctors seem very optimistic, and, considering all Tricia has been through and still has to go through, this feels like something that God has prepared us for. We're just happy to know what it is so that we can get on with it.
Thank you for your continued prayers. To be honest, our biggest concern right now is getting Tricia out of the hospital and getting us all home ASAP. We're praying that the immediate plan does not involve more time in the hospital, especially considering that Tricia's entire family has a week of vacation planned next week on the OBX...something that Tricia has had her heart set on for nearly a year.
We'll let you know more when we can.
Thanks.
Nate
Thursday, June 12, 2008
Strike Two
They were able to do a biopsy during the bronch, but it looks like the samples they pulled are useless, so they can't yet determine if it is cancer or something else. This means that Tricia will be scheduled for a surgical biopsy, hopefully no later than the first of next week.
This also means that she's basically in the hospital for literally no reason until then, except, to be discharged, even if we were to stay in Durham, means probably pushing a surgery date further back, which isn't the best option. All they'll do over the next few days is check her vitals and give her her normal meds, which is what we do at home. She won't even have an IV.
All that to say, we're both very bummed. Being in Durham, we've discovered, is incredibly easier and more enjoyable when we're all at "home".
Thanks again for your thoughts and prayers...we'll continue waiting to see why God has us here.
Nate
This also means that she's basically in the hospital for literally no reason until then, except, to be discharged, even if we were to stay in Durham, means probably pushing a surgery date further back, which isn't the best option. All they'll do over the next few days is check her vitals and give her her normal meds, which is what we do at home. She won't even have an IV.
All that to say, we're both very bummed. Being in Durham, we've discovered, is incredibly easier and more enjoyable when we're all at "home".
Thanks again for your thoughts and prayers...we'll continue waiting to see why God has us here.
Nate
Wednesday, June 11, 2008
Update (10:10pm, Wednesday)
First, thank you so much for your prayers and encouragement the past few days. To see well over 800 people leave a comment saying that they're thinking of us today is incredibly encouraging, and we deeply appreciate it (plus, that sets a new CFHusband record for number of comments under one post!)!
Gwyneth is doing well...up to 6lbs 3.5oz as of yesterday afternoon! Her O2 saturation and heart rate are good, but not great. Basically, her body is growing faster than her lungs, making them work a little too hard, as they are still underdeveloped. She is now on an incredibly small amount (so small, that I can't feel or hear it come out of the tank) of O2 (via a nasal cannula) for most of the day/night, just to give her lungs a little less to do on their own. She's also back on a med that she was taken off of a few weeks ago that should help as well. We've already noticed a visible difference since yesterday afternoon, which is good.
The docs say she looks great. It's important for her lungs to continue to develop, and for her to get this extra help from the O2 and meds because, if she's expending less energy breathing, she's using more energy eating and growing.
Tricia had her PET Scan this afternoon. Nothing too scary about it except for being told to clear your mind for a few hours while lying awake in a very small space... The results of the scan should show any tumors that might be forming in her body. I believe we'll hear about the results tomorrow.
She'll have a bronchoscopy and, hopefully, a successful biopsy of her lungs. If the biopsy is not successful, they will have to do a surgical biopsy, which means cutting her open, which she would is very apprehensive about (so, please, pray that the bronch biopsy is successful). I believe that we should have a fairly comprehensive diagnosis once the results of the scan, bronch and biopsy are all in, which may not be until Friday.
She was admitted early this evening, and is already sleeping in her hospital bed. She's bummed because she expected to be on her normal inpatient floor (which feels like home to us, and where they know her and her needs better), but there were no empty beds, so she's on am unfamiliar floor. I'm spending this first night with her, while Agnes (Tricia's mom) is with Gwyneth back at the hotel. You can pray that we all sleep well tonight and that Tricia will be moved to her favorite floor.
Tricia feels great, and, if the doctors weren't telling us that something was wrong, we would have no idea. Although she has EBV (mono), it's not the same as if you or I were to have what we know as mono. She has yet to be given an IV or anything else that she wouldn't have at home, and we haven't really been told what will happen over the next few days if she is diagnosed with something, which basically means that we're really not sure why Tricia isn't sleeping in her own bed tonight...at least, a little frustrating.
As I walked through the hospital lobby earlier this evening and entered the elevator, I thought to myself, for a brief second, that I should stop by the NICU on the way up to Tricia's room to see Gwyneth. Just a few minutes later, as I entered Tricia's room, I almost stopped myself because I didn't feel the gown on my back and gloves on my hands. And just now, as the nurse walked out of the room, I noticed how skinny Tricia's charts were (compared to the encyclopedia she ended up with by the end of her last stay). I can distinctly remember that last time I used the label "hospital" for one of my posts, thinking that it would be a long time before I added another post to that label... All that to say, it feels very strange being here now, especially considering how far Tricia and Gwyneth are removed, medically, from their last times as patients here.
We are praying with you that our stay will be short because the diagnosis will come back negative for anything major. We're also praying that God will show us why we are here this time...the last stay, while incredibly long and exhausting, still felt natural for us in a lot of ways. This visit simply does not.
In the meantime, we'll be patient and continue to know that we're exactly where God wants us, even if it makes no sense right now. Thanks again for your prayers, and thanks for your continued prayers over the next few days as we wait to hear the news.
Nate
Gwyneth is doing well...up to 6lbs 3.5oz as of yesterday afternoon! Her O2 saturation and heart rate are good, but not great. Basically, her body is growing faster than her lungs, making them work a little too hard, as they are still underdeveloped. She is now on an incredibly small amount (so small, that I can't feel or hear it come out of the tank) of O2 (via a nasal cannula) for most of the day/night, just to give her lungs a little less to do on their own. She's also back on a med that she was taken off of a few weeks ago that should help as well. We've already noticed a visible difference since yesterday afternoon, which is good.
The docs say she looks great. It's important for her lungs to continue to develop, and for her to get this extra help from the O2 and meds because, if she's expending less energy breathing, she's using more energy eating and growing.
Tricia had her PET Scan this afternoon. Nothing too scary about it except for being told to clear your mind for a few hours while lying awake in a very small space... The results of the scan should show any tumors that might be forming in her body. I believe we'll hear about the results tomorrow.
She'll have a bronchoscopy and, hopefully, a successful biopsy of her lungs. If the biopsy is not successful, they will have to do a surgical biopsy, which means cutting her open, which she would is very apprehensive about (so, please, pray that the bronch biopsy is successful). I believe that we should have a fairly comprehensive diagnosis once the results of the scan, bronch and biopsy are all in, which may not be until Friday.
She was admitted early this evening, and is already sleeping in her hospital bed. She's bummed because she expected to be on her normal inpatient floor (which feels like home to us, and where they know her and her needs better), but there were no empty beds, so she's on am unfamiliar floor. I'm spending this first night with her, while Agnes (Tricia's mom) is with Gwyneth back at the hotel. You can pray that we all sleep well tonight and that Tricia will be moved to her favorite floor.
Tricia feels great, and, if the doctors weren't telling us that something was wrong, we would have no idea. Although she has EBV (mono), it's not the same as if you or I were to have what we know as mono. She has yet to be given an IV or anything else that she wouldn't have at home, and we haven't really been told what will happen over the next few days if she is diagnosed with something, which basically means that we're really not sure why Tricia isn't sleeping in her own bed tonight...at least, a little frustrating.
As I walked through the hospital lobby earlier this evening and entered the elevator, I thought to myself, for a brief second, that I should stop by the NICU on the way up to Tricia's room to see Gwyneth. Just a few minutes later, as I entered Tricia's room, I almost stopped myself because I didn't feel the gown on my back and gloves on my hands. And just now, as the nurse walked out of the room, I noticed how skinny Tricia's charts were (compared to the encyclopedia she ended up with by the end of her last stay). I can distinctly remember that last time I used the label "hospital" for one of my posts, thinking that it would be a long time before I added another post to that label... All that to say, it feels very strange being here now, especially considering how far Tricia and Gwyneth are removed, medically, from their last times as patients here.
We are praying with you that our stay will be short because the diagnosis will come back negative for anything major. We're also praying that God will show us why we are here this time...the last stay, while incredibly long and exhausting, still felt natural for us in a lot of ways. This visit simply does not.
In the meantime, we'll be patient and continue to know that we're exactly where God wants us, even if it makes no sense right now. Thanks again for your prayers, and thanks for your continued prayers over the next few days as we wait to hear the news.
Nate
Monday, June 9, 2008
Plans
It seems that our story is far from over.
We received a call from Duke this past Wednesday that the Epstein Virus (Mononucleosis) has been found in Tricia's system. This in and of itself is not necessarily a horrible thing, but on Thursday we received another call telling us that there are some growths in Tricia's lungs. These growths could be the first signs of a common type of cancer called Post-Transplant Lymphoproliferative Disorder that develops in post-transplant patients, brought on by the mono virus because of the immunosuppressant drugs Tricia is now taking.
We'll be driving to Duke early Tuesday (tomorrow) morning to get a clinic visit in for Gwyneth, who has been breathing a little heavy and fast the past few days. It does not appear to be affecting her in any way, but it's something that needs to be checked out just in case.
Tricia has a PET Scan early Wednesday morning. She will probably also have a biopsy (where they'll remove a small part of her lungs). Hopefully this can be done via a bronchoscope. If not, they may need to perform a surgical biopsy. She'll most likely be admitted as an in-patient on Wednesday as well, hopefully for no more than a few days.
They should have a diagnosis within 24 hours of the biopsy.
If she indeed is diagnosed with PTLD, they will consult their oncology specialists to take over administering the Rituximab, which it is generally given weekly for a month or so.
It could all just be a fungus infection, but it appears pretty suspicious for the PTLD.
This is not something we were aware could happen (not that anything really surprises us anymore), and to be honest, we really don't know much about it or what could happen from here. The idea of going back to Duke and being in the hospital is not something that we really want to think about right now, as it really messes with our plans. We're not sure how long we'll be in Durham, but we're hoping we'll be back within a week.
So, once again, we find ourselves in an unfamiliar, and very scary place. But, if we have learned anything during this incredible journey, we’ve learned to simply trust God.
When I am at my weakest, He makes His strength most evident.
I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome. My plans are only worth anything if they are God's plans, and thankfully, His plans are always perfect.
Jeremiah 29:11 (The Message)
I'll show up and take care of you as I promised
and bring you back home.
I know what I'm doing.
I have it all planned out -
plans to take care of you,
not abandon you,
plans to give you the future you hope for.
We have no reason to doubt that God is still in control. Thanks for your thoughts and prayers this week. I'll let you know when we know more about both of the girls.
Thanks!
Nate
We received a call from Duke this past Wednesday that the Epstein Virus (Mononucleosis) has been found in Tricia's system. This in and of itself is not necessarily a horrible thing, but on Thursday we received another call telling us that there are some growths in Tricia's lungs. These growths could be the first signs of a common type of cancer called Post-Transplant Lymphoproliferative Disorder that develops in post-transplant patients, brought on by the mono virus because of the immunosuppressant drugs Tricia is now taking.
We'll be driving to Duke early Tuesday (tomorrow) morning to get a clinic visit in for Gwyneth, who has been breathing a little heavy and fast the past few days. It does not appear to be affecting her in any way, but it's something that needs to be checked out just in case.
Tricia has a PET Scan early Wednesday morning. She will probably also have a biopsy (where they'll remove a small part of her lungs). Hopefully this can be done via a bronchoscope. If not, they may need to perform a surgical biopsy. She'll most likely be admitted as an in-patient on Wednesday as well, hopefully for no more than a few days.
They should have a diagnosis within 24 hours of the biopsy.
If she indeed is diagnosed with PTLD, they will consult their oncology specialists to take over administering the Rituximab, which it is generally given weekly for a month or so.
It could all just be a fungus infection, but it appears pretty suspicious for the PTLD.
This is not something we were aware could happen (not that anything really surprises us anymore), and to be honest, we really don't know much about it or what could happen from here. The idea of going back to Duke and being in the hospital is not something that we really want to think about right now, as it really messes with our plans. We're not sure how long we'll be in Durham, but we're hoping we'll be back within a week.
So, once again, we find ourselves in an unfamiliar, and very scary place. But, if we have learned anything during this incredible journey, we’ve learned to simply trust God.
When I am at my weakest, He makes His strength most evident.
I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome. My plans are only worth anything if they are God's plans, and thankfully, His plans are always perfect.
Jeremiah 29:11 (The Message)
I'll show up and take care of you as I promised
and bring you back home.
I know what I'm doing.
I have it all planned out -
plans to take care of you,
not abandon you,
plans to give you the future you hope for.
We have no reason to doubt that God is still in control. Thanks for your thoughts and prayers this week. I'll let you know when we know more about both of the girls.
Thanks!
Nate
Thursday, May 29, 2008
The Next Big Thing
Now that we've got a good idea or when we'll be back home on the OBX, the next big thing for us is to find a house to buy. It's a buyers market on the OBX just like the rest of the country, but it's still incredibly difficult to find something that fits our needs in our price range. Renting is something that has worked well for us in the past, but for several reasons, we really need to go ahead and take the plunge.
We've been saving while looking off and on for nearly two years without much luck. The OBX is a resort community, with one of the highest priced housing markets in the country. Just for kicks, we looked at housing prices here in Durham, and we could easily purchase a brand new house twice as big for about 3/4 the cost as anything even remotely comparable back home.
Because of Tricia's health, as well as Gwyneth's current health, there are some pretty specific needs we have with housing...
> We need something newer that doesn't have the dust and mold, etc. that most older houses have. We wouldn't mind buying something older that needed some renovations, but anything you tear up has the potential of stirring up stuff that wouldn't be good for the girls to be breathing.
> We need something without carpet. Carpet tends to trap all that stuff I mentioned above.
> We'd prefer something that's not on stilts as Tricia will have difficulty walking up stairs when her health is not the best. If you know anything about the OBX, you know this alone will be difficult to find.
Along with the house, we'll also need to purchase some new furniture. Most of what we have (sofas, chairs, mattresses) is very old and used, and carries lots of that bad stuff I mentioned above.
All of the above are things that we've decided to make a priority in our lives. Many transplant patients choose to not take these same precautions, and it's no guarantee that these things will improve Tricia's quality and quantity of life, but it should help.
Anyway, we'd love to have your prayers with us about all of this. We know that God will provide, as He has not yet given us a single reason to doubt Him. We'd love to be in something by the end of the summer, and, in the meantime, we'll be living with my parents (who are excited to have us...but I'm sure would also like us to be out soon as they're trying to sell their house).
(And, because I know people will ask, no, we won't use Tricia's trust fund to help buy a house)
Thanks!
Nate
We've been saving while looking off and on for nearly two years without much luck. The OBX is a resort community, with one of the highest priced housing markets in the country. Just for kicks, we looked at housing prices here in Durham, and we could easily purchase a brand new house twice as big for about 3/4 the cost as anything even remotely comparable back home.
Because of Tricia's health, as well as Gwyneth's current health, there are some pretty specific needs we have with housing...
> We need something newer that doesn't have the dust and mold, etc. that most older houses have. We wouldn't mind buying something older that needed some renovations, but anything you tear up has the potential of stirring up stuff that wouldn't be good for the girls to be breathing.
> We need something without carpet. Carpet tends to trap all that stuff I mentioned above.
> We'd prefer something that's not on stilts as Tricia will have difficulty walking up stairs when her health is not the best. If you know anything about the OBX, you know this alone will be difficult to find.
Along with the house, we'll also need to purchase some new furniture. Most of what we have (sofas, chairs, mattresses) is very old and used, and carries lots of that bad stuff I mentioned above.
All of the above are things that we've decided to make a priority in our lives. Many transplant patients choose to not take these same precautions, and it's no guarantee that these things will improve Tricia's quality and quantity of life, but it should help.
Anyway, we'd love to have your prayers with us about all of this. We know that God will provide, as He has not yet given us a single reason to doubt Him. We'd love to be in something by the end of the summer, and, in the meantime, we'll be living with my parents (who are excited to have us...but I'm sure would also like us to be out soon as they're trying to sell their house).
(And, because I know people will ask, no, we won't use Tricia's trust fund to help buy a house)
Thanks!
Nate
Thursday, May 22, 2008
Adoption and Offenses
Unfortunately, it's apparent to me that I need to clarify something I said in my Last Post (the one about the Chapman family). But, I've been meaning to write a few things about adoption, so this gives me a good excuse.
A few people have commented and emailed me about my use of the word "adopted" to identify the Chapman's youngest daughter, apparently having been, at least, slightly offended by my choice of words.
Firstly, I meant no offense. I doubt that anyone believes I purposely meant to offend, but just in case...
As most of you already know, Tricia is adopted. I also have several other family members and many, many friends who are adopted/adoptees/adopting. In fact, we were seriously considering adoption before Gwyneth came along, and may still consider it in the future. Tricia (and her family) are very open about the adoption of three of their six children...in fact, Tricia's adoption is a HUGE part of her story and our story.
In my humble opinion, adoption is one of the most beautiful acts of love that we as humans can show to anyone. It is, perhaps, the most incredibly tangible reflection of the love of God we can witness on this earth (as He has chosen to "adopt" us into His kingdom), and I know that Tricia and so many others use their stories of adoption to show the story of God to others, just as the Chapman family has done. Even if you don't believe in God, it is always an incredible gift of love and life. I respect that some choose to keep adoption a secret (when it is possible), but I don’t understand it, especially in light of the incredible miracle that it truly is.
I also recognize that there are a lot of adoptive families who read my blog every day. My hope is, by recognizing that Maria is adopted, even those who aren't familiar with the Chapman family will take the time to stop and pray/think about them. I also pray that those who have never given adoption much thought might see this story and consider the miracle that it is.
Perhaps, with posting the picture of the Chapman family (which I added to the post later), it was unnecessary to specifically spell it out, but I consider it an important part of their lives, and an important reason to pray for them now. I can only imagine that the loss of any child is too difficult for words.
I find it discouraging that people are so easily offended (several other people left comments like your email under that post) when my post was meant to do nothing more than ask that you remember the Chapman family. I am not hurt or offended, but, I also continue to find it amazing that every single one of my posts has the potential make somebody feel offended...I've even had a few angry comments/emails about my pictures-only posts... The only way for me not to offend anyone on this blog to have never started it in the first place, which of course, is not something I'm sorry for.
I’ll be the first to stand in line and say that I’m offended by things that weren't meant to be offensive, and I’m attempting to be more consistent in making the choice to not be offended (because, most of the time, we're only offended because we choose to be).
Again, I meant no offense, and I took lengths to make sure that I posted about the Chapmans with sensitivity. I am sorry that a few of you were offended by my words, or least felt enough emotion to tell me about it. I hope you’ll understand my position and motives, and that you’ll consider thinking the best of me next time you’re tempted to be offended by something I write.
To all those adoptive families who read my blog, thank you so much. Without adoption, neither Tricia nor Gwyneth would be in my life right now.
Thanks!
Nate
A few people have commented and emailed me about my use of the word "adopted" to identify the Chapman's youngest daughter, apparently having been, at least, slightly offended by my choice of words.
Firstly, I meant no offense. I doubt that anyone believes I purposely meant to offend, but just in case...
As most of you already know, Tricia is adopted. I also have several other family members and many, many friends who are adopted/adoptees/adopting. In fact, we were seriously considering adoption before Gwyneth came along, and may still consider it in the future. Tricia (and her family) are very open about the adoption of three of their six children...in fact, Tricia's adoption is a HUGE part of her story and our story.
In my humble opinion, adoption is one of the most beautiful acts of love that we as humans can show to anyone. It is, perhaps, the most incredibly tangible reflection of the love of God we can witness on this earth (as He has chosen to "adopt" us into His kingdom), and I know that Tricia and so many others use their stories of adoption to show the story of God to others, just as the Chapman family has done. Even if you don't believe in God, it is always an incredible gift of love and life. I respect that some choose to keep adoption a secret (when it is possible), but I don’t understand it, especially in light of the incredible miracle that it truly is.
I also recognize that there are a lot of adoptive families who read my blog every day. My hope is, by recognizing that Maria is adopted, even those who aren't familiar with the Chapman family will take the time to stop and pray/think about them. I also pray that those who have never given adoption much thought might see this story and consider the miracle that it is.
Perhaps, with posting the picture of the Chapman family (which I added to the post later), it was unnecessary to specifically spell it out, but I consider it an important part of their lives, and an important reason to pray for them now. I can only imagine that the loss of any child is too difficult for words.
I find it discouraging that people are so easily offended (several other people left comments like your email under that post) when my post was meant to do nothing more than ask that you remember the Chapman family. I am not hurt or offended, but, I also continue to find it amazing that every single one of my posts has the potential make somebody feel offended...I've even had a few angry comments/emails about my pictures-only posts... The only way for me not to offend anyone on this blog to have never started it in the first place, which of course, is not something I'm sorry for.
I’ll be the first to stand in line and say that I’m offended by things that weren't meant to be offensive, and I’m attempting to be more consistent in making the choice to not be offended (because, most of the time, we're only offended because we choose to be).
Again, I meant no offense, and I took lengths to make sure that I posted about the Chapmans with sensitivity. I am sorry that a few of you were offended by my words, or least felt enough emotion to tell me about it. I hope you’ll understand my position and motives, and that you’ll consider thinking the best of me next time you’re tempted to be offended by something I write.
To all those adoptive families who read my blog, thank you so much. Without adoption, neither Tricia nor Gwyneth would be in my life right now.
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, May 18, 2008
Update
We are loving having Gwyneth home with us! It's been amazing to see the timing of everything. Had she been discharged earlier, Tricia would have been too weak to do much with her. If she were discharged closer to when we are hoping to go home to the OBX, we wouldn't have all of this time to spend focused on her. God continues to bless us.
The trip home was very good. A video camera met us on our way out, and I've heard rumors that we were on ABC11 again, but I missed it and haven't found it yet on the website (I'll let you know if I do find it). Gwyneth was sleeping by the time we made it to the car, and she slept all the way home.
The whole first 24 hours was a little strange as both Tricia and I kept consciously looking/feeling for all of the monitor feeds that have been strapped to her for all of those weeks...it's incredible to be able to pick her up and carry her around anywhere we want to. When we got home, I sat in the glider with her and started crying.
She came home with several meds and a few breathing treatments. Everything is to help her as she continues to catch up with her development. She has what is called "Chronic Lung Disease", which basically means that her lungs are still underdeveloped (for a newborn 4+ weeks after the due-date), a very common thing for a micro-preemie. It sounds a lot worse than it is...she has a little trouble catching her breath when she's very active, and should grow out of it within a few years. It should have no affect on her continued development.
She has breathing treatments just like Tricia did with her CF, with some of the same drugs that Tricia has been on. She should hopefully be done with the breathing treatments soon. (and, because I know somebody's going to ask...again, Gwyneth does NOT have CF)
All that means that there is a little more to remember to do than with a normal infant. All of her meds are liquids that are mixed in with her food. She's eating ad lib, which is about every three hours. She was transitioned completely off donor breast milk and onto formula over her last few weeks in the NICU, and other than a little gas (which is also normal), she is doing great with her feedings.
I've been feeding Gwyneth throughout the night, letting Tricia get the sleep she needs to continue recovering, and for the most part, she is sleeping well and letting us get plenty of sleep. Agnes (Tricia's mom) is here for a while to help as we adjust to life as three, which has been a huge help. With Gwyneth's minimal medical needs, and Tricia's continued needs, it can be a little crazy to remember everything and maintain a sense of normalcy, but it's been going very well.
We had our first outpatient Pediatric appointment on Friday. It was just the two of us as Tricia was at PT. Everything continues to look great, and her doc (who was seeing her for the first time) said she looks very developed for her history. We have another peds appointment tomorrow, and an appointment with a pediatric pulmonologist later in the week....it's actually the same pulmonologist that followed Tricia when she was a child at CHOP.
There is always a chance that, if she gets sick or has a setback, she'll be back in the hospital, but every day improves her chances of not having that happen. We are still praying that we'll be able to go home to the OBX within the next 3-4 weeks when Tricia finishes up her PT.
A few highlights from our time home...
> I took her for a walk outside our hotel the afternoon we got home (she was wide awake) and showed her things like her first tree, her first sidewalk, her first cloud, her first helicopter, and her first hot tub. She was very impressed.
> Her first trip to Babies"R"Us. She basically wanted everything...slightly annoying, but she'll learn soon enough to do that kind of thing only around the grandparents.
> Her first episode of SportsCenter...I was sure to point out Mia Hamm and the NY Mets. I'm teaching her to spit at the TV with me whenever the NY Yankees and Dallas Cowgirls make an appearance.
That's basically it. My email is still not sending, so don't sweat if you haven't heard from me in the past few days...hopefully I can get it fixed tomorrow. I'll post some pics when I get a chance.
Thanks!
Nate
The trip home was very good. A video camera met us on our way out, and I've heard rumors that we were on ABC11 again, but I missed it and haven't found it yet on the website (I'll let you know if I do find it). Gwyneth was sleeping by the time we made it to the car, and she slept all the way home.
The whole first 24 hours was a little strange as both Tricia and I kept consciously looking/feeling for all of the monitor feeds that have been strapped to her for all of those weeks...it's incredible to be able to pick her up and carry her around anywhere we want to. When we got home, I sat in the glider with her and started crying.
She came home with several meds and a few breathing treatments. Everything is to help her as she continues to catch up with her development. She has what is called "Chronic Lung Disease", which basically means that her lungs are still underdeveloped (for a newborn 4+ weeks after the due-date), a very common thing for a micro-preemie. It sounds a lot worse than it is...she has a little trouble catching her breath when she's very active, and should grow out of it within a few years. It should have no affect on her continued development.
She has breathing treatments just like Tricia did with her CF, with some of the same drugs that Tricia has been on. She should hopefully be done with the breathing treatments soon. (and, because I know somebody's going to ask...again, Gwyneth does NOT have CF)
All that means that there is a little more to remember to do than with a normal infant. All of her meds are liquids that are mixed in with her food. She's eating ad lib, which is about every three hours. She was transitioned completely off donor breast milk and onto formula over her last few weeks in the NICU, and other than a little gas (which is also normal), she is doing great with her feedings.
I've been feeding Gwyneth throughout the night, letting Tricia get the sleep she needs to continue recovering, and for the most part, she is sleeping well and letting us get plenty of sleep. Agnes (Tricia's mom) is here for a while to help as we adjust to life as three, which has been a huge help. With Gwyneth's minimal medical needs, and Tricia's continued needs, it can be a little crazy to remember everything and maintain a sense of normalcy, but it's been going very well.
We had our first outpatient Pediatric appointment on Friday. It was just the two of us as Tricia was at PT. Everything continues to look great, and her doc (who was seeing her for the first time) said she looks very developed for her history. We have another peds appointment tomorrow, and an appointment with a pediatric pulmonologist later in the week....it's actually the same pulmonologist that followed Tricia when she was a child at CHOP.
There is always a chance that, if she gets sick or has a setback, she'll be back in the hospital, but every day improves her chances of not having that happen. We are still praying that we'll be able to go home to the OBX within the next 3-4 weeks when Tricia finishes up her PT.
A few highlights from our time home...
> I took her for a walk outside our hotel the afternoon we got home (she was wide awake) and showed her things like her first tree, her first sidewalk, her first cloud, her first helicopter, and her first hot tub. She was very impressed.
> Her first trip to Babies"R"Us. She basically wanted everything...slightly annoying, but she'll learn soon enough to do that kind of thing only around the grandparents.
> Her first episode of SportsCenter...I was sure to point out Mia Hamm and the NY Mets. I'm teaching her to spit at the TV with me whenever the NY Yankees and Dallas Cowgirls make an appearance.
That's basically it. My email is still not sending, so don't sweat if you haven't heard from me in the past few days...hopefully I can get it fixed tomorrow. I'll post some pics when I get a chance.
Thanks!
Nate
Wednesday, May 14, 2008
Did You Catch This?
A comment from a wise blog reader under My Last Post:
"After reading some of the comments, I do want to point out, posting negative things here does not mean a person does or does not believe in God, just as posting positive things does not mean a person does or does not believe in God."
So true...the meanest people I have ever met in my entire life have been a few who called themselves "Christian", and some of the nicest people I've ever met have wanted nothing to do with religion. It's amazing how we who call ourselves "Christian" (myself included) think a cruel person (like the few I mentioned in the last post) must automatically also be someone who does not believe in God...
I know I can be a real jerk sometimes (probably more than I'm willing to admit).
I don't like to shove faith and God down your throat, but this is something to think about...
Nate
"After reading some of the comments, I do want to point out, posting negative things here does not mean a person does or does not believe in God, just as posting positive things does not mean a person does or does not believe in God."
So true...the meanest people I have ever met in my entire life have been a few who called themselves "Christian", and some of the nicest people I've ever met have wanted nothing to do with religion. It's amazing how we who call ourselves "Christian" (myself included) think a cruel person (like the few I mentioned in the last post) must automatically also be someone who does not believe in God...
I know I can be a real jerk sometimes (probably more than I'm willing to admit).
I don't like to shove faith and God down your throat, but this is something to think about...
Nate
Sunday, May 11, 2008
Gwyneth's Mother
Tricia...I am proud of you beyond words. You dreamed and prayed for a miracle baby, and you sacrificed nearly everything to give Gwyneth life. You amaze me with your beauty and grace through every situation. Gwyneth and I are most certainly blessed by God to call you wife and mommy, and I pray we do so for many years to come.
("In My Arms" by Plumb)
As I take the day off from blogging and spend time with my two girls, I encourage you (blog readers) to spend some time today with your family.
Thanks.
Nate
Friday, May 2, 2008
1 Month!
Today I am exactly 27 years and 1 month old! Woo-Hoo!!!
Oh yeah...way more importantly, tonight marks one month that Tricia has been breathing with her new lungs!!!!
It's amazing to see the difference one month makes. To think how far God has brought us is more than we can comprehend. So many things had to fall exactly into place in order for everything to work out just as it has, and while we give a priceless amount of credit to the Duke staff for the incredible way they have cared for my two girls and myself and our families, we know full well now, more than ever that God is real and intricately involved in every area of our lives.
God's blessings in our lives continue to amaze us, and continue to inspire us even more to do whatever we can to bless others.
Thank you so much for sharing this journey with us. May is looking to be an incredibly exciting month for us for many reasons, and we are beyond thankful for the opportunities that God continues to give us to share our story and make a difference in the world around us.
Thanks!
Nate
Oh yeah...way more importantly, tonight marks one month that Tricia has been breathing with her new lungs!!!!
It's amazing to see the difference one month makes. To think how far God has brought us is more than we can comprehend. So many things had to fall exactly into place in order for everything to work out just as it has, and while we give a priceless amount of credit to the Duke staff for the incredible way they have cared for my two girls and myself and our families, we know full well now, more than ever that God is real and intricately involved in every area of our lives.
God's blessings in our lives continue to amaze us, and continue to inspire us even more to do whatever we can to bless others.
Thank you so much for sharing this journey with us. May is looking to be an incredibly exciting month for us for many reasons, and we are beyond thankful for the opportunities that God continues to give us to share our story and make a difference in the world around us.
Thanks!Nate
Friday, April 25, 2008
Back In The Saddle Again...
Tricia began her Physical Therapy at the Center For Living yesterday! 1 day down, 22 to go!
Tricia must complete a minimum of 23 days of PT before she will be released to go home to the OBX.
She also has clinic appointments about once a week, including some other appointments, all of which may take days away from PT, so we'll probably be here for longer than the 4+ weeks that it would normally take to complete the PT.
She will go to the CFL Mon-Fri for about 4 hours every day. I'll find fun and constructive things to do around Durham while she's working out. Check out posts from last September and/or This Post for an idea of what our schedule is like right now. We're trying to visit Gwyneth a few times a day together as well.
The pain is still there, but it is getting less and less. She never experienced the back pain that most transplant patients complain of (due to the surgery itself), but her transplant incision and chest tube incisions are still hurting her. She is also still have pain and numbness in her right arm. She is finally able to sleep a little on her sides, and she has slept very well (comparatively) her first three nights home.
Tricia still has her trach. She'll probably have it removed sometime within the next few weeks. She is still relearning how to cough, and I am able to suction her at home if needed, although I have only needed to do that once so far. And, her voice is getting a little stronger.
She is still not allowed to eat or drink anything but thick liquids. She is "eating" mostly with her feeding tube. Tricia's goal weight has been 120 for the past several years. After the c-section, her weight had dropped to nearly 110, just before the transplant surgery, it had risen to around 124, and post-transplant surgery it had dropped again to 114. She is gaining slowly but surely now, and we've been told that it should be much easier for her to gain and maintain a healthy weight as long as her new lungs are functioning well.
It is amazing to watch the timing of everything continue to work so well for us. Gwyneth is doing so well that we are able to spend the time needed focusing on Tricia getting stronger and healthier so that we can both be ready for Gwyneth when she is discharged (hopefully within the next month). There is no way I would be able to handle, on my own, both Tricia and Gwyneth at home together right now.
Finally, somebody asked me if I was going to rename my blog because I am not "a CF husband anymore"...as I've explained before, Tricia still has CF. CF is much more than a lung disease, affecting literally every part of her body that produces any kind of secretions. Her new lungs are the only part of her that no longer has CF. Her pancreas is still deficient, meaning she still must take her enzymes. Her sweat is still salty, etc. etc.
Tricia will always have CF, and I will always be a CF Husband.
Thanks!
Nate
Tricia must complete a minimum of 23 days of PT before she will be released to go home to the OBX.
She also has clinic appointments about once a week, including some other appointments, all of which may take days away from PT, so we'll probably be here for longer than the 4+ weeks that it would normally take to complete the PT.
She will go to the CFL Mon-Fri for about 4 hours every day. I'll find fun and constructive things to do around Durham while she's working out. Check out posts from last September and/or This Post for an idea of what our schedule is like right now. We're trying to visit Gwyneth a few times a day together as well.
The pain is still there, but it is getting less and less. She never experienced the back pain that most transplant patients complain of (due to the surgery itself), but her transplant incision and chest tube incisions are still hurting her. She is also still have pain and numbness in her right arm. She is finally able to sleep a little on her sides, and she has slept very well (comparatively) her first three nights home.
Tricia still has her trach. She'll probably have it removed sometime within the next few weeks. She is still relearning how to cough, and I am able to suction her at home if needed, although I have only needed to do that once so far. And, her voice is getting a little stronger.
She is still not allowed to eat or drink anything but thick liquids. She is "eating" mostly with her feeding tube. Tricia's goal weight has been 120 for the past several years. After the c-section, her weight had dropped to nearly 110, just before the transplant surgery, it had risen to around 124, and post-transplant surgery it had dropped again to 114. She is gaining slowly but surely now, and we've been told that it should be much easier for her to gain and maintain a healthy weight as long as her new lungs are functioning well.
It is amazing to watch the timing of everything continue to work so well for us. Gwyneth is doing so well that we are able to spend the time needed focusing on Tricia getting stronger and healthier so that we can both be ready for Gwyneth when she is discharged (hopefully within the next month). There is no way I would be able to handle, on my own, both Tricia and Gwyneth at home together right now.
Finally, somebody asked me if I was going to rename my blog because I am not "a CF husband anymore"...as I've explained before, Tricia still has CF. CF is much more than a lung disease, affecting literally every part of her body that produces any kind of secretions. Her new lungs are the only part of her that no longer has CF. Her pancreas is still deficient, meaning she still must take her enzymes. Her sweat is still salty, etc. etc.
Tricia will always have CF, and I will always be a CF Husband.
Thanks!
Nate
Thursday, April 24, 2008
April 24
Today is the day the doctors originally told us to expect our first child to enter the world. Imagine how different our lives (and perhaps yours as well) would be if that had turned out to be the case.
We are thankful beyond words for the huge ways God has shown Himself in and through our lives and for the countless ways He has blessed us over these past several months. We never would have imagined that we'd be where we are now back on September 2, 2007 when we discovered Tricia was pregnant.
The reality that both Tricia and Gwyneth would survive and thrive after being given a 50% chance of surviving the pregnancy is amazing.
The possibility that Tricia would ever be a transplant candidate again after the pregnancy was limited.
The chances that Gwyneth would grow to full-term from 24+ weeks without any major complications was improbable.
The likelihood that Tricia would receive her new lungs after being listed and activated turned out to be nearly impossible.
Our God loves to move in impossible situations, not only to show us love, but to also show us His glory. We pray that, beyond everything else, people will see Him.
Nate
We are thankful beyond words for the huge ways God has shown Himself in and through our lives and for the countless ways He has blessed us over these past several months. We never would have imagined that we'd be where we are now back on September 2, 2007 when we discovered Tricia was pregnant.
The reality that both Tricia and Gwyneth would survive and thrive after being given a 50% chance of surviving the pregnancy is amazing.The possibility that Tricia would ever be a transplant candidate again after the pregnancy was limited.
The chances that Gwyneth would grow to full-term from 24+ weeks without any major complications was improbable.
The likelihood that Tricia would receive her new lungs after being listed and activated turned out to be nearly impossible.
Our God loves to move in impossible situations, not only to show us love, but to also show us His glory. We pray that, beyond everything else, people will see Him.
Nate
Friday, April 18, 2008
Good Days...
The past two days have been good.
It has been perfect outside. It's nearly impossible to go back inside....
In fact, the only thing that brings us back inside is the thought of spending time with Gwyneth, which is why we go outside first... Tricia loves feeding Gwyneth, and she's better at it than I am (no surprise), and since Gwyneth loves to eat, it's good times all around.
I honestly cannot describe the emotions and thoughts and feelings I experience from seeing my two girls spending time together. Up until this past week, Tricia had only been able to spend about 4-5 hours TOTAL with Gwyneth...now she is able to spend an hour at a time, a few times a day.
I am blessed beyond measure.
Nate
It has been perfect outside. It's nearly impossible to go back inside....
In fact, the only thing that brings us back inside is the thought of spending time with Gwyneth, which is why we go outside first... Tricia loves feeding Gwyneth, and she's better at it than I am (no surprise), and since Gwyneth loves to eat, it's good times all around.
I honestly cannot describe the emotions and thoughts and feelings I experience from seeing my two girls spending time together. Up until this past week, Tricia had only been able to spend about 4-5 hours TOTAL with Gwyneth...now she is able to spend an hour at a time, a few times a day.
I am blessed beyond measure.Nate
Wednesday, April 16, 2008
3 Million Hits!
Today, we hit the 3,000,000 mark. We continue to be amazed by how God is using our story and that anyone, much less tens of thousands, would be this interested in our lives. Thank you, as always, for helping to make this journey what it is.
And, maybe even more amazing...Anne, the person who was the 3 Millionth hit, actually took a picture of her computer screen and sent it to me.
How cool is that?
Nate
And, maybe even more amazing...Anne, the person who was the 3 Millionth hit, actually took a picture of her computer screen and sent it to me.
How cool is that?
Nate
Monday, April 14, 2008
Family
Family is one of the most important things in our lives, now more than ever. I cannot put a price tag on what our families have meant to us over the past few months and years. The fact that both of our parents are still married and in love, that all of our brothers and sisters are so supportive of each other is something that we do not take for granted, especially having talked with so many other patients and caregivers who are seemingly doing it on their own because of dysfunctional and/or unsupportive families.
I don't speak about our families much here, because, as the following for this blog has grown, the risk of invading their privacy has become greater as well, and I have tried to write and post with as much sensitivity to their own lives as possible. More than just about anything else, Tricia is always a daughter and a sister (in-law), niece and aunt and cousin first, and I know that it can be difficult for some of our family to get some info and pictures and video at the same time the rest of the world is.
In many ways, regardless of the difficulties of the daily grind as a caregiver in the hospital, it is so much easier for me to be here with my two girls than it is for most of our family to live so far away that they feel somewhat detached from what we're going through. Although the blog has served it's purpose well of getting info out quickly and clearly, and we have certainly shared much more privileged info with family than what has been posted on the blog, even receiving info on 30 minute delay in Nags Head of NJ can be so much more frustrating than getting it in real time like I am able to here in the hospital.
And, of course, despite the incredible love and care they have shown and continue to show us, we are NOT the center of the universe all day every day for the rest of our family. They all have their own lives, their own spouses and kids and jobs and all the rest to continue on with. And, over the course of just the past few months, as we've been living in the hospital, nearly every single one of their own family units have experienced some form of crises or major life-change of their own.
Tricia and I have spent hours praying for the rest of our family just as they have spent praying for us. I have cried many times thinking about some of the tests and journeys that God is leading them through, some of which are being resolved, and some of which are still up in the air, knowing that we are unable to do for them all that they have done for us because we are confined to the hospital. I have felt deep heartache for Tricia's father and my parents and our siblings who I know would love to be here with us more than they are able, just as I have felt burdened for Agnes as she has sacrificed so much of her own life to be here with us full-time.
But, the gratefulness far outweighs the burdens, knowing and literally feeling how our family is all caring for each other as we take this journey together. Even though we are family, and even though we would do the same for them if needed and possible, the understanding and patience they have shown us, as we have both been literally unable to function as we normally do, is totally amazing.
I want to express more...to really tell everyone just how awesome our family is. But, I think, no matter how much I say or write, I will always feel there is more to say and write.
So, simply, thank you to our family. You mean more to us than you'll ever know and can express. We love each of you and cannot wait to spend time with you after we get out of the hospital.
Nate
I don't speak about our families much here, because, as the following for this blog has grown, the risk of invading their privacy has become greater as well, and I have tried to write and post with as much sensitivity to their own lives as possible. More than just about anything else, Tricia is always a daughter and a sister (in-law), niece and aunt and cousin first, and I know that it can be difficult for some of our family to get some info and pictures and video at the same time the rest of the world is.
In many ways, regardless of the difficulties of the daily grind as a caregiver in the hospital, it is so much easier for me to be here with my two girls than it is for most of our family to live so far away that they feel somewhat detached from what we're going through. Although the blog has served it's purpose well of getting info out quickly and clearly, and we have certainly shared much more privileged info with family than what has been posted on the blog, even receiving info on 30 minute delay in Nags Head of NJ can be so much more frustrating than getting it in real time like I am able to here in the hospital.
And, of course, despite the incredible love and care they have shown and continue to show us, we are NOT the center of the universe all day every day for the rest of our family. They all have their own lives, their own spouses and kids and jobs and all the rest to continue on with. And, over the course of just the past few months, as we've been living in the hospital, nearly every single one of their own family units have experienced some form of crises or major life-change of their own.
Tricia and I have spent hours praying for the rest of our family just as they have spent praying for us. I have cried many times thinking about some of the tests and journeys that God is leading them through, some of which are being resolved, and some of which are still up in the air, knowing that we are unable to do for them all that they have done for us because we are confined to the hospital. I have felt deep heartache for Tricia's father and my parents and our siblings who I know would love to be here with us more than they are able, just as I have felt burdened for Agnes as she has sacrificed so much of her own life to be here with us full-time.
But, the gratefulness far outweighs the burdens, knowing and literally feeling how our family is all caring for each other as we take this journey together. Even though we are family, and even though we would do the same for them if needed and possible, the understanding and patience they have shown us, as we have both been literally unable to function as we normally do, is totally amazing.
I want to express more...to really tell everyone just how awesome our family is. But, I think, no matter how much I say or write, I will always feel there is more to say and write.
So, simply, thank you to our family. You mean more to us than you'll ever know and can express. We love each of you and cannot wait to spend time with you after we get out of the hospital.
Nate
Wednesday, April 2, 2008
IN THE OR
I just said goodbye to Tricia as they wheeled her into the OR. She should be falling to sleep now, and they'll begin ASAP, even before the new lungs arrive.
She was very calm and happy, thanks in large part to the pain meds that she has been on for the chest tube.
Agnes and I have been on our phones with people since we heard the news, and now we'll sit and wait. Don and my parents should be here within the next 3-4 hours.
Here at Duke, for CF patients, there is a 90-95% survival rate for the surgery itself. Tricia has a few more risks because she is still on a vent (it's very rare that any CFer gets transplanted while on a vent). We know that the new lungs are type O, which is the universal blood type.
I'm moving a few things to the car, and then spending some time with Gwyneth.
I've got the OR pager on my, but it literally won't be until they're all done that we'll hear anything. I'll post from now until then with some things that are in my head and on my heart.
Thank you all for your thoughts and prayers. The next 7-9 hours (average for a double lung TX surgery) will be the most difficult of my entire life, and I can't tell you how much it means to know there are literally tens of thousands of people right here with us.
I praise God for what He has done, for what He is doing, and for what He is going to do.
Thank you.
Nate
She was very calm and happy, thanks in large part to the pain meds that she has been on for the chest tube.
Agnes and I have been on our phones with people since we heard the news, and now we'll sit and wait. Don and my parents should be here within the next 3-4 hours.
Here at Duke, for CF patients, there is a 90-95% survival rate for the surgery itself. Tricia has a few more risks because she is still on a vent (it's very rare that any CFer gets transplanted while on a vent). We know that the new lungs are type O, which is the universal blood type.
I'm moving a few things to the car, and then spending some time with Gwyneth.
I've got the OR pager on my, but it literally won't be until they're all done that we'll hear anything. I'll post from now until then with some things that are in my head and on my heart.
Thank you all for your thoughts and prayers. The next 7-9 hours (average for a double lung TX surgery) will be the most difficult of my entire life, and I can't tell you how much it means to know there are literally tens of thousands of people right here with us.
I praise God for what He has done, for what He is doing, and for what He is going to do.
Thank you.
Nate
Tuesday, April 1, 2008
Organ Donation Month
Nearly a year ago, Tricia and I received an email that would affect us very deeply.
For the first two years of our marriage, I was on staff at a small church in VA. Jess Jackson was our pastor, and he and his wife, Carol, quickly became two of our greatest friends and supporters.
When it was most valuable, in the earliest years of our marriage, we had, in the Jacksons, a nearly perfect (and I say "nearly" because nobody's perfect) couple to watch and learn from and model our own relationship after.
We spent hours with the Jacksons, inside and out of the church. Tricia and Carol would meet together for coffee or lunch, sometimes multiple times a week, forming a bond that has only grown stronger in the few years since we moved away.
Jess invested hours in spending time with me, in ministry and in my everyday life. I have never known a more humble or kind man. Never once did I hear Jess speak poorly of anyone, and he always expected and looked for the best in me and everyone else he knew and loved.
Last June, almost a year to the day that we moved from VA Beach to Nags Head, we received an email telling us that Jess had suddenly and completely unexpectedly passed away. I can remember exactly where we were sitting, exactly what I was thinking, exactly how I felt that day and for a long time after.
Not to mention his church and, I'm sure, thousands of sincere friends and family, Jess left behind Carol, two grown sons, two daughters-in-law and a handful of beautiful, little grand-daughters.
This past year has been a difficult one, for sure, for the people Jess left behind, but Tricia and I have been encouraged to watch the Jackson family remember and honor Jess with faith and grace.
Just this past week, Carol emailed us again with some incredible news. The following is part of her email:
Yesterday our family received a thank you letter from someone (it was directed through the donor bank for anonymity) who received donor tissue from Jess' eyes. My reaction when I got the letter was not really what I had thought; I thought I would be much more sad. It really had a positive impact on me, to know that someone is able to see because of Jess' eyes.
I knew that Jess had wanted to be an organ donor, but to actually do it seemed somewhat strange at the time, but now it seems like a natural thing. Jess was always such a sacrificial giver, to family, church and even at our most tragic moment something good came from it. I am praying that someone else's family will make that decision for lungs for YOU, Tricia--and that they, too, will be comforted by their decision.
Reading this email made me pause and remember Jess just as much as the email from last June, but for completely different reasons. What a gift, to both the recipient of Jess' donation and to those of us who are still grieving. I can't think of anything else, beyond knowing that Jess is in a much better place, that could help bring peace and comfort to those of us who are still searching for the "good" of Jess' death.
Again, as I've written before, thank you to those of you who are donors, and to those of you who have watched a family member or friend give the gift of life through death.
April is Organ Donation Month in the US. The only reason there is a waiting list for transplant patients is because there are far too few who have seriously considered giving the gift of life to another. Please, if you haven't already, consider becoming a donor today.
Thank you.
Nate
For the first two years of our marriage, I was on staff at a small church in VA. Jess Jackson was our pastor, and he and his wife, Carol, quickly became two of our greatest friends and supporters.
When it was most valuable, in the earliest years of our marriage, we had, in the Jacksons, a nearly perfect (and I say "nearly" because nobody's perfect) couple to watch and learn from and model our own relationship after.
We spent hours with the Jacksons, inside and out of the church. Tricia and Carol would meet together for coffee or lunch, sometimes multiple times a week, forming a bond that has only grown stronger in the few years since we moved away.
Jess invested hours in spending time with me, in ministry and in my everyday life. I have never known a more humble or kind man. Never once did I hear Jess speak poorly of anyone, and he always expected and looked for the best in me and everyone else he knew and loved.
Last June, almost a year to the day that we moved from VA Beach to Nags Head, we received an email telling us that Jess had suddenly and completely unexpectedly passed away. I can remember exactly where we were sitting, exactly what I was thinking, exactly how I felt that day and for a long time after.
Not to mention his church and, I'm sure, thousands of sincere friends and family, Jess left behind Carol, two grown sons, two daughters-in-law and a handful of beautiful, little grand-daughters.
This past year has been a difficult one, for sure, for the people Jess left behind, but Tricia and I have been encouraged to watch the Jackson family remember and honor Jess with faith and grace.
Just this past week, Carol emailed us again with some incredible news. The following is part of her email:
Yesterday our family received a thank you letter from someone (it was directed through the donor bank for anonymity) who received donor tissue from Jess' eyes. My reaction when I got the letter was not really what I had thought; I thought I would be much more sad. It really had a positive impact on me, to know that someone is able to see because of Jess' eyes.
I knew that Jess had wanted to be an organ donor, but to actually do it seemed somewhat strange at the time, but now it seems like a natural thing. Jess was always such a sacrificial giver, to family, church and even at our most tragic moment something good came from it. I am praying that someone else's family will make that decision for lungs for YOU, Tricia--and that they, too, will be comforted by their decision.
Reading this email made me pause and remember Jess just as much as the email from last June, but for completely different reasons. What a gift, to both the recipient of Jess' donation and to those of us who are still grieving. I can't think of anything else, beyond knowing that Jess is in a much better place, that could help bring peace and comfort to those of us who are still searching for the "good" of Jess' death.
Again, as I've written before, thank you to those of you who are donors, and to those of you who have watched a family member or friend give the gift of life through death.
April is Organ Donation Month in the US. The only reason there is a waiting list for transplant patients is because there are far too few who have seriously considered giving the gift of life to another. Please, if you haven't already, consider becoming a donor today.
Thank you.
Nate
Monday, March 31, 2008
(Bump) Afraid of Heights
Mondays are good for Recycling! This was originally posted on 1.31.08.
(A Friendly Warning: This post may be slightly PG-13 rated due to some of the things I talk about...just a heads up, especially for parents who let their kids read the blog)
Lately, with the blog, I've been becoming slightly self-conscious. Reading the comments and emails and cards and notes is such an encouragement, but it feels as if I'm being unjustly placed on a pedestal (in other words, many of you seem to think I'm all that and a bunch of raisins, which I'm not), and I'm scared that one day (knowing me, probably someday soon), I'm going to show my true colors and disappoint a lot of people. I'd much prefer to do something preemptive to help lower myself down a little...I am afraid of heights.
So, for the sake of honesty and transparency, let me share a few things about myself.
1) I'm pretty sure that being a great dad is going to be a whole lot harder when the NICU nurses are no longer her primary caregivers. I don't think I really need to say much more...see #3 for some more insight into this one.
2) I envy those people who's faith is most evident in the good times. I totally stink when it comes to having an awesome relationship with God in the good times. I keep asking myself why it takes something like my present situation to really make me believe that God really is who He says he is. I "seem" to do a pretty good job on my own most of the time...it seems to me that it's often a lot easier to trust God when you've nothing left to lose than to trust Him when things are going well. I tend to take the easy road...
3) I am a much better husband when Tricia is in the hospital than when Tricia is at home. I'm lazy, selfish, procrastinatory (yes, that is a word), and stubborn, especially around Tricia. I do a great job of showing off the best of me when I'm around most other people, but trust me, I'm no saint when it comes to my marriage, and Tricia would be the first to tell you that (although she probably never would tell you just 'cause she's so stinkin' nice).
4) I'm a much better and more prolific writer than I am a talker. I don't talk much (my mom loves to call me "a brick wall"). The only time I really talk a lot is when I'm placed in a leadership role with a group of people. Most other times, I do a lot more listening than talking. And when I do talk, I usually don't have too many brilliant things to say...and, even when I do, I usually don't say it well. For some reason, I feel much more comfortable writing than I do talking.
5) I have never donated blood. I'm very scared of needles that are pointed toward me.
6) This blog has done more for me than is has for anybody else. God knew what He was doing when He put the desire in my heart to journal this journey. I thought it would be a good way to keep our friends and family informed and to help others who may take a similar journey after us. Little did I know that God was going to show our story to thousands of people...and little did I know that He was going to use this blog to change my future in the way He has.
You see, back in the summer, around the same time that Tricia was being evaluated for the double lung transplant, I was being diagnosed with anxiety and depression. For several years, I've dealt with feelings and thoughts that have confused and frustrated me. I think and feel and act in ways that I know are not the way I've been called to be as one who lives for and in Christ.
For the past few years, and especially the past several months, I've had thoughts of what my life might be like if Tricia died so young. It's not so much that this kind of thinking is bad...it was the possibilities that came into my mind that seemed to be attractive that really scared me. I wondered if I would secretly run away with our dog and cat and try to start a new life somewhere...or, maybe I would be so numb that I'd sit at home until I either died or was placed in a mental institution...or, maybe I'd be so distraught that I'd hurt myself, or worse...
Up until a few months ago, I just couldn't imagine dealing with the grief in a "healthy" way, continuing with my faith in God, living a productive life without Tricia. The alternatives just seemed a whole lot easier, on several different levels. And, I've been very scared to talk with anyone about this.
But, through watching (with the rest of you) with incredible awe and humility the ways that God has been using Tricia and Gwyneth to change so many hearts and lives, He has also been changing me. God deserves all of the credit for anything good that has come out of our story, and I am just floored that He is using me to tell it.
I'll be honest, most of the faith-focused stuff that I've been writing on this blog has been more about me having an outlet to put on "paper" the things that I really need to read and hear to believe are true. Do I totally believe what I mean when I say that I'm trusting God with the lives of my two girls? Of course not! But, thinking it in my head and heart, writing it on this blog for thousands to see, and witnessing the response from you has brought me so much closer to that total faith and trust than I have ever been. When I post things that seem to come from a person of great faith, realize that they're actually being posted for a person with little faith.
I think what I'm trying to say is, if faith is always as easy as placing all of our trust in something/Someone all the time, then I'm not really sure that is real faith at all. I sit in chairs all the time (going back to that lazy thing), and I can't remember the last time a chair decided it wasn't going to hold me (although with all of this hospital and fast food, I'm becoming more suspicious)...but I don't think that my faith in those chairs is really anything to write home about.
If my faith in God is never tested, if my trust that He is always there and always wanting the best for me is always 100%, God might as well be a piece of furniture. And, up until just recently, maybe that's exactly what my thoughts, words and actions were showing about my God...
As I've mentioned a few times, it's not so much that I have incredible faith...it's more that I have an incredible God Who has chosen to put me in an incredible situation that only gave me two choices: rely on my own will and strength and stamina, or increase my trust in God. Knowing my own limitations, the choice was pretty simple.
When I am at my weakest, He makes His strength most evident.
God is using your stories and comments and emails to give me hope for my own life. I know I've said it many times, but I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome.
Thank you for helping me. This post wasn't as clearly written as I had hoped (and I've been wanting to write this for a long time now), but hopefully I've brought my pedestal down at least a little...
Nate
(A Friendly Warning: This post may be slightly PG-13 rated due to some of the things I talk about...just a heads up, especially for parents who let their kids read the blog)
Lately, with the blog, I've been becoming slightly self-conscious. Reading the comments and emails and cards and notes is such an encouragement, but it feels as if I'm being unjustly placed on a pedestal (in other words, many of you seem to think I'm all that and a bunch of raisins, which I'm not), and I'm scared that one day (knowing me, probably someday soon), I'm going to show my true colors and disappoint a lot of people. I'd much prefer to do something preemptive to help lower myself down a little...I am afraid of heights.
So, for the sake of honesty and transparency, let me share a few things about myself.
1) I'm pretty sure that being a great dad is going to be a whole lot harder when the NICU nurses are no longer her primary caregivers. I don't think I really need to say much more...see #3 for some more insight into this one.
2) I envy those people who's faith is most evident in the good times. I totally stink when it comes to having an awesome relationship with God in the good times. I keep asking myself why it takes something like my present situation to really make me believe that God really is who He says he is. I "seem" to do a pretty good job on my own most of the time...it seems to me that it's often a lot easier to trust God when you've nothing left to lose than to trust Him when things are going well. I tend to take the easy road...
3) I am a much better husband when Tricia is in the hospital than when Tricia is at home. I'm lazy, selfish, procrastinatory (yes, that is a word), and stubborn, especially around Tricia. I do a great job of showing off the best of me when I'm around most other people, but trust me, I'm no saint when it comes to my marriage, and Tricia would be the first to tell you that (although she probably never would tell you just 'cause she's so stinkin' nice).
4) I'm a much better and more prolific writer than I am a talker. I don't talk much (my mom loves to call me "a brick wall"). The only time I really talk a lot is when I'm placed in a leadership role with a group of people. Most other times, I do a lot more listening than talking. And when I do talk, I usually don't have too many brilliant things to say...and, even when I do, I usually don't say it well. For some reason, I feel much more comfortable writing than I do talking.
5) I have never donated blood. I'm very scared of needles that are pointed toward me.
6) This blog has done more for me than is has for anybody else. God knew what He was doing when He put the desire in my heart to journal this journey. I thought it would be a good way to keep our friends and family informed and to help others who may take a similar journey after us. Little did I know that God was going to show our story to thousands of people...and little did I know that He was going to use this blog to change my future in the way He has.
You see, back in the summer, around the same time that Tricia was being evaluated for the double lung transplant, I was being diagnosed with anxiety and depression. For several years, I've dealt with feelings and thoughts that have confused and frustrated me. I think and feel and act in ways that I know are not the way I've been called to be as one who lives for and in Christ.
For the past few years, and especially the past several months, I've had thoughts of what my life might be like if Tricia died so young. It's not so much that this kind of thinking is bad...it was the possibilities that came into my mind that seemed to be attractive that really scared me. I wondered if I would secretly run away with our dog and cat and try to start a new life somewhere...or, maybe I would be so numb that I'd sit at home until I either died or was placed in a mental institution...or, maybe I'd be so distraught that I'd hurt myself, or worse...
Up until a few months ago, I just couldn't imagine dealing with the grief in a "healthy" way, continuing with my faith in God, living a productive life without Tricia. The alternatives just seemed a whole lot easier, on several different levels. And, I've been very scared to talk with anyone about this.
But, through watching (with the rest of you) with incredible awe and humility the ways that God has been using Tricia and Gwyneth to change so many hearts and lives, He has also been changing me. God deserves all of the credit for anything good that has come out of our story, and I am just floored that He is using me to tell it.
I'll be honest, most of the faith-focused stuff that I've been writing on this blog has been more about me having an outlet to put on "paper" the things that I really need to read and hear to believe are true. Do I totally believe what I mean when I say that I'm trusting God with the lives of my two girls? Of course not! But, thinking it in my head and heart, writing it on this blog for thousands to see, and witnessing the response from you has brought me so much closer to that total faith and trust than I have ever been. When I post things that seem to come from a person of great faith, realize that they're actually being posted for a person with little faith.
I think what I'm trying to say is, if faith is always as easy as placing all of our trust in something/Someone all the time, then I'm not really sure that is real faith at all. I sit in chairs all the time (going back to that lazy thing), and I can't remember the last time a chair decided it wasn't going to hold me (although with all of this hospital and fast food, I'm becoming more suspicious)...but I don't think that my faith in those chairs is really anything to write home about.
If my faith in God is never tested, if my trust that He is always there and always wanting the best for me is always 100%, God might as well be a piece of furniture. And, up until just recently, maybe that's exactly what my thoughts, words and actions were showing about my God...
As I've mentioned a few times, it's not so much that I have incredible faith...it's more that I have an incredible God Who has chosen to put me in an incredible situation that only gave me two choices: rely on my own will and strength and stamina, or increase my trust in God. Knowing my own limitations, the choice was pretty simple.
When I am at my weakest, He makes His strength most evident.
God is using your stories and comments and emails to give me hope for my own life. I know I've said it many times, but I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome.
Thank you for helping me. This post wasn't as clearly written as I had hoped (and I've been wanting to write this for a long time now), but hopefully I've brought my pedestal down at least a little...
Nate