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
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
CF Connections
I thought this was interesting...
Tricia's nurse today had a brother who passed away from CF a few years ago.
Gwyneth's nurse today has a father with CF who is now in his fifties.
We thought that was cool. So did they.
Nate
Tricia's nurse today had a brother who passed away from CF a few years ago.
Gwyneth's nurse today has a father with CF who is now in his fifties.
We thought that was cool. So did they.
Nate
White Rose Blooming (14 Weeks)
Every Tuesday while you're in the hospital, we'll take a picture with your pug so that everyone can see how much you are growing!
You are now 15 inches long, and you weigh 3lbs 3oz!!!
Your fourteenth week was another great one! Your mommy finally got her new lungs! After several days away, she finally was able to come down and hold you again! You continue to grow every day, and your mommy got to feed you for the first time. And, your latest eye exam shows that your eyes are healing and getting stronger!
You finally got to move out of your incubator and into a crib! And, you were moved to the stepdown unit, which means you are doing so well and are getting closer and closer to going home with us! All you need to do is gain a little more weight and eat everything from your bottle!
In the next week, we're praying that you enjoy your time in the stepdown unit and continue to grow closer to 2000 grams and continue eating more and more from your bottle.
We love you!
Compare our Blessed White Rose at:
2 Weeks
3 Weeks
4 Weeks
5 Weeks
6 Weeks
7 Weeks
8 Weeks
9 Weeks
10 Weeks
11 Weeks
12 Weeks
13 Weeks
You are now 15 inches long, and you weigh 3lbs 3oz!!!
Your fourteenth week was another great one! Your mommy finally got her new lungs! After several days away, she finally was able to come down and hold you again! You continue to grow every day, and your mommy got to feed you for the first time. And, your latest eye exam shows that your eyes are healing and getting stronger!
You finally got to move out of your incubator and into a crib! And, you were moved to the stepdown unit, which means you are doing so well and are getting closer and closer to going home with us! All you need to do is gain a little more weight and eat everything from your bottle!
In the next week, we're praying that you enjoy your time in the stepdown unit and continue to grow closer to 2000 grams and continue eating more and more from your bottle.
We love you!
Compare our Blessed White Rose at:
2 Weeks
3 Weeks
4 Weeks
5 Weeks
6 Weeks
7 Weeks
8 Weeks
9 Weeks
10 Weeks
11 Weeks
12 Weeks
13 Weeks
Tuesday, April 15, 2008
Interesting Day
Yesterday was an interesting day. Very monumental in our journey for several different reasons...
Tricia had an extremely rough morning. The day before was her best yet, but she did not sleep well, and by the time I woke up around 7am, she was complaining about having a lot of trouble breathing. It was very, very difficult for her, and she sat in bed all morning very uncomfortable and stressed until the docs came and did a Bronchoscopy around noon and suctioned out a lot of "plugs" (mucus that is literally plugging the airways in the lungs).
They also changed her plastic trach for a smaller, metal one. This metal trach has no cuff (the balloon in the throat that is inflated to prevent air from passing through the mouth and nose) which means a lot less airway obstruction. After the bronch and new trach, Tricia immediately felt better, which was a relief both physically and mentally.
Tricia was given a plug for the new trach, and she has been breathing since completely through her mouth and nose for the first time in over three months, as well as talking...a lot. :) The plug also allows her not to need the hydrated O2 (at room air, 21%) that she had been receiving for the past few weeks, which means one less thing strapping her down. She slept with the plug in all night and had the best sleep in weeks sleep. And, she is able to really smell for the first time in three months.
She also walked twice for a total of 14 laps, which is approximately 4000 feet. And, for the first time ever, We were able to go visit Gwyneth without any nurses or RTs in tow. And, for the first time ever, we went to visit Gwyneth twice in one day. Other than walking her laps, Tricia still travels via a wheelchair.
And, perhaps the biggest news of all...Gwyneth was moved to the stepdown nursery. There are only nine available beds in the stepdown nursery, which means that Gwyneth is one of the nine most stable babies in the NICU. It's one step closer to getting out and going home. Although the stepdown is different than the NICU, and the change is not something that feels comfortable yet, we are excited to see the progress!
I was told that we were unexpectedly on a local TV news station in the Hampton Roads, VA area yesterday evening as well...if memory serves me right, one of the stations there is partners with the Virginian Pilot, and they must have mentioned the story in the paper somehow. Which reminds me...tomorrow brings another TV interview with Barbara Gibbs and ABC 11. This interview is meant to give an update on the girls' progress as well as help promote the CF Great Strides Walk this Saturday at Duke (more about that later). I'm excited, because, hopefully, Tricia will actually be able to speak audibly this time!
Thanks!
Nate
Tricia had an extremely rough morning. The day before was her best yet, but she did not sleep well, and by the time I woke up around 7am, she was complaining about having a lot of trouble breathing. It was very, very difficult for her, and she sat in bed all morning very uncomfortable and stressed until the docs came and did a Bronchoscopy around noon and suctioned out a lot of "plugs" (mucus that is literally plugging the airways in the lungs).
They also changed her plastic trach for a smaller, metal one. This metal trach has no cuff (the balloon in the throat that is inflated to prevent air from passing through the mouth and nose) which means a lot less airway obstruction. After the bronch and new trach, Tricia immediately felt better, which was a relief both physically and mentally.
Tricia was given a plug for the new trach, and she has been breathing since completely through her mouth and nose for the first time in over three months, as well as talking...a lot. :) The plug also allows her not to need the hydrated O2 (at room air, 21%) that she had been receiving for the past few weeks, which means one less thing strapping her down. She slept with the plug in all night and had the best sleep in weeks sleep. And, she is able to really smell for the first time in three months.
She also walked twice for a total of 14 laps, which is approximately 4000 feet. And, for the first time ever, We were able to go visit Gwyneth without any nurses or RTs in tow. And, for the first time ever, we went to visit Gwyneth twice in one day. Other than walking her laps, Tricia still travels via a wheelchair.
And, perhaps the biggest news of all...Gwyneth was moved to the stepdown nursery. There are only nine available beds in the stepdown nursery, which means that Gwyneth is one of the nine most stable babies in the NICU. It's one step closer to getting out and going home. Although the stepdown is different than the NICU, and the change is not something that feels comfortable yet, we are excited to see the progress!
I was told that we were unexpectedly on a local TV news station in the Hampton Roads, VA area yesterday evening as well...if memory serves me right, one of the stations there is partners with the Virginian Pilot, and they must have mentioned the story in the paper somehow. Which reminds me...tomorrow brings another TV interview with Barbara Gibbs and ABC 11. This interview is meant to give an update on the girls' progress as well as help promote the CF Great Strides Walk this Saturday at Duke (more about that later). I'm excited, because, hopefully, Tricia will actually be able to speak audibly this time!
Thanks!
Nate
Beach 104 Interview
For those of us who don't live on the OBX and missed the Radio Interview from Yesterday, here you go...
Nate
Nate
Monday, April 14, 2008
CF Story
Not a coincidence that This ran in the Virginian Pilot on the same day as Tricia's story. We were living in the Chesapeake area when all of the fundraising for this (now) 12 year old CF girl was happening.
Not everyone gets a second chance at life...
Consider Donating to the Cystic Fibrosis Foundation to help insure that other kids don't have the same fate as Emily.
Nate
Not everyone gets a second chance at life...
Consider Donating to the Cystic Fibrosis Foundation to help insure that other kids don't have the same fate as Emily.
Nate
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
The Past Two Weeks
I'll try to make this as informative and simple as possible.
A lot has taken place since the surgery. The surgery, as described by Dr. Lin (who performed the operation) was one of the most difficult CF transplants he has ever seen. Tricia was extremely sick, and her lungs were so badly deteriorated that they literally had to be scraped out of her body.
Tricia has experienced a lot of pain and discomfort. In fact, it's easy to say, at this point, that she was feeling healthier before the surgery (sans the collapsed lung) than she has yet to feel after the surgery. She came out of surgery with 8 tubes (6 "chest tubes" and 2 smaller drainage tubes), an arterial line (left wrist) and central line (neck), and over 100 staples. She was given an epidural for pain meds, and for the first several days had sometimes up to four different IV meds pouring into her body at the same time.
We (our parents and I) were able to see Tricia just a few hours after the surgery ended while she was still sedated. She was awake shortly after, and when I went to see her a second time that afternoon, she was sitting up and alert.
Tricia dealt with the short term memory loss for about the first 5-7 days...each day it got a little better. The first day she would literally forget everything within about 1-2 minutes, by the afternoon of day 4 she began remembering a things from that morning, and by day 7 she was able to remember most of day 6. Anesthesia and other drugs affect everyone differently...some can remember everything except outside of sedation, while others, like Tricia, may never remember anything of the several days surrounding the surgery. She is still having a hard time remembering anything from the day leading up to the surgery.
Because of the short-term memory loss, Tricia constantly asked the same questions and made the same statements over and over the first few days. Her chest felt very tight. A "rumbling" feeling from a leak around one of the chest tubes felt like the secretions that she was used to in her old lungs, and she constantly asked to be suctioned, and we constantly had to explain that she didn't need to be. The incisions around the chest tubes and the incision that stretches from under one arm across her chest to under the other arm continue to be very painful.
On day 2 she had the 2 hard plastic chest tubes removed (the others are flexible rubber), her G tube replaced by a G/J tube, and the pic line placed. On day 7 she had the epidural removed.
Her breathing was and still is very difficult. The chest tubes take up some space in her chest cavity, and the many, still-healing incisions make it hard to take a deep breath without being in pain. She has no sensation in her new lungs, yet, and, of course, everything is cut up and rearranged and replaced, so it's very hard for her to really tell how deeply and fully she is able to breathe, which tends to create some anxiety. Her O2 and CO2 sats have been good, but not great.
As was explained to us before the transplant, because Tricia was on a vent for so long and transplanted on a vent, her recovery time could be expected to be longer. Normally, they aim to have most post-surgery TX patients off the vent in 48 hours and out of ICU within 4-5 days. Duke has performed around 700 TX surgeries, and only 2% (about 14 people) have been gone into surgery on a vent like Tricia.
She finally began getting some substantial sleep on day 6, and it showed on day 7 as it was the first day that Tricia really began to act more like herself. The first week, she was almost completely focused on herself (understandably so, as your body and mind force you to be self-centered when you're in a sever medical condition). Day 7, however, she began to become more talkative, smile and laugh more and show more interest in what was going on outside of her ICU room, which was a huge turning point for her and for me.
The first week, especially, was extremely difficult for me. I won't say much, as we love Duke and are always thankful for the incredible care we receive, but, added to the emotional and mental stress of the surgery and recovery as well as the inability to be with Tricia 24/7 (which is stressful for both of us) were some other issues that were finally resolved after several days.
I did take advantage (as did Agnes) of the opportunity to sleep in the hotel beds for several nights in a row, and once the issues were resolved, and then more one Tricia began to return to her usual self, and then especially when she was moved from the ICU, we were all feeling much more relaxed and secure. As you can imagine, the past few weeks have also been incredibly difficult for our families.
Tricia has been walking around 2000 feet the past several days, and, for the first time since I walked her into the hospital in December, I was able to walk with her yesterday by myself without any nurses or RTs tagging along. She is becoming more mobile as she is now free of most of the chest tubes and is spending less time hooked to IV meds. We were able to visit Gwyneth together again yesterday, and hope to go again later today. Although her recovery has been slow, and she is still having a hard time breathing and is still receiving lots of pain meds, her medical team remains very optimistic that she'll be discharged sooner rather than later, which is keeping us hopeful in the difficult moments.
That's all for now. Please, understand that this is just a very simple, very surface picture of what the past few weeks have been like for us. There is so much more that has and is going on that I cannot share with you. Hopefully, this post gives you an honest but censored idea of what is going on. I'll share more soon about what to expect in the next few weeks and months. We're just incredibly thankful to God for getting us this far, and we're praying that He'll complete this part of our journey with a trip home soon.
Thanks!
Nate
PS. I'm having a hard time uploading pics from Tricia's room, but I'll try to get some up ASAP.
A lot has taken place since the surgery. The surgery, as described by Dr. Lin (who performed the operation) was one of the most difficult CF transplants he has ever seen. Tricia was extremely sick, and her lungs were so badly deteriorated that they literally had to be scraped out of her body.
Tricia has experienced a lot of pain and discomfort. In fact, it's easy to say, at this point, that she was feeling healthier before the surgery (sans the collapsed lung) than she has yet to feel after the surgery. She came out of surgery with 8 tubes (6 "chest tubes" and 2 smaller drainage tubes), an arterial line (left wrist) and central line (neck), and over 100 staples. She was given an epidural for pain meds, and for the first several days had sometimes up to four different IV meds pouring into her body at the same time.
We (our parents and I) were able to see Tricia just a few hours after the surgery ended while she was still sedated. She was awake shortly after, and when I went to see her a second time that afternoon, she was sitting up and alert.
Tricia dealt with the short term memory loss for about the first 5-7 days...each day it got a little better. The first day she would literally forget everything within about 1-2 minutes, by the afternoon of day 4 she began remembering a things from that morning, and by day 7 she was able to remember most of day 6. Anesthesia and other drugs affect everyone differently...some can remember everything except outside of sedation, while others, like Tricia, may never remember anything of the several days surrounding the surgery. She is still having a hard time remembering anything from the day leading up to the surgery.
Because of the short-term memory loss, Tricia constantly asked the same questions and made the same statements over and over the first few days. Her chest felt very tight. A "rumbling" feeling from a leak around one of the chest tubes felt like the secretions that she was used to in her old lungs, and she constantly asked to be suctioned, and we constantly had to explain that she didn't need to be. The incisions around the chest tubes and the incision that stretches from under one arm across her chest to under the other arm continue to be very painful.
On day 2 she had the 2 hard plastic chest tubes removed (the others are flexible rubber), her G tube replaced by a G/J tube, and the pic line placed. On day 7 she had the epidural removed.
Her breathing was and still is very difficult. The chest tubes take up some space in her chest cavity, and the many, still-healing incisions make it hard to take a deep breath without being in pain. She has no sensation in her new lungs, yet, and, of course, everything is cut up and rearranged and replaced, so it's very hard for her to really tell how deeply and fully she is able to breathe, which tends to create some anxiety. Her O2 and CO2 sats have been good, but not great.
As was explained to us before the transplant, because Tricia was on a vent for so long and transplanted on a vent, her recovery time could be expected to be longer. Normally, they aim to have most post-surgery TX patients off the vent in 48 hours and out of ICU within 4-5 days. Duke has performed around 700 TX surgeries, and only 2% (about 14 people) have been gone into surgery on a vent like Tricia.
She finally began getting some substantial sleep on day 6, and it showed on day 7 as it was the first day that Tricia really began to act more like herself. The first week, she was almost completely focused on herself (understandably so, as your body and mind force you to be self-centered when you're in a sever medical condition). Day 7, however, she began to become more talkative, smile and laugh more and show more interest in what was going on outside of her ICU room, which was a huge turning point for her and for me.
The first week, especially, was extremely difficult for me. I won't say much, as we love Duke and are always thankful for the incredible care we receive, but, added to the emotional and mental stress of the surgery and recovery as well as the inability to be with Tricia 24/7 (which is stressful for both of us) were some other issues that were finally resolved after several days.
I did take advantage (as did Agnes) of the opportunity to sleep in the hotel beds for several nights in a row, and once the issues were resolved, and then more one Tricia began to return to her usual self, and then especially when she was moved from the ICU, we were all feeling much more relaxed and secure. As you can imagine, the past few weeks have also been incredibly difficult for our families.
Tricia has been walking around 2000 feet the past several days, and, for the first time since I walked her into the hospital in December, I was able to walk with her yesterday by myself without any nurses or RTs tagging along. She is becoming more mobile as she is now free of most of the chest tubes and is spending less time hooked to IV meds. We were able to visit Gwyneth together again yesterday, and hope to go again later today. Although her recovery has been slow, and she is still having a hard time breathing and is still receiving lots of pain meds, her medical team remains very optimistic that she'll be discharged sooner rather than later, which is keeping us hopeful in the difficult moments.
That's all for now. Please, understand that this is just a very simple, very surface picture of what the past few weeks have been like for us. There is so much more that has and is going on that I cannot share with you. Hopefully, this post gives you an honest but censored idea of what is going on. I'll share more soon about what to expect in the next few weeks and months. We're just incredibly thankful to God for getting us this far, and we're praying that He'll complete this part of our journey with a trip home soon.
Thanks!
Nate
PS. I'm having a hard time uploading pics from Tricia's room, but I'll try to get some up ASAP.