Friday, February 29, 2008
I encourage you to use this extra day to something extra special for somebody you love, and then tell us about it here.
Thursday, February 28, 2008
And, I've seen her lift her own head completely off her bed a few times, which I find incredible considering she should still be swimming around almost weightless inside her mother's womb.
Here are a few pics I just took.
Nathan's 4 Very Effective Ways of Avoiding Contracting the Influenza and Certain Death While Riding on Elevators During Flu Season
1) Don't touch anything or anyone. Not with your fingers, not with you clothes, not with your right kneecap. The only thing that should be touching anything is the bottoms of your shoes. Hopefully, somebody else will be going to your floor, but it might mean riding for a while until the the elevator decides to stop on your floor. Unless you are forced to perform CPR on somebody, don't touch anyone!
2) Don't ride with little children. I love kids, but they're germ magnets. If you see a child on the elevator, don't get on. If you are on and a child gets on, get off immediately. Unless you have your own children with you, and they're too scared to ride in a separate elevator without you, don't ride with little children!
3) Wear lots of layers. Just in case you do touch something/someone, or something/someone touches you, you still have a defense. By wearing layers, you can remove the contaminated layer and burn it in a trashcan (most elevators have trashcans nearby). The more rides you planning on taking on the elevator, the more layers you'll need to wear. Unless you are going to ride naked and shower immediately upon exiting the elevator (which seems just a little extreme to me), wear lots of layers.
4) Don't Breathe. Hold your breath. Even if you're not touching a thing, you still must hold your breath the entire time to completely avoid exposure. If you can't make it all the way to your floor, get out, refuel, and then get back in. Or, you can wear an oxygen tank. Unless you're about to pass out and be forced to touch something or have somebody perform CPR on you, don't breath!
No need to thank me.
> Tricia has only been outside that one time...the cold weather and the Flu have kept her from going out again.
> Tricia hasn't eaten much except for a little apple sauce and chocolate pudding. She is fed mostly via her feeding tube throughout the day.
I've had several questions about CF/Transplant related diabetes. I am not an Endocrinologist, not do I play one on tv, but here are a few things that I think are true about this subject:
> CFers are prone to diabetes for a few reasons:
- Most CFers are on a high fat/high calorie diet (which usually means high sugar/glucose levels) to help keep their weight up.
- The Pancreas is one of the organs affected by CF. The Pancreas produces Insulin. It makes sense that CFers are prone to insulin deficiency (meaning they produce insulin, just not enough).
- Many CF drugs, especially steroids, can cause diabetes.
> Tricia may or may not have had diabetes before being pregnant, but it wasn't detected until after she became pregnant. Of course, Gestational Diabetes is very common.
> So far (since delivering the baby), Tricia is still having issues with her blood sugar, which means that, especially with the upcoming transplant (and all of the transplant steroids that she'll be taking), she'll probably deal with diabetes for the rest of her life (which will also make for some crazy dietary restrictions...).
Slept in the same bed with you.
Rode in the same car with you.
Was your primary caregiver (in action).
Ate a real meal with you.
Bought a McDonald's breakfast for you.
Was really alone with you.
Ate your homecookin'.
Got your meds ready for you.
Danced with you.
Really kissed you good.
I've spent more time with you in the past two months that in forever, and I wouldn't trade it for the world.
But still, I miss you like crazy.
(please, understand that I'm just wasting time here, so don't get offended by anything you're about to read)
From reading every single one of the 574 comments, the following songs appear to have the most votes:
"Cinderella" by Steven Curtis Chapman
"Isn't She Lovely" by Stevie Wonder
"Amazing" by Janelle
It amazes me how many people can't follow a few simple rules...if the punishment for breaking the rule had been an oreo cookie for a left ear, there would be a lot of funny (yet, strangely attractive) looking people walking around right now...
I think I deleted one comment because of rule-breakage...that was before I noticed that I had received 50 comments in the first 20 minutes and saw that about 20% of people were rule-breakers and realized I was not going to have enough time in the rest of the year to delete every rule-breaking comment. I will not use that threat again, because it obviously didn't accomplish anything...
My two favorite phrases from the comments (and I must have read each of these at least 25 times) were:
"I know you said 'no country music' but..."
"I know this is a country song, but it doesn't sound country..."
Yes, people...the Dixie Chicks are country.
I about peed my pants when more than one person suggested and posted the lyrics for a certain George Strait song (those of you who have been with me for a while are laughing as well...).
It's very interesting to see the different musical preferences that people have. (according to my personal preferences in music) Some suggestions were outstanding. Some were really lame. And a few just made me laugh out loud.
Apparently, a lot of people haven't watched the CFHusband Videos (which you should do right this very moment because you ain't cool unless you've watched the videos) yet because I've already used several of the songs that were suggested...
Whether I pick your song or not, because of your suggestions I have purchased several really good songs from iTunes that I'm enjoying listening to and may use for another project down the road, so, thanks!
It will be very interesting to see how many people leave a suggestion for a song for the contest that is already over under this post. If you're reading this, don't be those people...
....I'm not joking...
...if you're unsure of what I'm seriously not joking about, go back and start from the top of this post again...
(now let's sit and watch)
Wednesday, February 27, 2008
You can help select the song that I will use for Gwyneth's 2 month birthday video on March 8! You give me your suggestion, and I will choose the song I like best. Winner gets nothing more than a "thank you" and their name/handle posted on my blog!
Here are the rules of the contest:
1) Each person only gets ONE entry, so make it a good one. It can be serious or silly...I promise to check out each suggestion. If you give me more than one song, I'll delete your post and you'll be disqualified from the really awesome prize.
2) No Country Music.
3) No songs with cursing or explicit content.
4) No songs about elephants or paper clips (because I said so). :)
5) Give me the title and artist so I don't have to go searching all over to try to find it.
She is having a bit of a down day today. As you can imagine, just about any activity, no matter how small or short a time involves a lot of physical strain. She becoming a little frustrated at her inabilities.
She's also having problems with her blood sugar. Several times in the past few days her sugar level has dropped well below 50, which can be very dangerous. The endocrine team is doing their best ti figure out what the issues are, but it seems there are always issues with her blood sugar, so we're trying to take it in stride.
Thanks for your thoughts and prayer today! I'm getting ready to whoop her in an intense game of scrabble...
For over two weeks I waited for Tricia's response. But, I certainly did not wait while sitting on my hands...if I couldn't convince her with my words, I'd convince her with my actions.
I did some landscaping one day at her family's house while they were away. I changed the oil in her car. I took her mom a flower for mother's day. I even made Tricia something very cool for her birthday (May 13), and embarrassed her a little when I showed up at her house unannounced to give it to her (ask her what it was and she might tell you).
We continued to hang out a lot, and I just bit my tongue whenever the urge came to ask her what she had been thinking concerning our late-night conversation, not wanting to push her if all she needed was a little more time to think
One night, I invited her to go with my family to see a high school play that my youngest sister, Rachel was staring in. After the play, that night, we stopped at a sound access on the same street that our church is on to talk and look at the moon and stars. I have always been fascinated by the moon...earth science was the only science I ever enjoyed, and I loved learning about how the moon works. I love nothing more than to spend time outside under a full moon, especially on the beach.
As we sat next to each other on a bench, under a nearly-full moon, I told Tricia all about the how the tides of the sound and ocean were caused by the moon.
I remember that Tricia was slightly chilly that late evening as we sat and talked...I offered to warm Tricia's hands with my own.
I suddenly had the chills too...
You are now a little bit bigger than 12 inches long and a little bit more 1lb 10oz.
Your seventh week was your best yet! While you didn't grow much, you were taken completely off IV feeds for the first time ever! You have been able to stay on the CPAP all week, which is a good sign that you may never have to go back to the vent! Your blond hair is growing so long, and your fingernails are almost ready for the first trimming!
You were moved twice this week. The first time to a room all to yourself, which was nice for all of your family when we came to visit you. You had another negative MRSA swab, which means you could be out of contact isolation in less than two weeks! You did not have as many visitors this week because the hospital won't let anyone but your parents and your grandparents see you because they don't want you to get sick with the flu.
And, this past week, your mommy was finally placed on the transplant list, which means she could be breathing with new lungs any day now!
In the next week, we're praying that you'll continue to do well on the CPAP, and that you'll really begin growing more because of all of the milk you are eating. We're also praying that your mommy will get her new lungs so that she can come see you just as much as your daddy gets to see you.
We love you!
Compare our Blessed White Rose at:
Tuesday, February 26, 2008
> If you are interested in getting my permission to play our videos for church events/services, please do so by Emailing Me.
> We've been told that Tricia has been given a score of 55 (out of 100). Apparently, 55 is incredibly high, and places her on the top of the list for patients here at Duke. That's a good thing.
> Parents of preemies (at least, here at Duke) are given the freedom to decide what they're preemie baby is going to eat, assuming that the baby is actually able to eat. The options, as far as I understand them, are basically either the birth mother's milk, donated milk or formula.
> (this varies between different transplant centers) Organ donor recipients are given the option to send a letter/card to the donor's family a year after the surgery (some choose to contact, others don't). Neither side is given any information about the other (race, age, cause of death, reason for need, etc.) until this first contact, and the primary communication is done through the transplant organizations. If the donor's family wants to respond, they can. I've heard of many stories of the donor family having a kind of adoptive relationship with the donor recipient.
> I've created a new label titled "Q/A". Click Here to see every Q&A post and find answers to other questions.
I've already blogged several times today, so don't miss the stuff below...
1) How are you able to be in Duke with your girls full-time?
The simple answer is that I've been blessed with a job/career that can cater to our current situation.
When I was going through the interview process shortly before taking my current job as a "worship leader" at Nags Head Church almost two years ago, I explained to the pastors (five of them) that something like our current situation at Duke may come up in the near future. I was actually thinking just about transplantation and not about a premature baby. The pastors agreed that the church would support us if this kind of situation arose.
Last summer, after we learned that Tricia was a candidate for a transplant and we began making plans to relocate to Durham, I sat down with our pastors again and shared what the plan was...at that time, we did not yet know that Tricia was pregnant. Our original expectation (pre-pregnancy) was that we would move to Durham in early September, be listed and activated in late September, and probably be transplanted and home by Christmas. I planned on working as much as possible while away (I do a lot just on my computer), and I began preparing the people that I lead in ministry at the church to carry on without me (which they've all done with excellence).
Of course, the expected four month stay has turned into almost six months and will not be completely over for at least another two months. I haven't accomplished nearly as much work as I had originally planned, especially in the past two months, but the church and pastors have been incredibly supportive and flexible. Although all of the details haven't been worked out, I'm sure I've used up all of my vacation and sabbatical days for the next 30 years... :)
The amazing thing is that, either partly because of what God is doing in our lives, or maybe because I'm more of a Jonah than a David, the church has been experiencing some incredible things over the past few months that can truly only be attributed to God's hand of blessing. The church is growing and flourishing and being blessed in so many amazing ways...we truly miss being home and being a part of what's going on at NHC.
2) How are your medical bills being taken care of?
The simple answer is that we have no idea other than that God continues to bless us in extraordinary ways.
Tricia's yearly medical bill over the past few years is astronomical. She has spent an average of about 20 days per year in the hospital over the past three + years. We have a very high deductible, which we have met before the end of January every year. Our biggest out-of-pocket expense has been her medications and equipment.
The total cost of an average double lung transplant at Duke is somewhere in the ballpark of $300,000.
I honestly have no clue what is going on with Gwyneth's medical bills, but quite honestly, that's the least of our concerns at the moment, and we know that God will take care of us.
We have incredible health insurance (you get what you pay for)...it would take an entire blog post to share the miracle of how we we have been blessed with good, secure insurance. One of the biggest reasons that many people are turned away from being admitted into a transplant center is the inability to pay for the medical bills due to lack of insurance. Our insurance is paying for nearly every penny of Tricia's transplant, as well as several thousand dollars of our housing costs during the transplant process.
Through God's grace, my parents had the wisdom to set up a Trust Fund for Tricia about two years ago to help with her medical bills. Hundreds of family, friends and total strangers have donated to help us, for which we are incredibly grateful. This trust fund can help to cover the cost of meds, equipment, travel expenses, housing, and any other expenses related to Tricia's medical care. The trust fund does NOT cover any of Gwyneth's medical expenses or any personal finances. (If anyone is seriously interested in finding out more info about the legalities of starting a trust fund, you can email me your questions)
About a year ago, after more than one attempt, Tricia was finally accepted for Social Security Disability Isurance. It's not a pot of gold by any means, but it does help.
Also, both Tricia and Gwyneth are now receiving Medicaid benefits, which is very helpful at the drug store, especially.
I'm sure that there are even more ways to secure financial help for medical needs. The key is contacting and befriending the people who know. One of the best places to start is with a medical social worker.
I have no idea if any of this info will be helpful...I hope it is. You can ask me more questions about this stuff, but I'm not sure that I can give you much more info.
Monday, February 25, 2008
Since being placed on the list last Friday, Tricia has been asked to participate in 4 different studies. One of these studies involves examining her old lungs after they've been removed from her body via the transplant surgery.
Over the years, Tricia has been asked to sign the legal papers for hundreds of these studies/trials.
She has never said "no".
Tricia believes that her purpose in life is to give God glory by allowing Him to use her CF to be a blessing to others. She has participated in numerous studies that have been used to discover new techniques, meds, treatments, etc. for CF and other diseases.
And, Tricia is not alone. It is because of the willingness of others who have gone before her to participate in similar studies that Tricia is alive today. Even baby Gwyneth has already been signed up by her father for a few studies of her own.
Tricia also desires that her body be donated to science and research upon her death. Because of her disease (and other circumstances), Tricia's body won't be much good for organ donation...but, she can still make a difference by allowing researches to learn more about CF and other medical issues. She told me about this desire of hers a long time ago, and although it's not exactly what I think I would have decided for her, I have promised her that I will be sure that it happens.
I tell you this for two reasons:
1) If you are ever asked to participate in a medical study or clinical trial, I hope that you will at least consider the lasting effect that it could have on millions of other people in our world. These studies are not for everyone, but they do help everyone.
2) If I haven't yet convinced you, yet, to become an organ donor, I hope that this post will possibly help move you a little closer. Organ donation isn't for everyone, but it can help everyone.
I continue to be amazed at my wife and her willingness to help others, even as she is in the middle of an extremely difficult situation. Just today, she reminded me of her wishes. Every time she is asked to do a study or trial, she barely even gives the person time to explain what it is all about before she says, with a smile on her face, "Yes, I want to help other people."
A David Psalm1 Light, space, zest— that's God! So, with Him on my side I'm fearless, afraid of no one and nothing. 2 When vandal hordes ride down ready to eat me alive, Those bullies and toughs fall flat on their faces. 3 When besieged, I'm calm as a baby. When all hell breaks loose, I'm collected and cool. 4 I'm asking God for one thing, only one thing: To live with Him in His house my whole life long. I'll contemplate His beauty; I'll study at His feet. 5 That's the only quiet, secure place in a noisy world, The perfect getaway, far from the buzz of traffic. 6 God holds me head and shoulders above all who try to pull me down. I'm headed for His place to offer anthems that will raise the roof! Already I'm singing God-songs; I'm making music to God. 13-14 I'm sure now I'll see God's goodness in the exuberant earth. Stay with God! Take heart. Don't quit. I'll say it again: Stay with God.
(If you're unfamiliar with the details of the choice we made to keep Gwyneth when we discovered Tricia was pregnant, I recommend you Read This First, before reading the rest of this post.)
I've been thinking about risk today. I've always been a very cautious person, not willing to do lots of crazy things, rarely having the guts to break the rules, etc. I'm sure that is hard to believe for some people who have read our story, knowing the great risks we've taken to keep Gwyneth Rose. Even before reading a few recent comments (some of which appear to have been posted as kindly as possible, which, again, I appreciate), I knew that the risks we're taking are hard for many to understand.
Please, know that I am only posting this because I myself find it to be an interesting conversation. I'm not trying to defend our actions, nor am I attempting to convince anyone that the choices that Tricia and I have made in life are the same choices for everyone. I'm simple putting this out there because this is my blog and I can do what I want to with it (I say that in fun).
So, here are a few things I know to be true about risk:
1) "Risk", as a noun defined by Dictionary.com:
> exposure to the chance of injury or loss; a hazard or dangerous chance.
> the degree of probability of such loss.
2) It's impossible to live this life without taking risks. Getting out of bed each and every day involves a certain level of risk. Love, food, travel, friendship, money, and so many other aspects of every day life involve risk. There is really now way to know for certain the risks or outcomes with anything in this life.
3) Everybody lives their life based on calculated risk. There are certain things that I do and don't do that are (at least in part) based on risk factors. There are things that you might do that I am unwilling to do based on risk. My life is as "boring" or as "exciting" as I want it to be (again, in part) based what I perceive to be the calculated risks involved with each action.
4) Pregnancy is always a risk. Hopefully this isn't news to you, but a healthy pregnancy, for both the mother and child is never a given thing. In fact, The (US) Statistics Show that the risks for complications for mother/baby during and post pregnancy are very high. Every mother should be made aware of the possible risks involving her pregnancy. Preemies are born every day, many to completely healthy parents. (I'm NOT trying to scare anyone...hopefully this info comes as no surprise to anyone)
5) A person's belief system plays a huge role in determining the risks he/she is willing to take. Whether a Buddhist, Agnostic, Christian, Muslim, Atheist, Occultist, etc., or no label at all, you and I make our decisions based on what we believe to be true about truth, family, faith, eternity, morality, ethics, and everyday life. And, people with different belief systems will never agree with or understand each other entirely.
6) The greatest rewards are often a result of the greatest risks. I think our story is evidence enough of that...
Tricia and I have made our choices, especially over the past few months and years, based on our beliefs. Waiting until after our first year of marriage before trying to start a family was a risk that we were willing to take based on our beliefs. Trying for two years to have a child was a risk that we were willing to take (and one that our doctors were supportive of). Stopping our efforts and moving forward with the double lung transplant was a risk we were willing to take. And, carrying an unplanned (at least our plans) pregnancy was a risk we were willing to take.
Some have criticized our choices, and many more have simply not been able to understand. And, quite honestly, that's OK with us. While we understand how others could have chosen differently than we did, we can't understand how we could have chosen differently.
PS. I've disabled comments under this post because, as I said, I'm not looking to start a debate or a preach-a-thon for any side of this subject. If you want to discuss this with me, feel free to shoot me an Email. And, as always, I don't assume that anyone will read or care about anything I have to say...if you do, thanks!
What do you think? You have until 11:59pm on March 2, 2008 to cast your vote. Only one vote per username, so don't waste it!
And, earlier this evening I taught Gwyneth how to wink...it seriously only took a few minutes and just a little bit of super glue (can you say "baby genius"?).
Sunday, February 24, 2008
I have deleted a ton of comments for many reasons without saying a word about it, but the moment you begin criticizing and insulting my family is the last straw. I forgive you and, with this post, I am putting it behind me, but I won't allow you to continue abusing me and my family.
I realize that this action will not cease all of the cruel comments, but it will help greatly as most of them have been posted anonymously.
I am deeply sorry to those of you who post anonymously with words of love and joy and encouragement...I realize that this action will inhibit some of you. I want you to know that, beyond two or three comments today, it has been a good day to read your responses to my blog, and if you're concerned if it was your comment(s) today that has caused this, just search to find if your comment was deleted or not and you may have your answer.
Those of you who have a blogger, google or OpenID account will still be able to continue commenting. I encourage the rest of you to take just two minutes and sign up for a blogger/google account if you wish to continue commenting (and I hope you do).
It is a shame that the actions of the few must affect the the ability of many more to post. I was hoping that I would never have to do this... It's extremely disheartening that some people simply refuse to even attempt to "understand" the things that they cannot see or hear or know about our situation.
I'm also very sorry that I've come across with such a negative spirit lately...I have been spending way too much time deleting comments and focusing on the hurtful words, and I promise that will change starting right now. You will not read me write of this again.
I am deeply appreciative of those of you who have posted of your thoughts and prayers and well-wishes, your encouragements, you stories of hope and love, your ability to make me laugh and experience the joy of blogging, and I pray that you will continue posting just as you always have. If you have any doubts that your kind words have not affected me in an incredible way, I encourage you to Read This Post from several weeks ago.
I believe that God is capable of doing incredible things, even through cruel people and especially through those of you who have been such a blessing to me and my family over these past few months...He is my Rock.
Thank you so much.
Tricia is unable to feed Gwyneth because of all of the meds she (Tricia) is on (and some other reasons).
Therefore, Gwyneth is eating donated preemie breast milk from mothers of other preemie babies. Don't ask me how it works...all I know is that I have been told, by the NICU people here at Duke, that there are about 9 "banks" in the US, and one is very close to Duke, which makes for easy access for the NICU here at Duke (many NICU's that are not near a bank have a difficult time obtaining donated milk from a bank). She eats milk that is appropriate for her age, and as she grows bigger and older, will be given different milk from mothers of babies of the same age/size.
You can read more about preemie breast milk Here.
That's all I have to say about that.
I'm finding it interesting that, as I spend more and more time in and around the hospital, especially the NICU and Pulmonary Ward, the more I am able understand a lot of this medical stuff, and the more I realize I do not understand people who seem to be going/have gone through similar situations.
I'm coming to a realization that every situation, no matter how many similarities there may seem to be to my own, is totally unique and different. I may totally understand how Tricia's vent works, or why Gwyneth is in contact isolation, or why Duke has restricted visitation because of the flu, but my understanding of these things really doesn't go much further than my own experiences.
I've never been one to say, "I understand what you're going through" or "I can empathize with what you're feeling"...but, the past few months of observing my own situation, witnessing bits and pieces of the situations of other patients and families around us in the hospital, and reading the comments of those on this blog who think they understand what we're going through have left me with a realization that I have no idea what other people are really going through.
I have friends, right now, who are loving and struggling with the adoption of their first child, friends who are celebrating and grieving the life and death of their mother/grandmother, friends who are remembering the birth and death of their precious baby boy, and friends who are preparing for the roller coaster of chemotherapy. Although I can empathize with all of these people to a certain degree, and I can relate some of what they've gone through and are going through from a medical standpoint, I am still at a loss for words and actions when it comes to really understanding their emotions, thoughts, etc.
Even if the situation seems to be exactly like mine on the surface, there are so many things going on behind the scenes- things that I will never know or see - that I can never again even imagine that I might fully understand what somebody else is going through.
I can (and will) certainly use my experiences to help others who are going through similar experiences, but only when they ask for my help and are willing to offer me more than just bits and pieces of their own story. I'm discovering, through living in our current circumstance and by trying to offer (what I consider to be) feeble help to others who are hurting, that the best thing I can really do is to simply let them know I'm here and that I love and care for them and will do anything for them.
I've been told by several people that the Banquet was excellent and that my videos along with the stories of others who shared really made the evening meaningful.
BTW, several people have asked when Gwyneth is going to be getting her new lungs (via transplant)...not sure how I ever communicated that she needed a transplant...her lungs are perfectly healthy, but underdeveloped (along with the rest of her growing body) because she was so early. In fact, I'm fairly certain that lung transplantation for babies her size and age are unheard of.
And, thanks to my sister-in-law Megan for answering some of your questions for me.
Those of you who have been with us for a while might remember This Post from about 6 weeks ago.
Kelly Byrd is running the New Orleans Mardis Gras Marathon tomorrow (Sunday, Feb 24, 2008) with her friend, Patty Sue in honor of Tricia. She has been raising money for Tricia's Trust Fund for the past several weeks.
Here's what she had to say about the race...
If you would be so kind…can you pray for me and my Patty Sue (running partner) on Sat night? Typically we pray for a little pain and a lot of fun! Doesn’t usually happen but I’ll take all the help I can get! I got really sick last week and unfortunately my lungs took a beating from an infection. I couldn’t run all last week which is tough this close to the race.
The race starts Sunday at 7am. It normally takes me about 5 hours to run a marathon. I’m no Kenyan! It looks like the weather is going to be in the 70’s which is ok. 50’s would be better but I’m not complaining.
Please, join me in praying for and thinking about Kelly and Patty Sue today and tomorrow morning. We're excited to hear a report from her about the race!
You've all been to the stadium and seen the athletes race. Everyone runs; one wins. Run to win. All good athletes train hard. They do it for a gold medal that tarnishes and fades. You're after one that's gold eternally.
I don't know about you, but I'm running hard for the finish line. I'm giving it everything I've got. No sloppy living for me! I'm staying alert and in top condition. I'm not going to get caught napping, telling everyone else all about it and then missing out myself.
(I Corinthians 9: 24-27)
Run a good race, Kelly!
Saturday, February 23, 2008
Another CF test came back negative...this one was for the less common mutations of the gene.
Also, she'll be IV free tonight for the first time, eating ONLY the breast milk. This is great news!
She's been awake several times when I've been with her the past few days, and a few times, I've opened the door to the incubator and listened to her crying...it's the most beautiful sound ever.
Here are a few of the latest pics.
When I found out a few days ago that Tricia was projected to be activated by the end of the week, I decided not to go...but I still wanted to share our story via video. I had just a few hours to write my thoughts down, shoot the video below, and edit, so it's not as perfect as I'd like it to be, but I think it's not too bad.
Anyway, they'll be showing the following two videos tonight. I'm praying that these videos will help people understand and appreciate adoption, premature babies and God a little more.
The Flu is rearing it's ugly head. They say that there is even a flu virus going around that is not affected by the flu shots handed out this year.
The hospital put up signs yesterday warning of the flu and asking anyone who may be sick to not even enter the building. Only primary caregivers are allowed to visit patients.
Please, pray that people will have wisdom when visiting the hospital over the next several weeks. Please, pray as we trust God that Tricia, Gwyneth and I (and our parents who can still visit) will stay germ free. If Tricia or Gwyneth were to contract the flu, it would be a very bad thing.
Visit This Article to learn ways to stay germ free.
Friday, February 22, 2008
Although I've discussed most of this before, here's a more detailed overview of the transplant process. In my mind, there are basically seven steps (although that may differ between transplant centers)
1) Evaluation - the patient and medical staff have determined that the patient may be in need of a transplant in the near future. There are many transplant centers in the US, and finding one that accepts a patient's insurance and will accept a patient as a candidate can be tricky for some. Fortunately, we did not have any issues with this step. Each center has a different evaluation process. Duke requires a week-long series of tests and interviews.
2) Candidacy - the transplant center has identified the patient as a candidate for transplantation. A patient may be a candidate for a period of time without being listed depending on his/her health. Most transplant centers (like Duke) require candidates to complete a certain number of days of physical therapy and prove that they are physically capable of having a good chance at survival before they are listed. Candidates are encouraged to relocate to within two hours of the transplant center.
3) Listing - the patient's health is to the point where he/she either needs a transplant or will soon need a transplant. Most patients are placed on the transplant list and "activated" (see next step) around the same time, but some are listed and not activated for months or even years depending on the progression of their disease (many CF patients tend to plateau at certain points, and can be listed but not activated).
4) Activation - the patient has entered the window of opportunity in which he/she is sick enough to fall under the criteria at the top of this post, and not so sick that he/she would not likely survive the surgery and first year after. The wait for the right set of lungs begins, which could be the same day as the activation, or it could be months or years (many transplant patients die before receiving their new organs). Deactivation (while remaining on the list) can take place if the patient becomes too sick or weak to still be considered a candidate for the surgery. Some patients bounce back and forth between activation and deactivation. Once activated, patients are required to relocate to within two hours of the transplant center.
5) Surgery - when the transplant center is notified by UNOS that a set of lungs had become available, a call is made to the two patients who most closely match the available lungs. Both patients are prepped for surgery while the transplant team evaluates the lungs and determines if they can be used. If they are good lungs, the patient who is the best match goes into surgery. Surgery at Duke usually lasts between 6 and 10 hours. I prefer not posting the details of the surgery because it's very intense (feel free to look it up on your own). We've been told that it's equivalent to a severe, blunt-force-trauma auto accident.
6) Recovery - (the following is true for best case scenario) patients come out of surgery on a ventilator, are brought out of sedation over a 24 hour period, are up and walking the day after the surgery, spend less than a week in the ICU before moving to a "step-down" unit, are out of the hospital within 2-4 weeks, and are required to complete a certain number of days of PT before being totally released to return home. PT actually begins as soon as the patient is awake. Lots of complications can arise...most of them are very life threatening.
7) Life - (we're still learning about this part of the process) patients are sent home with a whole new set of meds, new equipment and a new way of living. Lots of steroids and immunosuppressant drugs. Avoidance of germs, sick people, and crowded places. A new, clean (and easy to clean) house. It's basically a trade-off of one way of living and drugs and treatments for another. (But, we're not complaining!)
I suppose there is a 8th step...death. CF is a death sentence...there currently is no cure. Lung transplantation is simply an attempt to prolong and improve life. Many CFers do not make it beyond 3-4 years with new lungs, and most CFers do not make it past 8 years. A second transplant is sometimes an option, but it's a difficult option. Infection and/or rejection are the two leading causes of death for a transplant recipient.
Anyway, I hope that gives some helpful info. As always, use the "Transplant" label over there on the right side of your screen to see what else I've written concerning organ transplantation, or visit UNOS.org.
Sorry for the confusion...
Thursday, February 21, 2008
A stranger’s gripping story of life and near death
You never realize how small the world is until you become united with a complete stranger over a single thread of something in common. Life changes in a New York minute.
A diagnosis, a promotion, a new baby. It’s those life altering changes that happen when you blink. Or when you think you’re ready but you’re really not. If you’re fortunate, you have someone to share it with, no matter how good or bad. And sometimes you have a million people sharing it with you.
For the last two months or so, I have been following the story of Nathan and Trisha and wee baby Gwyneth. I’ve never met them. And I likely never will. Their story is one that will stay with me as though I did...
I'll be taking a break for a few days from blogging. I'll let you know of any big updates. Please, try to understand. And, as always, thank you for your thoughts, prayers and encouraging words.
Tricia has been fever free since Sunday, which is a great sign that she's truly infection free. Now, we just need to keep her that way.
Gwyneth is still on the CPAP and doing well. She was moved to a different room today so that they could clean the room she has been in. She's now in a small room all by herself, which I like because it means she'll basically have one-on-one care, and I get some privacy when visiting her. :)
Just a heads up...the days I don't post much are usually a sign that it's been a busy, but good day. The days when there's bad news, you'll either hear from me or my dad or Andy either on this blog or on theirs. In the meantime, please, Think Twice before voicing your worries, begging for an update, or feeling the need to defend me/us on any point. While we (in some way) appreciate the concern, I promise it won't accomplish any good, as evident by all the deleted comments under This Post. (and, there's no need to apologize, defend or mention anything along those lines...moving on)
I'll try to post again this evening sometime if I can get a few minutes.
Wednesday, February 20, 2008
> As always, I say this with love... I've been asked several transplant related questions that I've already answered several times...I want to encourage you, if you're new to the blog to use the "Labels" over there on the right of your screen to do a little research. Also, Google is a great tool. I would love to answer every question, but I just don't have the time or energy, so I hope you understand. But, just to be nice...
> There is no way to know how long Tricia will be on the list...the average double lung TX wait here at Duke is a few months. The odds of Tricia being alive this time next year without a transplant are very, very small, and her window of opportunity is even smaller, so we don't have much time. It could be the minute after she gets listed, or it could never happen.
> The vent that Tricia is on is not portable. Like I said, without a new set of lungs, her CF will kill her in the near future.
> Gwyneth "sleeps" probably 22 hours a day right now (that's just my guess from observing). The only times she seems to be truly awake is when the nurses or other staff are messing with her...every now and then she'll be awake on her own for a few minutes. She does look around, but I've been told that she has little control over her eye motion, and that she probably doesn't register with anything she's seeing yet. I do think she can recognize the sound of mine and Tricia's voices (although Tricia can't speak when she's on the portable vent in the nursery).
> There's another great question that was asked that I'm going to devote an entire post to later.
Joe and Kendra's boys seem to continue to do well. I can't imagine having to go to work every day and only being able to visit evenings and weekends...I'm sure it's rough and I know they'd appreciate your continued prayer.
Tuesday, February 19, 2008
You are now about 12 inches long and 1lb 10oz.
Your sixth week was a good one. We are falling more in love with you every day, and you celebrated you first Valentine's Day. Even though you didn't gain any weight, you are eating more and more almost every day! The nurses moved you back to CPAP this week, and so far you've been doing very well. You have your very first eye exam, and everything "looks" perfect! You need 3 more negative MRSA swabs to get back to a more comfy room in a few weeks.
This week, your mommy was able to spend some time with you without your daddy around, which she thought was very nice. We found out today that she will be put on the transplant list in just a few days, which is very exciting news! Your daddy was able to hold you again a few times, with you wrapped in a blanket.
In the next week, we're praying that you'll do well on the CPAP and that your lungs will continue to grow stronger, and that you'll eat more and more. We're also praying that your mommy will get her new lungs, even maybe this week, so that we can begin making plans to all go home together!
We love you!
Compare our Blessed White Rose at:
Thank you for your continued thoughts and prayers and encouraging words. I'll let you know as soon as it's official.
On a side note, Gwyneth had her first eye exam today, and everything looks just as it should. She also had another head ultrasound, and everything is looking good there as well.
Tricia is having a good day again. She's busy at the moment checking emails and other stuffs.
Gwyneth is doing well. I just went down and took her birthday pictures, which I'll post later. She's doing great on the CPAP. The MRSA swab was negative...three more and we'll be back in a normal room (which I like a lot better).
> Tricia will probably not make it home before her transplant...she would have to be completely off the vent for that to happen, and the risk of infection and such is just too great of a risk either way.
> Tricia tells me that her trach does not hurt her at all. It's a little uncomfortable at times, and it's certainly restricting while she's attached to the vent. It's been a great thing for her so far.
> I'm actually just using the simple HP photo editing software that came with one of my printers or cameras or something...the only thing I'm really doing is a little cropping, a little antiquing, and/or a little "soft glow".
> Most of the time, I'm using a EFS 18-55mm lens with my Canon.
> The silly pics of Tricia and I from the last video were actually all taken with my MacBook Pro (way cool "laptop" with a built-in camera, for all you PC people) without any post-editing...Macs are just cool like that.
(Friendly Warning: YouTube is NOT the most kid friendly website out there. I have no control over anything but our own videos...if you stick with the videos on our site, you'll be fine, but wander far, and be careful...but, of course, that's the nature of the internet.)
Monday, February 18, 2008
These are people who have made a huge difference in our lives over the past several weeks, months and years at Duke by providing Tricia with the best possible health care (that good insurance can buy). We cannot thank these people enough.
(I'll not mention full names because I don't know if all/any of these people want their names blasted across the internet...and, we really just want them to know that they're appreciated)
Dr. K has been Tricia's primary CF doctor for about the past 6 years. We both believe that, beyond her own lifestyle choices, it has been the efforts and skills of Dr. K that has allowed Tricia to live the life she has had for the past 6 years. Although we don't always see eye to eye, and he is a Yankee through and through, Tricia loves and respects him.
Edana is Tricia's CF nurse practitioner and her best friend at Duke. She is the yin to Dr. K's yang, and Tricia loves her dearly. Edana has invested many hours being a great source of encouragement to Tricia, especially over the past several weeks.
Bill is Tricia's CF social worker, and one of our favorite people in the world. He has taken a lot of professional and personal time to invest in our lives as well as in the lives of our families. Bill attended our wedding, has been a great advocate, and sat with our parents and I in the waiting room during Gwyneth's emergency C-Section.
The 7800 Team has been the hands-on care for Tricia during most of the time she has spent as an inpatient at Duke over the past 8 years. The doctors, nurses, RTs and other staff have provided great care and friendship for Tricia. Even while she was in the ICU recently, I felt compelled to take a walk through 7800 every few days and give the latest update on the two girls as I was swarmed by their familiar faces.
The Physical and Occupational Therapists (in the hospital) are both Tricia's best friends and most hated enemies. These are the people who have the heart of encouragement and the skills to help Tricia maintain or return to her best possible health. This team has especially gone above and beyond recently in helping Tricia prepare her body and mind for the upcoming transplant.
The 8200 ICU Team went so far above and beyond what we could ever have expected. I'm not allowed to even tell you half of what they did for us, and for that we are eternally grateful. Every person was almost perfect in every way. Several have come to visit Tricia down on 7800, which is very nice. A special thanks to Dr. M.
The OB Team who helped care for Tricia and delivered Gwyneth. The OB clinic appointments were, of course, our favorite, and the care and attention provided to us (even now) in the hospital has been amazing.
The NICU Team for taking such incredible care of our little White Rose. I really don't think there's anything else we need to say about that. :)
The Center For Living Staff have been an intimate part of Tricia's life over the past several months as she had been working with them 4-5 days a week for physical therapy. They will continue to work with her post transplant, and have been following her journey closely as she has been in the hospital these past several weeks. She misses you and the other patients!
The Transplant Team has been and will continue to be an incredibly important part of our lives. This huge team is responsible for just about everything involving Tricia's entire transplant journey. They have lots of tough decisions to make about so many patients, and their care and concern for Tricia has been very evident.
Our Nags Head Church Family who have provided such a loving and strong support for us during this journey. Even though most of them have been unable to be here in Durham, we know that they have been on their knees in prayer and thanksgiving for all that God is doing in our lives. We miss them and love them all so much.
Our Family and Friends who have spent so much time here with us over the past several months and weeks. So many to even begin trying to name. We are so thankful for their presence here (those who have been able) and can't imagine even making it through just a few days without them.
I'm sure there are so many more who we are forgetting at the moment, so please, if you're reading this and we haven't mentioned you, it's only because our brains are fried. :)
We're praying that Tricia will be listed tomorrow. We'd really appreciate it if you'd join us.
Gwyneth was moved to CPAP yesterday and is doing great so far. I got to hold her last night while they changed her incubator. They're increasing her feedings today, which is also great news.
A short Q&A:
> I actually don't drink caffeine...I never drink coffee and I only have about 1 soda w/caffeine a week.
> "Bump" means that I'm moving an older post up to the top of the list.
> Actually, Tricia's nurses do have the freedom to bump and rearrange a few of the things they do to/for her so that she can get a little more sleep at times...some do it, and others don't...I'm sure this might be different at other hospitals, but that's how it works here (and we're thankful for those nurses who are willing to do it).
I'll post some new pics later today when I have a better connection.
This was originally posted on 1.7.08, when I thought that Tricia might be asleep for just a few hours after her intubation...if you somehow missed this post, I think it's a good read for everyone.
Please, if you have known Tricia at any point in time, and you would like to share a story/memory/etc. about her with everyone else, leave a comment on this post. She'll be sleeping for most of the day tomorrow (although you can post at any time), and it will be incredibly encouraging for her to hear me read to her your memories when she wakes up.
(If you don't know Tricia...like, really know her in person...please, simply read along and don't comment on this post so that we can keep it on target)
Sunday, February 17, 2008
At first, I panicked, feeling the urge to run out of church and get back to the hospital as quickly as possible. But, then, I actually let the things that I was hearing that day at church sink in...I spent most of the rest of the service praying (sorry, Matt) and feeling at peace.
Tricia is feeling better, and Gwyneth is being placed on CPAP as I write this.
This is the part of the story that could be extremely hard to believe...some of you will wonder if I'm lying, others will call me things like "idiot", "cocky" and "sexist", and some may question Tricia's sanity...you'll also be tempted to start a theological discussion in the comments (which I'm more than happy to delete)...I'm just warning you.
So, here I am, sitting in my pickup with a girl I'm crazy for, about to tell her something that I know is going to totally change our relationship forever. Either she's going to ultimately feel the same way about me and we'd live happily ever after, or she's going to be scarred for life and never want to speak to me again...the next few minutes would prove, one way or the other, to be a culmination of the past 9 months of my life...
Needless to say, I was shaking.
Our conversation lasted for about 30 minutes, and there's no real easy way to share everything about it, so here are the cliff notes (imagine that the following is Nathan talking with Tricia)...
I really like you. I think you're just about the most incredible girl I've ever met. I think you're beautiful and fun. I love your personality and how you love God with all your heart. You seem to bring out the best in me and I have literally been crazy about you since the day we met last August. I have no idea if you have been aware of how I feel for you, and I have no idea what you think about me, and I know that this conversation is going to change everything, but I've been wanting to tell you for a long time, and I can't hold it in any longer...
Umm...I really like you...as a friend. I love hanging out with you, but I don't think that I have those feelings for you. I'm not really attracted to you in that kind of way. I don't think you're the one.
So, basically, I had no plan about what I was going to say to that...even after so many months of imagining this conversation in my head, I really didn't have anything planned out beyond what I had already said. So, the next part was completely me going into desperation mode...honest, but desperate.
I basically had a theological discussion about the will of God with Tricia concerning marriage, attempting to persuade her to give me chance. Without going into details (and giving anyone even more reason to have a discussion with me), I shared with her about what I believed God wanted for us as His followers...that He has given us certain guidelines about certain things, but has left the decisions in our hands (with His help). (I'm purposely trying to keep this part vague...if you absolutely have to know exactly what I said, as some of our college friends about the "steering wheel analogy")
I explained to Tricia that I didn't believe that she was "the one" for me either (because I don't believe in "the one"), but from what I knew and experienced about her so far, I would be very, very happy with her for the rest of my life...and I knew I could make her just as happy. Even if she didn't feel the same about me, I told her that (and here comes the really crazy part), if she'd just give me a chance at this deeper relationship thing, I knew that, within a matter of days, she'd be just as crazy about me (you don't know what "stepping out on a limb" really means until you've told a girl that she'll fall in love with you).
I knew that I was taking a huge risk at being so open and honest and blunt with Tricia. I knew that what I was saying could come off as incredibly cocky and jerkish...but I was hoping that, in the time we'd spent together, Tricia had come to a place where she could at least hear what I was really trying to say.
All of this time, I could tell that Tricia was listening and thinking about what I was saying. I could also tell that I hadn't convinced her yet. So, I asked her to, at least, take what I'd shared with her and think about it for a while. I told her I'd give her as long as she needed to give me an answer (I'm not sure if I ever really asked a question).
As she stepped out of my truck that night, and I watched her walk into her house, I felt a great sense of relief...I also felt a new sense of anxiety, knowing that the last 30 minutes could have been the beginning of the end for us.
Back to the waiting game...