Saturday, February 21, 2009

Answers (At Last!)

> Tricia has not contacted her donor's family yet. The transplant team suggests you wait about a year before writing the initial letter, so hopefully it will be something that we do soon. Depending on the response (or lack of), we may or may not share anything with the public about our possible correspondence with the donor's family.

> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.

> Yes, I finished "The Story Of Us" a LONG time ago...

> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).

> Janet...you can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.

> Megan...your yellow ae sweatshirt is in our living room.

> Here is the meaning behind Gwyneth's name. We did have a boy name...

> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.

> Cookies are my weakness (along with ice cream)...it's hard to say what is my favorite, but chocolate chip might be it.

> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.

> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.

> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).

> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).

> This is my favorite song at the moment.

> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.

> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.

> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.

> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.

> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).

> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.

> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.

> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.

> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".

> Plastic.

> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.

> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.

> Vacation...that is something we're currently making plans for...stayed tuned...

> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.

> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....

> My mom's hand healed up very well...it's not perfect, but nearly.

> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.

> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").

> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.

Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or concerned...as we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!

Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.

We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.

> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.



Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.

Nate

48 comments:

wife.mom.nurse said...

Thanks for sharing all of those answers.

I was telling my husband about your blog. I told him about how sometimes people are so inappropriate with comments! He was posting about grieving his recently deceased brother and within 2 weeks of the loss of my brother in law "anonymous" was telling him to "lighten up".

I truly feel that if people do not appreciate what a blogger has to say they should just move on!

Enjoying your blog...

nanajobx said...

"We do get recognize in public, almost always around Durham (never at home, except for people visiting our church"-
Actually you do get recognized at home. I saw the 3 of you outside Belk's and it was a little weird.I knew so much about you and I was just some stranger outside of Belk. Respecting your privacy I did not introduce myself. :)

Erin said...

I loved reading your "About Us" story again.

I loved reading the answers too. I laughed about Megan's sweatshirt..how funny! Although, I do hope she gets it back soon. Also, my niece was a micro-preemie and experienced some vision issues too (she just had her 4th or 5th eye surgery last month at 25 months). Isn't it amazing at all the progress these little miracles make? GO GWYNETH!

Once again thanks for sharing your story with the blogging world & have a terrific weekend (especially at Gwyneth's birthday bash!)

Justine said...

Thanks for the answers, it's always a neat post. You previously answered a question of mine about Gwenyth and my daughter's similar size and development. And I must say, reading Tricia's latest entry I had somewhat of an awakening. She's exactly right, you know? Babies don't stay little for long, and we ARE blessed to get to have them ittie bittie for a while longer. I think I have been focusing way too much on the doctor's worry about her missing milestones and not enough time just being a grateful and proud parent. Thanks guys, as always your family is such an inspiration.

Anonymous said...

Wow! As the mom of a micro-preemie (now thriving at age 5--yay!) I have to say how wonderful your attitude is. If I had it all to do over the one thing I would be sure to do more of is enjoy the now and worry less about the later. Once again you guys are amazing.

Emily said...

Thanks for the answers! It is so interesting to see what people ask & how you answer. I love reading your blog & I must admit that I check on ya'll at least once daily! Your family is inspirational to me & I am so happy that I found you! Keep up the good work!!!
Emily in Mississippi

Elisha said...

OH MY...The comments on the Cheesie are crazy. Seriously though.My kids ate them at that age too ... Although my oldest did choke and had to be rushed to the hospital when he was 1. Very Scary...So keep an eye out for that but dont worry about the sodium.lol.

Elizabeth said...

Thanks so much Nate. Not just for shedding some light on our questions, but for being you. As one commenter mentioned, we should all feel so blessed and fortunate that you have opened your lives up in such a way. We should all feel privileged to know about you, Tricia, and Gwyneth. I'm feeling a bit discouraged at some of the comments that people feel the need to share. It is such a shame. But again...thank you for sticking it out. There are those of us who genuinely care! Give those girls lots of hugs from those of us who do!

Priscilla said...

Thanks! The whole cheese puff to cigarette comment made me literally laugh out loud!! You guys are such a cute family. Rock on!

MJMILLS said...

You're awesome!

MJMILLS said...

Forgot to mention....I'm now dying laughing at the comments on the cheetoh pic! This is what is wrong with people....they take life way too seriously! I'm glad you guys can relax and take "it" all in! In so many ways, the "un=normalcies" (sp?) are such a blessing for you. They allow you to stop moving so fast in this hectic world. You get to stop and smell the ROSES! LITERALLY!

Froggymama said...

So lovely to read this insight into your lives.

And I just cannot imagine being a first time mom, and having to deal with all the issues you guys have had to struggle through. Being a mom is hard enough, Tricia should win a Mommy Oscar Award. Tomorrow while watching the actors receive their accolades, I'll think of you two who truly deserve an audience of ten million, getting a standing ovation with friends saying, "well done."

pam said...

I know you do not know me but i wanted to encourage you to talk to the donor family. My brother passed away almost 12 years ago and we donated his organs. First the process is not as easy as everyone thinks. When my mom got to talk to the families who recieved organs it made her day. i truely think that is what has gotten her through the last 11 years. Thank you for your blog and for letting me see the other side of organ donation

Jamie said...

Thanks for sharing. You're an amazing and inspirational family. I applaud you!

The Gang's Momma said...

I love these Q & A posts. Only sometimes, I have to stop and think what the Q might actually be :)

Did you happen to see the post over at 5 Minutes For Special Needs (under the umbrella of 5 Minutes For Moms)? It's an interview with a mom of a little guy with CF. Another very inspiring story and peek into their life.

As for the unsolicited comments and advice? I love the way you handle them, both the deletions and the responses. I wish I had that much grace - you've been a good example to me.

Megan and Company said...

Tricia can keep the sweatshirt if she buys me some calimari the next time I'm down.

Momof2bz said...

Nice update on Q & A. I normally don't ask questions b/c I feel like u'll share what you want. I liked hearing the favorites stuff and that Tricia is doing more b/c she feels better. That is always great to hear. I also got a good chuckle about the one issue and loved how you dealt with it. It's good to hear that Jeff is doing well too. I had also forgotten (sorry) about your mom's hand which I am happy to hear is healing and hope that the progress continues. I hope your party went well.

SmWonder00 said...

Nate, I love the blog. I'm so addicted. I feel as if I know you guys. Please continue sharing, I always sense your hesitation in sharing too much with the world and I hope that you continue to ignore those people who have nothing better to do with their lives than to tell you and others what to do. You are a wonderful family. I aspire to be parents like you one day!

Our life is a bowl of Barry's said...

That whole cheese puff post was pretty funny....you DO put up with too much! Have a good Sunday and thanks for hsring.

Our life is a bowl of Barry's said...

And I can't spell, actually, type or proofread...sorry, that would be 'sharing'!!

Carmen said...

Nate I missed the cheese puff pictures, lol. I usually never read all the comments, I found them funny. When my grand-daughter was under weight, I told my daughter to give her chocolate covered doughnuts. I said they made me fat and they would put the weight on her too....It is hard to share your life with so many people, so many opinions...

Grayson and Finley said...

Dear Nate, Tricia and GR, I am so sorry that people feel the need to be so negative. They must not have enough love in their lives (and appearently to much time on thier hands)!! My family and I enjoy the blog and also have a blog of our own, so we understand. I figure you cant please 'em all!! So Keep on Blogging....

Anonymous said...

Yes, you are definitely recognized.. We went to a Carolina ballgame a couple of weeks ago and while standing in line for the bus, we met a guy who works at Duke in respiratory therapy. I asked if he knew Tricia, he said he most certainly did, and she was an amazing woman. I told him that I follow your blog and that we pray for Tricia and your family. I felt quite honored to "know" a celebrity, albeit through a blog. As always, keeping you all in my prayers.

Anonymous said...

Hi Nate,Trish,and Gwyneth:

Just wanted you to know that out 6 of my biological neices/nephews 5 of them were premies and all are doing very well medically and even academically.

It may take them a little longer but they catch up in time.

The last two were identical twins and were the smallest.~wieghing at 3lbs 1oz and 3lbs 2 oz. I know they were bigger then Gwyneth was at birth.

They were 8 weeks premature but both are developing into beautiful young ladies with no medical issues and will be 11 yrs old the end of May.

So your right, Gwyneth will catch up on her own time.

If visual is the only concern you have then she is doing remarkable for a micropremie.

Anonymous said...

Thank you for the Q and A! I love the way you share your story and I appreciate your writing style.

Anonymous said...

Hi Nathan,
Your pictures of Meka and Ralphie (who looks just like my cat) actually spurred me to ask you something...I hope it's not too late. How do you and Tricia deal with the constant challenge of pet hair? With Tricia's heath, I'm sure it must be an issue, and I was wondering if you have developed any tricks you could share with the rest of us.

Thanks!

Anonymous said...

thanks for answering the questions you could! And in case comments from anonymous users gets turned off, thank you for being so kind as to share snippets of your lives with us. With much love to you and your family, Jane.

Jen said...

ROFL over the cheeto post. Better turn the comments off before you feed her a hot dog........

Blessings From Above said...

This was fun! Thanks for taking the time to answer all our crazy questions!

PamelaWarren said...

Hi nate,
I didnt see you answer if Gwyneth is finally off her oxgyen?

Mary said...

That was a very interesting read. Glad you guys are doing well. Still continuing to pray for you all.

Mary
Florida

Anonymous said...

Even my rather recent introduction to life on Facebook has taught me a lot about both the joys and the dangers/risks of sharing thoughts and happenings online with lots of people. I have a whole new appreciation for what you are doing and dealing with on this blog! Along with so many others, I am glad you have stuck it out.

As the mother of three young kids, I can say WOW to what your little family is doing. New parenthood is challenging enough when the baby is full-term and mom is relatively healthy. So may God be with you in this remarkable journey you are on...your great love and faithfulness to Gwenyth and to each other is precious in His sight. The three of you are deeply, deeply loved by the One who knows all of our suffering, sorrow, and JOY.

Lauren said...

Based on the comments on your final installment of The Story of Us, I'm not alone in thinking it wasn't finished and I've been wondering if it would be continued as well. I would especially like to hear more of Tricia's side regarding that night soundside when you both "got chills."

amanda said...

Kudos to your comment about cheese doodles, but I couldn't help but really laugh at all the controversy surrounding a cheese doodle...when there is so so much more to be concerned about in our worlds and the world at large, and Nate thanks for all that you share with us..especially that beautiful birthday cake video...simply ADORABLE!!!

Jellybelly said...

What is Gwyneth's typical diet in a day? like what kind of formula? or milk? Or is that too personal?

Scarlet and Gray said...

The comments about the cheetohs were crazy! I love hearing how your family is doing and pray for you often!

Anonymous said...

Hi, I fed my preemie daughter cheese puffs too because it helped with her fine motor control (which was delayed) and learning to grade fine motor movements. Can't do much with a cheese puff that you smashed to dust with too much pressure! What ignorant comments uninformed people left regarding that photo.
Beth

Anonymous said...

Thanks so much for the Q and A. Hooray for Gwyneth achieving pincer grip and honing her fine motor skills! Screw the cheese doodle police. I know this is ugly, but her children will have lots of fodder for the therapist when they finally break free of her controlling-paranoid-fearful grip. They will probably hate her for denying them even moderate indulgences and go to opposite extremes as adults - believe me, I know! Perhaps she really isn't that way and just made a bad judgment call when she hit "publish comment."

The Haughs said...

Thanks for sharing all of those answers. You all are such an inspiration!

And my goodness are people uptight over a cheeto or WHAT?!

I'm a speech pathologist and work in early intervention and am thinking YAY for self-feeding and YAY for that pincer grasp! THAT'S what people should be talking about!

Korey said...

Hi Nate,

I've been reading your blog for a while now, lurking really. I have a question: how do you ignore/forget about/move on from the comments like those on the cheese things and others that you've removed and written about? I know you've posted about people leaving mean comments from time to time, but then you move on and forget about it. Is that hard for you? I think I would be so discouraged from blogging. What i think when I read things like that is that one day this negative people are going to result in you no longer blogging, and all your readers will be punished... how do you continue in spite of these people?

Anonymous said...

the cheese doodle comment o rama made me laugh out loud. as a peds nurse who works with delayed and special medical needs kiddos, i saw bring on teh darn chessy puffs! orange sticky fingers are great. she looks like she is growing and blossoming and is happy. thats really all you want! what good is a healthy happy little girl if you cant give her junk food now and again! god bless!!

Jen said...

I think those answers are so great. I'd love to visit your church like other people have seemed to do. It would be cool to meet you guys. It sounds to me like G is doing just fine even being a micropreemie. What the heck is normal anyway? She's alive, you're alive, Tricia's alive. You believe in God, you are enjoying life because unlike other people with "perfect" lives you know the real value. Don't sweat the small stuff should be studied as a part of the curriculum in public schools.

You guys are awesome!

Becky said...

My little Annabell (a former 23 weeker) got glasses in July due to poor vision. Her motor skills improved very quickly and she was able to walk up and down steps almost immediately. Here's hoping you guys have the same success.

Anonymous said...

Yeah!!! Awesome Answers!!

Lisa said...

Thanks for sharing your life with all of us. It is amazing what I have learned about micro preemies and living with CF. I appreciate the facts and honesty of your life you write about. I do not understand in inappropriate comments about the cheese doodle, or anything else for that matter. If they don't like it they shouldn't read it, while all parents parent differently it is great to see a happy family handling what has been given to them with true smiles on their faces. Thank you for continuing to blog through the bad stuff and the bad peoples comments. You've opened my eyes to a new world. Thank you

Anonymous said...

Cool! Thanks for sharing. Your honesty is refreshing.

Mikaila said...

Hi Nate-

I searched your post labels and I wasn't able to find the answer to my question, but if it's there, let me know and I will look again!

I'm wondering how you set blogs to auto-post at a later date/time. I've tried it but the post always shows up right away, just postdated. Very frustrating.

You can e-mail me at: isaiah354(at)gmail(dot)com.

Thanks! I've loved reading, especially lately! Gwyneth is really blossoming. :)

~Mikaila

Debm said...

bivercHearing from our recipients was healing. Don't wait, that's hooey from misguided people, not from actual donor families. We wait to hear.... and after seven years eight months two days, still wait for five of them to write....