ConfessionsOfACFHusband.com

Tired of trying to remember cfhusband.blogspot.com every time you stand on the street corner shouting to the world about Tricia and Gwyneth?

Well, now you can now use ConfessionsOfACFHusband.com to point all of your groovy friends our way! Because, it is soooo much easier to remember...

Nate

PS. Some very cool (maybe the coolest ever) updates coming your way late this evening...

Are You Watching The Same Story I'm Watching?

I'm up late (cause that's what you do when your sleeping clock has gotten totally reversed), and I just read a comment about me on somebody else's blog that basically said that it is Satan who is putting me (and my girls) through this experience.

I want to say again ('cause I've already basically said it Here and Here, and because I think I probably can't say it enough): It is God Who is "putting" us through this journey.

How do I know this? Two reasons:

1) "This" journey is the answer to Tricia's Prayer, and knowing what I know about God and Satan, God answers the prayers that are prayed to Him, and Satan can't do a tiny thing about it.

2) "This" journey has been extremely painful at times for both Tricia and I (and it's only just begun), but the joy has pushed the pain so far away that I'm still surprised when it tries to resurface, and from what I know about God, He ultimately likes to bring His children a lot more joy than pain...so I must assume that this is God's doing.

Just because you cry a lot and experience lots of pain and empathy for us and our story (which we do appreciate, I think) doesn't mean that we always share those feelings with you. I can promise you that both of us see the miracles God all throughout this journey, and, even if this story were to end tonight, I'd hate to think that we ever gave Satan any credit for anything that has taken place. Yes, God has something great in store for us in the future, but that great thing is only an extension of what He is doing for us right now.

I'm not mad or upset...just amazed that people are seeing this story as anything but what it truly is... You are free to think what you'd like about this whole thing, but for me and my house...

Nate

ICULater

Tricia was moved to her normal floor today! Already, her heart rate is down and she's falling asleep! This is something that probably should have happened several days ago, but we're glad we're here now, and that's all that matters.

We'll miss the great staff in the ICU, but we lovingly say that we hope we never see you again (at least up there)! :)

Nate

The Past Few Days

With Tricia's permission, I'd like to share a little about what's been going on with her over the past few days...

Basically, since Friday, and especially on Sunday and Monday, Tricia has been dealing with a serious case of Psychosis/Delirium (the for sure diagnosis has not been established yet). There were probably several factors that brought this on, including lack of sleep, postpartum hormones, lots of meds, and the physical, emotional and mental toll that the past several months has taken on her body.

The first signs came on Friday morning when Tricia began saying things and acting in ways that were not characteristic of her. Over Friday and Saturday she became increasingly anxious, stressed and confused. Early Sunday morning, while I was at the hotel sleeping, she woke up thinking and yelling that her nurse and other staff were trying to kill her. They had to use physicall force to calm her down, and she spent time off and on until about 10am on Sunday sleeping.

When I arrived back at the hospital Sunday morning, I could tell right away that she had gotten worse since I last saw her. She was beginning to spend several minutes at a time zoning out and being unresponsive, and when she did seem to be with us, she was very paranoid and confused. This behavior increased all day and late into the night until, by the time she got to sleep with the help of some haldol, she was spending almost all of her time staring off into space, occasionally repeating (either with her lips, or, when she could, with her voice) a word or phrase over and over again.

I stayed with her all that night, remaining mostly awake, and Agnes and Don arrived early Monday morning to allow me to go to the hotel and sleep for several hours. When I arrived back at the hospital around 3pm on Monday, her condition was about the same, and remained that way until later that night.

All during this time, I had a peace about what was happening. For reasons I won't explain right now, I was very sure that Tricia was going to be OK...that she was simply allowing her mind to take a break because she had been through more than her conscious was willing to handle. I was certainly very scared and concerned for her, but deep inside, I knew that God was giving me comfort to know that she was safe.

All day Monday, they put Tricia though several physical/mental tests and scans, all of which came out negative. Around 10pm, Monday night, she began growing increasingly annoyed and even angry and upset. Around 11:45, she woke up from a short sleep very upset, and it took everything for her nurse and I to hold her down and keep her from hurting herself until other staff could come in and help.

They gave her some haldol, and within 15 minutes she was sleeping. She slept very well until about 7am Tuesday morning, and when she woke up, she seemed to be very lucid and communicative, although she was still a little anxious and confused. The past two days have been very good, and she has not had any issues and has grown increasingly comfortable and relaxed.

She tells me that she can remember some of the past few days, but a lot is very blurry. We're hoping that today they'll move her out of the ICU and back to her normal floor where she'll be much more comfortable.

I'm sharing this with you for two reasons:

1) We want you to know how much we've appreciated your thoughts and prayers, especially over the past few days when you weren't even sure what to think or pray for.

2) We want to document as much as possible so that other CF, Transplant and High Risk Pregnancy patients who come after us will have as much information as possible to work with (even though Tricia's experience is NOT the most common).

God continues to show His hand of protection over my two girls. Beyond a few hours on January 8, this past week has most certainly been the most difficult to get through, and I've relied more heavily on His promises and your prayers and encouragement.

Thank you!

Nate

Always

Tricia was feeling very anxious tonight (around 12:30am), so I offered to run down to the car and grab my guitar and sing for her. The first song I picked was a combination of "Always" (Hillsong United) and "Everything" (Lifehouse). This is one of my favorites to sing by myself or in a crowd.

Here are the lyrics:

Did You rise the sun for me
Or paint a million stars
That I might know Your majesty

Is Your voice upon the wind
Is everything I've known
Marked with my Maker's fingerprints

Breathe on me
Let me see Your face
Ever I will seek You

'Cause all You are is all I want, always
Draw me close in Your arms
Oh God, I wanna be with You

Can I feel You in the rain
Abandon all I am
To have You capture me again

Let the earth resound with praise
Can You hear as all creation lives
To glorify one Name

Breathe on me
Let me see Your face
Ever I will seek You

'Cause all You are is all I want, always
Draw me close in Your arms
Oh God, I wanna be with You
I wanna be with You
Oh God, I wanna be with You
I wanna be with You

How can I stand here with You
And not be moved by You
Would You tell me how could it be
Any better than this

‘Cause You’re all I want
You’re all I need
Everything, everything

Tricia actually sang along with me as best she could...when we were done, she told that was good enough...we prayed together and now she's sleeping, and soon, I will be as well.

Nate

(Check back in tomorrow morning when I'll share some details of the stuff that Tricia has been going through the past few days)

White Rose Blooming (3 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 still about 12" and 1lb 4oz.

Your third week was a little scary. You had some tummy troubles for several days, but the doctors and nurses finally figured out the problem, and now you're feeling much better. You still haven't eaten much, and you're still on the ventilator, but we're hoping that both of those things will change soon!

And, this week, you and your mommy finally got to meet each other for the first time! She was able to visit you twice, and the second time she even got to touch you with her gloves on!

In the next week, we're still hoping that you will be moved to the CPAP machine and that you can begin taking some breast milk. We're also hoping that you'll be doing so well that your daddy can begin the "Kangaroo Care" with you, holding you on his chest skin to skin for about 30 minutes at a time, every other day. And, we're praying that your mommy will be doing so well, that she will be able to hold you soon as well.

We love you!





Compare our Blessed White Rose at:

2 Weeks

And More Answered Prayers!

(This is Rick again. Nathan's on break.)

Tricia's sister Megan has been with her all day and reports that Tricia has had a wonderful day! In fact, she's asked Megan to paint her toenails and they're playing a game of scrabble. Sister stuff along with prayers has made a big difference.

The next step for her is to move her down to a regular room and out of ICU. We hope that happens very soon, and with today's upbeat improvements, it probably will.

Along with the fantastic news about Gwyneth's blow out, this is turning out to be a day of celebration.

Go God!

Answered Prayer!!!

Gwyneth Rose's distention is all but gone! The barium enema they gave her did the trick (meaning it helped her make a few very large poops)! I went down to visit with her around 2:30am this morning, knowing that they had taken another x-ray at midnight and hoping for a good report. The nurse practitioner showed me the x-ray they had taken at 4pm yesterday compared to the one they had taken at midnight tonight, and the difference was incredible.

Thank you so much for your thoughts and prayers!

They said they may wait a little while to let her intestines and tummy relax, but they should try the CPAP again and start feeding her both within the next few days, which is great news.

Please, pray with us that the distention is a thing of the past, that she will tolerate the CPAP well, and that she her belly will love the breast milk and her body will begin growing more because of it.

Tricia still needs your prayers. I'll share more when I feel comfortable doing so, but just know that the past 48 hours have been a huge setback for her.

Thank you (back to my break)!

Nate

A Few Things I'm Learning (or) Making Lists is a Good Way to Kill Time in the Middle of the Night

> I whine and complain way too much.

> Other people whine and complain way too much.

> Living on hospital and fast food can make you really fat.

> Our families mean more to me than anybody else on earth.

> God loves to prove Himself to anyone who may doubt Him (and I'm first in line).

> Pugs are the best dogs in the world.

> There ain't nobody's wife tougher than mine, and there ain't nobody's mother tougher than Gwyneth's.

> Talking with God is so much easier and funner when it's a constant, throughout the day kind of thing, as opposed to a set time before meals and bed (for both of us).

> Nurses need to be paid a lot more.

> ICU nurses need to be paid even more than a lot more.

> People who live with God but without close friends and family have it rough.

> People who live with close friends and family but without God have it rougher.

> Orange FILAs are the most comfortable shoes in the history of the world.

> Nothing beats a God-centered, worship-driven church family.

> Everybody appreciates a smile, especially in hospitals.

> The little things can matter the most.

> God is The Solid Rock.

> Good music is so under-rated.

> The person who invented Blogs should be named king of the world.

> Don't judge other people who don't appear to care when you are in a crisis.

> Hospital social workers are my heroes.

> Sunshine is under-rated.

> Windows are even more under-rated.

> Strangers can be your best friends.

> God never wastes a hurt.

Nate

Alice In South Africa is doing great!!

(Sorry, this is still Rick)

Check out Alice's blog for some fantastic news. Nate posted about her earlier.

Monday, Jan. 28 update

This is Nate's dad filling in for him while he takes a break...

Gwyneth is still about the same. She did have an enema, which did produce some results! However there is still some swelling. So this afternoon they are going to do a barium enema in radiology, which will pinpoint any blockage. Doesn't sound like fun, and is more "invasive" (according to her nurse), but will hopefully give some answers. I know you'll pray.

Tricia is still in ICU. The stresses of everything in the past 3 weeks are being tough on her right now. It's (stress, baby, meds, hormonal changes, ICU, surgery, etc.) all ganging up on her. Her mom and dad, as well as Nathan are with her. She desperately needs some good sleep. Thanks for your prayers for her continued healing.

Nathan got some good sleep this morning after being up with Tricia all night.

I'm sure that soon he'll be back here with more updates and photos when he's rested. Your kind words and prayers are really helpful to them all.

Rick

2:25pm Update

Both girls are doing about the same physically. I got plenty of sleep last night, and Tricia got a little more than she has been getting. Thank you so much for your prayers!

The past few days have been emotionally rough for Tricia and stressful for me (and Agnes). Without going into details, we appreciate your prayers more than ever right now, especially for the mommy.

I'm taking a break from blogging anything new for at least a few days. Please, feel free to continue hanging out on the blog, but try to resist the urge to call, text, email or Facebook (while I'm on break), unless you are family or close friends (you know who you are).

Thanks!

Nate, Tricia & Gwyneth Rose

Prayer For Us

I'll be selfish tonight:

Tricia had another good day, but she was very exhausted from everything she did yesterday. Hopefully tomorrow she can have some more energy. She took another walk, and we went and saw the baby again tonight (first time was last night). I'll post some more pics tomorrow...

Biggest prayer for Tricia right now is SLEEP! She's back to the same sleeping pattern she was in the last few weeks before Gwyneth arrived...this will lead to another crash and burn, but this time there won't be a 9 day sedation party like she enjoyed last time. Please pray with us that she will start sleeping at night!

Gwyneth is doing about the same. They say her belly is a little smaller (good thing) than yesterday, and they're pretty sure the issue is simply some stool (poop for the immature among us) stuck in there somewhere. She has been stooling (what a funny word) a few times a day, so they're hoping that it will work itself out shortly (with the help of some Glycerin Chips).

Biggest prayer for her is that this Distention will go away and they'll be able to start feeding her breast milk AND take her off the vent and on the CPAP.

I spent the night with Tricia last night, getting about 4 hours of light sleep in the recliner... Went home this morning for another 4 hours of deep sleep. I'm heading home in a bit, and will plan on sleeping in tomorrow.

Biggest prayer for me (and Agnes who is trading shifts with me) is that I will get enough sleep and won't get sick (this will greatly depend on Tricia getting the sleep she needs at night). (This is not an invitation for you to offer me suggestions on sleep, etc....I'm doing well so far, but every now and then I have lots of catching up to do)

Thanks!!!

Nate

Pray For Alice (Possible Infection)

Our CF friend, Alice, who just went through a double lung transplant, may have an infection, which at this stage (less than 1 week out from the surgery) could be very serious. Thank you so much for praying with us for our friend.

Nate

Best Post Ever! (No Words Needed)

I Find This Amusing...

So, one of Tricia's Attendings (big time doctors) today looks just like Matthew Fox from the TV show, LOST. Seriously...as soon as I saw him, that's what I thought of...it probably didn't hurt that he was wearing a doctor's coat (Fox plays Dr. Jack Shephard). I just thought you'd like to know...

Nate

Make sure you read below for the latest update!

10:27pm Update

Tricia did awesome today. She sat in her chair for most of the day, took a walk up and down the ICU hallway (twice) and stayed off the vent for 7 hours straight! She'll try to go even longer tomorrow! Needless to say she is exhausted and ready for some sleep.

Gwyneth is about the same, which is a good thing. They're keeping a close watch on her and doing a lot of precautionary stuff. She is sleeping and breathing like a champ, so it's obvious that she could care less what's going on inside her belly, so that makes us feel a little easier. As soon as her GI stuff gets well, they'll stick a feeding tube down her throat and give her a few more drops of breast milk.

I am hanging with Tricia tonight, although I may head home if she sleeps as well as I'm hoping she will.

Here are a few pics from the past few days!








Check in tomorrow morning around 9am EST...I promise that my next post will be the best ever!

Nate

Kill Some Time

(Friendly Warning: YouTube is NOT the most kid friendly website out there. 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. Our church uses YouTube as a way to connect with our community, both inside and outside the walls of the church building. I'm only posting this because I've had a few people ask me to post videos of some of the churchy stuff we're involved in.)

If you really want to, you can watch lots of ME at our church's YouTube Link. We have 36 videos, most of which feature ME at some point (that's what happens when you're the best looking guy at church). Even if you don't like churchy stuff, make sure you take a look at the three "TRUNK or TREAT" Sonic-style commercials...they're basically the most awesomest YouTube videos ever in the history of the known world.

Enjoy!

Nate

(Bump) Webcam

(Thanks so much for your help...I think I've got lots of info to work with so far, so I'm disabling the comments since many of them seem to be suggesting the same things. I'll let you know what we figure out...talked with the NICU docs again, and a 24/7 camera is definitely not doable, but I should be able to either take something in with me, or keep something in there and turn it on when I'm in there, so we're definitely going to do something. Thanks!)

I need your help again (please, only respond under this post if you seriously know about this stuff so that we can keep it on point)!

We'd like to try to set up a webcam at Gwyneth's bed so that Tricia can watch her whenever she wants. The NICU doc mentioned this yesterday, so I'm assuming that it will be OK (and I'll check for sure).

I know nothing about webcams, so I need some help from those who do. Tricia has her laptop and we have (slow) wireless internet access in the hospital. What should I look at buying, and how exactly would it work?

Thanks!

Nate

PS. This has nothing to do with a new computer...I'm not going to leave a computer (and I don't think they'd allow me) down in the NICU, and I don't think Gwyneth really cares much about trying to see/hear us while she's in the incubator. We just want to be able to watch her, and we don't mind if it's a slow/delayed connection. :)

11am Update

Gwyneth is about the same. She looks "a little" better today, according to the nurse. Thank you for your continued prayers. I may not update much today, unless something turns either way.

Tricia is doing incredibly well! She was off the vent (and on oxygen) for about 2.5 hours last night, and she's been off this morning for about 3 hours. She says that she can tell a difference in how much easier it is for her to breathe today than even last night (without the vent). This is a great thing. I would not be surprised if she's of the vent and just on oxygen pretty soon!

She hasn't been sleeping well since coming off the sedatives (even with the help of some sleeping meds), so please pray with us about that. My feeling is that it's a combination of the vent (can't do much but sleep on her back) and the ICU room/ward (which is not as comfortable or as quiet as her normal rooms/ward).

I got some good sleep last night, although I'm a little tired today. I may go get some caffeine (which I almost never drink) in a little while to help give me a boost at lest through the afternoon.

My parents and my grandmother (mom's mom) are here for a few days. Got to take Grandma in to see her first great-granddaughter last night. :)

Please, read the post below and help me if you can!

Thanks!

Nate

(Bump) Psalm 34:1-4 (The Message)

If you've been with us for a while, you've probably read this passage from the Bible with us. This is my favorite and the one I always remind myself of when things get tough.

I bless God every chance I get;
my lungs expand with His praise.

I live and breathe God;
if things aren't going well,
hear this and be happy:

Join me in spreading the news;
together let's get the word out.

God met me more than halfway,
He freed me from my anxious fears.

Psalm 34:1-4 (The Message)

Nate

The Ride Home

The hardest part of every day is the 12 minute ride back to the hotel...I can't express how difficult it is most nights to leave my two girls at the hospital and go home to my nice, comfortable, messy two-bedroom hotel unit.

Tonight was especially hard. Tricia felt comfortable enough to tell me (and Agnes) to go home (as opposed to Last Night), but it's still hard...and knowing that Gwyneth is not doing as well... I just called the NICU (at 12:22am) to find out about the latest x-ray...still the same (which is better than "worse"). I prayed with Tricia before I left, again asking God that His will be done, and reminding Him (not that He's forgotten...but, it's nice to hear it from my own voice) of the desires of our heart.

I'm hoping for another miracle for Gwyneth when I arrive at the hospital tomorrow morning.

Thank you for the cards and gifts, etc. that are coming in. I would love to respond to each, but there's just too many and I don't have enough time. Tricia's mother is cataloging them so that we might one day say "thank you" to each. I'll be taking all of the cards to the hospital soon, and I'll take pics of the gifts (that don't need to be in the hospital rooms at this time) to show Tricia.

My email is back, and I've responded to every email that was waiting...if you sent me an email and haven't gotten a response, please try again if you'd like to (I have a feeling some emails were sent to me but never made it).

Thanks! I'm going to catch up on my sleep tonight!

Nate

PS. Here's a pic of my Patty Sue (from our dating days) that I ran across tonight that I never really liked much until now...

Gwyneth

Please, continue to pray for Gwyneth. The x-ray at noon showed there is still inflammation in her bowels. They're watching conservatively right now, but it is serious if it doesn't work itself out soon. The next xray will be at 8pm tonight.

I spoke with the doctor and nurses, and they're told me that she has Distention and could possibly have NEC (Necrotizing Enterocolitic) (although, which is common among preemies/babies, but can be very harmful and even deadly. It could be caused by an infection, by normal bacteria or by a plug somewhere.

They've got her on several antibiotics as precautions. It could work itself out withint the next 24/48 hours, or it could lead to so much pressure that it could cause a leak in her intestines which will cause some serious issues.

This is the first major issue, so of course, we're very concerned. But, this another opportunity for God to show Himself.

Tricia has had another good but tiring day. Two sessions of PT, and now she's off the vent and breathing on her own with some extra O2 for a few hours of trial without the vent!

Nate

Pray For The Girls

Tricia woke up today with a slight fever, and although her temp is back to normal, she doesn't feel as good as she did yesterday. Please, pray that she does not have an infection and that she'll continue to feel better every day. She did some PT today, and everyone continues to be impressed with her progress.

The doctors and nurses are watching Gwyneth very closely today...her intestines are inflamed, which could simply be gas that will work itself out, or it could be something very bad. She has been pooping a little every now and then, which is a good sign, so they not sure what the issue is. They'll take an x-ray every 6 hours until they figure it out. This is keeping her from being fed and from being moved to the CPAP.

Thanks!

Nate

Hospital Fun at 1:30am

No wonder Tricia can't sleep...










Nate

3 Things

Continue praying for the Stanfield Family. Maddox was born today and spent a few moments with his family before passing away.

Alice continues to do well with her new lungs. Hopefully she'll be awake soon and moving around to begin her rehab.

I got a fact wrong earlier in This Post. Thanks to Rose for correcting me. Lungs are only good for 4-6 hours after leaving the donor's body. (I'm going to have to have a talk with the transplant surgeon who told us the info that I previously passed onto you...either both Tricia and I were on something that day, or he heard a different question than we asked)

Nate

Alice's New Lungs!!!

Alice continues to do well, but the first few hours, days and weeks are the most critical, so please, continue to show her your support!

Nate & Tricia

Urgent Prayer for a Pregnant Family!

Continue to pray for Kenzie, Maddox, Dusty and Deacon Stanfield tonight (January 23)!
Husband (Dusty) made it to the hospital last night, and they say that Boy (Maddox) is probably on his way tonight (pre-term), and Mom (Kenzie) needs your prayers.

Please, visit Their Blog and let them know you're praying and thinking of them tonight!

Thanks!

Nate

Q&A (With a Helpful Comment)

I don't have enough time to answer every question, and I encourage you to take a few minutes to do some research on your own, but here are the answers to a few questions asked recently:

> I've seen Joe & Kendra a few times, and they tell me that they and their boys are all doing well. I know they'll appreciate your continued prayer.

> I'm talking to some people about the jewelry. I got tons of email about this, and if you emailed me, I promise to get back with you as soon as I can...

> Gwyneth is weighed at least twice a day. She was 1lb 6oz at birth, and like most newborns, she lost a little in the following days. She is at 1lb 5oz right now, and will not gain much until they can really begin feeding her, which will hopefully be in the next few days.

> They do swaddle Gwyneth most of the time, but they also allow her to move around and kick and stretch to help her growth and strength.

> At least in the US, whenever a set of new lungs becomes available, at least two listed patients are called, and the lungs are usually given to the patient that is the best match. The lungs and donor are given an extremely thorough evaluation to determine if they are indeed healthy. Lungs are good for transplant up to 6 hours once they are taken from the donor, but donors are often kept "alive" (although brain dead) for several hours until recipients can be found for their organs.. Of course, the sooner the better, and the surgery usually takes place within 24 hours of the death of a donor.

> Make sure that you are reading the info that I am giving you very carefully. I said that the average life expectancy post double lung transplant is about 8 years. Some patients die in surgery, and some patients like 16+ years. There is no way to tell what the next day holds for anybody living with any kind of transplant. Tricia is young and healthy, so the stats say that she should well exceed 8 years, but again, that's not a given. Some patients are candidates for a second and even third transplant, but many choose not to...lung transplant surgery is the equivalent to your body as being in a severe car accident...extreme trauma.

> Most transplant patients do die because of the diminished health of their new organs or because of rejection or infection. Without a cure for CF, or some miraculous advances in medicine and technology, Tricia will not be alive in 20 years.

> You can find out a whole lot more than I could ever tell you about organ donation/transplantation at UNOS.ORG

> Gwyneth's pug is a Webkinz that was given to us for Christmas. She won't have many stuffed toys as she grows up (for her mother's health), but this one is safe with her for now.

> I appreciate all of the comments about how scary the NICU, etc. must be, but to be honest, the past 7 years with Tricia has prepared me well for the present situation. They haven't done much to Gwyneth that I haven't seen done to Tricia, and I've finally convinced the nurses in the NICU to stop being so apprehensive when explaining things to me...I've told many of them that they'll have to do a lot more than stick and prick to scare me (and yes, I realize that there will probably be complications of some kind that will be scary...I'm still human).

> Tricia has only been able to speak with her voice when she is sitting in a certain position the past few days. This is not due to anything the nurses have done...there is probably simply a leak in the vent tubes that is allowing some air to pass through her vocal cords. Most of the time still, I am having to lip read.

> I am doing very well. The good news makes things much easier. Outside of spending a night with Tricia every now and then, I get some very deep sleep at the hotel every night. My appetite is just as healthy (or unhealthy depending on how you look at it) as always.

> Both of our families are doing well, also. Tricia's mom has been up here for several weeks, and her dad and my parents bounce back and forth when they can. Siblings and cousins and grandparents, etc. have all been to visit and they are just as pleased as the rest of us with the progress of the girls.

> My email is down temporarily, so if you're trying to email me, give me a few days to respond

Nate

(A recent comment from My Dad)

One of the dynamics of blogging is that new people are coming into the story and have missed much of what has been posted earlier. Consequently many questions get repeated.

Nathan has done a great job of cataloging his posts by topic (see "labels" over there on the right side of your screen). He's been incredibly comprehensive. And it's in those earlier posts that most of the questions are answered, ie. breast milk; stuffed animals, etc.

So let me encourage newcomers especially to back track. Not only will it give you a bigger picture (and it's a wonderful picture at that), but chances are you'll find the answers to the questions we've all been asking.

White Rose Blooming (2 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!

At two weeks, you are exactly the same length (when you're all curled up) as your pug!

Your first two weeks have been most excellent. You are amazing your doctors and nurses with how well you are doing. It hasn't been perfect, but you really couldn't be doing much better. You're vent settings are as low as they can be, you've pooped, and you have a brain (without any bleeding). :)

In the next week, we're hoping that you will be moved to the CPAP machine and will do well enough so that the vent will become a distant memory. We're also hoping that you can begin "eating" more breast milk so that you will start to really grow and thrive!

And, everybody, including your doctors and nurses (in hushed tones so the other babies and mommies and daddies don't get jealous) tell me that you are the prettiest baby in the NICU!

We love you!

Double Lung Transplant 201

In light of Alice's (so far) successful double lung transplant, here's what I know about what she (and Tricia) can expect post-transplant. (these are facts about double lung transplant...not sure how much it translates to other organ transplants)

> Patients will be encouraged to be up and and walking around within 24-48 hours after the surgery.

> Patients can expect to stay under close watch in the hospital for 1-3 weeks, depending on how well they do.

> Patients can expect to participate in physical therapy/rehabilitation for about 2-3 months.

> There are lots of possible complications. The greatest risks are rejection and infection.

> Patients must relearn how to breath with their new lungs.

> Patients with CF will still have CF, but it will no longer directly affect their lungs.

> The average life expectancy is about 8 years, but that greatly depends on rejection/infection as well as the age and general health of the patient. We know some patients who are well past 15 years on their new lungs.

> Some patients will be candidates for multiple lung transplants.

Nate

Lawrensons' Best Day Ever!

Four things have made this the Best Day Ever!

1) Gwyneth Rose made a POOP! Sometime this morning! They say they'll begin feeding her soon!

2) Gwyneth Rose had another head/brain ultrasound this morning, and there is NO BLEEDING!!

3) The same Transplant Doctor who told us two weeks ago that it would be at least 2-3 months before Tricia would be well enough for the double lung transplant list told us today that it could be A MATTER OF WEEKS instead!!!

4) Gwyneth Rose is two weeks old today! Two whole weeks without ANY MAJOR COMPLICATIONS!!!!

Here are some of my favorite pics from the past two weeks, with a little editing fun.








The only thing that made today not cool was that the external hard that I bought to store all of the video and pictures of Gwyneth has decided it doesn't like me any more. Fortunately, nothing that was on it is irreplaceable, and I'm hoping when I return it to Best Buy, they'll be able to fix it enough for me to be able to restore the files to my Mac.

Thanks!

Nate

PS. Please, continue praying for Alice...by my estimation, she should be coming out of surgery about this time if all went well!

(Bump) God Answers Prayer!

A girl named Alice who has been following our story closely got the call a few hours ago that she's going to be getting a new set of lungs (double lung transplant). This could be what we call a "dry run", meaning she could arrive, be prepped for surgery and then be told that the lungs aren't quite the perfect fit for her. Dry runs are hard to deal with, but I'm praying that she wakes up tomorrow with a brand new breath!

Please, take just a few minutes to visit Alice's Blog, maybe post a comment for her, and pray with me all day long today (the surgery typically lasts for 7-9 hours) as she is scheduled for 8:30am EST!

Alice's sister will be updating her blog to let us know what goes down.

Alice just left a comment under This Post:

I GOT MY CALL!!!!!!!!!!! WAITING TO FLY IN A FEW HOURS TIME!!!!!! THE PRAYER HELPED!!!!!!! PRAISE GOD!!!!!

Thank you for praying for Alice and all the others who are waiting for a transplant!!!

Nate

Lots Of Pics

I've been taking tons of pictures of Gwyneth Rose (not that you didn't know that already), and here are some of my favorite from the past few days. Make sure you take the time to notice the details (like the tongue and the toes).

My Beauty

My Cousin

My Pride

Nate