Two More Miracles

Gina is a a young CFer who just came out of double lung transplant surgery, literally hours ago. She is having a rough time in her first few days.

Anthony is a 12 year old CFer who is also just a few days out of a double lung transplant. He is doing as well as possible.

From experience, both Anthony and Gina and their families could use the same encouraging words that you gave to us a few months ago, so please, take even just a minute to swing by their blogs and lift them up.

And, of course, there are two more donor families who could use your thoughts and prayers right now...

Thanks.

Nate

(Bump) Haley Palmer

Haley passed away just a little while ago. Please, take the time to visit her site and leave an encouraging message for her family. CF is a horrible disease, but we can make a difference together.

I've been watching Haley Palmer's Story, and, though many of you are already aware of her, I thought I'd mention her for those who aren't.

Haley is 12, with CF and in desperate need of a transplant, but first, she is in critical condition because of other issues. Her family remains hopeful, praying for the same kind of miracle that Tricia and Gwyneth received.

A few of our family who have also been following Haley's blog have noted how much Haley reminds them of Tricia at that age, and I have to agree (from what I've been told of Tricia at that age).

I know that Haley's family would appreciate your thoughts and prayers right now.

Thanks!

Nate

GearUp4CF.org

Our CF/TX friend, Eva (65redroses.livejournal.com) is helping her dad raise money for CF in a really cool way.

Bill Markvoort is joining GearUp4CF to raise money for the Canadian Cystic Fibrosis Foundation by riding across BC, Canada. The 10 day ride begins in just a few days, so don't miss out on this opportunity to support CF research.

Eva put together the video below to help her dad raise as much money as possible to help find a cure for CF. Check it out, and please, consider Clicking Here and sponsoring Bill by donating the the CCFF today!

Thanks!

Cell Memory

Tricia made an incredibly important statement just a few minutes ago...

"I don't think I like cranberry juice anymore."

Considering that cranberry juice is all she ever drank pre-transplant, and that we've spent more money on cranberry juice during our marriage than we have on all other food products combined, this is HUGE!

On a more serious note, this could be part of a transplant-related phenomenon known as "Cell Memory".

Nate

Answers

Wow! You people really know how to ask some questions.

There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.

I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.

To make it easier, I split these up into categories.

Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.

Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!

Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).

Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.

Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.

Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.

I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.

Thanks!

Nate

ABC Video Up! (Edit)

The video of Tricia leaving the hospital is up! The two guys shown several times in the second half of the video (and who I shake hands with at the very end) are the two surgeons who performed the surgery.

Check It Out Now!

Nate

PS. The web director for ABC11 says that our "story is unbelievable online.. people can't get enough." I think you're partly responsible for that... :)

Back In The Saddle Again...

Tricia began her Physical Therapy at the Center For Living yesterday! 1 day down, 22 to go!

Tricia must complete a minimum of 23 days of PT before she will be released to go home to the OBX.

She also has clinic appointments about once a week, including some other appointments, all of which may take days away from PT, so we'll probably be here for longer than the 4+ weeks that it would normally take to complete the PT.

She will go to the CFL Mon-Fri for about 4 hours every day. I'll find fun and constructive things to do around Durham while she's working out. Check out posts from last September and/or This Post for an idea of what our schedule is like right now. We're trying to visit Gwyneth a few times a day together as well.

The pain is still there, but it is getting less and less. She never experienced the back pain that most transplant patients complain of (due to the surgery itself), but her transplant incision and chest tube incisions are still hurting her. She is also still have pain and numbness in her right arm. She is finally able to sleep a little on her sides, and she has slept very well (comparatively) her first three nights home.

Tricia still has her trach. She'll probably have it removed sometime within the next few weeks. She is still relearning how to cough, and I am able to suction her at home if needed, although I have only needed to do that once so far. And, her voice is getting a little stronger.

She is still not allowed to eat or drink anything but thick liquids. She is "eating" mostly with her feeding tube. Tricia's goal weight has been 120 for the past several years. After the c-section, her weight had dropped to nearly 110, just before the transplant surgery, it had risen to around 124, and post-transplant surgery it had dropped again to 114. She is gaining slowly but surely now, and we've been told that it should be much easier for her to gain and maintain a healthy weight as long as her new lungs are functioning well.

It is amazing to watch the timing of everything continue to work so well for us. Gwyneth is doing so well that we are able to spend the time needed focusing on Tricia getting stronger and healthier so that we can both be ready for Gwyneth when she is discharged (hopefully within the next month). There is no way I would be able to handle, on my own, both Tricia and Gwyneth at home together right now.

Finally, somebody asked me if I was going to rename my blog because I am not "a CF husband anymore"...as I've explained before, Tricia still has CF. CF is much more than a lung disease, affecting literally every part of her body that produces any kind of secretions. Her new lungs are the only part of her that no longer has CF. Her pancreas is still deficient, meaning she still must take her enzymes. Her sweat is still salty, etc. etc.

Tricia will always have CF, and I will always be a CF Husband.

Thanks!

Nate

April 24

Today is the day the doctors originally told us to expect our first child to enter the world. Imagine how different our lives (and perhaps yours as well) would be if that had turned out to be the case.

We are thankful beyond words for the huge ways God has shown Himself in and through our lives and for the countless ways He has blessed us over these past several months. We never would have imagined that we'd be where we are now back on September 2, 2007 when we discovered Tricia was pregnant.



The reality that both Tricia and Gwyneth would survive and thrive after being given a 50% chance of surviving the pregnancy is amazing.

The possibility that Tricia would ever be a transplant candidate again after the pregnancy was limited.

The chances that Gwyneth would grow to full-term from 24+ weeks without any major complications was improbable.

The likelihood that Tricia would receive her new lungs after being listed and activated turned out to be nearly impossible.

Our God loves to move in impossible situations, not only to show us love, but to also show us His glory. We pray that, beyond everything else, people will see Him.

Nate

Great News

Tricia had her last big chest tube pulled yesterday, which means, other than her feeding tube which can be turned on and off at any time, she is not strapped to anything for the first time in a very long time. She is walking without the help of the walker now, and was really moving fast last night.

As we circled her hall last night, I was able to hold her hand without gloves for the first time since early January. I can't tell you how incredible that was for me.

And, the biggest new of all...Tricia is scheduled to be discharged tomorrow (Tuesday, April 22)!!!

I'll be super busy between now and then, so if you don't read much from me over the next few days, don't be worried. I'll be sure to let you know what's going on when I can.

Thanks!

Nate

Organ Donation Myth #4

Myth - An open casket funeral is impossible after organ donation.

Truth - Unless you plan on being naked at your funeral, organ donation does not effect an open casket funeral in any way.

In fact, throughout the entire organ recovery process, the deceased body is treated with the utmost respect and care, in large part to insure that an open casket funeral is possible. Even bone, skin and eye donations are completely undetectable under normal circumstances (again, if the body is clothed and eyes are closed).

Thanks!

Nate

Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

Organ Donation Myth #3: Will It Cost My Family and I Money to Donate?

Organ Donation Myth #3

Myth - A deceased donor and/or family will be charged a medical fee for the organ recovery/removal.

Truth - There is NO cost to the donor and/or family for organ OR tissue donation.

In fact, the cost for organ recovery is charged to the organ/transplant recipient. The donor/family will be charged for any and all final efforts to save the donor's life, and sometimes those bills are misinterpreted as costs related to organ donation, but, again, the cost of organ donation is the responsibility to the recipient, NOT the donor.

As a side note: there are organizations set up that offer financial assistance to transplant patients/families who may not be able to pay for the cost of transplantation on their own. A good place to start is Transplants.org

Thanks!

Nate

Organ Donation Myth #1: Will the Doctors Save My Life?

Organ Donation Myth #2: Is My Driver's License Enough?

Are You?

Edit - I realize that not everyone can participate in the following poll...many people have been organ donors for a while and many others are unable to be an organ donor for many reasons...this post is not meant to make anyone feel left out or guilty. The goal of this poll is simply to find out who may have been moved by Tricia's story to become an organ donor. I purposely didn't add other options, such as "I have always been an organ donor and have always known it's important", but please, feel free to leave a comment about yourself if you are unable to participate in the poll. Thanks!

During the 40 days that Tricia was on the transplant list (Feb. 22 - April 2), approximately 712 people (sons and daughters, parents, siblings, grandparents) died while awaiting an organ donation.

I have literally received thousands of comments and emails from people who have told me that they have become organ donors for the first time because of reading Tricia's story. I'm very curious to find out just how many people Tricia's story has effected in this way, because I think it is incredibly encouraging to know that we all have the ability to be used to change lives.

Please, take a few seconds to answer the following poll honestly. You can answer multiple times if more than one member of your family can participate. And, feel free to comment about your decision.

Thanks!

Nate

21 Laps!

Tricia walked well over a mile (approximately 6300 feet) today for the first time in a very long time. And, we spent a good hour rolling around outside, and another 45 minutes holding and feeding Gwyneth.

All said, a good day!

Nate

The Next Several Weeks

So, here's what the next several weeks should look like for us...

Tricia needs to meet four criteria to be discharged:

1) Walking at least 1 mile daily. She walked a world record 16 laps today, which equates to about 4700 feet, which equates to about 4/5 a mile.

2) No chest tubes. She had two more removed two days ago, and another removed today. She's got one big tube and two small tubes left...the big one should be removed in the next few days, and the smaller tubes will probably be removed on her last day.

3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for. She is literally having to relearn how to cough, and because she was on the vent for 3 months, her muscles are gaining strength slowly.

4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.

She is doing great with her breathing and talking. She talked on camera with Barbara yesterday for at least 25 minutes, and I got my first phone call from her in over 3 months the other day, which was super cool. She will keep her trach until sometime between being released from the hospital and going home. This will allow her to easily be bronched every week and be a safeguard for an emergency.

Her walks are going great. She walked twice today, 6 laps in the morning and 10 laps this afternoon. She only stopped once for a breather on our walk in the afternoon. She is still walking with the Swedish walker, but mostly just to carry her chest tubes. She has been asking for less pain meds the past few days.

So, we're hoping that Tricia might be discharged by Wednesday of next week.

Lots of people are coming by to talk with us. A pharmacist came by to explain all of the new drugs she'll be on. The coordinator to teach us about lots of different transplant care. The patient resource manager to discuss a few things. I'll talk more about some of this stuff later.

Once Tricia is discharged, the first thing we need to do is go pick up her drugs and equipment. She'll be referred to the Center for Living again to complete another 24 days of PT, and then we can finally go home. It won't take 24 days, though, because she'll also have lots of clinic visits and other appointments to make that will take away days from PT. She'll also need to have a stomach wrap (very common post TX), but we haven't been told when or for how long.

Gwyneth needs to meet four criteria to be discharged:

1) Breathing on her own. She's had this one down for several weeks.

2) Weighing in at no less than 2 kilos, or 2000 grams, or 4lbs 6oz. She seems to have plateaued at 1500 grams for the past week, but we're hoping she'll hit 2000 in the next 3-4 weeks.

3) Eating completely from the bottle and none from the feeding tube (that tube in her nose). She is currently eating from about half a bottle about 3-4 times a day (she is fed 8 times a day). This will come as she grows stronger and bigger.

4) No other major issues. So far, so good.

So, we're hoping that Gwyneth will be on her way out within the next month as well.

Anyway, all of that means that we're hoping we could be home close to the first of June.

Thanks.

Nate

White Rose Blooming (14 Weeks)

Every Tuesday while you're in the hospital, we'll take a picture with your pug so that everyone can see how much you are growing!

You are now 15 inches long, and you weigh 3lbs 3oz!!!

Your fourteenth week was another great one! Your mommy finally got her new lungs! After several days away, she finally was able to come down and hold you again! You continue to grow every day, and your mommy got to feed you for the first time. And, your latest eye exam shows that your eyes are healing and getting stronger!

You finally got to move out of your incubator and into a crib! And, you were moved to the stepdown unit, which means you are doing so well and are getting closer and closer to going home with us! All you need to do is gain a little more weight and eat everything from your bottle!

In the next week, we're praying that you enjoy your time in the stepdown unit and continue to grow closer to 2000 grams and continue eating more and more from your bottle.

We love you!





Compare our Blessed White Rose at:

2 Weeks
3 Weeks
4 Weeks
5 Weeks
6 Weeks
7 Weeks
8 Weeks
9 Weeks
10 Weeks
11 Weeks
12 Weeks
13 Weeks

Interesting Day

Yesterday was an interesting day. Very monumental in our journey for several different reasons...

Tricia had an extremely rough morning. The day before was her best yet, but she did not sleep well, and by the time I woke up around 7am, she was complaining about having a lot of trouble breathing. It was very, very difficult for her, and she sat in bed all morning very uncomfortable and stressed until the docs came and did a Bronchoscopy around noon and suctioned out a lot of "plugs" (mucus that is literally plugging the airways in the lungs).

They also changed her plastic trach for a smaller, metal one. This metal trach has no cuff (the balloon in the throat that is inflated to prevent air from passing through the mouth and nose) which means a lot less airway obstruction. After the bronch and new trach, Tricia immediately felt better, which was a relief both physically and mentally.

Tricia was given a plug for the new trach, and she has been breathing since completely through her mouth and nose for the first time in over three months, as well as talking...a lot. :) The plug also allows her not to need the hydrated O2 (at room air, 21%) that she had been receiving for the past few weeks, which means one less thing strapping her down. She slept with the plug in all night and had the best sleep in weeks sleep. And, she is able to really smell for the first time in three months.

She also walked twice for a total of 14 laps, which is approximately 4000 feet. And, for the first time ever, We were able to go visit Gwyneth without any nurses or RTs in tow. And, for the first time ever, we went to visit Gwyneth twice in one day. Other than walking her laps, Tricia still travels via a wheelchair.

And, perhaps the biggest news of all...Gwyneth was moved to the stepdown nursery. There are only nine available beds in the stepdown nursery, which means that Gwyneth is one of the nine most stable babies in the NICU. It's one step closer to getting out and going home. Although the stepdown is different than the NICU, and the change is not something that feels comfortable yet, we are excited to see the progress!

I was told that we were unexpectedly on a local TV news station in the Hampton Roads, VA area yesterday evening as well...if memory serves me right, one of the stations there is partners with the Virginian Pilot, and they must have mentioned the story in the paper somehow. Which reminds me...tomorrow brings another TV interview with Barbara Gibbs and ABC 11. This interview is meant to give an update on the girls' progress as well as help promote the CF Great Strides Walk this Saturday at Duke (more about that later). I'm excited, because, hopefully, Tricia will actually be able to speak audibly this time!

Thanks!

Nate

CF Story

Not a coincidence that This ran in the Virginian Pilot on the same day as Tricia's story. We were living in the Chesapeake area when all of the fundraising for this (now) 12 year old CF girl was happening.

Not everyone gets a second chance at life...

Consider Donating to the Cystic Fibrosis Foundation to help insure that other kids don't have the same fate as Emily.

Nate

The Past Two Weeks

I'll try to make this as informative and simple as possible.

A lot has taken place since the surgery. The surgery, as described by Dr. Lin (who performed the operation) was one of the most difficult CF transplants he has ever seen. Tricia was extremely sick, and her lungs were so badly deteriorated that they literally had to be scraped out of her body.

Tricia has experienced a lot of pain and discomfort. In fact, it's easy to say, at this point, that she was feeling healthier before the surgery (sans the collapsed lung) than she has yet to feel after the surgery. She came out of surgery with 8 tubes (6 "chest tubes" and 2 smaller drainage tubes), an arterial line (left wrist) and central line (neck), and over 100 staples. She was given an epidural for pain meds, and for the first several days had sometimes up to four different IV meds pouring into her body at the same time.

We (our parents and I) were able to see Tricia just a few hours after the surgery ended while she was still sedated. She was awake shortly after, and when I went to see her a second time that afternoon, she was sitting up and alert.

Tricia dealt with the short term memory loss for about the first 5-7 days...each day it got a little better. The first day she would literally forget everything within about 1-2 minutes, by the afternoon of day 4 she began remembering a things from that morning, and by day 7 she was able to remember most of day 6. Anesthesia and other drugs affect everyone differently...some can remember everything except outside of sedation, while others, like Tricia, may never remember anything of the several days surrounding the surgery. She is still having a hard time remembering anything from the day leading up to the surgery.

Because of the short-term memory loss, Tricia constantly asked the same questions and made the same statements over and over the first few days. Her chest felt very tight. A "rumbling" feeling from a leak around one of the chest tubes felt like the secretions that she was used to in her old lungs, and she constantly asked to be suctioned, and we constantly had to explain that she didn't need to be. The incisions around the chest tubes and the incision that stretches from under one arm across her chest to under the other arm continue to be very painful.

On day 2 she had the 2 hard plastic chest tubes removed (the others are flexible rubber), her G tube replaced by a G/J tube, and the pic line placed. On day 7 she had the epidural removed.

Her breathing was and still is very difficult. The chest tubes take up some space in her chest cavity, and the many, still-healing incisions make it hard to take a deep breath without being in pain. She has no sensation in her new lungs, yet, and, of course, everything is cut up and rearranged and replaced, so it's very hard for her to really tell how deeply and fully she is able to breathe, which tends to create some anxiety. Her O2 and CO2 sats have been good, but not great.

As was explained to us before the transplant, because Tricia was on a vent for so long and transplanted on a vent, her recovery time could be expected to be longer. Normally, they aim to have most post-surgery TX patients off the vent in 48 hours and out of ICU within 4-5 days. Duke has performed around 700 TX surgeries, and only 2% (about 14 people) have been gone into surgery on a vent like Tricia.

She finally began getting some substantial sleep on day 6, and it showed on day 7 as it was the first day that Tricia really began to act more like herself. The first week, she was almost completely focused on herself (understandably so, as your body and mind force you to be self-centered when you're in a sever medical condition). Day 7, however, she began to become more talkative, smile and laugh more and show more interest in what was going on outside of her ICU room, which was a huge turning point for her and for me.

The first week, especially, was extremely difficult for me. I won't say much, as we love Duke and are always thankful for the incredible care we receive, but, added to the emotional and mental stress of the surgery and recovery as well as the inability to be with Tricia 24/7 (which is stressful for both of us) were some other issues that were finally resolved after several days.

I did take advantage (as did Agnes) of the opportunity to sleep in the hotel beds for several nights in a row, and once the issues were resolved, and then more one Tricia began to return to her usual self, and then especially when she was moved from the ICU, we were all feeling much more relaxed and secure. As you can imagine, the past few weeks have also been incredibly difficult for our families.

Tricia has been walking around 2000 feet the past several days, and, for the first time since I walked her into the hospital in December, I was able to walk with her yesterday by myself without any nurses or RTs tagging along. She is becoming more mobile as she is now free of most of the chest tubes and is spending less time hooked to IV meds. We were able to visit Gwyneth together again yesterday, and hope to go again later today. Although her recovery has been slow, and she is still having a hard time breathing and is still receiving lots of pain meds, her medical team remains very optimistic that she'll be discharged sooner rather than later, which is keeping us hopeful in the difficult moments.

That's all for now. Please, understand that this is just a very simple, very surface picture of what the past few weeks have been like for us. There is so much more that has and is going on that I cannot share with you. Hopefully, this post gives you an honest but censored idea of what is going on. I'll share more soon about what to expect in the next few weeks and months. We're just incredibly thankful to God for getting us this far, and we're praying that He'll complete this part of our journey with a trip home soon.

Thanks!

Nate

PS. I'm having a hard time uploading pics from Tricia's room, but I'll try to get some up ASAP.

Q&A

I thought I'd answer some questions (as there have been a lot the past few weeks) first. I still have over 2000 comments I've yet to read from right after the transplant (I've already knocked out about 2000 over the past few days), so, as always, if I don't answer your question, it's because I can't, don't want to, already have or just haven't read your question yet (or because I plan on answering it soon in another post).

> Gwyneth is wearing clothes...has been for several weeks. The primary purpose of her clothes is to keep her warm. All of the clothes she wears are just like regular onesies, only a whole lot smaller, and most have been given/sent to us as gifts as we have yet to buy anything for her. Some come from the NICU, but just when she runs out of clean stuff we've brought in. The nurses usually dress her. Mico-preemie clothes are difficult to find except on the internet. Hopefully, someday, we can give what we're receiving away to somebody else in need.

> "Blood gas" is the level of O2 and CO2 in the blood. They take a few blood gases (draw blood to test for the levels) from Tricia every day to make sure her lungs are working the way they're supposed to. They're especially watching for dangerously high levels of CO2.

> Somebody left a comment a few days ago saying that organ donation NEEDS to be outlined in a living will...this is NOT true (at least, not in most states). Yes, a living will is one good way to insure organ donation, but most states (and soon, every state) have new laws that declare that either the drivers license or online registry is all that is needed for the deceased to insure that their organs are donated.

> I take 99% of the pictures you see here on the blog...even the ones of me holding Gwyneth. Thanks to family and nurses for the shots that even my long arms can't handle.

> Gwyneth doesn't have reflux issues. Her crib (as was her incubator) is tilted to help insure that it stays that way.

> As I've mentioned before, I'd prefer not to go into great detail about the transplant surgery....as you can imagine, it's pretty hard-core and I don't want to gross anyone out. You can very easily find lots of reliable (and lots of unreliable) info with a quick google search...I've even been told you can find a video of an actual surgery. I'll give you some of the basics of the surgery in anther post soon.

> To answer This Puzzle (like anyone even remembers), Rosie owned a house in Nyack, NY while I was a student there at Nyack College '99/'00...I could even show you which house it was (actually, could just show you the really tall fence and gate).

Thanks!

Nate

Light

Finally, we're beginning to see the light at the end of the tunnel.

Tricia was moved to the step-down unit this afternoon, and we immediately both felt a sense of relief and relaxation. It's not quite the familiar feeling of 7800, but it is beyond explanation how much more comfortable it is than the ICU.

It could just be a matter of a few weeks before Tricia is discharged from the hospital, and Gwyneth is getting closer and closer everyday. The anticipation of the transplant is gone, the possible setbacks of the NICU seem to be fading away with every new day, and our minds can now begin to finally turn toward thinking about getting out of the hospital and going home.

We're certainly not there yet, and, especially with Tricia, there are still some major obstacles to avoid and/or work through before we make it back to the beach, but it really feels like we've been through the most stressful parts now.

I'll tell you more soon about the past several days as well as more about what we're expecting over the next several weeks, but for tonight, I'm just going to enjoy spending time with my girls.

A big thanks to Agnes for helping to disperse info to the fam, and to my dad for updating the blog.

Thanks!

Nate