HANG ON TUCKER

Anniversary

2011-05-06T09:06:00.000-07:00

Today is the anniversary of Tucker's discharge from Childerns Hospital Los Angeles. 72 days of miraculous work from the good people of CHLA and he was finally whole, home and ours.

This, barring unexpected circumstances, marks our final posting to hangontucker.com.

(For further updates on our families on-going adventures on planet Earth, visit houseofknox.com from time-to-time. We'll try to keep things as current as we're able.)

We'll keep this blog online as tribute, both to those who saved him and to those who showed us incredible support through it all. So, too, may it remain a document of hope, for other families facing this incredible challenge.

Our thoughts and prayers will continue to go out to those dealing with the overwhelming challenge of CDH. May they all be as fortunate as we have been.

The Big ONE

2011-02-27T16:08:00.000-08:00

Several days after Tucker's in utero diagnosis, in the midst of researching what lay in store for him and for us, we attended a friends' party for their son celebrating his first birthday.

Suffice it to say, we were a jumble of emotions.

Truly, there few sights more endearing than watching parents, swelling with pride, dote on their child in a home full of family and well-wishing admirers. These particular friends are among the most loving we know. Their boy, too, is a perfect, doe-eyed charmer. We could not have been more happy for them.

When Mom and Dad stood by their son, playfully put a silly on his head and tempted him with a plump cupcake, it was hard for us not to project 13 months into the future. We did our best to live in this moment of celebration but, dark questions were difficult to avoid. Would we be fortunate enough to live such a moment ourselves? Would we sing "Happy Birthday" to our child? Or would we face a lifetime of unrealized family moments like today? We were overwhelmed.

Today was the final banishment of all those fears. Today was Tuckers' Day.

His birthday is no more significant to the world than our friends' son's. And Medical miracles, like the ones that saved Tucker, are performed each and every day. But for the two of us, a simple party in our yard for a boy one year and four days old was a moment of the purest joy.

The kind of day that makes your heart swell to twice its normal size.

The sun shone brightly. Friends and family wore the sincerest of smiles as we lit a cupcake and sang a song we'd heard a million times. Warmed by their affection, the lyrics hung in the air as they sang in unison: "And many more..." to a boy who worked very, very hard to have just this One.

Yes, it was Tucker's day, but it was ours, too.

And So It Begins

2011-01-03T19:35:00.000-08:00

We try not to get too political here on Tucker's blog, but something has caught our eye that directly affects Tucker and all children who've started their lives in the NICU (or NICCU). If you don't mind, please indulge us...

As expected, the incoming House of Representatives Republican majority has begun their assault on last year's Health Care Reform. While there are some controversial aspects to the law that may indeed require revision, their initial tactic is to repeal the whole darned thing.

We don't pretend to know every detail of the massive 2,000 page document, but we do know that one critical piece of the legislation became law last September 23rd, Pre-existing condition exclusions became prohibited for children under age 19. That little nugget keeps Tucker from being relegated to the rolls of government assistance or plain cash-money when he has health care needs in the future. It's important to us and to thousands and thousands of parents in similar situations.

Part of what seems particularly galling about the GOP approach is that for individuals with pre-existing conditions, according to Forbes is not an attractive one to this family.

"Their answer is to create government supported high-risk insurance pools, operated by the states and funded with federal financial assistance for those with pre-existing medical conditions.

"To examine this properly (and you should as the proposal is not without merit), you’ll have to get past the irony that the party of small government wishes to expand government involvement in health care in order to solve the problem of too much government in health care. I know…it’s confusing. "

"...demand for participation in the high-risk pools remains high with applicants in every state operating such a program facing long waiting periods – if their program is open for enrollment at all. Florida’s high-risk pool has been closed for years. California’s is virtually impossible to join as is the case in virtually every state offering this government insurance opportunity."

Not sure how exactly this is better than putting regulatory standards and limits in place for the health insurance providers to follow that allow us to purchase responsibly priced coverage.

As we ask you to support the people of CHLA, who work tirelessly to save and improve the lives of our children, take a moment and consider if ensuring their right to health insurance coverage (that we as individuals wish to purchase with our hard-earned money) is of equal importance. If you do, then please also consider writing to your government representatives and let them know.

Merry First Christmas!

2010-12-25T15:00:00.000-08:00

Thankful

2010-11-25T16:37:00.000-08:00

So many reasons for us to be thankful.

Hope you and yours have a wonderful holiday!

That's Dapper, Not Diaper

2010-11-05T17:46:00.000-07:00

This week Tucker won his first contest... and it was a fashion one, no less.

Children's style blog, My Muse Sophia, held a Got Style contest and Tucker's mom sent in a couple of pics. As fate and the judges would have it, he's the winner.

Hopefully, it doesn't go to his head. Next thing you know, he'll be checking the labels of everything we try and put him in.

Tucker's dad, for the record, is responsible for the vest...

Happy Halloween!

2010-10-31T15:54:00.000-07:00

Eight of One, Two-Thirds of Another

2010-10-23T17:28:00.000-07:00

Tucker's starting his home stretch toward being a year old.

They grow up so fast...

Deep Breaths

2010-09-27T13:30:00.000-07:00

Had our long-awaited follow-up with the Pulmonologists at CHLA today. It was good to get the lung doctors checking in on the boy.

While a couple of the docs took a listen through their stethoscopes, mostly we chatted about keeping him healthy and giving his lungs the best chance to develop normally over the next couple of years.

A child's lungs do a majority of their development during the first two years of life, so if Tucker's able to avoid any serious bronchial infections, he's got a great chance of having enough lung function to be a track star, opera singer or whatever else he wants to be.

Many of you are likely aware that California is facing it's worst Pertussis (Whooping Cough) Epidemic in nearly 50 years. Pertussis is exactly the kind of infection that could be devastating to Tucker. Part of the challenge presented by this infection is that resistance to the disease requires multiple inoculations over the span of 4-6 years. Typically, children are not considered fully immune until they're about 5 and have received their fifth DTaP vaccination.

Another issue, is that in adults, Pertussis generally manifests itself as merely a nagging cough and often doesn't appear to be anything serious. In children less than two months of age, or with respiratory issues, it can be devastating and even fatal.

What we've done, and what is recommended for families of very young children during this epidemic, is called cocooning. That is, as parents, we've received a DTaP booster to keep us from catching the virus and giving it to Tucker. So, too, have his sitter and other family members who spend a good amount of time with him.

Also, flu season is nearing, so we're doubly on-guard. If you've got the sniffles, we're sorry to say, we might not let you visit with the young man until you're symptom-free.

And how to avoid getting bugs this time of year? Other than considering the DTaP vaccine or seasonal flu shot, be good about hand hygene. Nothing's 100% when it comes to viral infections, it seems, but there's broad consensus in making clean hands a top priority during the fall/winter months. Wash. Your. Hands.

All coughing and sneezing nastiness aside, Tucker is doing great.

The docs were incredibly pleased at his overall progress and how his lungs sounded today.

He's getting into solid foods and really love bananas. He's doing well in his high chair and working on sitting up and is wanting to crawl in the worst way...

Oh, and he's still cute as a button.

NICCU Reunion

2010-09-18T14:26:00.000-07:00

Hard to believe our guy is 7 months old, come Thursday. We're already starting to let slip that saying all the other parents use, "they grow up so fast."

Of course, we wouldn't change it for the world.

LAST SATURDAY was a very special day for Tucker and his folks as the CHLA NICCU held their biennial NICCU Reunion at the Travel Town train museum. There were mini-train rides, games, refreshments and even the CHLA Bloodmobile. (Not sure who all the sponsors were, but they included Wells Fargo, Sharkeez and Build-A-Bear Workshop).

For us, though, we were thrilled to be among our boy's saviors. Seeing the nurses, doctors and specialists of all stripes who helped make our son whole again, and in such a charming setting, was emotional in the most heartwarming way. As you can see from the photo above, Tucker was particularly happy to see his two AM Primaries, Lisa and Judith.

So, too, was seeing dozens upon dozens of other NICCU graduates. There were children from Tucker's tender age up to and into adulthood. It's incredibly inspiring to see all the health and happiness CHLA has brought into the lives of so many families.

We believe our boy to be a miracle and that miracle was facilitated by CHLA.

AS TO WHAT ELSE has been going on with the little lad? What can we say? He's doing great.

In the past couple of months, Tucker enjoyed his first vacation, started infant stimulation therapy and continues to grow, smile and be an unending wonder to us.

WE'D ALSO like to remind everyone that CHLA would still appreciate your support. Financially, you can SUPPORT ECMO @ CHLA and help their ECMO program train and re-certify those people who used this magic machine to save Tucker and many of the other children we saw at the NICCU Reunion. And if you're in Los Angeles, you can always make a pit-stop at the CHLA Blood Donor Center and drop of a pint to help that cause, too.

We Are CHLA

2010-07-08T10:02:00.000-07:00

Our friends at CHLA have taken a liking to Tucker's story and are sharing our blog on their blog WeAreCHLA.org. We're incredibly honored to have them make mention of us.

Anyone wandering by our site is welcome to read about our boy's journey and hopefully find some inspiration should they, too, be facing seemingly insurmountable challenges with their son or daughter.

CHLA made miracles happen for Tucker. May they eternally continue to bring our children home.

(Almost) Two Months Later...

2010-06-28T20:13:00.000-07:00

Wow. It's fast approaching two whole months that Tucker has been home. We sometimes find it hard to put into words how wonderful it's been to have him under our roof and in our arms. We're so amazingly blessed.

Some of those feelings are part of why it's been so long since Tucker's blog has had a real update. It's also been a new kind of challenge adjusting to all the regular having-a-baby things we now get to enjoy along with the whole generally getting our collective lives back to normal stuff, too.

Well, what has been happening with Tucker? Mostly, he's been just, plain awesome. While we did have one quick trip to CHLA with a 24 hour stomach bug, it's otherwise been lots of joyful eating, sleeping, playing and growing in Silverlake.

Medically, Tucker's had a great visits with his pediatrician, Dr. Feuille, at Glendale Pediatrics. T-man's gotten his shots and is gaining weight steadily. He's also had encouraging follow-ups with some of the CHLA-based and other experts who'll be tracking Tucker's progress in various areas over the next few years.

Suffice it to say, Tucker has continued to impress medical professionals who both helped him get where he is today or who have only read or heard about his ordeal. And, interestingly, most of them seem to think he's going to be tall...that is most assuredly from his mom's side...

On the social front, Tucker's been getting to know friends and family as people have come by to hang out with the boy, including his Nana, Grandma and cousins from nearby Redondo Beach...

Tuckertown gets more alert and curious each day. He loves to smile (when his diaper is dry) and enjoys the heck out of his floor gym and all of his other developmental toys. He's also fond of riding in his Bjorn or sling on long strolls at the neighboring reservoir or just quick walks to LAMill for Mommy's orange cappuccino.

In the past couple weeks he's started to jabber and squawk a lot more and wants us to hold him up in a standing-type position. Dr. Feuille even thinks teeth are not all that far off in Tuckers future.

Each day holds a new surprise.

Oh yeah, it was Father's Day last week, too!

Hammock time with the boy, the gift Dad wanted most...

And, please, take a moment to read Tucker's Grandma's letter seeking support for CHLA's ECMO program. Their possession of ECMO technology is what brought him to Childrens and it's medical magic gave Tucker the fighting chance he needed to survive his incredibly difficult start.

For 23 years, Newborns from throughout Southern California (and beyond) have depended on CHLA's robust ECMO program to save lives. Training and keeping staff ECMO-certified is time-consuming and expensive. If you're able, please lend them a helping hand.

An Appeal From Tucker's Grandma

2010-06-21T09:34:00.000-07:00

Friends of Tucker,

We are all so pleased that Tucker is home in the safe and loving arms of his parents (and grandparents, too!). He made it through his unbelievable challenges for three reasons: his incredible will to survive, the support of the amazing community that rose up around our family and Childrens Hospital Los Angeles.

As we enjoy watching Tucker grow and thrive we’ll be able to see what his inner strength will help him become. It will be a wonder to behold each passing year.

For Childrens Hospital Los Angeles, the struggle goes on. More babies arrive in their NICCU daily in need of life-saving technologies and expertise, just like Tucker did. ECMO (Extracorporeal membrane oxygenation) was the specific technology that saved him, It was harrowing in it’s implementation, but magical in its effectiveness.

As a thank you to them and as a way to help them save the lives of other newborns like Tucker, I’d like to ask you join me in donating to their cause. Donations to CHLA are, of course, tax-deductible and donations made in honor of "TUCKER KNOX" will be earmarked specifically to fund ECMO training and certification to ensure there are plenty of doctors, technicians and nurses well versed in this incredible, vital technique.

Mail donations to:

Kristin Bell

Childrens Hospital Los Angeles

4650 Sunset Blvd. #29

Los Angeles, CA 90027

(323) 361-1719

You can also donate online:

http://www.chla.org/ > GIVING > DONATE TODAY

Be sure to write "TUCKER KNOX" in the memo field of your checks or in the “Comments About This Gift” field in the online donation form.

Thanks for your time and consideration.

With Love and Gratitude,

Pat "Grandma" Mossburg

It's All Happening At The Zoo

2010-05-14T22:01:00.000-07:00

It's so incredible having our guy home, even if he's occasionally dubious of our chosen activities...

A Happy Mother's Day, Indeed

2010-05-10T10:37:00.001-07:00

Home

2010-05-06T16:06:00.000-07:00

Gen Pop

2010-05-03T11:59:00.000-07:00

Late Saturday night, Tucker was moved from the NICCU to "the floor", as they call it. He was the healthiest baby in the NICCU and ready to take the elevator trip upstairs. His space was cleared, too, so another child, sick like he once was, can be healed and returned to his parents.

Tucker already misses Lisa, Judith, Susan and all of the other nurses, doctors, technicians and support staff, but this transition signifies major progress toward his eventual homecoming.

He will continue to work with Cheryl (OT) and Laura (PT) in his new digs. Cheryl will continue working on his eating and Laura will be planning for constructive activities for when he's out of the hospital.

...

There are no words adequate to express the vast and profound gratitude we feel for the work done in the NICCU to save Tucker and make him well. Since his arrival at just one day old, the amazing people there dedicated themselves to his cause 24/7.

And it's not just what they did for him for which we will forever be indebted. They supported us immeasurably, too. We, his overwhelmed and helpless parents, were mentored and cared for throughout this entire process. That care enabled us to remain strong for our son and for each other. It's impossible to imagine what an experience like this would have been like without their nurturing we received each day on 3 West.

We would name every one of these amazing people here, but there were dozens upon dozens who had a hand in saving our son, many of whom we never even had the pleasure of meeting. Truly, the love and support our family experienced at the NICCU is been a gift of boundless proportions.

Perhaps, that's exactly what life is...

Next stop, home!

Just Say No

2010-04-29T10:21:00.000-07:00

Goodbye, Mr. Fentanyl. Hello, Mr. Crabbypants!

Nana's Turn

2010-04-27T07:27:00.000-07:00

Tucker's Nana had a wonderful visit with the T-man on Sunday. It was a real treat for him as he hadn't seen her is quite a while. Tucker's glad his Uncle Mark brought her up to CHLA.

As for Nana, herself, her recovery has been going quite well. She spent a month of rehabilitation in San Pedro and now is getting some additional care at another facility down near Long Beach. Speech continues to be a challenge for her, but she does well with her physical therapy and most importantly still has her famous sense of humor.

Nana's also had the pleasure of enjoying a gaggle of out-of-town family visits Easter week and is getting more visitors this week.

Everyone's love and support has meant the world to her. With that support and her amazing attitude, we hope her remarkable improvement continues.

One Sixth

2010-04-23T10:34:00.001-07:00

Tucker is two months old today. Way to go, lil guy!

New Tube...

2010-04-20T11:35:00.001-07:00

...but it's for a good reason. Yesterday they inserted another feeding tube into Tucker's nose. This one runs not down past his stomach, but into it (an NG-tube). It's an important step in seeing how well he'll tolerate feeds down in there. They've started with just 1cc per hour via this method with his remaining 24cc's via the NJ-tube.

Slowly, they'll increase the percentage of NG feeds and lower the NJ. That is until he figures out how to eat like a regular kid...which could (and will) come at any time.

Of course, Tucker wasn't too thrilled about having something new taped to his face, but so far his stomach is enjoying it's small dose of mama's home cooking.

Timex Tucker

2010-04-18T23:06:00.000-07:00

It's been a pretty good couple of weeks for everyone's favorite NICCU boy. Much like the famous watches, he keeps on ticking.

The intestinal bug he had turned out to be C. difficile which a round of antibiotics has nicely reconciled. Flagyl, does make a little guy a touch nauseous at times, but it sure does trick.

Tucker continues to breathe clear and easy on his own, something for which everyone is still in grateful amazement. His Fentanyl weaning has moved forward successfully, if slowly, and he's now at full feeds, via his NJ-tube.

Eating is the new task at hand. The Occupational Therapist is working with Tucker and his mom throughout the week. He hasn't had a major breakthrough yet, but the Cheryl (the OT) is confident it's just a matter of time.

Our man Tucker is such a miracle; such an inspiration. It's something his parents get told nearly everyday by someone at CHLA. His strength and spirit (not to mention the healthy way in which is mom took care of herself while pregnant) have been major factors in his success thus far, but the people and technology at Childrens gave him the opportunity to show his mettle.

His story is so compelling that the good people at CHLA asked if they could use Tucker's story to highlight ECMO's life-saving technology for some fundraising literature. We're incredibly proud. The photo above is from a shoot related to the article.

Tucker's dad is back to work, so postings have slowed a bit, but we'll do our best to keep everyone up to date.

Happy Easter

2010-04-04T23:21:00.001-07:00

Tucker's Easter surprise was breathing 100% on his own...no extra oxygen, no extra flow, no extra nuthin'...oh, and a chocolate-scented plush bunny his grandma sent and two dyed eggs from the cafeteria.

All-in-all, a most excellent Easter.

Tough Little...

2010-04-03T14:07:00.000-07:00

It's been an interesting few days for the little guy.

Today, for example, someone called in a bomb threat to CHLA. At the moment, Tucker's folks are sitting at home waiting for the all-clear call from his nurse, Judith. Here's hoping that by the time any of Tucker's followers are reading this entry, the threat has been confirmed false and all of the waiting families can again see their loved ones inside the hospital. Sadly, this is problem they have to deal with at Childrens with some regularity.

Tucker's recover itself has been a bit eventful, too. He has developed a somewhat mysterious intestinal ailment. Scans and cultures have all come up negative for any major issues and he's under no obvious distress, but his system is showing signs of irritation. The medical experts don't seem overly concerned at the moment, so that a significant plus. To hopefully help resolve his issue, he's now on Carafate, an ulcer medication.

Partly as a result of this new development, they have dialed back his Fentanyl weanings a touch and done the same with his feeding increases. It's extremely common for recovering CDH babies to have set-backs along the way. Given how truly ill Tucker was at the start, they say this barely qualifies as one.

On a the more positive side of things, Tucker had very nice sessions with Physical Therapy and Occupational Therapy this week.

With PT, he was given an evaluation to see where he's at with some basic infant coordination and sensory skills. He seemed enjoyed his time with Laura, the physical therapist, and will be seeing her a few times a week throughout his stay at Childrens. She also outlined a few activities that can be done to help him along as he progresses.

Yesterday, the occupational therapist worked with him on feedings, as seen in the photo above. The plan is that he'll start with a few cc's from the bottle periodically until they feel he's ready to get milk strait from mom. At this point, Tucker's only able to handle a very small amount at a time, but with gentle support and patience, he'll get the hang of it. It can often take some time for babies who've not immediately been fed normally to get there, but he will.

Also of note, Tucker got some new onesies courtesy of Dan Appel. A couple of them can be seen on Tucker's Flickr gallery linked on the right. This album, by the way, will be periodically updated with additional photos of Tucker's progress...some of them even in color.

From His Point Of View

2010-03-31T01:39:00.000-07:00

Each Day

2010-03-28T22:10:00.000-07:00

The march continues forward. Weaning meds, increasing feedings and time spent with Tucker is becoming more and more rewarding.

He is on a lower-flow air supports system and his feeds are now above half his normal volume. Tuesday will see the Physical Therapist meet with him and start us all on a program of activities to help him catch up for lost time spent on ECMO and assorted medications.

To jump start his stimulation, his crib is now outfitted with a few dangly objects on which he can gaze and a small ipod dock chock full of classical tunes with which he can dream the sweetest of infant dreams.

Look, Ma! No Tubes!

2010-03-25T20:36:00.000-07:00

Well, at least not in his mouth...

Yesterday saw another milestone for Tucker as they removed him from ventilator support, or extubated him. It was the first time his lungs bore full responsibility for his breathing. A day and a half later and he's still truckin'.

In fact, he was enjoying that relative freedom so much he, himself, pulled out his G-tube late today. (This tube allowed for drainage of fluids built up in his stomach.) As he has done so well the past two days, the doctors are willing to see if it's an additional support item without which he can do. He's certainly much happier with his mouth free of the clutter.

The remaining tube seen running across his face is a High Flow Nasal Cannula. This device is giving him supplemental oxygen as his system continues to heal and grow stronger. It's the next step after the ventilator. The other tube across his left side is the NJ-tube mentioned in a previous entry used for his feedings and some medications.

He's still got his PICC Line in his foot (it's where they give him his remaining medicines) and some assorted monitors are attached, but there are fewer and fewer artificial barriers between Tucker and world around him.

CHLA Cribs!

2010-03-21T08:41:00.000-07:00

Tucker took a couple of wonderful steps forward yesterday. He moved out of the room dedicated to the sickest of babies, into to a hospital crib from his open-bed warmer and is, as you can see, wearing his first clothes!

They are pushing to fully wean off one of his Pulmonary Hypertension drugs, Sildenafil (ahem, Viagra). It is administered into his GI tract, so finishing out this medication should help get him ready to better tolerate feedings in his stomach some time soon.

Tomorrow will be notable as he's got a brain MRI scheduled. This is to examine for notable issues with his brain physiology. This is done for a couple of reasons. One of which is that he was so significantly ill when he was initially placed on EMCO he could have had something develop then. Another is that while on ECMO he needed to receive Heparin, a blood thinner, which can lead to bleeding on the brain. His ultrasound examinations while on Heparin were consistently negative for bleeding, but the MRI will be much more conclusive.

We also hope to finally get the results from his EEG last week so they can stop administering Phenobarbital, something else they are anxious to do .

Each day, we get a little closer to bringing our boy home.

As we've mentioned, Tucker went through quite a bit of blood when he was on ECMO and blood donors are still welcome to help replenish what he had needed and give for "Babyboy Burns". However, there are many ways to thank CHLA for the life-saving help they are giving him and all the other children under their care.

The hat in the above picture is one of the many sweet things that dedicated CHLA volunteers make and provide for the babies. Blankets they are using as a canopy over his crib are also the work of these incredible people.

Anyone interested can click the following link: Get Involved.

Daddy's Turn

2010-03-18T20:35:00.001-07:00

And it was outstanding.

In His Mother's Arms

2010-03-18T08:17:00.000-07:00

Yesterday afternoon, Tucker's Mom got to hold him for the first time. He didn't fuss as he was moved into her arms and he quickly settled in and snoozed for a good long while. It was a beautiful.

Next up is helping him feed. So far he's been unable to keep milk down for very long, something incredibly common with recovering CDH babies. Later today they will fit him with a non-surgical Jejunostomy Tube (J-tube). The tube will send his feeds past his stomach down into the Jejunum, the middle portion of the small intestine. This should help with the motility of his digestive tract and get better nutrition into his system then they are able to deliver medically.

We also got a bit of good news regarding his fever from a few days ago. As a precaution, when newborns exhibit a notable temperature and have elevated white blood cell and CRP numbers (http://en.wikipedia.org/wiki/C-reactive_protein), they test for meningitis. This involves a spinal tap for the little ones. What they look for primarily is a high white blood cell count in the spinal fluid as an indication of an infection. Tucker had absolutely no such activity in his spinal fluid, a very good thing...

As far as his Nana's condition goes, we're still waiting on some details from the medical team, but the process is underway to find her the best possible stroke rehabilitation facility. She, too, has a long road ahead, but the journey has begun and everyone is hopeful for a full recovery. It's clear she's still got her sense of humor and that's a great place from which to start.

Hang On Nana

2010-03-16T20:36:00.000-07:00

Tucker's maternal grandmother, LeAnne Burns, has been staying in the LA area away from her home in Nashville in anticipation of spending some quality time with her newest grandson. While facing a few relatively minor medical challenges since arriving, late last night she suffered a stroke.

The good people at Torrance Memorial Medical Center are taking excellent care of her, but are still running some important tests to fully determine her condition and prognosis.

For those of you who've been kind enough to pray and send positive thoughts for our son, please take a moment to do the same for his Nana.

A Day Off

2010-03-15T19:50:00.000-07:00

Monday was a quiet day for Tucker. They didn't fuss with his medications or ventilator setting much, giving him essentially a day of rest.

He did wake up in the afternoon and his dad changed his diaper. First time ever for pops. They both made it through relatively unscathed.

Tucker Gets His Noms

2010-03-15T09:42:00.000-07:00

The best medicine he's gotten from one of those tubes yet. Thanks, Nurse Lisa!

Thank You

2010-03-13T13:25:00.000-08:00

The support we three have received has come in so many overwhelmingly generous forms...home-cooked meals, help with errands, time spent with us through some of the roughest patches... and the list goes on. We could not be more moved nor more grateful for the sense of community around which we've been surrounded, both here in Los Angeles and well beyond our California borders. The memory of this generosity will forever remain a cherished one, an incredibly close second to the one we'll keep from Tucker's first day home.

(Above: Graham & Wren wearing their support)

Tucker Says Hi

2010-03-13T09:10:00.000-08:00

Okay, he waved...and don't tell us he didn't.

Progress

2010-03-12T12:38:00.000-08:00

Tucker continues to make small, progressive steps on his road home.

In the past two days, they've removed the drainage tubes from his chest and his ureteral catheter. (His mom even got to change his diaperI) They've completely weaned him from the Nitrous Oxide and they continue the delicate task of reducing his other medicinal and respiratory supports. He did have a bit of a low-grade temperature through yesterday, but this morning he seems to be clear of it.

Tucker's awake quite often, is fussing at his ventilator, but is moving closer to getting his first taste of mother's milk...something we hope will happen next week. The immediate hope is that we finally get to hold our little guy. They tell us that should happen soon, too.

We hate to keep being reminded (and reminding others) that he's still got a long way to go...is not out of the woods...he's got major tests and hurdles ahead..., but Children's folks are also saying "he's doing fabulous...a completely different baby...he's a superstar."

Thanks so much for the thoughts and prayers and love we have received and continue to receive on a daily basis.

We also want to thank the amazing medical professionals who are working miracles with Tucker. The quality and sheer volume of effort and expertise that has been brought to bear in saving our child is truly overwhelming.

We know there will be many more to thank along our path and our gratitude will surely grow.

Tucker Wants Noms

2010-03-09T12:21:00.000-08:00

With fewer tubes and a little less medication, Tucker's now starting to dream about the good things life has to offer a newborn.

A Good Weekend

2010-03-08T09:30:00.000-08:00

Our little guy had a pretty good weekend and is chugging along. While the medical team at CHLA continue to make it clear "he's not out of the woods. yet", they're also quick to to say that they are happy with where he is at this time.

Last night they placed a PICC Line [http://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter] in Tucker. This is to continue giving him complex nutrition directly into his circulatory system more efficiently then they can intravenously. Previously he had been receiving it via a Central Line in his navel. He'll be on this system until he's able to feed, which is most likely two or more weeks in the future.

The next few days will see them work on further weaning his medications and adjusting his ventilator support in order to move him closer and closer to respiratory self-sufficiency. He's now allowed to be awake for good parts of the day and is showing a "feisty" streak that the medical team keeps commenting on. They and we think that's a good thing.

Little Tucker has quite a few battle wounds from his adventures over the past two weeks, but seeing nurses and doctors allow themselves a smile or two is a certainly quite an encouragement.

Tucker's dad has a case of sniffles, so is steering clear of the NICCU, but his mom is singing to him and loving him up every day.

As always, we can't thank you all enough for your support and positive energy in helping our son get better and into our arms at home.

Love and gratitude.

Rob & Lisa

P.S. As a reminder, here's the link for the CHLA Blood Donation Program:http://www.chla.org/site/c.ipINKTOAJsG/b.3579263/k.951D/Donate_Blood.htm Be sure to check their hours or make an appointment if you're able to donate for "Babyboy Burns" and help out in that way.

Recovery/Story Time

2010-03-04T21:30:00.000-08:00

Tucker in repose the day after his removal from ECMO and hernia surgery. His vitals remain nicely stable as his mom smiles down on her little warrior. Dad takes this opportunity to read him revelations Nat Geo has about the Nasca geoglyphs of Peru.

A Big Day

2010-03-04T12:13:00.000-08:00

It was a big and challenging day for our little man yesterday. They took him off the ECMO support in the morning, watched him closely throughout the day and repaired his hernia last night nearly 12 hours later.

We're unbelievably please to say he handled both procedures not just well, but a bit better than expected. He is one tough customer.

He's still got a way to go. His lungs have to continue to heal and develop, combating the Persistent Pulmonary Hypertension and the Pulmonary Hypoplasia. There, too will be other hurdles as we move forward, but yesterday was a big step in the right direction.

On a related note, Lisa's c-section recovery has been going incredibly well. When not kissing our boy's sweet forehead, she's working hard to have plenty of mama's milk waiting for him when he's ready for it.

Thanks to all of you and those you've enlisted in supporting us and our beloved Tucker.

Keep the good energy flowing.

Rob & Lisa

P.S. Tucker went through a lot of blood products while on ECMO the past few days. One way to support him and the other kids in need is to donate blood at Children's Hospital Los Angeles in his name (they call him Babyboy Burns). If it's something you're interested in doing and allowed to do (sorry Dan Appel & John Maraffi...who lived in the UK for a spell) get info here:http://tinyurl.com/yezap3m

Thanks again.

Prayers For Tucker

2010-02-28T13:59:00.000-08:00

This beautiful quilt was made for Tucker by the Prayer Quilt Ministry at the Riverlakes Community Church behind the efforts of the Paneros in Bakersfield (and LA). Each knot represents a prayer made for his speedy recovery.

For us, these knots represent the hearts of friends and family everywhere who've kept our boy in their thoughts.

In It To Win It

2010-02-27T11:22:00.000-08:00

Most of you know it's been a rough week for Tucker Alfred Knox and for his entrance into our world. For those of you with whom we haven't had a chance to talk about Tucker's challenges from the get-go, the at-birth condition he's got is Congenital Diaphragmatic Hernia or CDH [http://tinyurl.com/y9qjbcv]

He's got an incredible challenge a head of him, but he's in this to win.

Right now he is hanging in there and stable in the NICCU at Children's. He had to be transfered there from Cedars on Wednesday afternoon for some special technology called ECMO [http://tinyurl.com/ykkkckn] . He's being supported by ECMO so they can rest his lungs in that are currently unable to support him on their own.

The hope is that after a few days on ECMO they can wean him free of it and that his lungs have rested enough to oxygenate without going into a Pulmonary Hypertensive spiral, which has been his main challenge these few days. They they can get back to planning his road to recovery.

Please keep your thoughts and prayers coming for our little fighter.

Thanks for all your support through this. It makes a world of difference.

Hang On, Tucker!

2010-02-25T21:15:00.000-08:00

This cheer of support was recorded while Tucker's ECMO circuit was being changed from a flow in and out of his neck vessels to one whose veinous side was coming directly from his heart. It was a dramatic, but necessary step and he handled the surgery well.

CHLA

2010-02-24T15:00:00.000-08:00

Tucker was transferred to Children's Hospital Los Angeles this afternoon, when the medical team at Cedars were no longer able to support him with the technology they had available.

He was rushed in an ambulance to be placed on ECMO as soon as he arrived.

Two Become Three

2010-02-23T13:05:00.000-08:00

At 10:10am our son, Tucker Alfred Knox, was born. At birth he's seven pounds, one ounce and 19.5 inches tall.

He was intubated immediately and rushed upstairs to the NICU at Cedars Sinai.

Lisa handled her end of the surgery well, though wishes profoundly that she could have held our boy for a time.

We know there is much work to be done.