The last few months.

I have been uploading pictures for weeks, and here they all are, but first.....

We have had an absolutely amazing week. I have to back up a bit, last Thursday Oakes went to the OR with Dr. E for a dilation of his airways. While they were there, Dr. E was going to take measurements of his airways so that Oakes' stents could finally be ordered. He went down at about 6:15pm. Greg was out of town and I had Isla with me at the hospital. I had no doubt that the trip would be uneventful, my main goal was to keep Isla under control while we waited for Oakes to return to his room since we were going to be up much later than her usual bedtime. At about 8, Dr E came up to the room with a big smile and shared that the trip went "too well." He explained that Oakes' airways looked great, and weren't nearly as narrowed as he had expected. The two other important pieces of info that I left with were that 1) Oakes did not require nearly as much ventilator support as he has in the past. In fact there were moments where he was getting NO support and he was just fine. Dr. E asked Dr. Oren who was the attending, "Have we been challenging Oakes with the vent?" We hadn't recently because we have been focusing on other issues, but Dr. Oren and I both heard the message. Oakes is stronger than we were giving him credit for. And 2) because he looked so good, we may not need the stents! (my head is spinning and there are lightning bolts coming out of my ears!)

So weaning the vent happened over the weekend, and Oakes has been on a HOME VENT since Wednesday! On Thursday, Isla and I met up with Oakes and Rebecca, his amazing Physical Therapist in the morning for a little play date. We sat on the floor and just played. This was a first. It was about twenty minutes of heaven. For all of us.

During our play time Oakes was alert, calm, happy, interested and he participated appropriately in everything we did. Isla was SO excited. She squealed "Oatsies" and "Bubby" the entire time. She wanted to show him every inch of every toy that we had on the mat. She proved herself to be a patient, compassionate, loving & an excited big sis! I think she could just feel how normal of an activity this was. I told her about our play date the night before and asked her what she wanted to do with Oakes. She first told me that she wanted to teach him to jump, then later came back and told be, "Oakes wants to dance, Momma!" so I assured her we would teach him both of those things.

Here we are.

I seriously explained the word "permagrin" to Isla later in the day. I was a happy Momma.

Isla was kicking her feet, so Oakes did too!

Isla was right in front of us just jumping like crazy, smiling and saying, "Jump, Oatsie, jump!"

With the help of Rebecca, Oakes' feet were on the ground and he felt a little of his own weight.

There is Isla jumping!

The post play date update gets even better. In about a week and a half Oakes will be off of one of his sedation meds, Versed. A big med that he has been on since transplant, and one that we could not leave the floor on. So now, there is talk about heading to 7West. We likely won't go in a week and a half right after it is turned off, but we are headed in that direction sooner than later. AMAZING. We will not have Oakes home for his Birthday on March 10th, but today I heard maybe in the month of March. I will take it! (now there are big red heart bubbles floating out of my head - permagrin in place!)

Just so you know. The stents are still being ordered if they haven't officially been ordered yet. Our insurance agreed to pay for them so that hurdle is behind us. They will be a back up plan, a "just in case" but we are all hoping that we won't need them. I hope those beautiful, amazing, miraculous stents come nowhere near Oakes. Dr. E explained that Oakes has likely outgrown the need for the stents. His airways are stronger, they have grown. He just needed time. He needed to go at his own pace. I agree. He has always told us about the pace he wanted to go in. We are just so thankful that he was strong enough to be able to handle his pace, strong enough to just coast through and not have any kind of emergency along the way. So, yes, I believe Dr E is correct - time. But, I also know in all of this time, there have been so many prayers, so much love, so much healing energy directed at Oakes - of course he has been healing!

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SO, flashing back to mid December an on. Some pictures, old news, but all worth sharing....

Isla before her school Christmas program (holding a button).

Processing down the aisle at church ringing a bell with all of the other kids. Bell in one hand, security blanket button in the other, smile on her face....

Mid row in the front, bell there, button there, smile gone. She stood there frozen, just crying.

When I met up with her in the classroom about forty five minutes later, she was still holding that button!

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Shortly after, Oakes' dialysis started. He received paritoneal dialysis. They thought it would last for weeks, but after one week is was discontinued. It was helpful, but his team thought the medications that he was on previous to dialysis were just as effective with fewer risks. Greg and I were not sad to see this go.

This was part of the dialysis set up. This basically warmed the fluid.

The fluid was measure and held to gravity to fill Oakes' belly. Emily, our Pheresis nurse returned to do dialysis. Great to see her, but not her gear!

This bag is where the fluid would drain into and be measured.

Oakes sleeping, and Emily filling.

The lines would be opened or closed according to what was happening.

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Ena and Grandpa visited. Isla squeezed into Oakes' Santa shirt to entertain all of us.

Christmas cookies and sitting with Grandpa, a great combo.

A great pair, Ena and Oakes!

Oakes' doors, decked out for the holidays. We even made a fireplace so Santa could get into the CICU.

This is Oakes door as we came to visit on Christmas morning. I had left a few small gifts for the nurses to put out that morning before we got there, but there were many more gifts that I was not expecting. I know some were from Santa, but our incrediable nurses added gifts too. Gifts for Greg and I from Oakes, and gifts from Oakes to Isla. The gifts from Oakes were amazing, little priceless handmade treasures. We were so spoiled and so loved by our CICU family!

Isla with her Ortyl cousins! Serious girls fun was had!

Do you remember Nel? Our therapy dog freind? This was Nel's last visit to the floor. Sadly, Nel has cancer and has retired. We miss her very much!

And here is Oakes on New Year's Eve

All smiles, decked out in his Dr. Michealson bow tie, ready for 2012!

I left a New Year's Eve party in time to be with Oakes at midnight. I had to be the first one to smooch him because I knew the night nurses were going to line up to smooch him....

....and I was right!

Plus, I had a great view of the fireworks going off over the Arch.

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Every Sunday in January, the penguins at the St. Louis zoo would march outside of their exhibit. The would march out of one door, parade in front of thebears and go back into the penuin house and we were loyally there to see our smelly little friends waddle on by. Not sure who enjoyed this more, Isla or myself?

Waiting.

This little guy is named Trouble.

Kissing.

So much fun!

And then we would shuffle inside for a treat.

Yum.

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Our Might Oakes Heart Foundation TShirts.

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Next in the line up: Oakes abdominal surgery. Oakes had a few adjustments made to his stomach, most significant was a line placed for feeding called a G button. This was a major surgery and was a bit of a set back for Oakes. His kidneys struggled afterwards and he just wasn't himself for almost two weeks, but he is healed nicely, and 6 weeks later (that was this week) the protective red "nipple" on his G Button just got removed and the "button" has been placed (which is typical for this procedure).

Post Op.
Oakes needed blood after surgery because his PB was low, and the easiest place to put a line in is his head.
We love blood donors! Thank you! XO

The incision from this surgery is much bigger than his open heart surgery. He now has one long scar line from his collar bone to several inches below his belly button, which ends in his diaper now.
Sweet Bubby!

Sleeping with his new bib from Grandma!

Trach care with Yvonne.

Staples, and a red "nipple" over the G tube to protect it and allow it to heal. (The line for dialysis was removed during this trip, it is the little scab to the left)

Healing. His belly button is in there somewhere!

Staples out, steri-strips on.

Steri strips off, still healing.

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We mentioned a SLU Basketball game that was honoring the MOHF a several other chairities in January. The game was too much fun! We got to hang out with old friends, and new friends alike.

Greg with nurse Daniel

Seconf level, to the right of the Best Buy sign, smiling and gorgous, nurse Ali and hubby!

Katie Smith and daughter Ellie. Both huge Oakes fans. Katie is the inspiring team captain for our American Lung Associations, Climb for Air 2012 team, that will be climbing 40 flights of stairs in Oakes' name. The event happens on Oakes' 1st birthday....more details to come!

Nurse Elaine & boyfriend John.

Nurse Yvonne and hubby Joe.

Brian and Tricia Rose with Amy Rush.

A small group of freinds after the game.

Julie Valerius, Nicole Wechkerlin, and myself. THANK YOU Nicole for organizing the entire night! XO

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Mid-January, we got about 3 inches of snow that just shut the city down. When I woke up reports were saying if it wasn't an emergency, stay home! So Isla and I did just that. We called and checked on Oakes often, but we staying in our jammies and just hung out all day. It was great!

We put whipped cream on everything we ate that day...

We talked about the snow non-stop, but we didn't step foot in it.

Marker on the finger looked like a boo boo, so we needed a band-aid.

Isla took a turn with my camera. She captured her best girl, Ashby...

....her little cupcakes....

....and edamamme, part of the all day graze-fest.

There was lots of time spent on the couch rolling around with Ashby.

Genuine happiness, a lillipop.

Our backyard.

Playing in a box kept Isla busy for a few hours.

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Meanwhile, our best gift ever was doing just fine.

Any old finger will do really!

He is getting SO big.

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Working on Valentine's decorations

And later, painting a car at the hospital's playroom

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January 22, we celebrated 6 months with new lungs! A milestone that we are thrilled to have met. It was a pretty quiet celebration that only got better when cupcakes were delivered to Oakes room from Chris Suchomski and family. Thank you, Chris, XO!

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A great visit from Grandma Jane and Grandpa Greg.

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Greg and Isla getting ready to go on a date.

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Smiling in his sleep!

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Our dear friends Matt & Cindy Fitzgerald came to visit. Later that day Oakes had a consult with Plastics to get a helmet. Since most of his life has been spent laying down his head is not symetrical. Not even a little symetrical. I was bummed out for about a minute, thinking my poor baby would need to wear a silly helmet, but I quickly got over that. What's one more accessory? And now, I LOVE the helmet.

A mold was made of Oakes head, just like an old school cast would have been made. As you can see, Oakes slept through the entire thing.

Nurse Daniel was with us to help. (Daniel will always hold a special place in my heart. He took care of Oakes the night that Oakes was born. At the time he was a NICU nurse, but recently Daniel transfered to the CICU. Leaving Oakes in the NICU was so hard that first night, I was up at the crack of dawn to get back and see Oakes and when I got there, Daniel had spiked all of Oakes hair, which made me smile. Since his move to the CICU Daniel and Oakes have spent a lot of time together, and as far as I am concerned they will always be boys!)

And here is the mold coming off!

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Dew More Fundraiser at Dewey's Pizza.

We had an unbelievable night at Deweys with amazing freinds, delicious food and fantastic wine.

The night went off without a hitch, which is a credit to the Dewey's staff who all volenteered their time to come an serve us, bake for us, and clean up after us....Thank you Dewey's for Dewing More!

Everyone was captivated as Adam Lee, from Novy family wines spoke. Adam came in from California just for the event. As did a team from Dewey's headquarters in Cincinnati.

The guest chefs for the night having fun in the kitchen.

Two fabulous servers getting to taste the yummy pizza in the kitchen!

Cary McDowell getting ready to help serve up dessert!

The Celebrity lineup for the evening: Cary McDowell of Winslow's Home, Dave Justice GM of Deweys in the back, Kevin Nashan of Sidney Street Café, Gerard Craft of Niche, Mike Emerson or Pappy's Smokehouse, Adam Lee of Novy Family Wines, Andrew Dewitt Owner of Deweys in the back and Tim Brennan of Cravings. We really could not have been more spoiled. These are some of THE best chefs in town, and although they are all freinds they have never come together for an event like this!

We even made it on a local morning TV show and an article was written about the event as well.

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While Oakes can only dream about Deweys pizza now, he did get carrots the next day!

And here he is all cleaned up.

And here is Isla in the corner of the room swinging while all eyes were on Oakes

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After Pajama Day at school, Cate and Isla and I went for lunch then had a playdate.

Cookies!

Busy little girls.

We sure do love our friend Cate! XO

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Decorating the fireplace with little Valentine critters.

Notice the Valentine butterfly made it to the door, as well as the cutest pengine footprints ever!

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Playdate at the Zoo. Here is Isla and I on the train, choo-choo!

From the zoo we went to the hospital to check on Oakes. Isla wanted a snack and a movie....

....and she fell fast asleep. I didn't think about it until then, but that was a first - Isla and Oakes asleep in the same room. Loved it!

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Just one of the ways I keep Isla entertained at the hospital.

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Time with the Fox girls.

A moment with Ena. Looks like she is giving him a good talking to, but knowing her its a pep talk and sweet nothings!

The helmet is on!

Aunt T Frannie finally got to see him awake, and hold him!

Girlfriend/Nurse Jen loving on Oakes.

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This was last week, a family visit with Oakesie.

You were expecting this picture, right?

Isla with the camera again.

She's got a great eye!

Pappa reading books.

Everyone was listening.

February 10th....11 months old!

Such a big boy, sitting up and playing!

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Last weekend we were all visiting and Isla disappeared for a bit. This happens often. A nurse will grab her attention and keep her occupied for a bit. Here she is sitting at the desk where all of the staff works, eating Fruit Loops while reading the latest order that were on the computer screen. That is Dr. Doctor behind her on the phone.

One of our floor mates had a birthday last weekend and the family brought in cupcakes for everyone. Isla was happy to sit with Tammy and Elaine and hang out while snacking on the top half of a cupcake. A minute after this was taken the Fellow sitting behind the girls asked Isla what kind of medicine she thought Oakes needed and on cue, she said, "we need to tickle him!" so the Fellow, entered that into his chart as an order given by Nurse Isla.

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Just this past Monday morning Oakes and some of his girlfriends took a trip over to the CAM building for a PET scan. My pictures don't show this very well, but on the way there Oakes was alert and awake. He was propped up on his Boppy, and was waving his right hand in the air the entre way there. It was like our own little Mardi Gras parade.

(For the last few months Oakes has had these unexplainable fevers. They are random, sometimes mild, but sometimes they shoot up and he needs cooling blankets or an ice bath to regulate his body tempature. Each time this happens they culture his lines, his trach and nose, and nothing ever grows. Fever could be a sign of rejection, so the PET scan would show where the infection was if in fact that was the case. Results came back later that day, they were completely normal.)

Walking down the hall

Waving to everyone we passed.

Nurse Maddison was with us and took great care of Oakes.

Oakes getting his scan.

He looks perfect to me!

Sleeping peacefully during his scan.

This is short and a little hard to see, but this is the 3D model of Oakes created during the scan.

A sign I made hanging that has been hanging on Oakes door for about a month. Our entire team is made of people that believe in the impossible. You just have to if you work in the CICU! We LOVE everyone that has been taking such great care of Oakes and our entire family!

Happy Valentine's from the Ortyls, especially our little LOVE MACHINE!

Greg took this on the 15th. Oakes was all smiles and laughs before the camera phone came out and then Oakes was a little distracted - this is still a good look at our handsome and happy guy!

Mmmmuwha!

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An update on Easton: Easton is doing well. He is actually doing really well. Several weeks ago, his parents were reparing for the worst, and now they are talking to their Docotors about being transfered back to Witchita as Easton has turned a corner and will not need the St. Louis Children's team very soon! AMAZING!

Several of the nurses have commented to Easton's mom Brittney and I about how similar the two boys are. Beside both being Truncus babies, and having simila scars, tubes and meds, they are both sweet, strong, pull through the tough times, they both have little tempers, and they are stealing the hearts of their nurses becuase they are so cute. Brittney and I agree that they are besties, and they are a great influence on each other.

Please keep the prayers coming and if you want to follow Easton's story, check out his blog: http://www.caringbridge.org/visit/eastonrush

Easton with his Mom on Valentine's Day!

Easton & Oakes

{Little Easton smiling in his sleep earlier this week!}

I have shared before about special children and families that we have fallen in love with in the CICU, right now there are several really amazing families on the floor that fall into this category. All with courageous stories, strong famililes, beautiful heart babies, and like us they are all hanging onto HOPE. There is no doubt that anyone with a child in the hospital is looking for prayers, and I hope that when you pray for us you pray for other families like ours. Tonight, I want to ask that you specifically include baby Easton and his family in your prayers.

Easton is a five month old baby, that transferred to SLCH from Children's Mercy Hospital in Kansas City some time around Christmas. Easton was born with the same congenital heart defect that Oakes was born with, Truncus Arteriosis. Easton is our new next door neighbor. He, like Oakes has had several set backs, several complications. Easton has never been home. Also like Oakes, Easton is a fighter, he is strong, and from the outside he looks perfect! He has surprised his doctors more than once and pulled thought when they didn't think he could. Easton and Oakes are buddies, no doubt. Earlier this week, after a trip to the Cath lab, Easton's parents got devastating news that his heart may be much more sick than his team originally believed it was. Easton has been put on new medication to try to help his heart, and in the mean time his friends and family are praying for healing miracles. I have been in tears over Easton's circumstances in the last couple of weeks and when I asked his Mom if I could blog about Easton, she said, "Yes, please!"

So please, when you think of Oakes, and pray for us, please, please pray for our friends. Pray for Easton especially. Please pray that he responds to his new meds, that his heart relaxes, that his belly dries up, and that he continues to heal and surprise his doctors. And of course, please pray that his loving parents feel comforted and supported, especially his amazing Mom that is so far away from friends and family. Please pray that they don't lose sight of HOPE, that they find the strength to continue to forge ahead with grace and love, and most importantly that they are able to take Easton home very soon. I am comforted imagining that our vortex is expanding into Easton's room, that his family will feel the love that we have felt from all of you. Heart strings to Easton! XO

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Oakes: Oakesie is awake, unparalyzed, and his numbers look pretty good. It has been determined that on top of being fluid overloaded Oakes has had some kind of infection in his lung. His right lower lobe was collapsed yesterday, but today it looks much better. He had such a good day that around 6pm his paralytic was turned off and he woke up pretty comfortably. Big sigh. He is on a broad spectrum of meds to wipe out whatever the infection was and that seems to be helping. Yesterday Dr. Gazit had said that he was perplexed with Oakes' symptoms because they haven't been able to pin point the source of the infection. When Oakes woke up he had a serious audience. Greg, Isla and myself, as well as Ena, Aunt Sally and Aunt Tina. Not so sure he was thrilled to see all of our masked faces gazing at him, but we were all over the moon to see his sleep eyes open up!

Hope you are all having a great and boring weekend!

XO

Ena, Sally and Tina

Sally & Oakes saying hello. Sally hasn't seen Oakes awake since the transplant! Every time she has scheduled a visit Oakes has been paralyzed.

Oakes was happy to see Sally!

If we could enter a poster contest, we would surely win! Today the Fox sisters, along with Isla and Ena, made a red heart "Oakes tree" for Congenital Heart Defect Awareness Week. We hung it on the doors to the CICU to remind everyone that comes and goes from the floor that this upcoming week is all about CHD awareness. If you are so inclined, wear red this week and spread the word about CHD awareness!

Thursdays update.

We are bored. Still paralyzed, but bored. Oakes is peeing well, and we are weaning some of his meds, with the plan to let him wake up this weekend. His room is quiet, cold and filled with Coldplay music today.

Dee Dee just peaked her head in the room, gave me the thumbs up and said that United Healthcare has approved the stents! One more big hurdle behind us. Now we need Oakes to continue to pee, and wake up so that he can have his airways measured and the stents can officially be ordered.

I have gotten a dozen emails about T-shirts so my order list is growing! I should have mentioned that the shirts are $15.00. You can snail mail a check to us, or you can go to mightyoakes.org, and donate using paypal.

Thanks for the prayers and sweet words, we have missed all of you too!

XO, Becky

Adorable Oakes. Sleeping with his heart bib from Gramma Jan....

....and Valentine socks from Yvonne!

And then there is my sweet Isla P, smiling cause she is not in a diaper today and she is toting two babies around with us, Puppy & Foxie.

MOHF TShirts

We have been selling MOHF T-shirts to hospital staff and friends that we are running into, but if you are interested in ordering a shirt please message me by Saturday so we can place another order.

peandpm@yahoo.com

We are selling:

Men's shirts S - 3XL (standard fit)

Women's shirts S-2XL (fitted & run small, we recommend going up a size)

Children's shirts S, M, L

This is a small on Isla. Kids are Heather gray.

Adult sizes are a darker gray.

The latest from the nest.

It has been nearly a month since my last post. I am sorry for that friends, I was reminded tonight by a seven year old that it was time to post some pictures of Baby Oakes on the internet. It is now 10pm, and I have it in me to post a brief update.

To start, Oakes has been doing really well. We have been coasting along with lots of boringness surrounding up. However, this past Saturday Oakes hit a little bump. He was having problems breathing, and after a few failed attempts to calm him he was paralyzed. He was a bit fluid overloaded, and that pretty much started this downward spiral. We will lift the paralytic tomorrow and hope that he wakes up peacefully. Everyone agrees that this was a fluid issue, this has happened before and we know how to get Oakes back on track so no one is really concerned.

Last Monday we FINALLY got a one time clearance from the FDA to bring in the bio-degradable stents for Oakes' airways. It took weeks of back and forth with the FDA so this is a HUGE hurdle that we have overcome. Now, we are waiting to hear that our insurance company will cover this treatment. Dee Dee, the amazing woman that has been heading the entire stent operation at SLCH, thinks the insurance part will be a breeze. We hope to get the thumbs up from them this week. Next week, Oakes will go to the OR to have a dilation done and current measurements will be taken of his airways. Assuming that the insurance company is on board, those measurements will be sent to the manufacturing company for fabrication of the stents to begin. That should take 2-3 weeks, and then we have been told it will take a few more weeks to get the surgeon here. With this timeline, we will not have Oakes at home for his first birthday, which is the tiniest bummer, but maybe he will get stents for his birthday? While we are considering birthday party options we continue to stay positive, and thank god for the good stuff and the boringness.

That is the quick update, now here are some pictures!

Love to all of our family and friends, more details very soon!

XOXO, Becky

He no longer is a thumb guy, he will pretty much take any finger he can get!

This was a couple of weeks ago, a quiet afternoon with my two babies. Isla just loves her "Oatsie"

Consentrating and listening (to Oakes leg), while Oakes manages the plastic princess crown sliding down his face!

What a good day, visiting Oakes, being a princess and having a sucker!

Oakes lips are not blue from poor circulation, he had a sucker too, a blue one!

Our little triangle!

Isla took this picture!

Holding both Isla and Oakes, I couldn't be happier!

Foundation updates and words from Becky

First, Oakes is resting peacefully this morning. The goal for today and the next couple of days is to keep Oakes comfortable and asleep. Dr. Doctor has put in an order for boring and we are thrilled. While I have a minute I wanted to share....

The Mighty Oakes Heart Foundation is being honored at a St. Louis Billikens Basketball game on January 11th at 8pm. SLU vs. Temple. There will be several charities honored that night, all that have affiliations through SLU alumni. (Greg went to SLU High, then SLU for his undergraduate and graduate degrees.)

We have been given 75 tickets to bring family and friends and supporters of our foundation, so if you are interested in going, please let us know, we would love to have you! Bring you kids, your neighbors, your co-workers anyone that you think would love to join the MOHF Billikencheering squad at the Chaifetz arena.

A huge THANK YOU to Nicole Weckherlin for submitting our foundation for this honor. We love you Nicole!! XO

As soon as I heard from Nicole about the event I started scrambling to get MOHF T-shirtsmade so that we might look a little cohesive as a group. Later today we should be getting a shipment of 50 T-shirts that will be for sale. They are dark gray with a white logo on the chest. We will have fitted women's sizes and standard men's sizes. We will be working to get these on the MOHF website for sale, but for now we will also be selling them on our own. Shirts will cost about $15.

If you are interested in either attending the game or getting your hands on a T, please email me, I will give you the scoop: peandpm@yahoo.com

After the game, the next MOHF event is the 2012 Fight For Air Climb. This event is taking place in St. Louis at the Metropolitan building, and it is put on by the American Lung Association. The goal is to climb 40 flights of stairs, and raise money for the ALA and the kicker is that this event takes place on Oakes' first birthday, March 10th!

So, we will climb for Oakes, we will climb for others who can't breath on their own, and for those who are, who have, or who will fight to breath in their lifetime. Are you interested?

Of course, I am registered as part of the team, but I have not really started training. Obviously this will not be competitive for me, but very symbolic. If you are in St. Louis and you want to climb with the Mighty Oakes team, we would LOVE to have you. I would love to have you! I would be honored. I will be in the slow heat, but other team members will be blazing far ahead of me, no doubt! (When I registered online I noticed that there are teams of firefighters that do this climb in full gear!! - tears!) And if you are not in St. Louis and you want to participate we would love to have you join our team as a virtual climber. You know will take all of the love, support and deep breaths we can get.

For more info, check out the website:

http://www.lungusa.org/pledge-events/mo/st-louis-climb-fy12/

Our team is simply "mighty oakes", but again, contact me with any questions.

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My Mom, Connie/Ena is in town this weekend with Grandpa Dale. They have already started to spoil us. Isla is at the Zoo with Ena, and Grandpa is at home painting big girl bunk beds that he built for Isla. Greg is working and I am sitting with Oakes watching his chest rise and fall, thinking about very little other than that.

Oakes will be 10 months on the 10th of January, next week. I can hardly believe it, double digits. And on the 22nd we will celebrate 6 months with new lungs! Amazing. Just amazing. I have felt so emotional thinking about this time marker. I am thankful and feel blessed. I love those lungs, the baby that gave them to us, and the babies family so fiercely. I know our 6 month celebration will be a sad day for another family, but I hope they feel some joy and some comfort knowing that our unknown baby and unknown family is alive and doing OK today because of the decision that they made nearly 6 months ago. Just looking at my little world, my family, and my son, I have been keeping my eye on this 6 month mark from the day that Oakesgot his new lungs. In the brutal survival statistics that we have read through about the recovery timeline for pediatric lung transplants, the 6 month mark is the first real milestone. Up until now, I have been thinking, if we can just make it to the 6 month mark! Please, God, let us get there! The first 6 months are always the most critical, and the reality is that we have kind of squeaked on through, but making it to 6 months, means making it another six months is more probable. Yes, we are still in the ICU, but are not in the scary intense place that we were in for months where Oakes truly was fighting and holding on and just so critical. We are kind of in the smooth place now. We have hit bumps, but recently even his care has shifted a bit from having been reactive to a bit proactive. We aren't just scrambling and managing every crisis that pops up, we have been taking away meds, adjusting his routine with more long term care in mind, and just all of the normal little things we are able to do - Isla playing with him, holding him whenever we want, having him sit and taste food - 6 months out and I feel like we can exhale a bit and celebrate this good place.

A couple of months ago when Oakes was having some trouble breathing and we were talking about going to the OR to dilate, Dr. E told Greg something like, "Oakes has been drifting right above the tree line for some time now and if we hit a bump, he quickly starts to descend, it's like he doesn't have a lot of reserves" Greg came home and told me that I welled up with tears and shook my head back and forth. I heard what he was saying, I got it, but I had a different perception. I could see him cruising above the trees too, but I saw him cruising, coasting, gaining momentum, and waiting for the right time to really take off. I feel like in the last 6-8weeks we have seen a change with Oakes. His reserve is not full, he is far from the normalstrenght of a 10 months old, but his endurance has changed and we are not just coasting. There were times where Oakes didn't do aggressive. He didn't make bold moves and didn't respondfavorably to them. But recently, when a big change has happened I think he has taken the challenge, he has said, "I will try, I think I can do it" and then usually he holds on for a few days and is saying, "Momma, do you see this, I CAN do aggressive!?" Or, "Dr M, yes, you can change my vent settings, I can take that too." I think Oakes wants to please us, he wants to show us what he can do, he wants to show us that he is a big strong boy and of course I think he is so excited about this talk of coming home. For the most part he really has held his own, he has made me reconsider how he can handle these aggressive moves, but there have been a few times that he has said, "Ok, I'm done with that, I can't keep it up, I'm tired....Momma? Dr. M?.....I need help now", and I think we have done a pretty good job of listening to him. I am sure you remember that in the past it would takes days for him bounce back even weeks, but now its much quicker. It seems like within a day of anything he is awake and smiling again. A change I hadn't seen coming, but I love it now that it is here.

My little Oakes. He's not just this little acorn rolling around in the soil. He has felt the sunlight, and benefited from the rain. He has roots now. They have been digging in for some time, andOakes is really starting to hold his ground.

So, my eye will be on the 22nd for that 6 month marker, and then I will have July 22nd in the back of my mind for the 1 year marker, but in between I will just try to keep doing what we have been doing all along. Taking the days as they come, taking deep breaths, smooching all over both of my babies, hugging Greg tight, praying for more miracles, for more healing, praying that we reach more milestones, that we add to our list of firsts, praying that we continue to adjust and manage the needs of Oakes and Isla just the absolute best that we can. I will say prayers of thanks for all that we have been given and for all of the blessed days that we have seen so far. I will continue to pray for wisdom and clarity and the consciousness to slow down and actually live each day with Oakes and with Isla and make the days, weather they accumulate to months, or years or dozens of years, really count.

Sitting and watching Oakes breath, watching his chest rise and fall, hearing air move in and out of him, it is easy to be remind of such peaceful ideas, and such important prayers. I will keep you all in my prayers too. I will continue to say prayers of thanks for our friends, family and their love and support.

Love to all of you.

Becky

Thursday Night Update

As Greg mentioned below when he posted pictures earlier, todays visit to the OR went well.

First, nothing was found in his stomach. Whatever was there must have passed through his system. Adios, "thing".

Next, I made a mistake in saying that he was getting an JG button. He simply has a G button, as in Gasto. Feeds will now go straight to his stomach instead of bypassing the stomach and going to the intestines. I don't know how I missed that.

So, PD gone. Adios.

Goodbye tape and tubes on the face.

Hello chubby cheeks and hello G Button.

In addition to the G button there were two other small issues that were taken care of in the OR. Since Oakes has had reflux issues, and we are now feeding the stomach they preformed a Nisson fundoplication on him. This is where the top of the stomach is wrapped around the bottom of the esophagus and stitched in place. This should greatly help to prevent reflux. In most of us, reflux is uncomfortable but not a huge health threat, but if Oakes were to repeatedly get stomach acid in his fragile lungs or airways it could be a significant problem. After the Nisson was completed a quick glance at the bottom of the stomach showed that Oakes'pyloric sphincter, the muscle that allows digested food to pass from the stomach to the small intestines was a little abnormal, it was a little too thick and this could have been contributing to his reflux issue. A Pyloromyotomy was performed which corrected the issue. Dr. Tarr, who performed the surgery today said this issue is very common in lung transplant patients.

So three hours in the OR and Oakes is looking good. He is not feeling so great right now, but in a few days I hope to see huge smiles sandwiched between chubby, rosy cheeks.

During those 3 hours I had several really good conversations with some of our favorite doctors. Dr. Lee came by to check on Oakes and I. Dr Eghtesady came to check on us, Dr. Michelson, Dr. Murphy, and at the end of the day, Dee Dee, Dr. Eghtesady's research nurse and single person in charge of pushing Oakes' stents along. She gave me a very different update from what I had gotten earlier in the week. She said that the stents have not been approved by the FDA, but she thinks that we will get the approval next week. She left me with an 8 page consent form that we needed to sign and get back to her so that the final paperwork could be submitted. Once the FDA gives her the go ahead the order will be placed and the stents will begin to be fabricated. She confirmed 2-3 weeks to get them once they are ordered and she didn't think that we would need to launch a stent recovery mission to get them. Anyway, sounds like we moving in the right direction and should not be too far off of those February /March time frames. The other interesting piece of info that I gathered from Dr. Eghtesady was that he now thinks that Oakes may only need the stent on his right side, and not the left, which is exciting.

Thank you for all of the prayers and sweet words today!

Love and heartstrings to all of our amazing friends and supporters!

More chubby cheek pictures to come soon, XO

Pics Of Cute Boy With No Tubes

Guest blogger today! Just couldn't resist sharing these new pics post-op of Oakesie. Surgery went great and he is resting peacefully. Look at those cheeks!






Love G,B,I,O!

The Happy New Year update.

Happy New Year from the Ortyls!

So far, 2012 has been a good year and even though last year was jam packed with "firsts", I have a great feeling that this year will be full of firsts that we will really be celebrating!

So here is the scoop.

Tomorrow Oakes heads to the OR to get his JG button, he is having his PD drain removed and to have a little unidentified object removed from his stomach.

For sometime the JG has been on the table. Oakes has a small ulcer like sore in his esophagus, likely from the current NJ tube that runs from his nose to his small intestines delivering formula. Oakes had reflux issues before his transplant and since the transplant there have still been issues with reflux, so planning for the future, a JG is the best option on Oakesie. The JG button is a little port that will be placed in Oakes' stomach. As of tomorrow, we will be able to feed him directly into the stomach with the feeding tube, and later when he is at home we will do the same thing. Open the port, feed him a liquid meal and continue on until the next feeding. Not only will we get the annoying tubes out of his nose and esophagus, but this means no more need for tape or tubes on the face!! I honestly am more excited about him being sans-tape than I am about making feedings easier! The memory card on my camera is clear.

On Dec. 22, I noticed there was a pretty nice amount of blood being pulled out of Oakes' stomach. So Oakes has the NJ tube in one nostril, which delivers food to his small intestines. The other nostril has a tube that sucks bile out of his stomach and into a clear little collection cup. This is called a Replogle and this is where I saw the blood. Sometimes the suctioning of the Replogle can irritate the stomach and it may bleed but the next day and ultrasound showed that there is some little thing in Oakes stomach. And we do not know what it is. I think my exact words were, "You have got to be Fing kidding me!" Actually, that was not exactly how it sounded cause I used the real F word. This "thing" does not appear to be piercing the stomach. It does not look like tissue. It looks perfectly round, and metallic. But it does not show up in X-rays, so it can't be metallic. No one knows, but it is coming out tomorrow.

Over this past week Oakes came off of Milrinone and we have also seemed to take pretty good control of his issue of being overloaded with fluid. Milrinone is a sophisticated medication that helps the heart relax and pump more efficiently all at the same time. It also causes the blood vessels to dilate, so there was a theory that the dilating vessels were causing blood flow issues with the kidneys and in turn effecting Oakes' kidney function. So the milrinone was weaned, Oakes has dried up - his belly has shrunk down, he isn't so bloated and so far, so good. If I were saying this out load in Oakes' room I'd be whispering and tip toeing away from Oakes so that Oakes' little heart and kidneys could not hear this news. First of all, Oakes has been on Milrinone most of his life. And lots of heart kids need it for years and years. Actually when we came home to wait for his transplant, we were given the smallest backpack ever to store the dispensing milrinone in. Lots of toddlers wear these packs as they play and walk around all while getting a constant drip for milrinone. So to be off of Milrinone feels enormous! I asked at rounds on Monday, "So are we allowed to get excited about this yet" and I got some furrowed brows and quiets nods side to side. Not much was said, no one wants to jinks anything, knock on wood, type on keypad, but after 2 weeks without milrinone or any other substitute we can get excited. We are still in the wait and watch mode. So don't do a full on happy dance yet, but be prepared, please.

I mentioned in the beginning of this post that tomorrow Oakes will have his PD drain removed. Since he has dried up, and his abdomen is small, the PD drain (Peritoneal Dialysis drain) is going away. No more dialysis for Oakes! Ok, do you happy dance now.

The last time I posted lots of details we were just starting dialysis. His doctors thought that he would need the dialysis for several weeks and he only had it for one week. It seemed to do the trick just fine, but now it seems like the milrinone was the missing piece that made all of the difference!

Right before Christmas I was sitting in Oakes' room holding Oakes, he was snoozing, I think I was buying Christmas gifts online on my phone and our friend Dr. Michelson came in to chat. We talked about Oakes and the latest with him at the time. We talked about the stents, and all kinds of stuff, then at the end of the conversation Dr. M through out that he had a little goal to get Oakes home for Valentines day. I hardly got excited, I think everything that I have learned about time frames on that floor has taught me not too, but I told him, " I will take your Valentines Day goal and give you an extra month. Oakes turns 1 on March 10th and I would LOVE to celebrate that day with him at home." Dr. M had a huge grin on his face and he agreed that that is a great goal. As he walked out of the room he mentioned that he wanted to be invited to the party and I assured him that he is invited to EVERY SINGLE birthday party that Oakes & Isla celebrate.

March 10th is not quite 2 months away!! Hopeful happy dance now.

So the stents. They have officially been ordered. Between Christmas and New years the FDA approved the use of the stents. On Monday morning Oakes had a CT scan and 3-D images were taken of his airways, which were sent off to Austria. Building the stents will take about 3 weeks, maybe less, so the stents could be placed in about a month?! The other exciting news about the airways is that Oakes has not required ballooning of his airways in almost a month, which is great! It seems just amazing.

So if all of this isn't exciting enough, here is some more info that will make you smile. Last week Oakes had his first taste of food. Baby food bananas. Yum. He loved it. He got one little taste and was wide eyed, flailing his arms and legs, ready for more. So we will continue to offer him tastes of food. His reflexes are good, he moves his lips, brings his tongue to his lips - slowly but steadily we will get him eating by mouth.

When Oakes is awake he is happy and alert. He is starting to move more. If you put him on his side he can push himself to his back. If he is on his back with toys overhead, he will kick and bat like crazy. He may be a little athlete after all. Right before Christmas he realized that his hands are his own. A milestone that most babies make much sooner, but we will take delayed milestones, thank you very much. And he isn't really sucking his right thumb like he used to. For about a week he was grinding his teeth, thank goodness that stopped. Now, he holds both hands up to his mouth and just kind of rests them there. He might put his index finger in his mouth, but you never know, he's just trying out new fingers I suppose. Just today, I asked Daniel, his nurse if he knew where if at all Oakes fell on the national curve for height and weight. When Oakes was admitted to the hospital pre-transplant he was not on the curve. Not even close, which was devastating to me. All moms want a fat healthy baby after all. "Failure to thrive" are words that no Mom wants to hear about their baby. So anyway, we did some digging, and plotting and discovered that Oakes is in the 50th percentile in weight, and he is in the 3rd percentile for height. We are on the curve, people! Happy, happy, happy dance!

Lost of firsts to celebrate already!

Off to bed for this Momma.

I will post updates and photos tomorrow.

Heartstings to all of you.

Becky

Oakes swinging and kicking at his new mobile made by Isla.

Our last visit with Nel. Nel the therapy dog has retired! We love you and your silly costumes Nel, we will miss you sweet girl!

Finding his hand.

On New Years Eve, I went up to give Oakes a smooch at midnight. He slept through every second of the excitement.

And by excitement I mean, a line of beautiful, intelligent, super-loving, and all around amazing girlfriend/nurse/aunties lined up to smooch him right after me!