Mighty Oakes Charity Crop Saturday

Good evening, everyone.  I think I’m only sending this to folks in St. Louis or who have deep ties to the area…hope so anyway.  I am way, way overdue in providing an email update to everyone but hopefully you have been following along on our blog at www.babyortyl.blogspot.com, and judging by the “visitor’s map” on the site, all of you and hundreds of your friends are following along!  I promise I will send an updated email in the next few days with lots of details and updates from the last month since Oakes’ transplant and what the path ahead looks like, but in the meantime, I’ve been remiss in not letting you all know about a charity event that my mom, sister and aunt are organizing.  Unfortunately, it’s this Saturday and I’m not giving you all much of a heads up, so I really apologize for that (to you all and most importantly, Shani, mom and Aunt Naa).

 

The event is a charity crop.  I had no idea what a crop was until they organized this event, but apparently it’s an all-day event within a large space where folks can go and complete a project or projects throughout the day.  It could be scrapbooking or painting (Beck will be working on an Oakes painting) or some other crafty hobby thing or even some mundane task that has been elusive getting to within your crazy daily life like paying bills or something.  Anyway, it’s only $50 and you can come and go as often as you’d like and, in true Ortyl fashion, there will be enough food to feed the entire city.  The best pizza on earth, Dewey’s Pizza, has agreed to provide their awesome pizza and salads for everyone and my mom, sis and aunt have lined up several other sponsors to help feed the masses.  There will be some giveaways and other fun stuff.  There are several spots open and they’re hoping to sell out and I only wish I would have let you all know much sooner.

 

I have attached a flyer with all of the information and we certainly appreciate any consideration.  You can also check out www.cropforoakes.com.  As you’ll here in my update later, there will be several other upcoming events which you can participate in, if you’re so inclined.

 

BTW, The Mighty Oakes Heart Foundation has been established, has a Board of Directors and a website ready to view (www.mightyoakes.org; many thanks to Phill Fox, Beck’s bro, on setting this up!), so we are moving forward in helping other families deal with congenital heart defects.  Much, much more on this and our precious Oakesie in my update later on…..

 

Love you all,

 

Greg, Becky, Isla P. & Mighty Oakes

www.babyortyl.blogspot.com

www.mightyoakes.org

www.cropforoakes.com

 

 

His thumb.

For most of the day today, Oakes was awake, alert and happy...I was in heaven. Oakes was very alert, and very engaged with anything that I put in his line of sight, new sounds and voices coming into the room. He was turning his head form side to side and moving his legs like I have not seem do in weeks. His left arm has a huge almost cast on it. He has a line in that arm so his arm is entirely wrapped and protected. Those fingers are within a little plastic encasement so his arm is like a big club right now. His right arm is free of lines, so it has none of the extras. Since he is intubated, that arm is usually restrained. It gets moved around and repositioned, but it is always tied down. Today, however, his sweet nurse Patty agreed that if I stood there and policed this vent tube, that we could remove the restraint. I was up for the job, and Oakes loved it. He was flailing that arm around like crazy. He did grab onto the vent tube a few times, but didn't come close to pulling on it. For awhile he was working on getting his thumb in his mouth and I was even trying to help him, but it never quite made it. When I left the room to head home, Oakes had found a compromise, his curled up fist was resting on his mouth like he was sucking that thumb!

My sweet, sweet Oakes!

XOXO, Beck

Monday, August 22...1 month.

Today has been the 1 month anniversary of Oakes' transplant. One month ago, our sweet little man, that looked pretty perfect on the outside would get the most amazing gift that anyone could ever get, beautiful & healthy new pulmonary veins surrounded by perfectly healthy lungs, a gift that was essential in getting us here today.

I thought a lot about Oakes' donor today, and his donor's family. I can only imagine that their hearts were breaking today, being the day that they lost their baby. We are so very grateful for the absolutely selfless decision that they made to donate their child's organs. I pray that they find comfort today knowing that their decision saved our Oakes' life as well as several other blessed children. I mentioned right after transplant that I would love those new lungs, and I sure do. I have been loving those lungs, and loving that baby through Oakes. There isn't a day that passes that I don't think about Oakes' donor angel.

I know that Oakes has a long road ahead of him, but today I feel so blessed that he lived to get lungs, and that he has made it this far. That kid has had the odds stacked against him for so long. We have had some very scary days and nights, some gut wrenching conversations, amounts of stress, tension, and anxiety that I have not known how we would endure, and lots and lots of tears. But like you know, we have had some really good days too. I know that Greg and I both hang on to those good days, we continue to hope, and we pray for many, many more good days to come. Hundreds of them, thousands, tens and tens of thousands, as many as we can possibly get.

Over the weekend I ate lunch with a lady, a mom, that I met in the elevator on the way to the cafeteria. She also has a sick son, actually a sick foster son that she is in the process of adopting. He and Oakes have very different stories and she and I have different stories too, but we had a lot in common. At the end of our lunch we were both in tears, agreeing that we would not trade our amazing little men for perfectly healthy ones. I feel so blessed to have Oakes in my life. I love him like crazy. I love being his Momma. I am proud of him, impressed by him, confused and in awe of him - I don't know how he has done what he has done, or how he is enduring what he is enduring. I just adore him. I love him, love him, love him! Every inch of him, ever limb, every organ, every cell, I wish I could just breath him in. I love him and I am happy, happy for today.

Oakes has taught me a lot in his 165 days on earth, but one thing he has taught me is to just be here. To be here today, or be here in this minute. To see him and be with him. I can, and do, sometimes get completely overwhelmed thinking about the future, about what is next, and what it will take to get there, and what are the odds that we might get there, and on and on....but after a short time of running through these seemingly impossible scenarios I have learned to just let it go. I should say, I am learning. I am learning that if it is out of my control, or there is no answer, then there is no point in worrying about it. When I am in Oakes' room this is easy to do. I can just stand by him, touch him, watch his chest rise and fall, see him move a little, feel his now prickly hair, if I'm lucky I can look in his eyes, and I calm down and come right back into the moment. And I just am. I am here. I see him, I am here with him, and usually, when things are calm, those moments are great, and they get me through to the next moment. Sometimes when Oakes is upset I find myself telling him, "I see you", and "I'm right here" and I pray that that will help to get him through to the next moment too.

Lots of prayers of thanks tonight from our house. Thanks for those lungs. Thanks for 165 days of back to back miracles. Thanks that Oakes has the sweetest, most adorable, loving, little ray of sunshine sister that really is the best medicine for Greg and I. Thanks to our family and our friends. To all of Oakes' friends around the world that are praying for him and cheering him on. And his amazing team of nurses and doctors! Extra special prayers for our donor family as they grieve and prayers for our friends and their children that did not make it to transplant. Prayers, prayers, prayers and love.

Heart string tugs to all of you, Becky

Bubba.

We knew Oakes was in good hands this morning and took our time getting here. When we got here he was dressed, and sitting comfortably in his Boppy!

I had tears in my eyes when I saw him. His transplant was a month ago tomorrow and he has not been dressed since then. Clothes haven't been on my radar at all, but it was so sweet to see him looking like a 'normal' little baby with clothes on!

With Oakes' chubby cheeks, athletic socks, onesie and his reclined lazy-boy position, I think I might call him Bubba today! Kick your feet up kiddo, have a good nap, soak up the love and prayers swirling around your room, you are doing so very well and we are all so proud of you!

May you all have an equally relaxing day!

Hugs and tugs, Beck

Final test results in.

First things first, more smiles. Smiles in his sleep. Love it!

Ok, so rounds just passed and Dr. Doctor just shared more detailed biopsy results with me. On a cellular level Oakes is not rejecting his amazing little lungs. Initially after transplant, there were about three different diagnoses to his lungs. All of those issues are now gone, meaning his new lungs are not "sick", they are still healing and have made significant progress since the last bronch. All good news.

On a Hemo level, or dealing with Oakes' blood, there is one specific protein that Dr. Doctor said is attaching to Oakes' lungs that should not be. He assured me that "there is still some powerful weaponry" to use on that pestering little protein, and the team is currently discussing their next move. So, not completely out of the woods, not great news, but not bad news.

Two days ago while getting set up for the Bronch, the drain to Oakes' left lung partially came out. The stitches holding it in had just loosened and it gently started sliding out. It was completely removed then, and this evening Dr. Hudd will insert a new drain on that side. There has also been talk about permanently pulling back the line that is used for pheresis. Oakes is still so puffy and one theory as to why this is, is that the pheresis line (that goes directly into his heart) is causing a little interference with blood flow in the heart, which is then causing him to retain fluids. So one theory is that if they pull that line back, he won't retain fluids, and by letting go of fluids it will alleviate pressure on his diaphragm, which will alleviate pressure on his lungs and then he may be able to be extubated sooner. However, some of the Dr's on his team think the Pheresis line should stay, and we should continue pheresing him. This debate has been going on for over a week and no one seems to have a definite answer. It is slightly frustrating that there isn't protocol for Oakes, but I know that this complex little guy is not a textbook kind of patient and I have all of the confidence in his team. I am just looking forward to continuing to move in this same path forward.

Before Dr. Doctor stepped away I asked him if he would say that Oakes is definitely out of rejection. He said, "yes and no." He shared that ultimatly the test results from today are good, but that we still have work to do. He said looking back on the week, Oakes has definitely had a good one. He has continued to make progress and Dr. Doctor remains hopeful.

Feeling extremely thankful, extremely proud, extremely hopeful.

Praying for another boring weekend.

Sending little tiny Oakes smiles out to all of you and giving you a little tug on your heartstring!

XO, Becky

Second best update.

Smiles!

I hogged some to myself, but then grabbed my camera. This is the best that I got, but I promise there were many smiles, they were big and intentional, very gummy with those two little teeth, his eyes were locked on me and my heart is still melted!

We are having a happy and boring day, and I am LOVING it!

Best update in some time.

Preliminary test results came in at the end of the day. The results look "clean"....which means no more rejection!

Amen.

Final results will be in tomorrow by the end of day, but the preliminary results are enough to get excited about!

More good news. Oakes came off of the last heart medication today. A huge milestone since he has been on that since month 2 or so.

Additionally, he is weighting in at 6.7kilograms which is 14.7 lbs, he is up about 4 lbs since transplant. Some of that is water weight, but still he is growing. Actually, I just noticed the other day that he is easily filling out a size 2 diaper. Atta boy, Oakesie!

Going to bed saying only prayers of thanks!

Thank you all for your love and support. No doubt that the power of prayer has helped our little miracle in diapers!

XO, Becky

Cute Oakes.

When I got here this morning, Yvonne had Oakes in his little acorn hat (a gift from his girlfriend next door, Elizabeth!), a bib on, and he was wearing his oh-so-manly leg warmers! I knew it had been a relatively uneventful morning if Oakes was all done up!

Then, while Yvonne was at lunch I decided to cut Oakes crazy hair. Here he is before the trim...

It was pretty much a long crazy baby toupee!

And here is Oakesie after, looking handsome like his Pappa!

We also had a visitor today. Nell, the therapy dog, dressed up like Pippy-long stockings, minus the stockings!

Our Little Fish!

Test results and Biopsy.

{Oakes resting with his friends today!}

So test results came back from blood drawn on Monday and they, unfortunately, were more of the same. Some antibodies were gone, some elevated and some new ones. We were so hopeful that the results would have been more dramatic after all of the chemo and meds this past week or more, but not the case. Again, not great news, but not bad news either.

When I got here this morning I was told the test results and also informed that the team wanted to get a biopsy of Oakes' lungs to see if the rejection is at all under control. We have been told several times that clinically, they believe that Oakes is doing better. He just looks better, he has tolerated the vent being weaned, been tolerating feeds, peeing more, etc, so hopefully this biopsy will reaffirm that clinical opinion that everyone seems to have.

The biopsy will happen here in the room very shortly. I am praying that tolerates the procedure and bounces right back. When Oakes had a biopsy a week post transplant it was the day that he was over doses and then really struggled to stabilize. He is much stronger now, and his lungs have had almost 3 weeks to heal, but there is still a little uneasy feeling in my stomach.

I just had a little chat with my man and explained what is about to happen. I explained that he will be sedated and paralysed for the procedure, but once it is completed he will start to get milk again (feeds stopped at 8am - in case he is at all food motivated like his sister). I explained that I will be here in the room with him, and even though I suspect that is comforting I suggested that he go far away to his happy place. I asked him on an itty-bitty cellular kind of level if he would please halt the full antibody attack on these new beautiful lungs and healthy veins and welcome them to his adorable little body. I assured him that everyone will be praying for him, sending him deep breaths and tugging on their heartstings. And can you guess what Oakesie just did...he smiled in his sleep! I love you Oakesie!

Will post an update as soon as everything wraps up! XO, Becky

9pm update: The procedure went well. Oakes is resting and stable. Oakes was sedated and paralyzed for the scope as planned. His numbers looked good throughout the procedure. I just got off of the phone with his night nurse and he is still sedated and not moving. During the scope his doc got several nice sized tissue samples. Results should be back in about 24 hours. Before the procedure I spoke to his Pulmonolgist for awhile. I asked if he could clarify why they decided to the the scope today. He shared with me that they are trying to better understand what is happening with Oakes. Like mentioned, clinically he looks good, but his blood work keeps showing antibodies. He suspects that the antibodies that are present are good ones, or ones that are not attacking the new lungs. The lung biopsy will let them look at the cellular structure of the new lungs to see if they look more healthy compared to the biopsy done about 3 weeks ago. So these will be more definitive results to tell us if the rejection in being controlled.

A few other things: Earlier today Oakes Pulmonologist shared with me that rejection of some sort is expected in lung transplant patients. With Oakes, because his antibodies levels were so high pre-transplant they knew he would reject, they just didn't know how soon or how severe. All of this had been shared with us pre-transplant. So today, he explained that first we want Oakes to tolerate his new lungs on an antibody level. Then later, we hope that he will accept them. As he was talking I thought, Oakes and lungs aside, what wisdom, what a great life lesson....to be more tolerant and accepting.

Secondly, I ran into Dominic's father today. I mentioned Dominic months ago. At least I think I did. In either case, Oakes and Dominic were roommates in 7W before we came home the last time. Dominic is almost two, and had a lung transplant about 11 months ago after being diagnosed with pulmonary vein stenosis, exactly like Oakes. Dominic has 2 siblings and a loving mother that live in Michigan. Dominic and dad have been here on and off since his transplant. Anyway, they were supposed to go home on the same day that we brought Oakes home (nearly a month ago), but they have been here ever since. Dominic has been in the PICU (Pediatric ICU) since leaving 7W. His dad shared with me that for the first time ever, Dominic has been receiving pheresis. He is on his second treatment in the last two weeks after his team saw promising pheresis results from " a little lung transplant baby in the CICU". It took seconds for Dominic's dad and I to put the pieces together, but that baby was our Oakes! It was SO touching to think that the knowledge gathered from Oakes positive results on pheresis is now benefiting another child here, especially our little buddy, Dominick. And according to his dad, his numbers are all improved and he is responding very well to pheresis. Deep breaths and heartstings to little Dominic and his family!

My heart is warm. My body is exhausted, I am going to crawl into bed and will do this all again tomorrow.

Love to all of you, Becky

I got to hold Oakes for a few minutes after the scope while his bed was getting swapped out. Heaven!

Loved Oakes in my arms! (Thank you Yvonne & Sarah, you made my day!)

Tissue samples labeled and on their way to the lab.

Those tiny red flecks are the tissue samples. They were about the size of pin point- itty bitty!

His brilliant, gentle and loving girlfriends/nurses fussing over his after the procedure. We love you Yvonne, Sarah & Kim!

Being Mighty: Jeff Bell.

A couple of years ago my Sister Tina, who lives in Washington DC, trained for a Triathlon with an organization called Team in Training. She raised lots of money for charity and made some amazing friends along the way.

Here is an email correspondence that just bounced back and forth between Tina & I:

From: Christina Fox

Subject: Fwd: mighty pose
To: "fox"

Date: Monday, August 15, 2011, 10:51 AM

Becky! wanted to share this....its a pic of my old coach and one of my besties Jeff Bell...he told me he was racing on Sunday so i told him to Be Mighty! He dedicated his race to Mighty Oakes...notice his arm...and then he placed first in his age group! When he sent the pic i had to share it!

On Mon, Aug 15, 2011 at 2:18 PM, becky wrote:

are you kidding me!!

I love jeff bell!!

what was the race?

Xo to you and Jeff.....my new bestie! Go MO!

On Mon, Aug 15, 2011 at 2:24 PM, Christina wrote:

He did the 2011 Northeast Triathlon. Jeff is the best and i love that he races in honor of his heroes! Before the race he texted me his Mighty Roar...."GRRRRRRRRRRRRR" but the fact that he placed first of all the men in his age group is huge! he is a rock star!

Dear Jeff Bell,

YOU are amazing!! You are my hero, you are Oakes' hero! Thank you so much for not only thinking of our Mighty Oakes on Saturday, but for dedicating your race to him. I can not think of a more grand gesture. I hope that Oakes will grow into a thoughtful and compassionate person like yourself. I also look forward to the day that he is happy and healthy running around, putting those lungs to good use! I will now add to my list of daydreams forOakes...competing in aTri.....Go MO!

Sending deep breaths,heartsting, hugs and kisses your way!

Congratulations on placing!

XO, Becky & all of the Ortyls.

Crop & Craft

Ok, so on August 27th, I will be spending my day with friends and family at the first official "Might Oakes Heart Foundation" fundraiser, and if you are in St. Louis I invite you to join us!

When we learned that Oakes would need a transplant we were advised to begin to raise money for medical expenses. We are blessed with great insurance, but know that most of the medicines that Oakes will need post-surgery for the rest of his life will not be covered by insurance. We quickly decided to start a foundation in Oakes' name to raise money not only for these medicines but to help other families like us that have been faced with the scary reality of having a child with a heart defect, as well, we want to help fun research that will one day help our little Oakes as well as other children with congenital heart defects.

So, our foundation is official. It is up and running and it's website will be up in just days.

There are several heart touching fundraising event and projects that are in the works right now. I will elaborate on those later, but for now I have to mention the upcoming "Crop" that will happen on August 27th. There are several seats left that we are hoping to fill, so here is a little more info. The Crop is an all day event being put on by Greg's sister Shani, his Mom and Aunt. The main intent of the Crop is to scrapbook, but not everyone scrapbooks, and this is a group of creative and loving gals, so anyone that wants to spread out a project is welcome to join. I personally have not gotten into scrap booking, however, I love to paint and so I will be spreading out my paints and throwing my brushes around, hoping to finish a project for Oakes!

When I was pregnant with Isla, I painted a large canvas for her that has been hanging over her crib since before she was born. I started one for Oakes, but it just didn't get completed (I hear this is common with baby #2!?), but I am excited and determined to get most of it, if not all of it, finished at the Crop.

Since the Crop is an all day event, food and drinks will be served. I don't know all of the details, but I do know that Dewey's will be sponsoring lunch and bringing in their delicious pizza and salads. There will also be prizes that will be raffled off throughout the day, not to mention first hand updates on Oakes.

Please consider joining us!

To register go to the Crop website: www.cropforoakes.com

You can email me with questions: peandpm@yahoo.com

Here is the completed and hanging canvas:

Sunday.

So Oakesie patrol is over, Ena headed back this morning and we miss her already! I am up inOakes' room for the first time in days. I wouldn't have thought it was possible, but he looks different to me (extra cute, of course)!

Today was the last day of pheresis. It is my understanding that there will be no more rounds of this, so good-bye to our sweet pheresis team and their crazy Dr.Suess pheresis machine, thanks for the good times! Tomorrow Oakes will get a "chemo-like" drug (he has been getting this once a week since the rejection was diagnosed) followed by some lab work. Results of those tests should be back mid-week and will tell us if the aggressive chemo drugs, steroids, pheresisand meds have been effective in reversing the rejection. In the last few days Oakes has been switched from one pain medication back to morphine, his catheter has been removed, he is at full feeds and he has been blowing out multiple diapers a day - likely a side effect of all of themeds he is on. He is not nearly as puffy as he was about a week ago or even days - a sign that his kidneys are working better. His vent has been weaned some, but nothing significant. Some days he has kept up with the adjustments to the vent, but other days he struggles a bit and the vent gets turned back up. He is no longer laying flat, his nurses now have him up in his boppy, which looks like a comfortable change to me.

Isla still has a yucky nose, but hasn't had a fever in probably 3 days. I don't think I got her germs in hind-sight, my symptoms were very different and I think I was just showing symptoms of flaring allergies. Still, I am masked and gowned and keeping my distance.

Praying that this week will be another good week, with several Oakes sized steps in the right direction. Heartstings to all of you! Becky

Oakes sleeping on his 5 month birthday!

Saturday.

Having another good day. Oakes is slowly and steadily getting stronger. His vent is being weaned a little more everyday. He keeps throwing little fits (who can blame him), but last night his nurse told us that he was smiling at her!!

Greg and I have not been up in days because of Isla's little bug. I think whatever she had, I now have so it may be a few more days. My Mom is in town and she is on "Oakesie patrol" and she is loving it. Hopefully she will get a little smile today!

Hope you are all having a great weekend....XO, Beck

Friday.

Oakes has had a couple of good days again. No news has been good news. He is still waking up and squirming around. His numbers look good overall. Occasionally when he wakes up he gets upset and his numbers jump a bit, but nothing alarming. Still coming down on the vent, urine output is good and still tolerating feeds just fine. Today is the second day of pheresis in this round.

Yesterday Isla woke up with a mild fever and yucky nose, so we did not go to the hospital yesterday. Germs and Oakes would be extremely bad combination since his immune system is so compromised. Ena is in town and on Oakes patrol today, while we stay at home and snuggle with Isla. Being spoiled by lots of incoming gifts and goodies has been a huge help these last 36 hours or so!

Praying for more of the same with Oakes. Hoping Isla loses the yucky nose and takes to the potty very soon!

Hugs and Heartsting tugs to all of you!

Wednesday....Oakes is 5 months old today!

First things first, good news. Test results came back very similar to the last pheresis test results. Some antibodies are gone, some have higher levels and some new antibodies are present. At this point is does not seem that pheresis has amounted to a huge amount of progress. However, yesterdays powerful medications should significantly reduce Oakes' production on antibodies. His team has agreed to start another 4 day round of heresis. They are hopeful that the results of this round will be more significant since it will be following all of the chemo. The doctor that I spoke with said that clinically Oakes looks to be improving, and that the transplant team is very encouraged. This round will start tomorrow and go til Sunday and they will recheck his antibody levels on Monday.

Oakes had a good day today. He was very restful but when he was awake was consistently agitated and working a little harder to breath. The doctors have been weaning his vent every 12 hours, and this evening turned the vent back up a bit. They suspected that he is not ready to have the vent weaned so quickly. I reminded Dr. Gazit that Oakes like a slow but steady pace.

I spent a big part of my day with Isla today and have just sat down for the first time today. Sorry, this is so brief, it is only because I am completely pooped! Tugs & Hugs from the Ortyls!

Wednesday afternoon.

Hi Mighty Oakes Fans! Guest blog from Aunt T. I just talked to Becky and she was worried that it might take her too long to update the blog and asked that I update everyone. Oakes has had a good day and is stable. She was up at the hospital today with him. Test results haven't come back yet so she will update the blog again as soon as she hears back.

Thanks for your thoughts and prayers and keep them coming. On a less urgent topic, Isla P has started potty training so maybe send a positive thought her way or tug at the heartstring for her would be nice!

Be Mighty!
Christina/Tina/Aunt T-frannie

Tuesday *Correction* to the previous posting

So I came home just a wreck all day today and had no idea why Greg was not. As we started talking about this mornings conversation with Dr. Gazit it became clear that we heard completely different message from him. Greg was horrified hearing what I had been considering all day and so we called the ICU. Turns out, I was wrong about the test results. I had heard that if the test results came back telling us that treatment was not working that they would stop treatment. But in actuality, if treatment isn't working then they will keep trying to treat the rejection with the same medication and treatments with possibly some new twists. This does not sound like it's the end of the road if the results come back "bad".

I am so terribly sorry for the confusion and miscommunication!

I will certainly keep everyone updated on test results when they do come in!

Love to you all, Becky

Tuesday.

Invisible stings are great, but I know you all want to hear about the latest, so here it is. Yesterday was a big day for our little Oakes. Pheresis in the morning, two different doses of chemo followed by a dose of IVIG. The chemo basically is eliminating his antibodies, to stop or reverse the rejection and the IVIG is the introduction of good antibodies, also intended to halt rejection. An aggressive day, but essential treatments. He tolerated everything just fine until later in the evening where is blood pressure dropped significantly. It took quite a bit of tweaking before his blood pressure was controlled. Even then his body temperature was not consistent. His limbs were cold but torso warm, and his pulses were weak in his limbs, both a sign that he was not circulating blood properly. His urine output also dipped. Currently he is stable and resting like the sweet little guy that he is. Greg and I both got here this morning and were met by Dr. Gazit, this weeks Attending and maybe our favorite Attending. He recapped the evening for us and the plan for the day. Oakes was to receive an Echo to take a look at his heart and make sure that it is working just fine. (That has since happened and both upper chambers look good) Other than that the plan for the day was to rest after yesterdays crazy day. Before we lost Dr.Gazit's attention I asked him, what I called an impossible question. I asked if he could paint a picture of what we might anticipate the upcoming weeks to look like. He shared that blood work was being done on Oakes today to see if he is responding to all of the aggressive medicines that he is on. If he is responding, then they will be able to formulate a plan to move forward, involving extubation and getting us home in a handful of weeks. If he is not responding, then we will discuss other possible treatments. We should get test results tomorrow.

As of now, Oakes looks great. He has been awake on and off today. I got to hold him for maybe 10 minutes as his nurse, Miranda changed his bedding - thanks to a huge, poopie, blow-out diaper! I trimmed his fingernails after that, and tucked him in with soft blankies from home. I think he is a bit pooped from yesterdays treatments and I am too.

Praying, praying, praying for good news.

Becky

Invisible String All Over Oakes' Map.

{Isla and T playing}

So, a few months ago after watching Isla completely freak out when I tried to put a band-aid on her, I decided that we needed to make "boo-boo's" as we call them, not a big deal. From the day that Oakes came home with oxygen tubes taped to his cheeks, Isla could vocalize that Oakes had band-aids on his cheeks and a "boo-boo" in his nose. We went with it, but now she has an extreme reaction to any injury and most of all band-aids. In an attempt to help her make sense of this new medical undertone in our lives, I got on Amazon and ordered a dozen children's books that all have some type of medical theme. I got a Little Critter book, where the little critter breaks his arm and goes to the hospital, I got the one where Curious George has an injury, I got one about a sibling that is in the hospital, one about germs and so on. We do not read these daily, but sometimes they get put into the weekly circulation and when they do I just hope that the subject matter makes her feel more comfortable with our lives right now. One of the books has become a favorite and I just have to share. It is called The Invisible Sting. The message of the book is that we are all connected to the ones we love by an invisible sting. We are never alone, should never be scared, and should always find comfort that our stings keep us together even when we may be apart. And for the times that we are apart, and we may miss someone that is not with us, we can tug on our sting and the other person will feel it, and then they can tug back. Originally, I got this book because I spend so much time away from Isla now, that I thought it would be comforting for her to hear that we have a string. However, when Greg is out of town she talks about his string. She talks about all of her cousins stings, and of course little Oakes. She will put her hand over her heart, and make a little whistling sound as she throws her sting to friends and family and calls them by name. It warms my heart to see how loving and connected she is. Just the other day T-Franny was tickling her, Isla was giggling and wiggling around on Tina's lap, but when they both calmed down, Isla brushed her hair out of her eyes, looked and T, and threw her a little sting and made that whistling sound, even though their hearts were inches apart. Then just last night she made that sound as I was closing her bedroom door after tucking her in for the night.

Whenever I look at Oakes' map, I imagine this complex web of invisible sting wrapping and weaving, originating from St. Louis, Missouri in the US and traveling some short distances and then others much farther across seas and over mountains to the other side of the world and it amazes me. We feel your love and prayers, and yes, we feel all of the deep healing breaths that you have sent, and now we hope that you feel us tugging on the little sting that connects us to you. Thank you all for your continued prayers! Much Love, Becky