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Friday, December 7, 2012


A quick follow up. 

I had shared the info about these beautiful MOHF ornaments weeks ago on facebook. I got messages from many friends saying they had ordered one or several, so I had guessed they were already on trees or wrapped as gifts. I got this email first thing this morning from Mel, one of Oakes very special nurses, whom I will tell you more about one day soon. For now here is her email....


Last night I went to Bunko in my neighborhood.  We played Bunko and had the annual ornament exchange.  I am sure you can see where this is going.

I, of course brought Oaksies’ ornament and then ensued God's work through baby Oakes.  The whole room (12) was crying when we read aloud the story about Oakes and the ornament. 

The ornament was loved and was not "robbed from the neighbor" the entire evening.  Everyone there wanted Oakes website and ornament website and then one woman who I didn't know spoke up.

She explained how she had a sister that lived for 18 months with congenital heart disease in the late 60's. she was very tearful but so amazed and thankful to hear about your foundation.

I hope this never gets old for you and there is certainly a part of my heart always breaks for you, Greg, and Isla, but I count it a blessing and a privilege to share your beautiful baby and his story with others.

All of you continue to touch so many lives.  Oakes is a force.  He moves about effortlessly on his planet touching people deeply, and YOU are his momma.  You and Greg had a hand in making him...and this Christmas season, he is in full swing work mode.

Love ya!


Ps. Told you the ornaments were gonna sell out ;)


As I have been putting this post together I got a text from Cindy, the creative genius behind the ornaments, and this is what she shared. Amazing, just amazing! 

Cindy: Check this out!
Oakes is so prayed for, loved and missed. He is truly an angel, Becky!

And she forwarded this from Diane, at Bliss Monogramming: We made the Costal Star! Some facts are strewn...but hey....the lady asked if we were featuring any charities with our items....Yeeesss!!....More money for MOHF!!!


Thank you Mel, Cindy and Diane for putting a huge smile on my face today. Thank you for sharing our story, and generating more attention to MOHF and Congenital heart defects....what an amazing Christmas gift to Greg and Isla and myself!

Mighty love!

Thursday, December 6, 2012

Getting ready for Christmas!

Hello friends!

Two things I wanted to share.
First, Thank you all so much for your sweet comments, emails and messages after my last post. It is still moving how touched everyone is by our story and our family.

I wasn't exaggerating that it really took 5 months to complete that post. It was so hard to keep reliving that day as I wrote and edited everything. It was so hard at the end just to edit the post and try to correct grammar, and read through it making sure that it made sense. Anyway, it felt GREAT to share. I had felt like I owed everyone the details of his last day. So many people have been on this journey with us, I thought it would bring some peace to our friends, maybe some closure, and hopefully some inspiration too.

I have been thinking about writing a book, or a few of them. I just need a smidge of time, I don't feel ready yet, but I think about it everyday. I don't know what I should wrote about exactly.....Oakes life, our life with Oakes, the lessons we have learned, kids books.....I am not sure. Any suggestions?

My second reason for posting is that I wanted to plant a little seed in your head. I think most of us are finishing up our holiday shopping, and I have a great suggestion of what you might add to your shopping list.

I have a friend from High school named Cindy. We actually only went to school together for one year but we were the best of friends in that year. After nearly 20 years Cindy and I have reconnected on facebook. She had her first child just weeks apart from Oakes' birth, so in that maternal, hormonal way she has felt very connected to our story, to Oakes' life, and our family. On her own, she partnered with a local story that she loves and they have made the most amazing Mighty Oakes Heart Foundation Christmas ornaments. They made 100 ornaments by hand. They are $20 a piece, and get this, 100% of the proceeds go to MOHF!

Super cute, right? These ornaments would be great for teachers, for family members, for a friend that you know who has been following our story, for a family that has been affected by a congenital heart defect or simply for your own family Christmas tree!

Here is the link to order the ornaments online.

Hugs to all of our friends!
Especially to Cindy and our new friends at Bliss Monogramming,

Wednesday, November 14, 2012

June 6, 2012

Hello friends.

I have been working on this update for months. I have wanted to share this, but it just has not been easy to do. Thank you for being so patient, so warm, so great to our family as we have been navigating these five months without our Oakesie here with us. Please, grab a box of tissue.

Both Greg and I have talked to several people about the day that Oakes died. I think it has been therapeutic to talk about it, but it has also been heartbreaking to say the words and accept that he is really gone.

These are my words.

In the weeks leading up to Oakes death I had shared that he wasn’t doing well. He had bounced from 7West to the CICU, he had several crazy unexplained fevers, his numbers were not very stable and then his right lung was punctured and then it collapsed. After the collapsed lung he had been paralyzed for weeks as they tried to reopen the lung. He had a series or brocs where they were putting surfactant in his lung to try to get it to inflate. While that was going on I was getting daily reports from the attending pulmonologists about moderate improvement, but at the end of the week there really wasn’t significant collective improvement at all. For anyone that had received a lung transplant a collapsed lung would have been a huge problem, but for Oakes a collapsed lung that wouldn’t reopen on top of all of the other issues that he had been battling, this was just too much.

When the surfactant didn’t work, we were, for the first time in a place where we had no other good options. But there was still a glimmer of hope and like always, we desperately held on to that hope.

At the end of the week where the surfactant was repeatedly placed, my youngest sister was getting married out of town. We had bought tickets to attend the wedding months in advance and were planning on going unless something crazy was happening. In hindsight, something crazy was happening, but I think the SLCH staff that as you know, were not only Oakes’ caregivers but also our dear friends, encouraged us to go. They confidently told us they wouldn’t do anything over the weekend. Oakes would be paralyzed, meaning he would be stable. The weekend would be boring. We should go, take Isla, have fun, celebrate, and get away. So we did. We left town on Thursday for the wedding knowing that Oakes was not good, but we were hopeful that a weekend being paralyzed would give him rest, and energy to rally like he always did. On Saturday morning as I was getting my hair done for the wedding, I got a call that Oakes’ status had changed. He was still paralyzed, but his numbers were dropping. He needed more support; more Oxygen and his vent had been turned up. This was a new low for us – paralyzed AND unstable. The attending had decided they should lift the paralytic and see how he responded. I initially pleaded for them to keep him paralyzed, I desperately wanted to be there when he opened his eyes like I always was, I was so scared since he didn’t have a good track record of coming out of paralytic but the attending reminded me that it would likely take him a day or two to wake up and that we should stay and enjoy our time at the wedding. And so we did, we stayed. My sister was a beautiful bride. Their ceremony was touching, the love in the church was palpable, and the reception was a true celebration. But it was hard to keep my thoughts with me. I was standing on the alter holding a bouquet of flowers thinking about Oakes, and smiling taking pictures wondering about his numbers. It was impossible to really relax, but looking back, I so am glad we went. I’m glad I got to be with my family, see my nephews, hug my siblings and parents, dance with Isla and Greg, and meet all of my sister’s amazing friends. I am glad Isla got to go on a little adventure with us. She was in heaven around her cousins, and flying on a plane and hitting the Zoo were just extra perks. I’m glad I had a break from the hospital even if it was more stressful than I had hoped. After the wedding we changed our flights and returned to St. Louis first thing on Sunday.  We dropped our stuff off at home and got Isla settled in, then Greg and I went right to the hospital. Of course we were so anxious to see Oakes, all we wanted to do was to talk to him, to let him know we were there and try to encourage him to open those eyes. We were worried, but still hopeful. On our way up to the hospital we learned that his team was all gathering and we would be having a Care conference that night.  When we got to the room Greg and I did our usual stuff, we talked to Oakes – told him all about the weekend, kissed him all over, wiped him down, and I fussed around the room, gathering his laundry, straightening the blankets on his bed. It was good to see him, I was thrilled to be back, but he didn’t look good. He was puffy and I hated seeing all of the new settings on his machines. And I really hated that we were having a Care conference – at night, on a Sunday. I knew going into the meeting that we would be getting bad news. I kissed Oakes, took a Xanax and bravely walked into that conference room. That evening Greg and I were greeted by I think 16 of Oakes caregivers. Oakes’ surgeon was there, a team from cardiology, a group from pulmonology, a renal team; I think every attending intensivist was there, as well as several therapists and a handful of CICU nurses. It was a meeting I hate to relive. What we were told was that Oakes was in heart failure; kidney failure and they believed that he was in chronic rejection of his lungs. The rejection they suspected was called Bronchiolitis obliterans – which is fatal. There was a lot said at that meeting that I didn’t hear. The sadness that came over me was numbing as I began to process that we were at the end of our fight for Oakes. Letting go of the beautiful, uplifting hope that I had always focused on physically hurt. At one point I just put my head on the table and cried. The nurses were all sitting behind me and I could hear them crying too. Someone reached out and rubbed my back. Someone passed me a box of tissue. I somehow propped myself back up. Dr. Eghtesady, Oakes’ cardiothoracic surgeon did offer some surgical options. I think there were four of them. They were all extreme, and risky. He didn’t know that Oakes would come out of the OR alive for any of them. I remember for one his lungs would have to be collapsed just to get to his heart, and another he would have had to go on ECMO just to start the surgery. At the time he had our attention because it was an option other than letting go, but even then the options seemed like really, really awful options. There was a good amount of talk about redirecting his care – changing his care to hospice care, end of life care – keeping him comfortable, not taking extreme measures to keep him alive, but to honor him and keep him comfortable while he stayed with us. I was just sick with sadness. And writing this just takes me back to that night. There are just so many tears. When we were talking about redirecting his care someone was explaining that we would have a say in how things went, and could kind of lead the decision making process and I remember after the meeting ended I stayed and talked to one of the doctors and just kept saying, “I will never give up, I will never say it is OK to let him go, I will never tell you that I have had enough of him, never.” I did not want to redirect his care, and I know Greg didn’t either. We wanted to fight, we wanted Oakes to rally, and we wanted to beat the odds. We wanted to bring him home and just be a family. That is what we wanted to do.

We didn’t make any decisions in the meeting. Greg had taken notes during the entire thing and after spending lots of time with Oakes that night we went home and talked about everything. We had lots of questions about the surgery options and lots about redirecting his care. While we hung out with Oakes that night he was nonresponsive. The paralytic had been off for well over a day and he wasn’t moving at all. His numbers were not still dropping, but he still required that extra support. He was not rallying.

Greg and I went back to the hospital on Monday morning and met with Dr. Gazit. He sat with us for hours and answered all of our questions. At the end of that meeting we had pretty much decided we would redirect Oakes care but again, we wanted to process everything and think about it. I stayed with Oakes all day Monday as usual. He was really puffy, his cheeks were big, his fingers were swollen, he looked like he would have been uncomfortable if awake but he still wasn’t moving.

Again, on Tuesday Greg and I returned to talk to Dr. Gazit. More questions. We wanted to understand what moving ahead would mean. The one big part about moving forward was that when we redirected his care we could no longer give Oakes paralytic. Ethically that was not an option. The option that we were looking at was if Oakes could not tolerate breathing on his own, then we would basically put him in a comma and then decide when we would let him go. And because Oakes had been on paralytics for so long we knew that this would be a huge obstacle. Of course as soon as the discussion started about redirecting his care, we wanted to know, “how long will we have with him?” We wanted someone to give us an answer. We knew that this was an impossible question, but of course we asked everyone. No one knew, and no one would guess. So, by taking away the option to use paralytic we understood that we would likely say goodbye to Oakes much sooner than later. Not to mention, he still was not moving. Not even a little. Comments were made about this brain function. Had he recently had a brain bleed, or a little stoke? We had no clue. So, no true redirecting of care happened that day either. When we were at home that night I remember just crying and crying and telling Greg, “I just need him to wake up. I need to see his eyes one more time. I need him to see me. And I want to see his smile again.” I was in no way ready to say goodbye and let him go. But, if we were listening to Oakes his tone had changed. He was telling us something new. And more than ever, Greg and I were unified and we were as dedicated as ever to giving our Oakes the best. Somehow we slept that night and I woke up on Wednesday morning to a smiling but tearful Greg. He will have to share the details on his own, but he had a dream about Oakes, where Oakes was healthy and radiating peace. Greg thought it was Oakes reassuring him, that we were doing the right thing. I agreed with Greg’s interpretation of the dream and got out of bed feeling a little peace.  We didn’t know it then, but this was the day that Oakes would die, Wednesday, June 6, 2012. And now, looking back, Greg’s dream was the first of many amazing little moments that were scattered throughout the saddest day of my life. The day unfolded in slow motion. The timing throughout the day, just the way that things naturally progressed and occurred seemed divinely orchestrated. Of course, the day was awful, heartbreaking, literally my worst-case scenario coming true, I did not want Oakes to ever leave us. And so, I was shocked at how I saw beauty in that day. There were moments that were so full, moments that were so completely enormous, so meaningful, so healing. I was losing my baby, I was saying goodbye, but even on that sad day I was getting so much love from that sick, paralyzed little boy. Oakes was dying, yet some of the moments in the day were so full of life I could not help but feel some joy. It must sound crazy, but he was there with us that day, he was loving us right back, he was helping us through the day, and he didn’t leave, he didn’t check out until his heart stopped.

After Greg shared his dream, I was up and moving. Somehow Isla and I got to the hospital about thirty minutes before Greg did. When we got there, Greg’s sister Shani was in the room visiting with Oakes. We didn’t know she would be there, it wasn’t a planned visit from Iowa, but there she was and we were happy to see her. Oakes still wasn’t moving and the paralytic had been off for 5 days now. Isla was all over the place as usual. We were sort of loud just going about our regular routine, when Greg showed up. We were all standing at the foot of Oakes bed catching up when I noticed Oakes’ eyes were open! I could not believe it. In a second we were all at his bedside talking in cutesy high-pitched baby talk. Isla had climbed up right in front of him and she had the sweetest words for him, “Hi, Bubby!” “It is good to see your eyes, I love you Bubby!” His eyes were open for minutes, maybe ten. In the excitement and craziness, Ali, Oakes’ nurse who had been with us for the last two days picked up my camera and started snapping away. What amazing and important images she captured. While we talked Oakes twitched a little, his hands and his feet, he was tracking us and looking at all of us, and even though he didn’t smile, the little dimple on his cheek that would usually indent when he did smiled was going crazy, as if he was trying to smile. It was amazing. It is what I begged God for. I saw those beautiful blue eyes. And he saw all of us. Greg and I took turns rubbing his head, we both told him how much we loved him and Isla did too. He quickly dozed off and Isla climbed in the crib with him. She laid there on her side just watching him, talking quietly to him and sort of stroking his arm and head like she had seen us do so often. He opened his eyes a few times to look at her, but then he stopped opening his eyes. That was the last time we would see his eyes or see that little dimple. I have to believe that was Oakes saying goodbye and telling us that he LOVED us. I have often thought of the phrase, “I love you to death” and he did.

As the excitement over Oakes quieted down, Isla became a little restless so I called my dear friend Ellen and asked if she would come and get Isla, which she gladly did. I walked Isla downstairs and later learned that as soon as we left the room Oakes became very unstable. His numbers started dropping and he required even more support. It was as if he was waiting. He opened his eyes, was saying goodbye and when Isla left he started to really let go. In the past when he would become unstable like this we would have had him reparalyzed, or would have given him a one time dose of paralytic but because everyone knew we were going to redirect his care we didn’t give him the paralytic, he just settled out with a few other meds. Soon after Oakes settled down, my friend Carey stopped by to visit. Carey had visited Oakes while we were away at the wedding so she knew more than anyone else that we were in a bad place. She brought us a beautiful blanket that we could hold Oakes in when he passed and right before she left she got to hold him for a second. Carey had brought us groceries when Oakes was briefly at home well over a year before and I think as a Mom of two little boys she was hesitant to get to close to Oakes as a fragile newborn with all of his tubes and tape, but whenever times would get scary she would always send me the most uplifting emails about how she believed Oakes would come home, and when he did she wanted to sit on our couch and hold him. On that Wednesday, I knew that time would not come, so I had to offer that she hold him then. After Carey left Oakes had another episode where his numbers jumped around. Even though Dr. Gazit was not the attending he had heard about Oakes rough morning and he was all of the sudden in Oakes’ room wanting to help us navigate what was coming. We could give Oakes a bolas of paralytic and see how he responded, we could turn the paralytic on full speed to buy time or we could give him the medication to induce the comma. Greg and I stood on either side of the bed, holding hands over Oakes and talked briefly about what was happening. It was as if we knew what we needed to do, but we were stalling, buying extra minutes, mustering the courage to say the words out loud. We just cried and cried and said very little for a while. But then, for both Greg and I, what we needed to do seemed clear. We had always listened to Oakes. We always wanted to do what was right for him. I had just cried days before assuring his doctor that I would never be ready, and I wasn’t ready, but I knew in my heart that letting Oakes go was the right thing to do. Oakes had done so much for us; he had been so strong for so long, it didn’t seem right to drag out his death. If he wanted to go then we agreed that we would let him. So not only did we decide to put him in a comma that day, but we also decided to remove his trach and remove all support.

And that is what we did, we let Oakes go. Greg and I were together, frightened and nervous on the day Oakes was born. We were so scared about the tough life that our baby might have, and we were afraid that we wouldn’t be able to handle all of the challenges that we faced as his parents. And then there we were 15 months later, together, sad beyond words, our hearts hurting, but somehow there was a little peace in room 9 of the CICU. Peace in knowing that he would be OK. He would be free of that body. He wouldn’t have to fight anymore or be strong for us. He had taught us so much, and lived this crazy, amazing, beautiful, short life. Greg and I both had red eyes and tear-streaked cheeks. We did not want to be there, doing what we were doing, but in the moment, while we were there we both felt something amazing stir within us. Maybe it was shock, and grief and denial. Maybe it was all of that or some of that. I think thought that it was something bigger. I think it was more than our brains and emotions at work. I think it was God, or Mary, or the Universe or maybe even Oakes comforting us, letting us know we were doing the right thing. The hurt was big that day, but the peace was too.

I held Oakes in the blanket that Carey brought. Greg was at Oakes’ head. Oakes trach was removed. Greg and I had our hands on Oakes’ chest and we could feel his heart slow down and then stop. His passing took minutes. It was peaceful. It was sacred.

After Oakes passed we both held him a little more. It was one of the only times in his life that we were able to hold when he wasn’t connected to machines. We gave him one last bath and wrapped him in the green hound’s-tooth blanket that I always used to take monthly pictures of him in. It was the same blanket that I used when photographing Isla during her first year too.

We stayed late into the night. I wanted to clear out his room. I spent hours alone with him, talking to him, listening to music, packing up all of his stuff. Greg’s parents came up to say goodbye. We sat in the garden. We hugged every doctor and nurse we could get our arms around. We thanked everyone. And there were so many people that showed up to hug us and say goodbye to their little friend. People that were not working that day showed up. Dr. Huddleston even came over from Cardinal Glennon in a coat and tie to say goodbye to his friend. The way the staff walked with us, along side of us that entire day was amazing. They not only honored Oakes, but our entire family. With a loaded down car we left St. Louis Children’s Hospital that night. It was a surreal drive home. We picked up Isla from Ellen’s house and then came home, sat on our porch, toasted our amazing Oakes and drank our finest bottle of wine.

And since June 6, 2012, well, life has gone on for us.

We are all still OK. We still have good days, and we still have bad days. The pain hasn’t changed; it is still as deep and as raw tonight as it was months ago. And so far, the huge lesson about moving on has been that we have had to learn to live with the pain, and not wait for it to subside.

There are pictures of Oakes all over our house. We talk about him daily. If you ask Isla, yes, of course, she still has a brother; he is just in heaven now. Greg and I have struggled with the casual innocent question from the cashier at the grocery store, or someone in a restaurant, “do you have kids?” or “how many kids do you have?” The answer is simple, but we both usually feel so uncomfortable answering. But, we are figuring things out day by day.
We have been very busy with MOHF. I have a lot to share, lots of happy stories and uplifting reports and I promise that will not take 5 months to post. I have been pushing myself to complete this post before I did any other posts, so now that this is up, you will hear from me more often.

The last part of Oakes death that I have to share is what we learned from his autopsy. We just got the results maybe 5 weeks ago.  We were so anxious to get one final update on our sweet guy. We believed we had done what was best for him by letting him go, but naturally we both wondered and at times questioned our decision. So, when the results came in we got a call from Dr. Gazit and made plans to meet with him. First, I have to say, that it was great to see our friend Avihu Gazit. He has always taken such good care of our family, and it meant the world to us that he would take time to walk us through the autopsy report. When we sat in his office, there was not a lot of small talk at first, Greg asked right away, “Were there any surprises?” Which Avihu answered, “Yes.” And what they found was that Oakes was much more sick than we even knew. He was in heart failure. His heart was so large, and the muscle was so very thick, much thicker than they could detect from an echo. He was in rejection, and they believed he always was. He was in a form of the Bronchiolitis obliterans that I mentioned earlier. His lung tissue was so abnormal. The smallest airways where gases are exchanged in the lungs were mostly gone. They didn’t even exist. His lungs were so sick that these smaller airways had stopped working and then had basically been reabsorbed by his body. This absolutely explained why his lung weren’t reopening after the puncture. They were dying. They did not have the ability or integrity to respond or reopen like a healthy lung. Finally, his kidneys were also much more sick than they had known. He was in full-blown kidney failure. His kidneys were five times the size that they should have been because they were working so very hard. The beautiful news, the amazing news (which sounds crazy, I know), was that somehow that kids brain was beautiful. There were no signs of brain damage, bleeds or strokes, which for some reason feels really good to me. I guess this part just helps me conclude that his last smile, was really a smile. He really saw us and it all computed. After we went through the really important parts of the autopsy, Avihu who was sitting in front of Greg and I lowered the handful of paperwork that had been in front of him, and slowly shook his head and said very slowly, something like, “I have no idea - how - he lived - as long as he did.”

Which reminds me of something that was said during that last care conference. Dr. Sweet, a pulmonologist and the head of the lung transplant team got my attention that night. The team of doctors had been sharing how sick they thought Oakes was, and someone said then, “I have no idea how your son has done what he has done” but Dr. Sweet had a theory. He leaned forward in his seat, took his glasses off, laid his arms on the table stretched out in our direction, palms down and said something like, “If you leave here tonight hearing anything I want you to really hear this, your son is alive today because of you two. You have given Oakes something amazing to fight for. He is alive today not because of what we have done, but because of what you have done.” Like I mentioned before, I did not hear everything that was said that night, so I am glad Dr. Sweet got my attention and said what he said. I heard Dr. Sweet’s message and I have clung to it. In this awful, gut wrenching experience, of fighting for Oakes, of letting him go, and learning just how sick he way, I hope that we did give Oakes the best medicine, the best therapy, and just every reason to fight that he needed. The love that Greg and I have always had for Oakes is immense. We expressed it to Oakes in different ways and at different times, but we did give him all that we had. We know that Isla did the same, as did all of his family. He was SO LOVED, and I really do believe that he knew it and felt it.

Thank YOU for loving Oakes, for loving us, and for supporting us. Oakes thrived because he knew our love. And I could easily spend a day with Oakes, completely loving on him because I had the best support.  I knew Isla was in great hands; she was with Grandma having a ball, at school with her friends or playing with Cate. I knew someone was bringing us dinner or stocking our fridge, I knew someone was organizing a fundraiser, and someone was leaving me a sweet voicemail or shipping us a care package. I knew my Mom would be back in town in just a week or two. I knew that heartstrings were taking over his room, and that his vortex was epic. I knew masses were being said in his name, and our prayer warriors were going to mass for him daily. I knew rosaries were being prayed and entire convents were lifting Oakes up. We could not have done this without you, and these words seem to simple but thank you, thank you,
                                                    t h a n k   y o u!

 Shani visiting in the morning.

He opened his eyes.

Oakes looking at us.

Sweet Isla P.

Carey + Oakes

Our sweet, sweet Oakes Lee Ortyl, the mightiest boy ever, whom we will always LOVE.

Thursday, September 27, 2012

Mighty Oakes Heart Foundation Upcoming Events

Good evening friends and family.  Quick update and reminder on two fun MOHF events that are right around the corner.


1.      Dewey’s Pizza – Pizza School Benefitting Mighty Oakes Heart Foundation – this Sunday, September 30th.

a.       We haven’t advertised this much as we thought it would sell out quickly, but it still had 15-20 openings as of today.

b.      This is a chance to go “behind the glass” at the Webster Groves Dewey’s Pizza at 122 E. Lockwood Ave.

c.       Although there are 30-minute sessions starting at 11am and running through 2pm, most of the openings are around the 1pm, 1:30pm and 2pm sessions.

d.      Cost is just $25 per person and will include a pizza-making tutorial from Dewey’s finest back in the kitchen and then you’ll get to eat your masterpiece afterwards.  Kids will LOVE it.


2.      Inaugural Mighty Oakes Heart Foundation 5K Run/1K Fun Run – Saturday, October 6th.

a.       With well over 200 registered runners and walkers as of last week and several corporate sponsors on board, this event is already a huge success!

b.      Although it’s too late to be a sponsor, feel free to come out and join us for a 5k run or a 1k walk. 

c.       Event will be held at LaSalle Springs Middle School at 3300 Hwy 109 in Wildwood, MO starting with an 8:30am registration and 9am Fun Run start followed by 5k Run.

d.      Cost is just $30 per adult or $20 per child.

e.      You can register online via our website ( or just show up the day of the event, although we may not have extra shirts available since we placed the orders for those last week.


So a couple of fun ways to spend time with your family and help other, less fortunate families while you’re at it.  Thanks to everyone for supporting these events and we can’t wait to see you at both of them!  Stay tuned for more from MOHF through the end of the year.  Most excited to tell you all about the families we have helped this year. 


Love to you all,

Greg, Becky, Isla & Mighty Oakes

Monday, September 10, 2012

Mighty Oakes Heart Foundation 5K

Friends and family - this is a very quick note asking for your help in pulling off a successful fundraiser that is upcoming very soon which most of you know about from previous emails or via Facebook. The inaugural Mighty Oakes Heart Foundation 5K/1 Mile Fun Run will be taking place Saturday, October 6th in Wildwood, Missouri.

Although we have lots of folks signing up for the event, we could still use many more participants, either live here in St. Louis or remote from wherever you may be.

We have (finally) set up an online registration site on our main website to make it easier for everyone to register. If you cannot make it, we would be honored by a donation to the foundation or a pledge based on a certain run time. For instance, I am (allegedly) training for this event. I have not really run at all since Oakes was diagnosed in utero, which dates back two years ago next month. But I'll be participating and have had a couple friends donate based on how many kilometers I actually make it. To be clear, I will make it 5K, but it won't be easy, so we'll see how that goes.

In any event, we are still looking for a couple corporate sponsors to help off-set some of the costs of the event, so please email me at if you are interested in being a corporate sponsor and I can give you more details.

We hope we will see you in a few weeks sweating, running, walking, pushing strollers and helping us help other families dealing with congenital heart defects. We have been helping many families behind the scenes and it is a blessing from all of you that we are able to help so many families dealing with this life-altering diagnosis.

Here is the online registration link (if the link does not work, you can find info via our website at<>

Thanks, as always, for your continued support of MOHF.


Greg, Becky, Isla & Oakes

5K Online Registration!

If your registration form is lost in a pile of paper just waiting to be filled out and mailed in, forget about it. We have a last minute online registration form! The deadline is Friday, but go ahead and register now!

Becky & Ortyls from the beach

Friday, August 31, 2012

Wrapping up the summer

Hi Friends!

I woke up this morning thinking about the blog and the fact that I have posted so very little recently, so I thought I would just take a minute and say hello and give you a quick update.

We are still doing OK. The summer has sort of dragged on, but in a good way. We have taken some short road trips, but for the most part our days have been spent at the neighborhood pool, playing with friends, doing arts and crafts projects, going on nature walks, going on walks for ice cream, really, just nice easy summer activities.

We talk about Oakes daily. Isla brings him up often. She has told us that she has a pretend Oakesie and he plays with us daily. Truthfully, pretend Oakesie has been playing with us, riding in the car with us, and snuggling at bedtime with us for over a year now. It has always been sweet and comforting, but now I hang on to every word in her little Oakesie updates. He has taken her to heaven at night, he rides our Yellow Lab, Ashby, he will not put on a seat belt in the car, he can pee in the potty, Isla imitates a silly dance that he does and just recently he did dumped sand in the living room although I thought it was Isla! We all miss him so very much, but we all feel him around us, which feels like an amazing gift.

I just walked Isla up to school for her first day. It is rainy in St. Louis today so we had a fun, wet walk with our umbrellas. I am excited to get back into a routine with that little lady, and am more excited to have some time by myself. It has been years since that has happened, but I think I am ready for a little Becky time.

One project that I have been working on is the MOHF run coming up on October 6th here is St. Louis. It should be an amazing event. I hope to walk the 1mile course with Isla in between my volunteer duties and Greg is training for the 5K. Will we see you there? We have heard from a lot of people that are planning on coming, but we have not gotten registration forms from everyone yet, and the deadline to register is coming up. If you want a fancy dry-fit shirt then you have to register by September 14th. Unfortunately, we won't have extra shirts for walk up participants on the day of the race. If you plan on attending, please send us your registration!

I have taken some great pictures this summer and will start sharing some of the best. Here are a few for now.

Hugs to all of you,

We are always looking for hearts on our nature walks and this is one of my favorites. An imperfect heart is still a beautiful heart. 

Little fish Isla, swimming underwater!

Walking to school for a play day last week.

Isla has a trained eye for heart rocks. 

 Isla and her new heart rock. 

A heart leaf right outside of her school. 

Our Oak trees have been raining little baby acorns all summer long. It is likely because of the crazy heat that we have had and lack of rain, or maybe it is a sign from Oakes. Either way, we have loved finding them!

Friday, August 17, 2012

Registration form

It was just brought to my attention that the registration form for the run wasn't working, so sorry, I think this should do it....

Registration forms have been making their way to the organizers, as well as donations and sponsors! It is going ot be one AMAZING event!

XO, Becky

Monday, August 6, 2012

Mighty Oakes Heart Foundation 5K Run

Friends and family – hope you are all well.  Unbelievably, today is the two month anniversary of our Oakes passing away.  We are doing “okay” I guess, but we have our moments where the emotions are overwhelming.  We just miss that little turkey so much and we still cannot believe he is gone.  If we hear the right song or see the right picture or think the right thought, we immediately turn into a big sobbing mess.  For instance, today, I noticed that Becky had his little helmet in our closet.  It was the helmet he wore for months to help re-shape his head because of all of the time he spent in bed.  It was chilling to hold that little helmet in my hands and know there is no Oakesie to put it on.  The emotions were just gushing from that helmet.  I could see his cute little face and chubby cheeks squeezed into the helmet and his wispy hair sticking up through the top.  Yes, we miss him.  Life goes on and his legacy remains….which leads me to this email. 


Our friends, the Weckherlin Family and Gabris Family have organized a 5k to raise money for the foundation.  I am, somehow, someway going to run in it.  But we need your help on two fronts.  First, we need RUNNERS.  Second, we need SPONSORS.  Please read the sweet letter they put together and if you can’t run, come on our and walk with us and please forward to anyone who might be interested. I have attached the Registration Form and the Sponsor Letter.  We hope to see all of your healthy selves there!  We appreciate any help you can give us as we strive to keep momentum with the foundation.  Thank you and we love you all!



Dear Friend,


Oakes Lee Ortyl, the inspiration and driving force behind the Mighty Oakes Heart Foundation (MOHF), passed to Heaven on the evening of June 6, 2012. While he is no longer physically here, his strength, courage and passionate love are alive and well, in the form of the foundation named in his honor.


The mission of the MOHF is to financially assist families dealing with the crushing reality of congenital heart defects. In addition, funds also allow the foundation to express gratitude to the medical staff working in the CICU at St. Louis Children's Hospital and to remain connected to the important work they are doing in our community.


This fall, the foundation will be sponsoring a very special and important event. On Saturday, Oct. 6, there will be a 5K race held in Wildwood, MO. We are pulling our team together to create a fun, family event and to honor Oakes, as well as the many others who have been impacted by congenital heart defects. The Ortyl family was gracious enough to share the huge lessons they learned from Oakes: we are all connected, and taking care of each other is what life is all about.


We are asking you to consider getting involved with this event by making a monetary donation to the MOHF. The team of organizers hopes to bring out loads of people for a day of stretching, deep breaths, and heart pumping exercise. Promoting heart and lung health is a natural fit for MOHF, and our hope is to raise a substantial amount of money that will better enable the MOHF to spread its vision and purpose and carry out its mission.


As an established 501(c)(3) organization, your donation is 100% tax deductible. Any amount you are to give will graciously be accepted, but the following perks will be given to those sponsoring at the corporate level:

·         Company logo on our corporate sponsor banner at the finish line: $100.

·         Company logo on the banner plus 5 entries to the event: $250.

·         Company logo on the banner, 5 entries to the event, and your logo on the back of race shirts: $500. (This level is limited to 20 sponsors, and for ordering purposes, it must be secured by September 14th.)

·         Company logo on the banner, 5 entries to the event, and your logo on the either the right or left sleeve of race shirts: $1,000. (This level is limited to 2 sponsors and must be secured by September 14th).


We are also in search of other types of donations, such as snacks, fruit and bottled water.


Please review the attached flyer, which details the 5K race specifics. The Mighty Oakes Heart Foundation and the Ortyl family sincerely appreciate your consideration in supporting their charitable organization. If you are interested in becoming a corporate sponsor or have additional questions, please contact us via the established email:


Monetary donations can be submitted to: MOHF 5K Race, c/o Adam & Suzanne Gabris, 2213 Glencoe Summit Court, Wildwood, MO 63011. Checks can be made payable to: Mighty Oakes Heart Foundation.


The Mighty Oakes Heart Foundation

Nicole Weckherlin and Suzanne Gabris, MOHF 5K Co-Chairs