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Wednesday, January 30, 2013

Something else to consider.


I am always thinking about helping others in terms of congenital heart defects, the Mighty Oakes Heart Foundation, and the charities that have touched my life and family recently. But I easily see need elsewhere when I learn about new (to me) charities like this.

http://www.heididrexlerphotography.com/a-way-we-can-help/

Good work, Heidi Drexler!


Saturday, January 26, 2013

One Mighty Requests.


Please pray for my step-mother, Jan Christine. Jan was diagnosed with Breast cancer right before Thanksgiving. She has an agressive form of cancer, but is in the early stages of fighting hard to kicks its uninvited butt. She has been though two rounds of chemo, and will have her third round on Monday afternoon. After four rounds, she will have a lumpectomy and then radiation.

I have not been able to let her diagnosis sink in fully, it feels like way to much for her and my family to face right now. Jan's entire career has been in nursing. She has given herself to caring for others who needed help so badly. We have been praying nightly and daily for her healing. Isla has been focusing her prayers on Gramma getting her hair back. I know Gramma appreciates all of our prayers right now!


We love you Gramma Jan, and are praying that you heal completely. We are sending mighty heart strings your way, and know that our community of friends will be doing the same! XO




Dad & Jan when they came to visit after Oakes' transplant



Isla and I were playing with Oakes, he was smiling and batting at his toys...



....but Gramma Jan stood at the end of his bed, eyes locked on Oakes and just prayed and prayed.


video

And here is Grampa Bill and Gramma Jan showing Isla how fun dry ice can be!
Makes me smile seeing Isla so small and sweet, and so comfortable around her adoring grandparents.


Tuesday, January 22, 2013

Our Mighty List.



A couple weeks ago I got an email from one of Oakes' girlfriends, Elizabeth. Elizabeth was Oakes' Speech therapist. She was the one that initially sent us home with fancy bottles for him. She later conducted swallow studies and then helped me feed Oakes bananas and pears and carrots. Elizabeth was not only a huge cheerleader for Oakes, but she was always a welcomed, smiling friend to me.


(Of course Oakes loved Elizabeth, she never had needles or things that went "ouch", she came with milk, and food to play with!)

(Trying out carrots!)

(And then sweet potatoes!)

Since Oakes left us this past summer, Elizabeth and I have stayed in touch. She hosted her own fundraiser for MOHF this fall with some of her amazing family and friends, and she just recently reached out to me and shared that she is trying to get a donation for MOHF but needed a list of some of the good work that MOHF has been up to in order to sell MOHF. 

I had been meaning to do this.

It was amazing to compile the list and see all of our work summarized in black and white. I thought so many of you would appreciate this list too. While you are reading the list, I just want to point out that each little bullet point has a rich and enormous story behind it. Or even several stories. In most cases each item represents a very sick baby and a family or families that were desperate, heart broken, overwhelmed, working hard to just get through the day, and because of the donations that we have received from all of you, we were able to help these families. 

Here is our Mighty List:

-Providing families with gas cards
-Providing families with gift cards to stores like Wal-Mart and Target for essentials
-Providing families with gift cards to restaurants and coffee shops
-Delivering meals to families at the hospital and to their homes
-Delivering care packages to families in this hospital
-Buying birthday gifts and holiday gifts for patients, siblings and parents
-Paying for hotel rooms of traveling families
-Paying for Ronald McDonald bills
-Paying utility bills
-Making mortgage payments
-Paying for moving expenses of one mighty family as they moved hours away to a city that could offer better medical care for their sick child
-Pampering Moms that are usually standing vigil at a bedside by sending them to lunch, for a haircut or massage
-Commissioning a jewelry designer to make custom fingerprint jewelry of children who do not have much time left.  A priceless treasure for any parent.
-Providing mini photo sessions with baby and family. Again, something that will last forever.
-We recently found a donor who passed along a Scottish harp to one of the chaplains at SLCH so she could sit in the NICU and calm everyone with harp music (Thank you, Rowan!)
-We have helped other SLCH families in organizing their own fund-raising efforts
-We supported Camp Rhythm this past summer, a local camp for kids with CHD. A place where everyone in the pool has a long vertical scar on their chest.
-We have just started supporting CHD research that his happening here in Saint Louis.

....and if you were at the auction in 2011 and you held your paddle high at the end of the night to only go home with a lighter pocketbook and smile knowing that you contributed to something very special, I think you will appreciate this.

-We have formed a "Spoil the Nurses" committee. On the 10th of every month volunteers have brought treats to the nurses and staff that take care of these special CICU kids. I believe we have been doing this for 10 months now.
-It has taken dozens of meetings, a ridiculous amount of emails, many sample chairs delivered to and from the CICU, several rounds of votes from those Moms standing vigil and staff, but we have 9 beautiful and very comfortable tall stools on order for the CICU. Each one will have a little MOHF logo on it. 
-We have supplied the unit with some educational and developmental toys for patients, with even more to deliver over time.

Along with the list I also have to mention how therapeutic and healing it has been to be able to help families so similar to our. More than once, my day has been turned upside down when I have gotten a call from a Social worker or nurse asking for help. It has been amazing to say "Yes, we can help!" Each time, I think of the friends and family that have entrusted us with their money to do the right thing and help these families.  And each time I have wondered where Oakes fit into this string of events, and if he had anything to do with bringing this family to us. 

And of course, I have to confirm that not only have we delivered these things, and paid these bills, but I KNOW it has been more than that. We are giving other families the priceless gift of HOPE and showing them the power of LOVE. It has been happening. We have been apart of this beautiful circle of event - someone asks for help, we say, "yes", they say, "thank you", we say, "you're welcome" and then it is quiet again until someone asks for help. Honestly though, I think families have been blown away by the foundation's story and by what the foundation has been able to do.

I will say goodbye now, and end with parts of messages from a thankful family that we helped in the Fall. I think every MOHF supporter will appreciate this. This family lost a newborn son to an undetected CHD years ago. Their next child was also born with a CHD and needed emergent care. The family's child was at SLCH for 6 months. When they took their precious child home they were almost 6 months behind on their bills and were about to lose their home. (Their child is thriving at home today, awaiting another surgery)

  • Becky: We are putting a check in the mail tomorrow. Hopefully this will help to get you guys on your feet, and let you save up a bit going into the new year! Hope you are smiling!

    Heart Mom: Actually, I'm crying! Thank you so very very very much! I have nothing to say!

    Becky: Sleep well tonight. We spoke to several people at the hospital about your family, just doing our research and you are all very loved and respected by the SLCH staff. Mighty Oakes Heart Foundation is honored to help you out. Huge heart hugs to you!

    Heart Mom: Thanks so very very very much! As we too love the staff at SLCH! I am very grateful to have received help from MOHF! I hope our sons have found each other in heaven and have become quite the good friends! I really have no idea what to say to you! VERY VERY BIG HEART HUGS TO YOU AND FOR EVERYONE INVOLVED WITH MOHF! 

    And later that day from Heart Dad: Becky this is T, R's father. I told Dr. Eghtesady once that I didn't know how to thank him for what he did for R. Today I need to say the same to you and the Mighty Oakes Heart Foundation. Since we came home I have worked and tried so very hard to get my family out of the bind we were in due to R's hospital stay. To me a simple thank you cannot express my feelings but in the end thank you is all I can say. God bless you your family and The Mighty Oakes Heart Foundation. Again thank you for your help and love.


Tuesday, January 15, 2013

My letter to incoming fellows at St. Louis Children's Hospital


Several months after Oakes died, I was talking to my friend Dr. Caroline Lee and she asked me to write a letter to incoming fellows at SLCH to give them advise on what they need to know about beginning their fellowships in the Heart Center. She explained to me that she had asked several of her collages at the hospital to also write these letters. She was going to be giving a presentation to the incoming fellows and was compiling advise to share with them. When she told me which other doctors would be contributing I was absolutely intimidated, but I felt very confident that I could write from my heart and offer a very special perspective. 

I thought about this letter for a couple of weeks and then when I sat down to write it, it just poured out of me. I wanted to share this because, well, it comes from my heart, it speaks to where my head was two months after Oakes passed and where it still is. The overall message is still powerful to me. My goal during most of Oakes' life was to live with him, to carry on with my family the best I could, and today in the midst of this yucky grief, I am still striving for the same goal. 

Dr. Lee shared with me that she read my letter last as her closing words to the fellows. My letter was later published in the SLCH newsletter for staff and employees to read. I hope it inspired at least one student, and impacts at least one family. I hope it will inspire you too. 

Advise from Oakes' Mom:

I am a Mom. A worried, scared, emotional, overwhelmed Mom. Not only is this unit foreign to me, it is THE scariest place I have ever been. Please meet my son. He is not just a chart. He is the little bundle of cuteness in this hospital crib. He is my life, my heart, and my love. Please come in and look at him, and (after you foam in) please feel free to touch him. He is not just numbers on a monitor. He is my baby. If you are up for it, please smile at him and me. If I ramble on and on to you and ask you impossible questions that you don't have answers for, so just tell me that. It is refreshing to know that not everyone in the unit knows everything! After we talk about my son it's OK to linger a minute and ask me how I am doing today or offer some nicety. More than likely I am freaking out, full of anxiety, a hot mess and stressed in a way that I didn't know was possible. Being friendly towards me is welcomed. I may not be a brilliant doctor, but I might be an expert on my kid, so please listen to me when I feel the need to chime in. Ask me questions and ask me for my opinion too.

I imagine that one comes into this profession to not just 'help people' but to help some of the smallest and most vulnerable people. For this, I admire you. I admire your interest in and dedication to these sick little people, but I challenge you to help more than the patient that has been admitted. As a Mom that has spent nearly fifteen consecutive months in the Cardiac Intensive Care Unit at St. Louis Children’s Hospital, I am pleading with you to help give admitted families a better life while they are here. This may be by extending the life of each patient, but I have to stress that increasing the quality of each day spent in the unit is what will comfort parents and patients maybe as much or more than the news of good test results. While I was here I understood that my baby was very sick and his heart had complex defects, and I respected that moving him too much or providing too much stimulation wasn't always in his best interest. However, very often, quality time with Oakes was great medicine for my little man and myself. Be assured when I looked into my son's crib I saw perfection, he was my sweet, little baby. My goal was always to get him home, and as soon as possible. But while we waited to get him there, we wanted to continue to LIVE within the unit. I wanted to hold him as much as possible, I wanted to snuggle with him and I wanted to nurse him. I want to do normal things with him – dress him, bathe him, read books to him and see him interact with his sister and Papa. I wanted him to hit milestones no matter how delayed, and I wanted to make as many positive memories with him as I possibly could. Life can be very short in the Cardiac Intensive Care Unit, so please help families live the best lives that they can. This may be as simple as sharing a smile or being friendly, showing interest or concern in a family, suggesting they leave the hospital for a little bit to take a break or to go home to sleep for the night. It may be advocating for normal family interactions or special activities, or it may be simply reaching out to a social workers, therapists, or child life specialists when you can sense a need from a family.

I am Oakes’ Mom. I have been worried, scared, emotional and overwhelmed. After those fifteen months Oakes left the Cardiac Intensive Care Unit, he left this life and moved on. His passing was not that long ago, but already the memories that are the strongest are not loud memories of who delivered bad news in a good way, or how an emergency was handled, what numbers the monitors displayed or other medical details. What stands out far beyond anything else and what I was able to bring home with me are amazing quiet memories of normal moments – wearing a onsie, sitting up, eating applesauce, falling asleep in my arms, smiles at a big sister, flirtations with a special nurse, cooing at a grandma. I am so thankful that we were given moments that bonded us to Oakes, moments that made our lives feel normal and moments that reminded us that Oakes was normal too. He wasn’t just Oakes, the sick baby in room nine.  He was our son – sweet, happy, perfect, Mighty Oakes.

I am thankful for those moments and I am thankful for the amazing staff that helped to make those moments happen.

LIke I mentioned, I admire you and I pretty much love you for the work that you are about to begin helping children and their families. May you all be mighty.

Sincerely,
Becky Ortyl

Monday, January 7, 2013

A few minor details

So now that the date is saved, just a quick correction and insights to share.

To start, this deal with ACHA and CHF was officially agreed upon last Friday. We knew it was in the works before then, but this weekend has been excitingly crazy with emails and messages flying back and forth between the organizers. The whole time I have been trying to soak it all up and understand the event and our role in it.

How the event really works is that everyone participating in the Busch stadium event has committed to selling tickets for the game. This is why I asked that you buy them through us. Together we need to sell 750 tickets. I think this is very doable. MOHF will also get a portion of the tickets that we sell.

We will be given a bundle of tickets mostly in the right field upper deck and lower deck. The tickets may skip numbers here and there so it will be our job to sort through them and sell them all off. I was incorrect in saying they would be $30, I was corrected today and told they will be closer to $40 but we won't know exactly for several more weeks. Significant difference, I apologize, but I hope I don't lose anyone because of this.

Once the Cardinals print the tickets we will pick them up, sort then, and then begin to sell them and distribute them. We are going to try to make this simple and set up sales online, so that once a payment is made we can mail you your tickets. And I am desperate to streamline Tshirt sales (Of course, fancy red MOHF shirts are in the works, and we are looking into a special "Oakes" jersey option too), my dream is that they could be pre-ordered online and payed for with a ticket order. It is likely that tickets will not be printed until the end of February or early March, so hang in there and just get the event on your calender, please.

Thank you all so much! It was so much fun to share such exciting news with you again, and we LOVED getting all of the joyful messages from everyone today!

XO, Becky


Isla last year, my other super cute Ortyl baby, Cardinals fan!

SAVE THE DATE

Hello friends and family, and Happy New Year!

I am SO excited that my first post in 2013 is to share with you that The Mighty Oakes Heart Foundation has been asked to participate in this years Congenital Heart Defect Awareness Night at Busch stadium here in St. Louis.

To be invited to participate in such a large public event like this, as such a young foundation feels amazing. This event is hosted by two enormous, established, national organizations, so as you can imagine we are excited to be teaming up with both The Children's Heart Foundation (Their main mission in to fund research for CHD's) and the Adult Congenital Heart Association (who offers support to adults whom have grown up living with and battling their Congenital Heart Defects.) Not to mentions, having The Saint Louis Cardinals share their house with us has redbird feathers spraying out of our ears!

But there is MORE.

Sit down. Take a deep breath. And just imagine....

A packed house in Busch stadium. 46,000 of our closest friends. A cool May evening. A beautiful pinkish blue sunset over 3rd base.  Excitement in the air as we prepare to crush the Milwaukee Brewers. MOHF fans everywhere. And then you hear the announcer introduce....

        Greg Ortyl, as he walks out to the mound to throw the first pitch of the night!!!

YES!! That is right. Greg was asked, in honor of Oakes and all children lost to Congenital Heart Defects, to throw out the first pitch of the game.

Ok, now stand up, and go crazy, folks, go crazy!

More details to come, but for now, please mark your calenders for Saturday May 18th. This will be an evening game. Please do not rush to the Cards website to buy tickets on your own, we ask that you buy them through us. We will have a bundle of tickets to sell for $30 a ticket. If you already know that you want tickets, please message me and I will add your name to our order list. (info@mightyoakes.org). That is all we know now, but will share more details as soon as possible.

So very often something will catch my attention and I will be comforted by the thought, "That had to have been Oakes." Sometimes I feel a little more confident in identifying Oakes magic than other times. This, I have no doubt, is ALL Oakes. I could not imagine a bigger or better gift that he could give to his family and friends, especially his Papa.

We have a bagillion images of Oakes, so many of the good ones I have shared with you already, but I had to include some of these with this post. This was last April. Oakes had been in 7West for weeks and we were regularly going to the garden for therapy. On this day we dressed Oakes in all of his little Cards gear, and Greg met us in the garden with all of his gear on. In the beginning of our time outside Oakes was awake and alert, but within maybe twenty minutes he was pooped and asleep in my arms. I am so grateful we had this time together, the three of us. And it is a bonus that Greg and Oakes were dressed in their Cards gear!

Getting ready to get in his stroller to go outside. I never saw people hold him like this and he just looked to big.
In his stroller headed through the halls. Mask on to keep germs away. 
Smiling at Momma, before getting out of the stroller!











Therapy, toys & smiles all around!




Smiling at Papa, too!
We were all just content.
GO CARDS!!

Sleepy Oakes, happy parents. 

No doubt, he felt the LOVE.




More details soon!
Looks like 2013 will be a happy New Year after all!
Mighty Love,
Becky