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Tuesday, July 31, 2012


Sweet baby Rowan passed away early on Sunday morning.

Thank you all for your prayers and well wishes for the Fowler family. I know they are grieving deeply as the reality that they are now a family of four is settling in.

Tugging on our Fowler heart strings to Tulsa and beyond.

Thursday, July 26, 2012

Oakes' Friend, Rowan.

I have a special request from all of you.

Please pray for baby Rowan, his big sister Evelyn and parents Elle & Matt.

We met Rowan and his family in the CICU during the holidays last year, and immediately became friends. Elle and I have laughed together, we have shared details about our kids constantly, we have checked up on each other, consoled each other and numerous times we have cried together. About two weeks ago, Elle shared with me that Rowan who is 7 months old, and has spent most of his life in the hospital, would be going home one last time receiving hospice care.

I am in Tulsa visiting my sister and her family, which is where Rowan's family lives, so I had the privilege of visiting their house this morning. There house was full of peace and love. Evelyn was all smiles, Rowan slept peacefully and Elle and Matt and I have time to chat. I think it was a theraputic visit for everyone.

Elle posted this later on Facebook:

"Today, Rowan rapidly begin to shut down. He has not been awake. He is sleeping and peaceful.
Hospice did come see him.  They believe that he will probably pass within the next 24 hours.
We have lit his candle, along with our candles to burn with the warmth and love that we have for our beautiful son.
If you would, light a candle for him. Let him feel the warmth of all those who love him and wish him well on his journey to the next place."

Please light a candle for Rowan, and send prayers of peace to his family. I'm picturing a powerful Oakesie inspired vortex filling their house. I am picturing Oakes, gym shoes and diaper and a huge toothy grin waiting for his friend. I am picturing a perfect Rowan free from his body while peace and love insulate Evelyn, Elle and Matt while they say good bye to their sweet baby Rowan. 

This picture was taken in March. I photographed Rowan & family on the day they were discharged from SLCH. Rowan wouldn't take his eyes off of his Mom, and Elle could not stop smiling. It is still a beautiful sight!

While Elle and Matt were cleaning out their room before discharge, I was snapping pictures. And this is still a beautiful sight - leads and wires that Rowan once needed were discarded and dropped in a chair. 
In the most simple way, this meant he was free to go.

We love you sweet Rowan.
Smooch Oakes for me. XO


Saturday, July 21, 2012

One year ago today

We had no idea that we would get THE call on this day. We spent the morning in jammies, hanging out, and Isla was excited to share her puzzle with her little brother.

Oakes had only been home for a day and half when we got the call, so here is was 3pm and we were still in our jammies. This was after we got the call, and right before we left for the hospital. 

Once we were admitted we went straight to 7West to wait. This was maybe taken at 6pm right after Dr. Huddleston came in to talk to us about the surgery but before the team left to retrieve the lungs. 

He could not have been any cuter or any sweeter.

And this was at about 3am. Sarah and my Mom arrived and within the hour I carried Oakes down to the OR.

In some ways these images break my heart. Oakes was so small, so sweet and in my eyes, so perfect. But in other ways my heart swells with pride. He is my little warrior baby, stronger than I would have ever guessed and more resilient than anyone I have ever known. This was the beginning of such an important part of his life and his story, and about the time that my perspective changed about what a gift each and every breath we all take really is.

Had to share.

Friday, July 20, 2012

Checking in

Hi friends.
Becky here, just wanting to sort of check in and say hi.

I thought it would have been easier to get on here and post updates, but I have pretty much had zero interest in logging into the blog or even thinking about sharing my thoughts or feelings.

I think since Oakes' death, Greg and myself, maybe Isla too have been sort of floating along. We have been sad, yes, but we have been OK. At times it has surprised me how OK I have felt.

In all of our time in the hospital, and with all of the low points I have wondered what I would do, or how I would react if and when Oakes died. In my mind I automatically thought that first I would be hospitalized myself. That would be a given. And I would be heavily medicated. And other than that, life would pretty much come to a stand still. But that has not been the case. I don't know if it has been shock, or denial, maybe grace, or simply grief, but there was no need for hospitalization or medication, and surprisingly life around me has continued. It has been a surprise but, my heart and my lungs still work. I am alive, and my life is continuing. I still smile at lot, thanks to Isla really. I get hungry, I get tired, the sun comes up and goes down and my days have continued. Greg is working daily, and traveling as usual. Isla is still three years old and needs plenty of help and attention. So in the most simple way, I and we, are OK, life is moving on.

We are OK, but even on the best days, there are tears in our house. Mostly from me, I think. I feel peace for Oakes. I know he is in a better place, and I know he is still with us in spirit. Greg and Isla and I have all dreamt about him and I believe he was visiting all of us, assuring us that he really is just fine.

In the last couple of weeks, that initial feeling of floating along has changed. I don't feel like I am floating, but now I feel like I am thawing. I am just aware everyday that there is just this handful of sadness in my being. I don't have anger or regret, I don't have questions or complaints, I am simply sad. I wish Oakes was with us still. I miss him. I miss him SO much. I miss his smile and those crazy teeth. I miss his sweaty little head. I miss everything about him, but I mostly miss holding him. I would do anything to feel the weight of his body in my arms. Anything. But, since I know that won't happen, I talk to him. I tell him how much I miss him and I ask him to take care of me now.

Saturday at 3pm will be the one year anniversary of the phone call that Oakes would get new lungs. I will never forget that afternoon, or the look on Greg's face when he told me. Then Sunday, July 22nd will be the transplant anniversary. What a huge anniversary for us, and for Oakes, and really for everyone that has cared for him, rooted for him, and has prayed for him. The nine months after the transplant were not perfect, you have read about all of the ups and downs, but they were 9 months with him here. Most of the time I could hold him, Isla could interact with him, we made so many memories in that time, and I have a million beautiful pictures of him that were taken in that time. Those extra 9 months will always be treasured.

I was recently thinking about the conversation that Greg and I had with Dr. Molter, Oakes' ENT who did the surgery to correct Oakes' deformed trachea right after he was born. In our conversation Dr. Molter told us that if Oakes had been born 10 years earlier he would have died from this deformity, but the field had changed so much in the last 10 years that with a slide tracheoplasty, Oakes should live a totally normal life. I remember feeling like we had dodged a bullet (and in hindsight, the first of so many!) and I just cried thinking of all of the babies that had died and the mothers whom had mourned in those 10 years because of a lack of knowledge to save them.

Today, there have only been something like less that 450 pediatric lung transplant in the world. Any day now we should get a call about the finding from Oakes' autopsy, and Greg and I both are literally excited to hear what his team has learned from him and his little organs, especially those miraculous lungs and all of their airways. And we pray that in much less than 10 years, there are babies that will be able to thrive and live amazingly long lives after having had a lung transplant.

So that is the quick update. We are OK, we are thawing, we are sad, but life is moving on. Please continue to pray for us, and especially for Oakes' donor baby and it's family this weekend as they will likely be remembering the death of their sweet little one.

We love you all, 

Some images of our new-kind-of-boring days:

We have visited the Grant's Farm

And Isla was brave enough to have her face painted at the zoo

Isla had plenty of treats with Grandpa Dale when we went to Oklahoma

We have celebrated Great Grandma Ortyl's 90th birthday

We have played dress-up, and have taken walks,

See, we really have been smiling!

There is plenty to smile about. 

We have found hearts everywhere!

We visited the CICU and saw Yvonne.

While we were there we helped to passed out frozen custard from Ted Drew's to the nurses, a treat from Mighty Oakes Heart Foundation & the Rose family. It was AMAZING to be back and see everyone!

We have befriended some super cute Sea Lions.

The ladies have lunched. We had a great lunch with Nurse Ali. Plus there have been numerous theraputic date nights, girls nights out for me, and a few fun dude outings for Greg.

 Plus there has been lots of lazy, slow mornings, laying around and snuggling, just what we all have needed!

...and plenty of finger waves.
XOXO, Toodles!