Repite, Por Favor!

Isla had her check up at Children’s this week… and it went really well! Our Doctor said her heart looked NORMAL on the Echo and EKG… yes, you read that right- NORMAL! It was music to our ears! She seems to be getting better and better each time we go. Because we don’t know why she has PH and we can’t tell what the pressures are without doing a heart cath, the plan is to leave her on the meds for now. We will go back again in 3 months and if everything looks good at that time, then we will start decreasing the SubQ meds. Our Doctor thinks it would be best to keep her on the pump through the winter, just to be safe. So, the hope if to have her off the pump by March and then she will continue her oral meds for “a while”. One scary thing is we will have to do another heart cath within 2 weeks of getting her off the pump, which will require her going under anesthesia. We are dreading that, but know it needs to be done. It’s just hard to think about because of what happened last time, but she will be older and stronger by then, so we just have to focus on that.

Isla is still on night time oxygen, so they are going to do a sleep study on her for two nights. One night with oxygen and one night without, to determine if she can come off. We will do that after our beach vacation, so we have rented a concentrator to bring with us on the plane and to have while we are away. That should be an adventure!

We are definitely heading in the right direction, slowly but surely. I leave you with some pictures of Isla waiting for the Doctor and a picture from last weekend of Isla and her adorable cousins!

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The Power of Vulnerability

I normally only do one post a day, but I wanted to share this. I was reading an Oprah magazine and came across an interview with Brene Brown. They referenced Brene’s TED Talk on ‘The Power of Vulnerability‘… so I watched it. What perfect timing considering I am in a very vulnerable stage currently. It helped me accept that it’s okay to be vulnerable right now, it’s actually a good thing. What is interesting is Matt sent me Brene Brown’s ‘Parenting Manifesto’ a couple of months ago which is something we both want to practice as we raise babybug. Funny how it resurfaced a week before we become parents. I’ve posted it below, along with a link to an 8×10 printout.

The Wholehearted Parenting Manifesto
Above all else, I want you to know that you are loved and loveable.

You will learn this from my words and actions—the lessons on love are in how I treat you and how I treat myself.

I want you to engage with the world from a place of worthiness.

You will learn that you are worthy of love, belonging, and joy every time you see me practice self-compassion and embrace my own imperfections.

We will practice courage in our family by showing up, letting ourselves be seen, and honoring vulnerability. We will share our stories of struggle and strength. There will always be room in our home for both. 

We will teach you compassion by practicing compassion with ourselves first; then with each other. We will set and respect boundaries; we will honor hard work, hope, and perseverance. Rest and play will be family values, as well as family practices.

You will learn accountability and respect by watching me make mistakes and make amends, and by watching how I ask for what I need and talk about how I feel.  

I want you to know joy, so together we will practice gratitude. 

I want you to feel joy, so together we will learn how to be vulnerable.

When uncertainty and scarcity visit, you will be able to draw from the spirit that is a part of our everyday life. 

Together we will cry and face fear and grief. I will want to take away your pain, but instead I will sit with you and teach you how to feel it. 

We will laugh and sing and dance and create. We will always have permission to be ourselves with each other. No matter what, you will always belong here.

As you begin your Wholehearted journey, the greatest gift that I can give to you is to live and love with my whole heart and to dare greatly.

I will not teach or love or show you anything perfectly, but I will let you see me, and I will always hold sacred the gift of seeing you. Truly, deeply, seeing you.

http://static.squarespace.com/static/51310ff3e4b0776ccd680f89/t/514211efe4b044b803969e2e/1363284463586/DaringGreatly-ParentingManifesto-light-8×10.pdf