Hi all. We’ve had a nice and very busy weekend. We didn’t make it up to Milwaukee for a meeting of families affected by 22q11, as I had hoped to, but we did get out there and enjoy the nice weather. I even got a little sunburned.

Ramona has been looking a little off for a few days. Kind of gray at times. Purple hands off and on. Last night she looked especially funky to me so we took her pulse-ox and found her to be reading between 71-80. This is much lower than her usual mid to high 80’s. So, even though we were wiped out from our busy day and even though we had company from out of town, we called the on-call cardiologist to ask his opinion.

Thank God we did not need to take her in right then and her sats were back up to their normal range this morning. But we will be following up with cardiology sometime today. I think maybe all the activity and sunshine just tuckered her out. I also think that the cardiac function she has now is going to be increasingly inadequate to her growing activity level. So as we watch her oxygen levels drifting down, the reality that surgery is a WHEN and not an IF is starting to sink in.

I spent about 10 minutes this morning crying in my car. I’m just stressed and worried and not ready to resume the anxiety and dread that comes along with being at the hospital. I feel we’ve been so blessed to have this long break to “forget” about her heart for awhile. But along with that blessing is the reality that I’m no longer hardened off to the difficulty of her prognosis. I guess it will just be hard and that’s that. I’m telling myself that we owe it to Ramona to go about all of this as bravely as possible.

Anyway, could you please pray? Pray that if she does need surgery sooner than later we will be ready. Please pray that her cath goes well (it’s not until the 25th, but what the heck, you might as well start praying now!). Please pray that I’ll be able to manage my fear and emotions well enough to be a competent caregiver, mother and advocate for Ramona. Please pray that we’ll know when and what to share with Simon about all of this.

Thanks so much. Here are a few shots of the babies out at my mom’s yesterday, we had breakfast to celebrate my birthday. Simon’s wearing his party hat, gearing up for his birthday on Wednesday. Ramona is stuffing her face with a ridiculous amount of bagel.

Love, Jane.

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