Dear Nova, Wherever you go, I go.

By November 25, 2018Motherhood

We have checked with our Surgeon and Cardiologist and they are happy with the Pulmonary band and with the PDA. We will hopefully go home tomorrow.

We will still have to be on a few meds but Doc is hoping to ween her off them eventually.

The band will get tighter and tighter as Nova grows so we will have to monitor constantly but the Doc says if she is well with the band then he would like to wait a good few months before the open heart surgery… perhaps around a year old, he says she will be much stronger then and will cope better with such a big surgery.

Waiting until a year old, when she can cry and reach for me but I can’t hold her or reason with her, sounds like hell on earth but I’m sure we will find a way to deal with it. We will have too, there is no escaping this fate.

Our stay this week has been tough but we managed. Being in this bustling building makes me wonder, how can so much go on inside one building? All these people, families, patients, nurses, doctors, porters, cleaners, staff, etc. So much joy and so much pain. So much mundane and routine and so many surprises and so much unexpected, just so so much under one roof.

I have met a few amazing moms and dads this week at the hospital and if there is one thing I’ve learned from all our little warriors, heart and other, it’s that you can’t plan anything. Just when you think you have come to terms with one situation, it changes.

One baby was in for a stent and they ended up fixing all four heart problems and now they are done. We thought we were fixing our problem only to find out it was not worth the risk.

Only Nova and her sweet little pumping heart will know when the next op will be and I just have to surrender to the process, surrender to not knowing and try my best to be prepared for any situation. All the while enjoying life and whatever else it throws our way.

With all that being said, I’m so grateful for our journey, it has humbled me and made me so very grateful for what I have, my babies, my husband, my family, my friends.

Dear Nova,
Wherever you go, I go.

Follow Nova’s journey on Instagram.

Amy Portman

About Amy Portman

Mom-preneur at Lullaby Rock Apparel, Mom to big brother Trey and little sister Nova Layn. Follow their journey at @knowing_nova

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