ADAPT AND OVERCOME


As it becomes ever more clear that life isn’t perfect, and indeed Wally’s heart isn’t, my approach has always been to adapt and overcome. Our most recent appointment with the cardiologist threw us a curveball. Granted it was one we could see from home plate, but, a curveball, nonetheless. While Wally’s overall growth has been right on track (3 lbs, 10 ounces at 31 weeks), and measuring a week ahead in size, his heart is growing a little less perfectly than we had initially assessed. 

We knew that Wally’s Pulmonary Artery was small, but it has been lagging behind more significantly than before. The need for immediate newborn surgery now grows more likely. According to our cardiologist, “it’s on the fence” as to which surgery will be necessary (newborn vs. 4-8 weeks post birth). In the world of hearts, especially baby ones, millimeters mean miles – so our next months appointment will prove especially vital in assessing any improvement. Ultimately, Walter’s newborn echocardiogram after birth will be the most telling. From those images our cardiologist and thoracic surgeon will make their decision. So for now, we’re touch and go. The expectation for October is murky, but our anticipation for Wally’s arrival riddles us with excitement more and more each day. We’ll hope for sun, but plan for showers (and just make sure to pack an umbrella in the hospital bag).

In the next week or so, my OB will be looking to schedule the official induction date – which is happy news! Coordination will run much smoother when all the moving parts can be alerted and ready ahead of time. Plus, with family across the country, it helps me make sure travel allows us to get some extra support in place – especially with the likelihood of an immediate surgery. 

Plans change and then they change again. I don’t doubt that the shaky outline of how I imagine Wally’s birth progressing will be far different from reality, but, we can always prepare. Up until this point I had been very set on wanting an epidural. Now, knowing that Wally will likely be taken from delivery, straight to the NICU, and then transported north to DC Children’s Hospital, with me still confined at Mary Washington waiting to get discharged – I want as much control over my body as possible. With his more serious condition, holding and cuddling with Walter after he’s born becomes more unlikely. In fact, my first chance to really see him would be in the NICU, meaning I have to be able to get out of bed, scrub down, and visit him. An epidural won’t allow me that flexibility soon after birth, by which time Walter and Dan could already be on their transport up to DC.

The thought of not seeing my little boy until after undergoing open heart surgery a day or two after he is born rattles me. It is already likely we will be robbed of bonding time immediately after birth (skin to skin, first feeding, and first cuddles), adding separation from my number one support, Dan, and new little man, Wally, for a day or more seems to only heighten our obstacles.

Because of this, we’ll be exploring some other options that may help us logistically. Delivery in DC is a possibility, though it doesn’t truly solve the separation problem – just makes our separation geographically closer. Children’s Hospital of Philadelphia remains the only hospital in the country able to both facilitate delivery (as a part of their Special Delivery Unit) and perform Wally’s full repair, just steps away from where he is delivered. My charge for the next week consists of finding how soon I can arrange a consultation with the Fetal Heart Program at CHOP, and subsequently determine the best option for our little family. Semper Fi!

Dan and me a few weeks ago!
Dan and me a few weeks ago!
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4 thoughts on “ADAPT AND OVERCOME

  1. Semper Fi! Little Walter…we love you! We are here fighting with you and for you. God, please guide the decisions that Walter’s loving parents must make. Help us all to be the very best that we can be. We know that life is not perfect. Sending our love…Granny and Grandpa. HAZZAH!!!!!!!!!!!!!!!

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  2. Frances-
    Thank you for your informative update on Wally. We are praying for God’s wisdom as you and Dan move forward in this journey.
    I have to tell you that your writing and communication style is very beautiful and compelling! While I know this trial is at present seemingly monumental, your ability to communicate your journey is heartfelt, yet hopeful! I believe God has gifted you to one day share your story with others who may be experiencing similar situations( One day when your lives return to some level of normalcy)
    Again, thank you for humbly opening your heart to us!
    God’s grace is sufficient!
    Lisa and Roger Harris

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