11 Months: A Mended Little Heart


Walter is well into 11 months old and officially has his second open heart surgery under his belt. It remains an understatement to say that this little boy absolutely astounds me with his seemingly endless perseverance and energy. He is such an incredibly bright light in our lives.

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**Medical Update**

Not unlike last time, our expectations going into surgery were vastly different than the end result – except this time, the result is (at least for now) for the better.

I have heard surgeons describe Congenital Heart Defects (CHDs) as “snowflakes” – meaning that every variation in each patient is the least bit its own and unexpected.  In Wally’s case of Tetralogy of Fallot, this shows itself in additional anomalies and defects outside of the “Big 4” of a tet:

  1. Small and thickened (stenotic) pulmonary valve and artery
  2. Hypertrophy of the right ventricle (from increased pressure and over-work of the muscle)
  3. Overriding Aorta (anatomical anomaly which will never be corrected)
  4. Large Ventricular Septal Defect (hole between the lower chambers of the heart)

In addition to these, Walter has very small Patent Ductus Arteriosus (an artery that should be closed), an Atrial Septal Defect (hole between the upper chambers of the heart), and multiple Left Anterior Descending Coronary Arteries crossing over, and exiting from the Pulmonary Artery.This little heart is going in A LOT of different directions.

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Yep…
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…back to walking

The plan going into surgery was to essentially “jump” Walter’s pulmonary artery with a conduit in order to avoid his coronaries, and replace his pulmonary valve. (As well as correct the rest of his defects). Instead, what Dr. Starnes was able to do was very carefully, skillfully, and precisely place a Transannular Patch (like a “roof”) on Wally’s Pulmonary Artery in order to make it larger.  Once the surgical team had essentially shaved away the very thickened part of Walter’s right ventricle and pulmonary valve, the doming and restriction to his valve subsided and in Dr. Starnes words, “opened up beautifully”.

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Prior to surgery the area under Walter’s valve had grown so thickened and stenotic, the was almost no blood passing through his valve (total restriction). This is why Walter has his shunt placed in November.

At this point, Walter has been able to keep his own Pulmonary Valve (PV), which is always the best option if functional. We are *hoping* that his valve, though small (somewhere between 55% and 65%) of a normal PV, will be well tolerated by his heart and never have to be replaced. The repair was a success with only mild valve regurgitation (expected) and a tiny leak in the repair of his VSD (well-tolerated).

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With ever advancing technology and Walter’s great outlook, we are hoping he will be spared future open heart surgeries and that any adjustments he may need can be done in the cath lab from this point on. But in all reality, we are just making a goal of no heart surgery for 2016. That sounds pretty good, right? With two already in the past nine months, that seems like an attainable wish for now.

There are no guarantees in life and Walter still has many unknowns ahead. He will always have a CHD, and always have to be closely monitored. Still, this mama can breath a little deeper and sleep a little easier knowing that we have made it to this point. You’re our miracle.

Happy 11 months, sweet boy.

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Home Again


There’s lots to say – but for now all we needed to hear was “home”.

Fever down, pain manageable, Echo and xrays read and cleared…

Wally still has lots of resting, recovering, and relearning to do, but on our way to the comforts of home just 4 days post-op is nothing short of a gift.

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Food Glorious Food


Today Walter was allowed to EAT! Milk, apple juice – it was all yummy, comforting, and exactly what the doctor ordered.

Walt has been recovering beautifully, and is on the fast track to home if all continues this direction.

We had a “hi”, “dada”, Winnie the Pooh sing-a-longs, and very strained clapping. Wally is still in pain, but it is being well managed, and overall it has been a very, very good day.

Walter has officially received all of your hugs because this mama was able to hold and gently snuggle her little boy today. Our “Beloved Ruler of the Army” is charging ahead stronger than ever.

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Like Something the Lord Made


Walter is out of surgery, and everything has gone better by leaps and bounds, than what we imagined was medically possible.

Surgery lasted only about four hours and Dr. Starnes was able to accomplish what others had said could not be done: preserve Walter’s pulmonary valve and complete a full repair without using a conduit. This is HUGE for Walter’s future:

1. With his own valve intact we are cautiously optimistic that Walter will not be needing future planned open heart surgeries, and that his valve will continue to grow (though small) enough that he never needs a valve replacement.

2. With ever improving technology any future adjustments or minor corrections Walter may need will hopefully be able to be done via catheter without having to go on ECMO/bypass and cracking open that adorable chest of his.

3. The patches on Walter’s ASD and VSD (holes) were successfully placed, as was the transannular patch over the pulmonary artery and valve, and his hypertrophied (thickened)right ventricle was thinned. Oh be joyful!

4. He looks AMAZING! Saturating at 100% and warm with beautiful pink color, this guy is looking like 4 days post op at just a few hours.

We’re not out of the woods, but things are really feeling upbeat over here. We knew it was a good day when Walter said goodbye to us before surgery with lots of sloppy, slobbery sweet kisses.

Right now we’re working on getting him off his vent and breathing on his own, chest tubes and pacer wires out, and maintain stability and comfort.

We are still in awe of Dr. Starnes and his team. His finesse, skill, and ingenuity in complicated non-standard situations has truly been guided by the hands of God…this repair is “like something the Lord made”.

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9:30 AM September 3rd


Just got word from Starnes’ Team that surgery is scheduled for 9:30 AM tomorrow. We had pre-op today, and all is running smoothly. Wally’s oxygen sats have dropped to the low 80’s so we’re thrilled that we’re getting this little heart mended sooner rather than later.

We’ll keep you updated as the day progresses tomorrow and appreciate everyone’s continued prayers!

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Overwhelming Gratitude


“Piglet noticed that even though he had a very small heart, it could hold a rather large amount of gratitude.” – A.A. Milne

There are many, many, things Dan and I cannot wait to teach Walter.  But at the forefront of these is a desire that he will be humbled by life’s many gifts, and show sincere gratitude to those people who pray, help, and hold him along the way. This little boy has seen and felt so much love already in his little life, that I look forward to the day when he truly is able to comprehend it’s gravity, and do for others in return.

I’ve had a lot of tears the past few days: ugly, balling, happy, sweet, “I can’t believe you guys” kind of tears.

From the messages, texts, notes, hugs, prayers, calls, and so on…

Thank you.

Thank you.

Thank you.

To my own parents and my in-laws who have rallied around us with support and a fighting spirit – we could not be more grateful to have such beautiful examples of marriage and parenting as we embark on our own journey.

To these guys:

My fellow Stroller Warriors and neighbors: The Whitney Family, Kieffer Family, Cain Family, Tait Family, Krueger Family , McMillan Family, Antoine Family, Reyes Family, and the Richmond Family, who surprised us with a beautiful card, sweet notes, lots of prayers, and unbelievably generous gifts…you have truly moved us beyond words. Thank you for being part of our Marine Corps family here.  I don’t know that we have ever felt quite so much love in one special place.

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Walter’s life angels: (AKA incredible blood donors) Violet Sarosi, Rosalind Albert-Heaney and family, Joslynn Jarrett-Skelton and Family, Benjamin Smyth, Susan Rigamat, and James Nesbitt.  You have given Walter what is in my opinion the most pure and beautiful gift possible.  Blood cannot be merely manufactured and purchased, nor is it always readily available or of the highest quality.  It will never cease to amaze me the lengths at which you have gone to help us, and your gift will never be forgotten.  Knowing that fresh blood of family and friends will keep Walter alive – even while his heart is stopped – gives me insurmountable hope for the future. Thank you. We are forever in your debt.

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