Mackenzie: Son of Kenneth (not sure how this fits my girl, but oh well) The name fits her, I guess.
Carson: Christian (similar to Christopher in name) Interesting, huh?
William: Strong willed Warrior. Could not have said it better myself
MY FAVORITE PIC TO DATE!!!
It has been a little while since I posted much of an update on our precious boy. William remains in the Pediatric Intensive Care Unit at Children's Mercy. It has been a long 4 months and 1 1/2 weeks! But, Will remains a strong little man. He continues to fight an uphill battle. Yesterday, Chris and I met Cardiologist #10 of 15. And, she reinforced how rare and serious his condition is to begin with and how seriously ill William is as a result of TAPVR with pulmonary vein stenosis. Many (of the few, few babies) born with his defect do not make it to the initial surgery, don't get to go home, don't make it to the cath lab twice, don't have a second chance at open heart surgery, and our William has defeated the odds. But, he remains a sick little boy. His right sided heart pressures are extremely high from the back flow in the lungs as a result of the pulmonary veins being too small. William has continued to struggle with increasing pulmonary edema and work of breathing. He has gone from needing high flow nasal cannula to intermittent BIPAP to continuous BIVENT and CIPAP to support him from a respiratory standpoint. And, these needs aren't going away. He will continue to struggle to breathe and grow by working so hard all the time. He has gotten longer and gained very little weight--still under 8lbs and he's 4 months old! Every calorie he is given is directed for breathing and heart function, so growing has been pushed aside. The body prioritizes from Day 1. In order for his pulmonary veins to have a chance at growth, WILLIAM MUST GROW!
CIPAP mask--he actually likes it!
Got to go to a nasal cannula for his first photo shoot today--Child Life had a photographer come take pics for us. We have amazing photographers who want to take Will's pictures, but scheduling them before our next adventure seemed impossible. So, we will hold those tickets for the future!! Pics to come in the next few days!!
We have given food, water, and a little sunlight (via a second story window!) but not much growth. And, not because there's been a drought in the area is Will not growing. There is no drought where his milk comes from!!! How does one get a baby to grow when they are on the highest calorie count that can he can consume and still isn't gaining? They take the work away from him--meaning that he will need respiratory support to ease his work of breathing and therefore, decrease the effort on the body. So, late this week or early next week, William is going to have yet another surgery. This one is for a tracheostomy and gastrostomy. William is going to have a trach placed for ventilator support of breathing. The goal is that this will rest his body so that GROWTH can happen. But, with a trach, one must continue tube feeds. So, a G-tube will be placed as well. SCARY STUFF!
My perfect looking boy will be perfect in a new way in a week or so. And, GROWTH will begin! If he can demonstrate growth over time in the PICU then we will come home on a ventilator, apnea monitor, and tube feeds. Good thing, we bought the Expedition in January--Will is going to have lots of paraphenalia. The learning process for this mom and dad is just beginning. Keep our strong-willed warrior in your prayers as he undergoes yet another surgical procedure. And, keep us all in your prayers as we embark on a new adventure. We often state that William is the captain of the ship and we are all just passengers (Chris and I as well as his entire medical team--and that is A LOT of people.....growing by the day!!!)
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