Today, Mark and I have been reflecting on our journey. This time last year, we were struggling with the news that our little peapod had serious complications, and likely had chromosomal defects. Little peapod had bilateral cystic hygromas (fluid filled sacs) at the base of his/ her neck. I spent the first part of Christmas break in bed, desperately searching online databases at TTUHSC Library for studies on outcomes of prenatally diagnosed CH. Outcomes appeared so dismal. It's funny how much life can change in a year.
We are so fortunate to have our little guy.
Watching him sleep in our arms, we are often reminded of how far he has come. Having a baby with CHD has truly illuminates the beauty of so many aspects of parenthood we may have otherwise taken for granted.
Feeding: In the beginning, we celebrated an ounce at a time. Literally, once ounce per oral was an amazing feat. Today, we continue to celebrate each feed, "Elliott ate 5 ounces!"
Eliminating: Initially, we were monitoring how "negative" he was ("we really want him to be 100cc negative today" to ensure adequate kidney function). Now, we are happy to change diapers, as we continue to be grateful for that indicator of kidney function. While in the hospital, Elliott was NPO prior to his procedure due to concerns with perfusion to the bowel secondary to his CoArc. Necrosis of the bowel is a very serious complication that essentially leads to death rather quickly. Elliott's CoArc has been repaired, and his bowel is well perfused. However, we continue to celebrate each and every poopie diaper.
Crying: Yesterday, we were at the doctors office listening to the sweet cries of a two week old baby. Tears welled up in our eyes. We did not hear Elliott's cry at two weeks. He was struggling to heal, with the ventilator breathing for him. Our tears were not tears of sadness, but tears of joy for the amazing sound of our little boy's phonating vocal folds. Elliott's vocal folds were subjected to several risk factors. Intubation, and extubation can cause vocal fold paralysis. A common complication of open heart surgery on little dudes is damage to the recurrent laryngeal branch of cranial nerve X, Vegas . Anyway, the point is that each peep out of Mr.E's mouth is pretty stinking precious.
So how is Elliott? Elliott is really thriving. He is gaining weight, and growing tall. He has finally made it onto the charts. Nanny McPhee (our sweet friend, Jan, who has graciously and lovingly cared for Elliott while my mom and I are at work) has worked so diligently to keep him fed (water boarding, she calls it). He is sometimes a difficult kid to feed, denying the nipple one second and taking it the next. We often call him the "little and often guy," as he typically eats a little bit pretty often. We are still concerned about his head. He has a flat spot on the back of his head, and continues to prefer leaning his head to the right side. He demonstrates full range of motion, but defaults to the right when he sleeps. At yesterday's 6 month check up, Dr. Z wrote an order for physical therapy and a consult with a plastics guy at Memorial Hermann. So, a super cool helmet may be in his future...from a cardio standpoint, we are continuing the wait and see dance. He looks good, but we are not out of the woods. At the last Echo, his right ventricle was still pretty small, and there are a few vessels to his lungs that need to be cauterized. So we have at least that surgery in our future. His ASD continues to allow some of the blue blood to bypass the right ventricle, and recirculate in the body. In March, we will be reassessing his stroke risk, and may begin an aspirin regimen. Our next Echo is in March.
This Christmas, we are thankful for our sweet, strong boy, each other, and amazing family and friends.Since the last update, we have had quite a journey. Here are some pictures of the past couple of months.