November 15, 2013

Hold My Hand and Tater Tot

aholdhand.jpg

Westley Wade was born prematurely at 28 weeks due to complications with pre-eclampsia.

In this image, his adoring parents were just told that depending on test results their baby who weighed less than 2 pounds could potentially need heart surgery. As his parents emotionally looked down at him through cords and wires, this warrior newborn (4 day old) baby boy Westley shot his hand up straight for them as if to let them know, that everything would in fact, be alright. Gratefully, it was and is. Westley is now 10 pounds 9 oz at 4.5 months and continues to amaze everyone who crosses his path. Location: BC Womens Hospital, Vancouver, BC. -- Showcased at National Geographic Photo Contest 2013 - In Focus - The Atlantic


Tater Tot: A true story from B Lewis in the comments:

Our baby girl, whom we call Tater Tot, was diagnosed prenatally with severe hydrocephalus. The excess fluid swelled her head and crowded out all nervous tissue within her skull. We were advised that it would be best to (minced words removed) abort her and chop her up for spare parts. When we refused -- we are Catholic -- we were told she would live perhaps one minute after her birth.

I told the doctor, "She's a Lewis, and if she only lives a minute, fine. She's going to get sixty full fucking seconds of life."

She was born, and lived. She went to surgery right away to have a shunt installed in her skull. The lead doctor in her case showed me her cranial CT scan. It was black from one end to the other. No brain was present, only a thin (2mm) film of cortical tissue plastered against the inside of her skull. "I'll be honest with you," the doctor said. "I've seen other cases like this, and they never end well." They took her to the NICU, intubated her, hooked her to a nutrition/hydration drip, and waited for her to die.

At midnight on the second night, they took her out of the support bed and put her in my arms. "We don't usually let parents hold a baby that's been intubated," the charge nurse said in an apologetic tone. "But, well, this may be your only chance."

So I held our poor baby in my arms. My wife, however, could neither see nor hold our daughter. She was across the street at the maternity hospital, alone on a floor full of mothers and their healthy babies. I stayed with our daughter throughout the long night.

The next day, they removed the respirator from her. "She's being fed room air, anyway. No point in keeping her tubed." I was told that with no brain it was unlikely that our daughter would be able to breathe on her own.

Several hours later, she was still breathing. "Hmm," said her doctor.

Later that day, the hospital's Catholic chaplain dropped by. He prayed with me, gave me a Rosary, and administered Holy Communion to me. After he left, I got up to check on the baby.

As I leaned over her support bed, a crumb of Our Lord's Body which had become stuck in my beard fell onto her forehead. I thought little of it at the time. A few minutes later, another CT scan was ordered.

That night, our parish priest arrived. He baptized our daughter and confirmed her in the Church. I broke down completely at that point. I have never felt such a black sorrow as I did then, but I was kept from utter despair by the knowledge that at least our baby would now go to Heaven when she died.

But she didn't die.

The next morning, the CT scan came back. Her skull now contained a brain where none had been before. The doctors did not agree on how this could have come to pass. An EEG was ordered. "Her brain waves are pure spaghetti," said the neurologist. "I have no idea what's going on in that head." Our daughter began crying and wriggling vigorously in her bed.

Later that day, my wife was released from the post-partum prison at last, and hurried over. Together with our young son, we held and prayed for our baby. Mommy wanted to hold her and feed her, but the nurse said no. "She'll need a gastric tube," we were told. "She doesn't have enough neural capacity for the suck reflex."

"Let's try a bottle on her anyway," said my wife.

By the end of the week, our daughter was sucking down two to three bottles per day. They disconnected the nutrition/hydration line soon therwafter. "I don't understand any of this," one nurse told us.

But we understood.

That was ten months ago. Today, our daughter is at home. She is now a big, strong, pink baby, with a full head of red-auburn hair. I just got off the floor where we were playing together. She's definitely retarded (or special needs, or whatever weasel word they use now), but she's getting better and more capable every day. She can coo, smile, laugh, and raise her head and upper body upon her forearms. She eats, poops, cries, and does most of the normal baby stuff. Not bad for a kid with no brain! No bad for a baby hey wanted to part out like a used car!

It hasn't been all smiles and dimples, of course. These past ten months have been hellish at times. My daughter's problems are very real and quite serious -- but she is doing great. She has responded well to drug and physical therapy. She passes physical exam after physical exam with flying colors, to the bafflement of her doctors. She is trying to make organized sounds. She loves music. And more brain tissue appears in her weirdly-shaped little head with each successive CT scan. She has a long way to go and a great many hurdles to overcome before she realizes her full potential, and of course there are no guarantees in her life (nor in anyone's), but I can guarantee you this: no daughter of mine will ever just lie there and die. She didn't when she was in that NICU support bed and she won't now.

We, too, have a warrior infant.

And I'm not surprised. Our family is Scottish on one side and German on the other. We are stubborn, hot-tempered people who, frankly, like to fight, and our baby is typical of the Mockingbird Breed. Like all Lewises, my girl was BORN FIGHTING, and that fighting spirit, that will to survive, continues. Every day she lives is a big, fat, Lewis Family Finger thrust boldly into the face of the Grim Reaper. "Not today, Mr. Death," we say tauntingly. "Maybe tomorrow, sir, but NOT TODAY."

Our Tater Tot may live a hundred years, or she may die tonight. The same is true of me, you, and everybody else. But I know this: when the time comes for her to go, she -- like the rest of us -- is going to go down the Lewis way, with every battle station manned and firing.

Thank you for posting this story.
Posted by: B Lewis at November 15, 2013 6:44 PM

Posted by gerardvanderleun at November 15, 2013 4:03 PM
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Our baby girl, whom we call Tater Tot, was diagnosed prenatally with severe hydrocephalus. The excess fluid swelled her head and crowded out all nervous tissue within her skull. We were advised that it would be best to (minced words removed) abort her and chop her up for spare parts. When we refused -- we are Catholic -- we were told she would live perhaps one minute after her birth.

I told the doctor, "She's a Lewis, and if she only lives a minute, fine. She's going to get sixty full fucking seconds of life."

She was born, and lived. She went to surgery right away to have a shunt installed in her skull. The lead doctor in her case showed me her cranial CT scan. It was black from one end to the other. No brain was present, only a thin (2mm) film of cortical tissue plastered against the inside of her skull. "I'll be honest with you," the doctor said. "I've seen other cases like this, and they never end well." They took her to the NICU, intubated her, hooked her to a nutrition/hydration drip, and waited for her to die.

At midnight on the second night, they took her out of the support bed and put her in my arms. "We don't usually let parents hold a baby that's been intubated," the charge nurse said in an apologetic tone. "But, well, this may be your only chance."

So I held our poor baby in my arms. My wife, however, could neither see nor hold our daughter. She was across the street at the maternity hospital, alone on a floor full of mothers and their healthy babies. I stayed with our daughter throughout the long night.

The next day, they removed the respirator from her. "She's being fed room air, anyway. No point in keeping her tubed." I was told that with no brain it was unlikely that our daughter would be able to breathe on her own.

Several hours later, she was still breathing. "Hmm," said her doctor.

Later that day, the hospital's Catholic chaplain dropped by. He prayed with me, gave me a Rosary, and administered Holy Communion to me. After he left, I got up to check on the baby.

As I leaned over her support bed, a crumb of Our Lord's Body which had become stuck in my beard fell onto her forehead. I thought little of it at the time. A few minutes later, another CT scan was ordered.

That night, our parish priest arrived. He baptized our daughter and confirmed her in the Church. I broke down completely at that point. I have never felt such a black sorrow as I did then, but I was kept from utter despair by the knowledge that at least our baby would now go to Heaven when she died.

But she didn't die.

The next morning, the CT scan came back. Her skull now contained a brain where none had been before. The doctors did not agree on how this could have come to pass. An EEG was ordered. "Her brain waves are pure spaghetti," said the neurologist. "I have no idea what's going on in that head." Our daughter began crying and wriggling vigorously in her bed.

Later that day, my wife was released from the post-partum prison at last, and hurried over. Together with our young son, we held and prayed for our baby. Mommy wanted to hold her and feed her, but the nurse said no. "She'll need a gastric tube," we were told. "She doesn't have enough neural capacity for the suck reflex."

"Let's try a bottle on her anyway," said my wife.

By the end of the week, our daughter was sucking down two to three bottles per day. They disconnected the nutrition/hydration line soon therwafter. "I don't understand any of this," one nurse told us.

But we understood.

That was ten months ago. Today, our daughter is at home. She is now a big, strong, pink baby, with a full head of red-auburn hair. I just got off the floor where we were playing together. She's definitely retarded (or special needs, or whatever weasel word they use now), but she's getting better and more capable every day. She can coo, smile, laugh, and raise her head and upper body upon her forearms. She eats, poops, cries, and does most of the normal baby stuff. Not bad for a kid with no brain! No bad for a baby hey wanted to part out like a used car!

It hasn't been all smiles and dimples, of course. These past ten months have been hellish at times. My daughter's problems are very real and quite serious -- but she is doing great. She has responded well to drug and physical therapy. She passes physical exam after physical exam with flying colors, to the bafflement of her doctors. She is trying to make organized sounds. She loves music. And more brain tissue appears in her weirdly-shaped little head with each successive CT scan. She has a long way to go and a great many hurdles to overcome before she realizes her full potential, and of course there are no guarantees in her life (nor in anyone's), but I can guarantee you this: no daughter of mine will ever just lie there and die. She didn't when she was in that NICU support bed and she won't now.

We, too, have a warrior infant.

And I'm not surprised. Our family is Scottish on one side and German on the other. We are stubborn, hot-tempered people who, frankly, like to fight, and our baby is typical of the Mockingbird Breed. Like all Lewises, my girl was BORN FIGHTING, and that fighting spirit, that will to survive, continues. Every day she lives is a big, fat, Lewis Family Finger thrust boldly into the face of the Grim Reaper. "Not today, Mr. Death," we say tauntingly. "Maybe tomorrow, sir, but NOT TODAY."

Our Tater Tot may live a hundred years, or she may die tonight. The same is true of me, you, and everybody else. But I know this: when the time comes for her to go, she -- like the rest of us -- is going to go down the Lewis way, with every battle station manned and firing.

Thank you for posting this story.

Posted by: B Lewis at November 15, 2013 6:44 PM

Amazing and wonderful, Mr. Lewis. I hope and pray that she continues to thrive.

Posted by: Julie at November 15, 2013 7:54 PM

[sigh]

Posted by: R Daneel at November 15, 2013 9:08 PM

Wow. Heroes come in many forms.

Posted by: Scott M at November 16, 2013 12:00 AM

Folks could learn a lot from a baby. I have.

Posted by: B Lewis at November 16, 2013 4:22 AM

Here's to Westley and Tater Tot, and to parents who believe in giving their kids an honest chance! And thank you, Mr. Lewis, for the wonderful story of Tater Tot's miracle/s, and God going to work in His own weird, wonderful way.

Posted by: Suburbanbanshee at November 16, 2013 4:34 AM

S'banshee: You are welcome. As Catholics, we Lewises have always believed in miracles, but never hoped to witness one. Some people say that God's miracles don't happen any more, but our T8r Tot is living proof that they do.

I don't want to minimize the role the surgeons, physicians, nurses, and others played in the miracle, however. We are blessed to live near one of the nation's finest pediatric hospitals, and the expert care the Tot has received there has kept our baby alive on many occasions. In our case, I am certain that the skilled men and women of Cook Children's Hospital in Fort Worth have been instrumental in the Almighty's preservation of our daughter's life.

And then there's my wife, whose sacrifices for the sake of our little girl have been without number, and whose tenacity in fighting both bacillus and bureaucrat in defense of her life is a tribute to the Mockingbird Breed. Our little boy, too, has suffered and sacrificed for the sake of his sister, and always without complaint. Without Mommy and The Boy, Baby would not be here with us today.

Tater Tot still has plenty of problems, of course. She is significantly delayed neurologically and has many other health issues as well. We are pretty sure she is blind, for example. But she's been shocking the shit out of the "she'll never be able to" crowd since Day One, and she has a goodly store of surprises left for all.

Nothing is certain in this world. Life is a gamble for everybody -- but our money is on the Tot.

Plus, she's cute, which helps take a little of the sting away when you're on the way to the ER with her at 3:45 a.m.

Thanks to you and all of you for your kind wishes and words.

Posted by: B Lewis at November 16, 2013 8:48 AM

Life affirming evidence of God's miracles in this world. Thoughts and prayers for a family filled with love and Tater Tot, the baby who refuses to quit.

Posted by: Jimmy J. at November 16, 2013 9:15 AM

I love this.

Posted by: Leslie at November 16, 2013 9:21 AM

"I told the doctor, "She's a Lewis, and if she only lives a minute, fine. She's going to get sixty full fucking seconds of life."

That is the most Catholickest swearing I have ever had the pleasure to read, Mr. Lewis. Bravo!

Posted by: Jewel at November 16, 2013 9:23 AM

I'm liking "The Mockingbird Breed" and think it deserves a coat of arms. Mockingbirds are fierce and relentless; a worthy mascot for the persistent spirit!

I wonder at the fight in any child faced with seemingly insurmountable obstacles to getting on with the life given. I like erring on the side of life, and I love folks who understand that amazing "mistake" and give their all, heart and soul, for it. Bless you and yours.

Posted by: Joan of Argghh! at November 16, 2013 3:57 PM

JofA: Thank you for the kind thoughts.

Team Lewis actually does have a "coat of arms". I made it up myself when our son was born. We picked the mockingbird as our totem/badge because the mockingbird is the State Bird of Texas, our home. We also picked it because it exemplifies the qualities to which we aspire. The mockingbird is not a bird of prey, yet it is absolutely fearless and aggressive in defense of its home, family, and territory. I have felt the mockingbird's fury myself (her nest was in a shrub near the sidewalk!) and I have seen mockingbirds drive off grackles, crows, ravens, and even red-tailed hawks. They are not birds to be trifled with. Yet despite this ferocity, they are the sweetest singers of any bird. I like to think we Lewises are something like that.

Our family motto is Dieu et devoir, by the way.

Someday I'm going become a real armiger and hire a pro to adapt my "coat of arms" into a real achievement of arms and register it with the American College of Heraldry or somebody. Until then, it looks good on stationery.

Posted by: B Lewis at November 16, 2013 9:30 PM

That's an impressive bit of heraldry, Mr. Lewis! Nice.

Posted by: Joan of Argghh! at November 17, 2013 3:55 AM

This story just blew me away. Thank you so much for sharing this incredible story Mr. Lewis. You are brilliant & have inspired me to be a better Catholic & more grateful for God's Blessings & Plan for me. I am vehemently pro-life with no exceptions what so ever & your words give me strength & hope as I continually gird up and step into the pro-death cultural fray. God Bless you and your precious family.

Posted by: Elizabeth Luyben at November 18, 2013 1:04 PM