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Anthony’s Story

Hi! Welcome to our CaringBridge website. We've created it to keep friends and family updated about Anthony's medical journey, to help us remember what Anthony has endured and to show how God has walked with us along the way. Some of the pictures we have posted of Anthony after surgery may be difficult for young children to see, so please use caution as you look through the photo section. We appreciate your continued prayers and hope our updates will allow you to pray for his specific needs. Thank you for visiting!

On the last day of 2002, baby number 3 arrived during a particularly stormy morning in Mobile, Alabama. After a very normal pregnancy, complete with several weeks (or was it months?) of morning sickness and all the other usual pregnancy pleasantries, a scheduled c-section was the means of his arrival. It was a textbook delivery with our new son getting a perfect score on his Apgar test! He was named and whisked off to the hospital nursery while they finished with me in the OR. We were, and still are, thrilled to have added Anthony Patrick to our family, giving our daughters, Samantha and Abby, a baby brother. (Samantha, by the way, had prayed for just that about a year before his birth!)

After an extremely long wait in the recovery room without seeing the baby, we asked a nurse about the delay. She said, "His lungs are a bit wet which is common for a c-section baby. We will bring him to you soon." So we waited. And waited. Finally a nurse came to take us to see him in the nursery. He looked beautiful and when I asked the nurse attending to him how he was doing, she answered, "He is doing well, aside from the heart murmur."

Heart murmur? Obviously she thought we had already heard the news. Unknown to us, our pediatrician heard a heart murmur and immediately had him checked by a pediatric cardiologist who "just happened"* to be in the nursery at the same time Anthony arrived.  *Read: "God ordained." After I had been transferred to my own room the cardiologist entered the room with a drawing in her hand. This was our first moment to learn that whenever a doctor draws a picture of something, there is a problem.

Bicuspid valve. Aortic valve stenosis. Surgery. Atlanta, Birmingham, or New Orleans. Critical. We had a very quick introduction to the world of congenital heart defects during this relatively short meeting in my hospital room. Before I had been worried about the delay in starting breastfeeding; then I found out that breastfeeding him could kill him because of the strain on his heart. Before I had been wondering when I could hold him; then I found out that he was so sick that he would not even be staying in the same hospital with me. Before I thought that open-heart surgery on a newborn would be too risky; then I found out that not doing open-heart surgery on our newborn would result in death. How can so much change so quickly?

The nurses responsible for transferring Anthony to another local hospital took pity on me. The tears in my eyes and the news that I had yet to hold him moved them to break the rules. They removed Anthony from his special covered bed and let me hold him before they transported him. What a joy to feel him in my arms after hours of waiting. His immediate instinct to nurse broke my heart as I had to refuse him. I will never forget that goodbye.

Ray stayed with him. The girls saw him. Then Ray and Anthony were flown to Atlanta, specifically to Egleston Children's Hopsital, connected with Emory University. A few days later the girls and I joined them there. (Thank you to Ray's mom and dad and to my sister for helping us during this time!)

We were now in a place where we were not alone. There were other shell-shocked parents wandering the halls. Other moms wheeled in wheelchairs because they, too, had just had c-sections. There were others pumping milk in the provided room and storing their breast milk in the CICU freezer hoping that someday it would be used. Here we were flooded with new information and experiences. Here we saw beyond the diagnosis. We saw the faces of the children; some of whom had repair surgeries, some of whom had heart transplants, and one on whom last rites had been performed. Here we learned the risks and the potential complications. But, here, we also learned to hope.

The doctors watched Anthony for the first few days. For awhile they paralyzed him to keep him from over-exerting. On the 6th of January they performed a balloon valvuloplasty. They had hoped it would open the stenotic--narrowed--valve. It failed. In fact, his condition worsened.

On January 9th they scheduled a Ross procedure. Little did we know at the time, but the cardiac floor was "abuzz" with the news that the Herman baby was going to have a "Ross." It was not common to perform this procedure on a newborn, but for Anthony this surgery was his only chance of survival. They successfully took out his malformed aortic valve, replaced it with his own pulmonary valve, and replaced his pulmonary valve with a homograft--a cadaver's valve. He started out with one compromised valve and ended up with two, but it saved his life. Ten years earlier there would have been no option for us. God is good!

Latest Journal Update


"Little Things Mean A Lot."

That's the title of the solo Abby is performing for her choir dance show this weekend. It is a beautiful song, and it is also an earworm. It has been running through our heads constantly, sometimes even keeping us awake at night.

But I don't mind.

Because the message is so true.

Little things do mean a lot...

Like walking all the way downtown and back.

Or chasing a butterfly across the front yard.

Requesting a second bowl of oatmeal.

And a second bagel at lunch.

Gaining five pounds.

And finding that your clothes are getting too tight.

(Just to be clear, I'm talking about Anthony...)

After September's bout with CMV, all these little things mean so much.

But the big things mean a lot, too.

Like the results from this week's cath/biopsy:

Perfect heart pressures and 1R for rejection. No treatment required.

Normal spleen after being so enlarged.

Another “not detected” CMV result.

And no fever nor headache after the cath!

We also received good news from his pulmonology appointment this week:

Excellent pulmonary function. As good as it has ever been.

Such great news!

There are only two medical issues about which we are still watchful—

His liver enzymes are still elevated as a result of Levaquin, the antibiotic he was taking last month for pneumonia, but they are consistently coming down. In fact, his levels have fallen by nearly half since his last blood draw on the 29th of September.

And the pneumonia or “infiltrate” for which Levaquin was prescribed, is still lingering in the lower lobe of Anthony's left lung. This area has always been a problem for him. Since we had to stop the other antibiotic earlier than we anticipated because of the liver issue, Dr. Stuart, his pulmonologist, decided to treat it with a different antibiotic for a few days, just to make sure it doesn't develop into something more problematic. Thankfully, although he is wheezing a bit, it doesn't seem to be causing Anthony any discomfort.

So not all is resolved yet, but almost.

As evidenced by his request for a fifth piece of French toast this morning.

It's the little things...

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4 Comentarios

sharon raef
By Kay Raef
So glad to hear your good news!!! Love to all! Kay Raef
William Carpenter
By William
So very wonderful! Praise God!!!
jeanne estes
Fran Collier
By Fran Collier
That's so wonderful. I can only imagine what joy and thankfulness the whole family must feel. God is indeed watching. Makes me wonder what he has for Anthony later in life. He must have some great plans for him.