The Hole in Jack's Heart

The first lesson we've learned in the Tiny Baby Unit is that things can change from relatively stable to life-threatening overnight. We got our first taste of that last week. My phone rang at about 7:30AM Thursday morning and the caller ID was from Loma Linda. My heart dropped. They don't call unless something is wrong. I answered and heard the words every parent dreads, "Mr. Martin, I have bad news about your son."

The doctor told me they had discovered air outside Jack's bowel due to a perforation and that Jack's belly had turned grey from the resulting infection. A surgical procedure would be required immediately to save his life. We were put on the phone with a surgeon who explained the risks, then we were handed off to give authorization to two different nurses so they could begin right away. We called Lisa's parents to come watch the girls at our hotel room and then made our way across the street to the hospital. By the time we arrived, Jack's surgery was well underway.

The waiting room

Unsure of what to expect, Lisa and I sat in the waiting room for a little over an hour before the surgeon came out to give us an update. It was a positive report. Jack had responded well and was stable. The doctor explained that they weren't sure what caused the perforation and that the surgery team would be watching him daily for the next couple of weeks. He also said that this could lead to additional complications down the road.

In the days since, Jack has been relatively stable. Yesterday his nurse told us that he was doing really well and his numbers were looking good. But that all changed today. Jack's numbers have not been stable and his doctors have told us that he needs heart surgery immediately to address his Patent Ductus Arteriosus or PDA. This refers to a persistent opening between the two major blood vessels leading from the heart. The opening, called the ductus arteriosus, is a normal part of a baby's circulatory system that usually closes shortly after birth. But Jack's is wide open and this tends to be common in micro-premies. Left unaddressed it can cause poorly oxygenated blood to flow in the wrong direction, weakening the heart muscle and causing heart failure and other complications. Jack's bowel perforation has not been healing and the doctors think it's because his circulation is out of whack from the PDA.

So tomorrow, one week after his first surgery, Jack will undergo a second. The world-renowned pediatric heart surgeons at Loma Linda will apply a clip to the PDA and hopefully restore healthy circulation to his little body. Please pray for our mighty little Jack. He's been through so much already, and there are many more hurdles ahead of him. We will update his status here as soon as we are able.

Lisa holding Jack for the first time

Lisa was able to hold Jack for the first time this week and I'll never forget the serenity and sweetness of that moment. We expected that this probably wouldn't happen for several weeks so when Jack's nurse suggested it as an option we were thrilled. They monitored his vitals closely until they were certain he was stable enough and then with the help of a small army of hospital staff they transferred him from his NICU bed to my wife's arms. She held him there and sang to him for about two hours, and the tubes and wires hooked up to Jack's tiny little frame faded from view. It was beautiful and profound.

Within seconds of Lisa holding Jack and singing to him, his vitals improved. His oxygen and stress levels got better and his breathing became deep and regular. The bond of mother and child and the brilliance of God's intimate design on full display. Lisa hasn't been able to hold him again since, but the hope is that this will become a daily occurrence. The doctors have told us that premature infants who are held like this for 2-3 hours a day tend to be much more successful in their recovery and healthier in the long run.

We don't know what tomorrow will bring, but 12 days into the deepest valley of our lives we rest in God's infinite love knowing that no matter what happens to our Jack; God is good and his purposes are perfect. With every labored breath, we take comfort in knowing that our baby boy is secure and sustained in the loving arms of Jesus. And we thank our merciful Lord for each and every day he gives us with our little fighter.

Thank you all for your love, support and prayers. We are so grateful.

---

Dear refuge of my weary soul,

On Thee, when sorrows rise,

On Thee, when waves of trouble roll,

My fainting hope relies.

To Thee I tell each rising grief,

For Thou alone canst heal;

Thy Word can bring a sweet relief

For every pain I feel.

Anne Steele (1716-1778)