Congenital Heart Disease. Liver Disease. Those are two phrases I never imagined would enter our family’s vocabulary. But we faced the reality of them for nearly 3 months.

Titus was diagnosed with tetralogy of Fallot before he was born. I knew heart disease was serious, but I wasn’t prepared for the intensity of everything that came with it. Truthfully, nothing could have prepared us.

Titus in SCBU

During Titus’s first surgery, his blood pressure dropped dangerously low. He was very unstable and needed to be transferred to Freeman Hospital (from the Royal Victoria Infirmary) that evening where cardiologists could watch him more closely. I was terrified as the reality of Titus’s CHD took shape. I thought we’d lose him, and we probably could have, were it not for the fantastic cardiologists and cardiothoracic PICU nurses who worked hard to keep Titus stable. They’re my heroes.

We moved from our accommodation at the RVI to a friend’s house. We appreciated their hospitality in providing a safe place for us to fall while we came to terms with the implications of Titus’s health issues.

The only way I could fall asleep that night was to sing “our” hymn, the one I sang to Titus when he was in the womb. I meditated on the truths in “Great is Thy Faithfulness.”

Great is Thy faithfulness, O God my Father

God, you are faithful. Protect my baby right now.

There is no shadow of turning with Thee

This is not a surprise to You, Lord.

Thou changest not, Thy compassions they fail not

You are unchanging and Your love never fails.

As Thou hast been Thou forever wilt be

The following day was very difficult. Titus was up and down, and just when we thought he was stable, he surprised us and got worse again. My heart shattered into a million pieces as the doctor took us into the “quiet room” — the place we go to hear bad news about our baby. This time, the doctor discussed the likelihood of needing to put a stent in Titus’s heart. Hours later, we sent him off to the catheter lab to have the stent inserted. I was in tears, terrified because the doctor couldn’t guarantee Titus would survive the procedure because he was only 3 days old. And if he did survive, he may return from the cath lab on a special bypass machine.

Mercies new every morning

Hours passed slowly. As the minutes dragged by, I didn’t know how I would survive the coming days and weeks. God met us in our uncertainty. He gave me a picture of Titus being held in the shadow of His wings. I knew then everything would be all right in the end–no matter the outcome.

Miraculously, Titus survived the procedure. And he didn’t return to PICU on bypass! I’m so grateful for that because we learned weeks later that bypass would have caused his liver to fail, and Titus would have died. God definitely protected Titus in shadow of His wings in that cath lab!

“Heart babies” inspire me because even though they’re so weak and unhealthy they have incredible strength to keep fighting. Titus, our baby with multiple congenital problems, inspires me. He was a little fighter — all the way until his last days. I’m amazed at how God used my medically fragile baby to encourage me to keep going. Titus, our little boy fighting for his life, encouraged me to keep fighting through our journey with him.

God is still using him to encourage me to keep pressing on, to keep living after suffering such a great loss. Knowing that God gives us strength for today and bright hope for tomorrow makes me hang on all the more.

Titus cuddles

Titus’s journey is just the beginning of relying on today’s strength and tomorrow’s hope.

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