I want to take her home.

That’s what I felt in my heart as we discussed next steps with the doctors this past week. The three surgeries required for these HLHS babies to live a longer life are brutal in and of themselves, but for Dolores – it’s unlikely she would make it past the first. Dolores falls on an extreme side of the scale for her condition with a lung disease that makes it impossible to breathe on her own. In the womb we knew there may be some damage to the lungs, but we did not know the extent until after she was born.

At the end of our heavy discussion with the doctors on Wednesday afternoon, Jen told me she felt the same way I did. We did not want to put her through so much suffering. The decision to bring her home to live her final days in the safety and comfort of our home was extremely difficult, but at the same time, an easy one.

These past few days have been spent enjoying our time with her and figuring out what taking her home looks like. Hospice, medical equipment, getting her off the IV drips and moving her to oral medication (and less of it), making sure she can be as comfortable and pain free as possible, moving from IV nutrients to feeding more with Jen’s milk, and more. It’s been a lot to understand and decide on, but we take it one day at a time. God has given us the strength to take this on.

One powerful and beautiful moment happened Wednesday night. Raw and emotional from learning what’s next, Jen, Ellie, and I surrounded our little girl – held in Jen’s arms – and loved on her. We gave lots of kisses, snuggles, we prayed, we played songs, we talked to her, and we let our tears fall. To Ellie they were “happy tears”, and in a sense they were as we shared this beautiful moment. But to Jen and I they were mostly sadness and pain as we came to grips with what we had just learned and decided to do.

But I know our decision is the right one. I know this is where God is leading us.

It’s easy in these moments to turn to despair. To yell at God and shout why me? Why her? To blame, to hate, to walk away from faith. Instead, we find ourselves drawing nearer to our Father and embracing this path of faith, trust, and love.

I was reminded of the epic stories we find in scripture. The path is never easy. The outcome was not always what was desired. But these stories of triumph – God always shows up in the big moment. The Israelites were trapped by the Nile river with the Egyptians right on their heels, and the Lord parted the seas to save them. Shadrach, Meshach, and Abednego were thrown into the fiery furnace to be burned alive, and the Lord protected them from the flame. David, a small shepherd boy, faced off against a giant of a man, and the Lord used David’s pebbles to kill him.

God uses these amazing stories to reveal His glory and spread his kingdom. So why not Dolores?

In mass today I found myself wondering, how do you have complete trust in faith in God to bring these miracles, but leave room for His plan? Maybe God’s design has been to bring her home all along. For us to only have a short time with her. If that is His will, I will surrender and know that she is in a much better place than I. But if God says “have the faith of a mustard seed and you can move mountains” or “ask and it will be given to you” then how can we not still hope, have faith, and ask? For in time, the why will be revealed. But for now, we must follow in faith knowing that we cannot see what is to come.

So until Jesus calls her home, I will believe that God can heal our sweet Dolores. All we must do is ask and have the faith to move mountains.

We humbly ask that you please continue to pray for a miracle. That her heart and lungs be miraculously healed so that we might care for and cherish this little girl for a lot longer.

St. Gemma, pray for Dolores.

St. Charbel, pray for Dolores.

St. Padre Pio, pray for Dolores.

St. Margaret Mary, pray for Dolores.

Monsignor Ken Leone, pray for Dolores.

Our Lady of Victory, pray for Dolores.

Sweet Jesus, heal our Dolores.