First and foremost, thank you for your continued prayers as we navigate this journey. We can feel the power of your prayers and it sustains us through the highs and the lows.

It’s been a bit since our last update and a lot has happened. I’ll admit the days seem to be blending together at this point. Yes, it’s partly because there is a lot of emotional weight that comes with this journey. But it also comes from embracing each moment.

Our beautiful little warrior princess has reminded us how precious life is. How wonderful is each moment I get to gaze on her face or hold her in my arms. We do not know what Jesus has in store for this little girl. But I can tell you this – she has already made a powerful impact in her short little life.

Our last update left off with her slowly weaning off the breathing tube doing sprints. The goal of this was to move her from a ventilator to a BiPAP machine. A BiPAP machine features two alternating pressure levels: a higher setting for inhalation and a lower setting for exhalation. On the BiPAP, she is now doing the work most of the time with the machine filling in the gap if she struggles or misses a breath. This helps give us a better picture of the condition of her lungs. The move from a ventilator to the BiPAP is an essential step for her to qualify for her first surgery.

She did not move over to the BiPAP on the day planned, but that was ok - she just needed one more day. It’s tiring learning how to breathe on your own! But on Sunday, she finally had her breathing tube removed and the BiPAP machine was put on her face. Now, this was a good thing of course, but we had mixed feelings about this because her poor baby face now has this mask strapped on - straddling the line between too tight and minimal air leaks. Dolores did not like this at first.

It’s amazing how you can discover their personalities from as early on as when they are in the womb. God has already crafted her beautiful spirit from the moment of conception. Our girl is strong and a fighter. She moved way more than David or Ellie during pregnancy. I knew she was a fighter from the moment she came into this world – as I heard her first cries and watched her move on the stabilization table. Jen had the gift of knowing her on a deeper level before she was born. But she’s always been speaking to us - both before and after birth.

When she was on the breathing tube, the tube went down into her lungs. This passes through and restricts the vocal chords, preventing her from being able to create sound. She was unable to cry or make noise ever since intubation. But her voice is still loud in other ways. She will tell you what she likes and doesn’t like in many non-verbal ways – from an eyeroll to pushing herself up (yes, she did do this at only days old. She’s strong!) to an accelerated heart rate.

So while it took a while for her to get used to the new BiPAP machine, the gift was that we could hear her cries again – though very softly. It will take time for her vocal chords to strengthen, but her little cries were so sweet to hear.

Sunday’s Gospel was the story of Jesus walking on the water. We are called, like Peter, to step out in faith amidst the storm (how fitting!). In the homily at our church, Fr. John reminded us that faith is not intellectual but an act of trust in God lived through each moment. We certainly have been given the opportunity to live that out!

If Sunday was a day to celebrate milestones and steps forward, Monday was the faltering step when Peter lost his focus on Jesus and began to sink.

What started out as a great day on Monday, led to Jen being admitted to the hospital and a rough day for Dolores.

Jen’s follow up appointment Monday morning revealed her blood pressure hit 190. Doctors consider 160 critical and high risk for a stroke. So Jen and I arrived at the hospital at 1pm where they tried to give her medicine to lower her blood pressure to no avail. By 6pm she was checked into an overnight room for a dosing of Magnesium through the night. This can be a very unpleasant treatment, and Jen was very nervous about this.

Dolores, newly on the BiPAP machine, was having a hard day. She was struggling to breathe on her own and very agitated. She has big feelings and will let you know - crying, fighting back, high heart rate.

And here I was in the midst of this, wondering if my wife was going to drop dead of a stroke or if my little Dolores was going to make it. How I was going to check on and assure Ellie and David.

Jesus, please grab my hand and save me. I feel like I’m sinking in this storm.

But that didn’t happen. God was with us every step, knowing we would need extra support that day. Praise God our kiddos had a play date with the Wells who were so gracious to keep them all day. For Jen’s parents who walked alongside Dolores during the day as she struggled. For my mom who went and held her for hours late into the evening to reassure and comfort her. For the amazing doctors and nurses who took care of my wife and Dolores. For all the prayers from all of you and those who check in on us to offer help. It was a hard day.

And as I stood in my daughter’s hospital room late Monday night, beaten down and exhausted physically, spiritually, and emotionally, all I could do was embrace the moment. What could I do, but turn to my Father and say ‘I surrender all to you’. I had to walk out that room knowing Dolores was struggling and very upset, trusting that she was in good hands. I had to leave my wife by herself in the hospital, trusting that she too was in good and capable hands (a lovely Catholic nurse who took good care of her through the night). I had to go home to reassure Ellie and David who were confused why mommy wasn’t home to put them to bed like she was supposed to.

But Jesus – he grabbed my hand and said “I’ve got you”. Trust in me.

And today was a good day. His everlasting love was revealed to us in many ways. Ellie and David had a wonderful play date with the Viets. Jen only had to do 12 hours of the Magnesium instead of 24 and was discharged by early afternoon. Dolores had an amazing day - a peaceful and relaxed day spent in the arms of her Nana, Momo, Popo, Mama and Dad. The difference from yesterday to today was night and day, not fussing a bit when transferred from person to person then back to her bed. That has not happened yet. And I think it was for a spiritually beautiful reason.

Jen was afraid to take on this Magnesium treatment overnight - and for good reason. A lot of friends told her it was awful. But what gave her the courage to say yes, was knowing that she could suffer in solidarity with Dolores. The Magnesium treatment makes you miserable and uncomfortable, hot/cold, tired, unable to get up on your own, and more – all to protect her heart. Three minutes down the road from Dolores, Jen spent the night offering up her discomfort for our girl.

In talking with Dolores’ doctors - they did end up increasing medicine that eases her discomfort through the night, but that didn’t change much. They did end up giving her a blood transfusion later in the morning that helped her oxygen levels through the day. But she finally calmed down in the early hours of the morning, and I believe it was the beautiful connection between mother and daughter united in heart and spirit through the night.

Early Monday morning, Jen prayed with the readings, which was a powerful reminder of God’s love.

Matthew 18:1-5, 10, 12-14

The disciples approached Jesus and said,

“Who is the greatest in the Kingdom of heaven?”

He called a child over, placed it in their midst, and said,

“Amen, I say to you, unless you turn and become like children (Dolores),

you will not enter the Kingdom of heaven.

Whoever becomes humble like this child (Dolores)

is the greatest in the Kingdom of heaven.

And whoever receives one child (Dolores) such as this in my name receives me.

[…]

If a man has a hundred sheep and one of them goes astray,

will he not leave the ninety-nine in the hills

and go in search of the stray?

And if he finds it, amen, I say to you, he rejoices more over it

than over the ninety-nine that did not stray.

In just the same way, it is not the will of your heavenly Father

that one of these little ones (Dolores) be lost.”

The first half was powerful for us, as we read it with ‘Dolores’ replacing ‘child’. For she is a shining light pointing us back to the Father. But the last line of the Gospel was a reminder for us.

Early on in the pregnancy, Jen was afraid she was going to miscarry because of past experiences. In this fear, the Lord spoke these words to Jen’s heart through scripture: “…it is not the will of your heavenly Father that one of these little ones (Dolores) be lost.” That brought her peace and carried her through her fears and worries.

When Dolores’ prognosis was confirmed and we felt fear, confusion, anger, and sadness close back in, Jen was reminded of these words: “…it is not the will of your heavenly Father that one of these little ones (Dolores) be lost.” It was a hope we clung to for the rest of the pregnancy. And as the sun rose after a hard day and night, God spoke these words to us again. Because of course, God is in control. We need only to surrender and place our trust fully in Him.

I do not know what tomorrow will bring. We don’t know if Dolores will be offered the chance for the first surgery. We don’t know if she will have a long and happy life or if these moments are all we will get. But what I have found in the midst of all this, is I am so blessed to know this beautiful little girl. Each moment is a gift I treasure.

As I held her this afternoon and saw how peaceful and cozy she was in my arms, all I could think was that I’m so grateful for the time I get with her. And as I held her, I prayed over her and asked God to heal her. But then what ended up coming to my lips was “God will heal you, if you choose it.” I’m still wrestling with this, but I believe that God gives her that power to choose. Just as we all have a choice to follow God’s plan for our lives. We have a fond saying among us and the doctors/nurses that “she’s in charge”. We respond to how she does and what her body tells us.

What God wants to do with her – only He knows. But I do know, whatever it is, it is profound. I know because she has already brought a profound change to my heart. I cannot explain it, but I will never be the same. And I’ve witnessed how she and our family makes an impact on the doctors, nurses, and others around us. While we only see the tree, God sees the forest and can take our pain and suffering and do so much with it. We only need trust in his divine plan and work in union with Him.