The Heart of the Matter.

Friends,

Here we are in February – wow!  Abel turns TWO WEEKS OLD  tomorrow morning, and continues to be a fighter. We are gradually trying to reduce his extra oxygen as he proves to be able to handle less & less (it’s down to half what it was when we left the hospital), and the introduction of the thin NG feeding tube last Thursday has been a game-changer in helping him maintain & look to gain weight. He’s getting plenty of sleep, and only fusses when he is cold, hungry or dirty-diapered (but wouldn’t you??). We are still learning how to best pick up on these cues, and how to best take care of our little man with each day the Lord sustains him. 

We can’t explain how much we have cherished these 13 days of holding and loving on our son, 9 of them in the comfort of our own living room no less… In that regard, we are confident that today he is exactly where he’s supposed to be. Our little family has been amazingly well-served and ridiculously well-prayed for, and the Lord has brought people out of the woodwork to come to Abel’s aid & ours… some of which we had never even met before two weeks ago. Even so, we will be requiring the Lord’s conviction & discernment as Abel continues to grow in defiance of the odds. For that reason, we’re asking the Lord for wisdom regarding “our role vs. His role” amidst the lingering realities of his health complications, as our uncompromising desire is to give Abel the BEST life on earth we can give him. 

While we do trust in our prenatal cardiologist & her Jan 23 (Day 2) assessment of the severity of Abel’s heart defects, we are still attempting to ‘leave no stone unturned’ and consult a few other pediatric cardiologists in DFW to add their observations. Our goal is to assess Abel’s specific T18 symptoms as thoroughly as we possibly can… We’ve been learning that it can be a challenge to individually “treat the patient, not the diagnosis” in this regard, as there is a heavy stigma that attempting to treat Trisomy-18 children is a futile act. So we’re having to push through that a good bit, but with each conversation we feel like we are gaining more clarity on what may or may not be realistic options for Abel’s care. Along the way in the meantime, we resolve to soak up every sweet day.

In last week’s letter to our first son, we explained that Abel’s heart is the #1 area of pressing concern. So we wanted to communicate a few details of what we’ve learned to date, as we had another heart echo done on Tuesday (Day 11) to monitor the severity of his aortic coarctation (CoA) and the status of his ductus arteriosis (PDA). This matters because as long as Abel’s PDA remains OPEN, it allows oxygenated blood to circulate in his little body and thus compensates for & neutralizes the life-threatening implications of his CoA. The dilemma in which we are forced to rest is that a baby’s PDA typically closes in Week 1 or Week 2 at the latest… This is yet another area where our son has defied everyone’s expectations already, but nonetheless we must understand the following:

• Abel’s PDA remains very open right now (a good thing), but we also found further validation of his severe CoA (a bad thing). So if the PDA began to close, things are likely to go downhill from there. While CoA’s can be repaired via heart surgery, we haven’t had any Doc’s recommend that route for Abel Paul.
• Bottom Line: We pray that Abel’s PDA will continue to work its magic for the time being. The longer it stays open, the more options we might have in the days & weeks that we pray lie ahead. We also pray that the Lord might orchestrate healthy & helpful conversations about Abel’s ticker, and lead us down a balanced path of diligent stewardship & peaceful clarity. Please join us in that.

Ultimately, as I wrap up this post, I realize that this headspace is not really a NEW aspect to our journey with Abel. We’ve become armed with more specifics since he has joined us outside of the womb, but we’ve been living in this challenging tension since last July… a total inability to control or manipulate an outcome, which forces you to make a decision: we can fall headlong into depression & despair, or we can return to the promises of the Faithful One. 

• So just as we’ve tried to do all along, we want to live out Psalm 143:8 and remind ourselves of God’s steadfast trustworthiness every morning. We want to cling to 2 Corinthians 4:16-18, setting our gaze on our great eternal Hope amidst affliction. And we want to remember James 4:14-15, seizing every precious hour of every precious day and knowing that even you & I are never guaranteed tomorrow.

God’s sovereignty is something I have subscribed to wholeheartedly for a good long while, but you really ‘put your money where your mouth is’ in these scenarios that truly are out of your hands. As it pertains to Abel’s health specifically, we acknowledge that we are helpless to determine exactly what his heart is going to do, even just in the next half hour. And in so many ways, that is such a terrifying thing to admit… It places this sinking feeling into the pit of your stomach when you know someone you love is in danger, and you can’t personally do anything to change that. But still we love the Corrie TenBoom quote summarizing Jesus’ words in Matthew 6:27. “Worry does not empty tomorrow of its sorrow; but it empties today of its strength.” Being afraid of what tomorrow may bring about for Abel does NOTHING to enhance the love in our home tonight. So we will surely struggle in doing so, but we resolve to choose joy with our son right now as his sweet little eyes look up at his Mama on the couch. Please lift us up by praying that the Spirit of glory and of God would rest upon us and make that possible.

We love y’all.

-d&k&a

(excluding this killer Crawford men selfie, all photos by http://www.jessbarfield.com)