I wish I could post more often these days. We are walking amidst an outcome we knew was a possibility, but dreaded to the bone. To our joy, Naomi Rose Coffin was born by C-section right on schedule last Thursday.
Thanks be to God, she is, in the parlance of medical cliches, resting comfortably. She's stable, and breathing with a ventilator, enjoying light pain meds, and looking like the sweetest angel who ever slept.
Devastating for us, though, is the unanimous opinion of the best neonatologists and surgeons on staff at Children's Hospital of Los Angeles that Naomi is not a candidate for any kind of aggressive intervention. Her brain was found to have many more (and more profound) abnormalities than was previously thought based on prenatal MRIs. And her condition will deteriorate day by day. Her cerebellum, cerebral cortex, basal ganglia -- the whole neurological motherboard, so to speak, is far too under developed to support the most basic elements of life. The particular type of trisomy 9 she suffers seems to have ganged up on her little brain. Ironically, the septal heart defect (hole), and the aorta choarctation, appear to have been healed.
One doctor told me last night that, yes, they could keep Naomi alive -- ie existing as an inert being attached to tubes, wires, and artificially assisted breathing -- for a long, long time. After a while, though, we're told, there is a law of diminishing returns, and distressing events will begin to happen. They already have. While she appears so peaceful and bears a strong heart beat, Naomi is already suffering kidney reflux, which can result in a severe infection. A blood transfusion resolved that. Two days ago she had some convulsions. A drug resolved that. Even the mouth suctioning is drawing pinkish spittle. And so on. We cannot let cat chase mouse for too much longer. Within days, likely.
Life sometimes includes some "It Must Be Done, Period" moments. This is one of them, God help us. We now face the impossible task of deciding when to finesse the end of her little life -- an event we're told would be peaceful, and well medicated throughout. Yet, we believe her true Father will give us the signs that it's time to help him greet her, as we helped him make her.
We're not talking about euthanasia. (I had the same questions myself when the hard facts of her very poor prognosis were given us.) We're talking about an extension of the comfort care she's already receiving. With no discernably good outcome, coupled with needless and steadily increasing suffering -- not to mention staggering NICU costs -- Naomi deserves the enjoyment of eternal rest. As brutally tough for us as it is, a quasi-orchestrated good-bye would allow her to fly non-stop direct from our weak arms to the Lord's strong ones.
How we'll do this, I have no idea. We want to keep visiting her; singing into her ear; stroking her hair (which, by the way, has hilarious-looking blond highlights -- who is this Fifth Avenue salon customer?); telling her we love her, and so on. But is that the best for Naomi
Each visit invariably shows us another tiny thing about her to fall in love with, so each time with her becomes more distressing than the previous one. Then there's the questions from her three-year-old sister Mariclare at home. "Is she warm enough, Daddy?" "Does she have her blankie?" It is these innocent, lovely questions that undo me emotionally -- an undoing I have to hide from her, at least for now. (She only knows her little sister has a boo boo and needs to stay with the doctor.)
I baptised her the day she was born. And our good pastor Confirmed her today. Houston, we have a saint in the family! And we love her with all our bursting hearts.
Please pray for Mariella and I that we read the signs of the times properly over the next few days. Naomi is no longer in need of prayers; we are. And I have to tell you, our family is truly walking in the strength of the Holy Spirit thanks to your constant prayers and support these past six months. We're experiencing the mysterious Beatitude blessedness of those who mourn. It is a great consolation.
I'll tell you soon about the amazing actual graces our Lord has given us thoughout these months. I've been told that some of these "God-incidences" may be of great encouragement to the faith of other people.
John Paul the Great, ora pro nobis.