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Sunday, September 17, 2006

A far-too-early good-bye

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.

18 Comments:

Blogger Banshee said...

I am very sorry to read this. I'm sure I'm not the only one who's been checking back since Wednesday for news.

Rest assured that we have been praying for all of you, and that we will continue to do so.

5:57 AM

 
Anonymous midwestmom said...

Patrick,
I don't envy you in the least. It's hard to even read your account of events. Heartbreaking, especially your three-year-old's questions.

You are a rock. Enjoy your sweet baby while you have her. Your family is in our prayers. God bless.

7:16 AM

 
Anonymous Naomi said...

Oh, I am sorry. What an inadequate word that doesn't begin to cover how I feel.

God grant that you have every comfort and know that God sees your every tear.

7:45 AM

 
Anonymous Mila said...

Patrick, my heart is torn for you and your wife. God works in mysterious ways and we must trust His wisdom. While you and your family will be in my prayers, I also request yours for my two daughters, both pregnant, and one of whom has been told her baby may have heart problems and Down syndrome. Let us support one another in the love of Christ. God bless.

8:48 AM

 
Blogger Susan said...

These events are a mystery. Why a child would be born with such conditions, why her parents and all who love them would suffer so much.

There is no answer in logic. God said, "You can't understand it." (Likely we're just not smart enough.) "But I will pledge My own suffering, My own death, to you, so that you know that there is a meaning to all this, that nothing is ever lost."

Praying for you and your family.

10:19 AM

 
Anonymous Anonymous said...

I am so sorry. In your preparations for Naomi's departure to a far better place, do not forget your three year old. I'm sure the hospital must have some psychiatrists on board that can help you prepare her as well. Thank you for your witness to the sanctity of life.

11:52 AM

 
Blogger Jack Bennett said...

Patrick, my prayers are for you and your family in this trying time. I really believe that there are no accidents in cases like this, little Naomi was meant by God to live as long as she may all the more so she can spread love to those who know her and memories to those who will never forget her. One of God's little reminders of what "grace" really is.

12:22 PM

 
Anonymous Anonymous said...

Praying for you and your precious little baby.
--Kevin from Boston area.

2:29 PM

 
Anonymous Sharon said...

Patrick,

God bless you and your wife and your darling Naomi. My husband and I did such a vigil 22 years ago; ours was a roller-coaster ride of seven weeks. We have a little Claire in heaven who we often remember in anticipation of seeing her again, and now more with joy than sadness. You won't lose her ...

With prayers for your strength and gratitude through this terrible cross of separation.

Sharon

3:00 PM

 
Blogger Meg Q said...

God bless you.

3:29 PM

 
Anonymous Anonymous said...

Patrick and Mariella, we praise God for your precious little Naomi Rose. Please be assured of our intense prayers for you during these days. We are at your side despite the miles. In His love, Mary and Jim S.

5:07 PM

 
Anonymous The Embrey Family said...

Dear Patrick and Mariella,

We are so moved and saddened by your news. It was good to read your post. Wish we could come and visit you all, especially Naomi Rose. She sounds so beautiful. We send our love and you are all in our prayers.

Mark, Emily, Nicholas and Joseph

6:16 PM

 
Blogger Wimsey said...

Patrick,

I'm so sorry to read this.

I'm praying for you and your family. May God grant you peace and trust in him. God Bless.

6:29 PM

 
Blogger Sasha Dimple said...

Patrick and Mariella,

We are so sad to hear of little Naomi's condition. Your family is in our prayers. May God's peace be with you both.

Love and prayers,
Greg and Christa

10:01 PM

 
Blogger Nora said...

Prayers for discernment and confidence as you take the difficult steps you must. Then for comfort hope thereafter.

6:00 AM

 
Anonymous jen said...

Patrick
You write so eloquently in the midst of this trial. Thank you for sharing Naomi's life with us, as well as your grief. You are in my prayers.

8:46 AM

 
Blogger Mhari said...

Praying very much for you all,
Mhari

6:06 AM

 
Anonymous Anonymous said...

Dear Patrick,

As happens with the Web, I unexpectedly found my way to your site. I was Googling my own name, which is Naomi Rose (first & last). And so I read your heart-full story. I too am a writer, and Jewish rather than Catholic, and living in California as a blue-state thinker. I am so touched by your faith, honesty, and courage. Whatever blessings I can confer, in the name of the One, and in the name of my own name, I give them to you and your family, embodied and transcended.

Blessings,

Naomi Rose
naomirosedeepwrite@yahoo.com

8:20 AM

 

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