Saturday, February 19, 2011

As fate would have it.....

(From February 2004)

We went to bed as we would any other night. Granted our sleep had been impaired for nearly 4 weeks as the twins were in the NICU, but nonetheless we managed to get some shut eye here and there. I don't recall my dreams or the weather that night. What I do recall is being awakened by a ring a little different than most, in the late hours of the night, by Dr. Paco.

"Mrs. Divino? It's Dr. Pantoja, I am calling about your girl." I honestly thought, that this was it. The phone call. The one we had talked about possibly getting.

Dr. Paco explained Juliana had taken a turn for the worse and they were needing to put her on different respiratory support. This was full support, unlike with the regular ventilator, she breathed along with it, some of her breaths coming from her tiny damaged lungs were hers, not just a machines. But this night she had decided she was done breathing, she didn't want to be any part of it. And somewhere along the lines her heart agreed, it too was done. She had the worst night to date, and as it turns out, the worst night she may ever have. After so many episodes of being brought back to life, in such a short time frame, 11 times in 13 hours to be exact , the doctor is obligated to let the parents know that this was the usual course of a extremely premature body that is telling us, it's too sick, it's too small, it's too weak and it's most importantly too early.

I realize only now, the importance of the words Dr. Paco would say to us next.

"I think you should come down so we can discuss what is best for Juliana in her condition."

We got there in record time. When we arrived no one was around her, which was an unusual sight. We washed up and walked over to the little ones. Gavin looked plump and healthy as he always seemed to. After looking at his chart, we realized he had had a great evening after we left and they were planning on turning down his vent settings, a HUGE accomplishment.

Then there was our girl. Nothing plump about her. Healthy wasn't a word I'd ever use to describe her in her first few weeks and tonight was no exception. We saw the normal perky shade of pink disappear by the minute.... She was grey and lifeless. The new ventilator rattled her little body like a roller coaster. Kurt grabbed my hand and I squeezed his. We've been able to finish each others sentences before, but tonight, no words were spoken and no words needed to be. We knew exactly what each other was thinking. I don't think we spoke for quite sometime.

Dr. Paco went over again the details and asked us what we wanted to do. In his professional opinion, she couldn't and shouldn't go on this way. Every attempt her fragile body made to let go was taking her one step closer to certain brain damage. We agreed it was too much for her little body.

He told us we had a choice to make, when really, we had no say. It wasn't up to us, the doctors or modern medicine to direct this little life. It was up to Juliana and God. We couldn't wrap our minds around what was next. And weren't sure we wanted to. It was almost as if we thought of it, we were letting go of hope and her.

The morning hours came, the nurses changed shifts. We realized later that Dr. Paco was supposed to be at home, but chose to stay with Juliana. In so many ways, we believe that had he left, hope would have left with him. Kurt said he felt like he was in debt to Dr. Paco. There is little doubt that, as he stayed with Juliana, he'd stayed with many little ones before. I have to wonder how many at times.

We knew when the NICU social worker, physiologist and other docs were joining Dr. Paco in his office that it was very possible they were getting ready to speak to us. Turns out we were right. It also turns out that we never had to have that talk.

Kurt and I had spent the last couple hours of what we understood to be the end of her life, *holding* Juliana the best we could. Because we weren't actually able to hold her all we could do was place our hands around her and on top of her. We talked about how much we couldn't wait to really hold her. We told her that her brother was just a few feet away and she should see how adorable he was. We let her know that her big brother thought she hung the moon already, and that he was right. She did. Not only did she hang the moon but she also held our entire world in one hand and our hearts in the other. I told that if she left us, that she'd leave with those things too. We needed her.

Her vitals improved slowly over the next hour. Dr. Paco continuously mentioned his surprise at her doing so well, *all of a sudden*. By the time lunch rolled around Dr. Mark was congratulating us on making it through that night and that she seemed to have turned a corner, amazingly enough.

Kurt and I left the NICU that night and never really talked the previous 24 hours alot until recently. For me to be silenced is unheard of, but that night I was. I didn't run to the nearest keyboard and pour out our experience. And I realize, it was a form of protection.

Kurt said he never really worried about Gavin. I had to agree. I knew he'd make it out of there as I did with Brennon. Even with his serious conditions, I still had faith. But Juliana definitely made us think. We hoped a little more, pleaded a little more, dreamt a little more and prayed a lot more.

There is a poem my E.E. Cummings that comes to mind when I think of that night:

I carry your heart with me
I carry it in my heart
I am never without it
Anywhere I go you go, my dear
And whatever is done by me is your doing, my darling
I fear no fate
For you are my fate, my sweet
I want no world
For beautiful you are my world, my true
And you are whatever a moon has always meant
And whatever a sun will always sing is you

Here is the deepest secret nobody knows
Here is the root of the root
And the bud of the bud
And the sky of the sky of a tree called life
Which grows higher than the soul can hope or mind can hide
And this is the wonder that's keeping the stars apart
I carry your heart
I carry it in my heart

In many ways it will stay a secret in our hearts. What we felt that night and what we feel today when we look at her. But what isn't a secret is, the amount of joy this little girl holds. She is the tree called life, our life. She does grow higher than we hoped and she does spend her days amongst the stars.

I wonder who to thank at times. Medicine? Dr. Paco? Our faith? Mostly I thank God for the amazing opportunity of being her mom. But,I thank Juliana every day for being a part of life, here today. At times she makes this family what it is. Other times it's Gavin, Brennon or Kurt. But most of the time it is the works of 5 individuals, each bringing something different to the table. A table I am happy to sit at all the days of my life.

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