Wednesday, July 14, 2010

Meet Patrick.

120 days.

January to May. Think about it . . .it really is a long time.

Winter became Spring. Literally and figuratively. Snow covered streets and dark winter afternoons gradually turned into longer brighter days, 'no coat' kind of mornings, rides home with the windows down. Trees that had appeared barren showed signs of life again with their spring green buds and early blooms. Tulips popped up where snow piles had been.

They say that Spring brings with it Hope.

"They" were right.
But, it was most certainly, the longest winter of my life.
I spent the first 4 months of 2010 sitting at the bedside of my baby boy, Patrick, at Yale-New Haven Hospital. He was born on January 6 and came home on May 5. I spent every single day there with him.

Patrick and I kept each other company.

We held each other's hand.
I read him Goodnight Moon and Peter Rabbit. I believe he heard me talking through the portholes of his isolette. I tried not to cry in front of him.

I did a lot of sitting. Sitting still. Doing nothing.

And most of the time it was just plain brutal.

We waited 3 weeks to hold him.

We waited 6 weeks for him to open his eyes.

We waited 7 weeks for a diagnosis.

We waited 11 weeks to hear him cry.

We waited 12 weeks for him to meet to his older brother Luke.

We waited 16 weeks to bring him home.

Patrick was born seven weeks early, with an extremely rare and complex medical condition, which took 7 weeks to finally diagnose. Officially, it is called: Kaposiform Hemangioendothelioma with Kasabach-Merritt Syndrome. In layman's terms, it is a vascular tumor in his right neck/upper chest area that put an enormous strain on his heart. Patrick's circulation pattern was extremely abnormal, causing most of his blood to shunt rapidly from his heart to the tumor. This "high flow" was happening so quickly his little heart could hardly keep up. And, his other organs (kidneys, liver) were suffering because they were not getting the bloodflow they needed.

From the moment he emerged into this world, the life-saving measures began. And it never let up. He was intubated and put on a ventilator even before the umbilical cord was cut.

Jeff and Patrick
Patrick came into this world with "nothing more than a beating heart" they told us. How's that for a beginning?

Pulmonary Hypertension. High Output Cardiac Failure. Renal Failure. Platelet Consumption. Oscilator. Ventilator. Edema. Transfusions. Packed red blood cells. FFP. Cryoprecipitate.

My vocabulary expanded minute by minute. Hour by hour.

Patrick was born on a Wednesday afternoon via EXIT C-Section. By Thursday afternoon the Medical Team wanted our consent to do an embolization procedure that would either save Patrick's life...or not. (At the time, they thought that Patrick had an arteriovenous malformation which was causing his cardiac failure). The goal of the embolization was to 'glue shut' some of the arteries feeding this neck mass, and therefore alleviate the strain on his heart.

I remember questioning them through my tears and agony: Is this too much? Are we doing too much to this poor little baby?

At the time, my husband, Jeff, had just returned to our home (about 25 miles from the hospital) to be with our son Luke for a little while, intending to come back to the hospital later in the evening. My parents and sisters and brother-in-law were with me. We called Jeff and told him to come back to the hospital. I asked the Team if they could please wait for my husband to see Patrick before this risky, 3-4 hour procedure.

I could see by the looks on their faces that this could not wait. Not another minute. Dr. Jeffrey Pollack said: "I'm ready to go now. Now."

And my husband Jeff did the most selfless thing in the world. He told them to go ahead. Take care of Patrick. By far, his greatest 'Dad' moment.

I kissed Patrick goodbye.

And I prayed like I've never prayed before. I begged actually. And I pleaded.

I watched this elite team of cardiologists, neonatologists, interventional radiologists, nurses, respiratory therapists, PA's, anestesiologists slowly, carefully, methodically, move Patrick, in his isolette, along with all of his equipment (ventilator, syringe pumps, medication, transfusions, oxygen) slowly out of the Newborn Special Care Unit, on their way to the Radiology Department, on another floor of the hospital.

I wondered selfishly through my tears, How will I ever survive this?... I was already so madly in love with Patrick. And I hardly even knew him. He was only ONE DAY OLD. I hadn't even held him yet.

I would have switched places with him in a heartbeat.

The wait was agonizing. There are no words to accurately describe this. I cry today just thinking about it.

And while we waited, we did the craziest thing. We ordered pizza (this is New Haven, CT after all). Lots of it. And we all crammed into my hospital room, me in my bed, my family all around me, Jeff sitting by the phone. And we ate. And we joked. And we laughed. I laughed so much my incision hurt.

We didn't talk about Patrick.

Finally, I said it first: "This is taking a really long time, isn't it?"

"No news is good news", one of them said to me.

Then shortly later, the phone rang. My husband Jeff answered it. His face was very serious as he took in the details. And then he casually gave a 'thumbs up'.

And we cried and cried and cried. My mom and sister came right into my bed and hugged me tight. Patrick had survived this procedure... I couldn't believe it. One prayer answered; many more to go.

Patrick had the best Medical Team in the world.
We had Gennarro's Pizza.

This was only Day 2.

1 comment:

  1. Stumbled upon your blog through a comment on Kelle Hampton's blog. You and your family are in my thoughts and prayers!