Wednesday, July 28, 2010


I'm not proud of this, but during those first few weeks of Patrick's hospitalization, I spent a lot of time wondering why this baby had happened to me? I rarely shared this thought process out loud with anyone, but it seemed I couldn't rid my mind of these questions . . . Was I greedy to have expected that I'd have two healthy children? How is it fair that some families can have three, four, five healthy children and I just wanted two? And how about all those people who have kids and they can't even take care of them? [I became very 'judgy'. Again, not proud.] Had I somehow deserved this?

And then in an effort to make me feel better, I heard this a lot from some well-intentioned people: God doesn't give you any more than you can handle.

I never found comfort in that thought. Sure, I was handling it, I had no choice. But I sure as hell would have preferred a different situation. At any moment, I could have named 1,000 things I'd rather be handling.

But I wasn't given a choice. This was my baby and I wasn't giving up. I sat by Patrick's bedside, learning the language of Medicine, admiring the Grace of nurses, the vast knowledge of the physicians. Watching the room buzz with activity when a new Little One was born and brought into the Special Care Unit.

Out of nowhere one day a nurse I hardly knew said to me: Patrick is so lucky to be yours. He's really lucky to have you.

She stopped me in my tracks.

I looked at Patrick, with all of his 'accessories': ventilator, chest tube, central lines, catheter, ng tube, monitors.


I had had it all backwards. I was consumed with my own place in all of this. My own life getting flipped upside down. And it wasn't that I hadn't been thinking about Patrick -- of course I had. But I was so focused on how his arrival was changing my perfect little life. I hadn't stopped to consider the flip side. What if he had been born to another family? A family that couldn't/wouldn't/shouldn't take care of him? A family that didn't live so near to a world-class medical center? A family that would give up on him?

Maybe he was Lucky. But it seemed tough to pin that adjective on him. He didn't look Lucky. He looked like he'd been dealt a raw deal. And it seemed so unjust. So wrong. The antithesis of Luck.

But that was months ago.

Today I feel blessed by this child. So very blessed and proud to be his mother. I gave birth to this Miracle, and that fills me with joy, and pride. Patrick has taught me that patience does pay off. He has taught me that Life is immensely powerful, an unstoppable force. I have witnessed first hand that the human body has an incredible ability to heal -- physically (Patrick's), emotionally & spiritually (mine).

In less than seven months, I have learned that prayers do get answered.

Without a doubt, I am the Lucky one.

Friday, July 23, 2010

Time for Two.

Today turned out to be the perfect Icing on this week's Cake. It was a fabulous day. It was simple, uncomplicated, normal.

Rewind for a minute to the earlier part of the week: Luke started a new week-long camp, Patrick had two doctor's appointments, two visits at home from the visiting nurse, three therapy appointments, along with the usual matters of grocery shopping, cooking, pumping, feeding Patrick (ng tube feedings are a Royal Pain - save this for another post), neaten-ing (I don't even pretend that I'm cleaning: I'm just straightening up piles, or shifting them from one surface to another), time to myself (ha!), catching up with my husband (ha! ha!)...

In truth, by the time I went to bed last night, I felt like I'd been going non-stop since Monday morning. And when I woke up this morning I was still tired, but grateful that in just 10 hours, Jeff's work-week would be over and he'd be back here in the Nest. I just had to get through the day.

And much to my wonderment, the day was full of surprises. Best of all: nothing was rushed.

After a visit from the nurse (Patrick weighs 13 lbs, 15.5 ounces!), and while Luke was still at camp for the morning, I gave Patrick a bath. It was leisurely. Patrick was happy to kick his feet and splash around and look out the window. I was happy just to watch him. It was one of those rare moments for me, when the world around me falls away and I was just there, in that moment with Patrick. I wasn't worrying about him, I wasn't plotting my next move, I wasn't making a grocery list in my head. I was just there with him, and he with me.

And it was wonderful.

Is there anything more delicious than a baby right out of the tub?
I think not!

And like anyone would do after a nice long warm bath, Patrick took a nice long morning nap. Leaving me to do . . . nothing.

And it was wonderful.

I drank anther cup of coffee, sitting on the couch, in the quiet. I didn't check Facebook. I didn't play Words with Friends on my iPhone. I didn't watch my many recorded episodes of the Barefoot Contessa. I sat still.

Later this afternoon, while it was raining and Luke was 'relaxing' on the couch in the living room (code for: I don't want to take a nap in my room, but I'm really too tired to do much of anything), and I was in the kitchen, this happened:

Hey, Mom?
Yes, Luke.
Want to come and snuggle with me?

How do you turn that down?

True to form, Luke lasted all of five minutes in snuggle-time; so we decided to play a few rounds of CandyLand.

The miracle of it all? Patrick quietly napped. Luke and I were uninterrupted. A rare moment for us these days. I treasured it.

It was wonderful.

Sunday, July 18, 2010

Meet Luke.

I wish I started this Blog four years ago, when Luke was a tiny little baby, boldly achieving all of his 'firsts' and I was a casual bystander, documenting it all as it happened, in Real Time. At a time when I knew how old he was, right down to the number of days. When I only had him to pay attention to... to love... to hold... to hug... to do laundry for...

It seems hard to tell the Luke Story from this vantage point. He is now a boy. A bona fide Boy. He runs with ease. He plays independently. He tries to tell jokes. He sings. He dances.

He's a bit of a character.

He has a best friend -- his cousin Lauren.

Here they are on vacation in Cape Cod together a few weeks ago.

Here they are last summer.

Crabbing & Baking

(on different days...they were not baking the crabs)

He enjoys watching our tomatoes and herbs grow in the garden. He has a great laugh. He has a smile that fills my heart and a hug I can't get enough of. He is imaginative. And a tad compulsive. He likes to sort things by color and organize things in straight lines.

But these days, mostly, he talks.


I'm not even exaggerating. To be truthful, it can be downright exhausting. No one stands a chance. Finishing a sentence -- even a thought -- is next to impossible.

Like all parents I'm sure, I couldn't wait for Luke to utter his first word. Careful what you wish for! He has more to say to me in an afternoon than I have to say in a week. He drives us all a little crazy, but a lot of the time, he is interesting. And interested. He wants to know everything. His most used words are: I, ME, BUTMOMMY, and the best of all: WHY.

Why do sharks live in the ocean and not the lake? Why can't I walk alongside the car while you are driving, Mommy? Why do I have to clean up my own messes? Why don't people clap after each song at church? Why can't we stay on vacation in Cape Cod forever? Why do I have to listen to other people talk?

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.