Everyone's Got a Story.

Ask anyone you know where they were when the first plane hit the towers on 9/11.
They've got a story. 


Or ask where they were when they heard Kennedy had been shot. 
There's a story. 


Ask any bride-to-be to tell you about the day she became engaged. 
There's a story. 


Ask any parent about the day their child was born. 
There's a story. 


It is in the telling of the story, that we are healed. Comforted. We can relive the joy - and sometimes the sorrow. Retelling the story connects us to the events and brings us back to those moments emotionally.

If anyone asks me about the day our oldest son Luke was born, I can joyfully recount each and every detail of that warm, sunny Wednesday in May 2006. A C-Section scheduled mid-day allowed Jeff and I plenty of time that morning to pack our things, tidy up the kitchen, water the plants, double check that the coffee pot was turned off and the porch light turned on. We leisurely drove to Norwalk Hospital, enjoying our final moments together of being just Two.

We had only one task to finalize: what name would we give this baby boy, we would soon get to meet?

We were down to 3 names ~ Ryan, Luke or Matthew. We had settled on a middle name weeks earlier - so we repeated the names again and again... and finally as we arrived at the hospital, we settled on his name: Luke Charles.  Over and over again I repeated his name in my mind. Luke Charles Anderson. Luke Charles Anderson.

I liked it. This would work.

The events of Luke's birth rolled along beautifully . . . I walked myself into the OR at 1:00 p.m., and at 1:25 p.m. arrived our beautiful, 9 lb, 2 oz., almost 22 inch baby boy. 


Luke Charles Anderson.  


He cried the most beautiful cry I've ever heard -- loud, and powerful. . . And I cried too. Quietly. Joyfully. Amazed at how much I loved him from that very first moment. They bundled him up and Jeff held him next to me, and we were in awe. We were now Three. It was perfect. 

Fast forward three and a half years. 

The day was cold and gray. January in Connecticut. The post-Christmas bliss was wearing off and the doldrums of winter were quietly settling in. I was 33 weeks pregnant. I'd been officially on bedrest for 6 days. 6 LONG days. 

Sometimes I feel guilty when I look back and I am sad as I recall the day of Patrick's arrival. It was all so uncertain. So frightening. So scary. So freakin' scary. It seems so wrong, but I was so terribly scared on that cold, gray January day -- the day that this beautiful, miraculous, strong baby was born. 

But what I find so interesting is that this year -- much like last year -- our conversations always wind back around to the day of Patrick's birth. My mom and my sisters remember my constant updates from the Labor & Delivery floor-- my emails and texts, updating them with the latest ultrasound results, the latest conversation with the doctors.... they can remember my frantic call telling them I was going to be admitted 'for observation'.. and my total preoccupation with Luke... I had kissed him on his way to school that morning, with the assurance that I would see him at dinnertime. Never did I imagine at 8:00 that morning, that this baby would be born at 4:20 pm .... I still had 7 weeks to go...


As Patrick's birthday arrived this year, once again, we all seem to gather together and retell the stories from that cold, gray day... from the day the most amazing child was born.... I love to listen to everyone else's stories. 


Jeff remembers and retells the story from his perspective: being with me at the hospital all day, and then the sudden decision to deliver the baby today... Jeff remembers me kissing him, and I walked down the hall with the 'team' to the OR,... and Jeff went to a waiting room alone, praying and praying and waiting... alone first, and then with my sister Erin, for the news of Patrick's arrival. 


Erin's account . . . of being at work, receiving my texts and emails, and then rushing from her office, and driving 40 miles to Yale. And she remembers vividly being with Jeff for these gut wrenching, reports coming from doctor's and nurses. 


My mom and dad's account of receiving my phone calls, of rushing to the hospital, of seeing Patrick for the first time in the ICU... of waiting for me to wake up from general anesthesia... and, too, the account from our beloved babysitter, Helen... She was with Luke that day 2 years ago... and still takes amazing care of these two little guys today. Helen remembers picking Luke up that morning to take him to school, and promising to keep him with her until whenever Jeff and I returned home.... she remembers receiving the call from my dad that I wasn't coming home, and that Luke's baby brother was going to be born on this very day... 


So, you can ask anyone in my circle about the day Patrick was born, and they've got a story. A story indeed.


I can't wait to tell these stories to Patrick someday. I can't wait to tell him what an amazing, precious, miraculous life he's been given. 


Well, the truth is: I tell him all the time...

With Gratitude.

Jan 6, 2010

May 2, 2010

April 25, 2011

Mother's Day, May 2011

Tomorrow, May 5, will mark a year since Jeff and I brought Patrick home from the hospital, after 120 days. It seemed surreal that we had arrived there early one cold, cloudy January morning, and left on a warm Spring afternoon. Those days from January to May were the most trying, the most challenging, the most hopeless, and eventually the most hope-filled days of our lives. 

For me, there is nothing more rewarding, more challenging, more gratifying and humbling, more heartwarming and, sometimes, heartbreaking than being a mother. So, to watch my own child, my newborn baby, lay still, so heavily sedated and totally dependent on machines, medication, and transfusions for such a long time was the most gut wrenching experience of my life.

I felt totally helpless. There was nothing I could do, except keep Patrick company and pray…. (I also busied myself with learning all my newly acquired medical jargon, finding the best spot for cell service in the hospital, and plotting the quickest route from the garage to Newborn Special Care Unit.)

But most of the time, they were brutal days for me, for us. And especially for Patrick. I signed more consent forms for procedures than I care to remember. We met with specialist after specialist, I spoke with Drs in other states, I saw every nook and cranny it seems of Yale-New-Haven Hospital – MRI, Radiation, Interventional Radiology, Operating Rooms… and waiting rooms aplenty.

Because of your prayers, and your kindness to us, those days are behind us.

When Patrick was discharged from Yale last May, he was handsomely sporting his oxygen cannula and feeding tube. He was prescribed six medications, and was on a ‘hospital’ schedule for feedings and meds around the clock. We quickly worked to adapt him and his schedule to fit in with a family that sleeps at night (this took MONTHS…)

Today, Patrick is almost 16 months old. He no longer uses a feeding tube, or oxygen. He is off all but one of his medications. He’s got lots of teeth and is recently discovering a love of Haagen-Daz milkshakes, along with his usual regimen of avocados, bananas, custard, Cheez-doodles and Chobani yogurt.  He is crawling everywhere, and pulling himself to kneeling and standing. He is opening cabinets and doors, and is obsessed with buttons on TVs and DVD players. 


He still receives physical therapy twice a week, and I take him to a private feeding therapist every other week. But he's doing great. 


Patrick's smile lights up the room. He greets us readily with “Mama” and “Dada”. He gives kisses abundantly, and when you ask him “Where is the cute baby?” he tilts his head to the side and smiles… He points to things he wants, proclaiming, “Dat!”.  He loves to play with the TV and wii remotes, and if I'd let him, he'd chew on my iPhone. 


And, when his big brother Luke enters the room, he laughs with his mouth wide open, with that smile that could stop you in your tracks.


He is a joy-filled baby, and he spreads his joy every where he goes. 


He is our miracle for sure. 


We’ve come a long way through this year. And we couldn’t have done it without you.


We are forever grateful.

Love,

Rachel, Jeff, Luke & Patrick

Believe in Miracles.

Just one week from today, Patrick will be celebrating his First Christmas.

A year ago at this time I was receiving weekly ultrasounds at Yale with world-reknowned Maternal-Fetal Specialists, trying to figure out why our baby's neck looked 'a little swollen'. And each week I would try so hard not to jump to the worst case scenario. But, gosh that was hard. Impossible. Google became my worst enemy.

As you might imagine, I've been thinking non-stop about last December's Christmas too. How, at that time, I was imagining what this year's Christmas would be like, with two children. Wondering how Luke would be faring with this new baby in his life. Wondering if Luke would be over-the-top excited about Santa. Wondering if Luke would still feel extra-special, even though we'd have a baby in our midst who would need to feel special too. I wondered how I could possibly love another child with the same magnitude and depth that I love Luke. And, I wondered what our new baby would be capable of doing by the time Christmas 2010 rolled around. Would he be crawling? Maybe... Walking? Doubtful, but you never know...

Never in all my imaginings did Christmas look like This. Nor had I expected to spend the first 1/3 of 2010 camped out in Newborn Special Care, staring into an isolette, wondering from minute-to-minute, day-to-day, what would become of my Little One. Wondering how he would -- how he could -- ever find his way out of this. And in those days, I couldn't even look toward this Christmas; sometimes I could hardly imagine the next week.

As this week unfolds, and Luke's excitement reaches heights never before seen, and my patience often reaches lows I'm not proud of, I am making a promise to myself.

To slow down. Enjoy these moments. And keep a watchful eye on the magic of this season.

Miracles are happening all around us.

Breathe. Exhale.

I knew once I went back to work it would be hard to keep up the blog. I figured I could jump in here at least once a week, but lo' and behold, it ain't happenin'.

First, let's clear away the mundane. Since my last post:

• We've celebrated Halloween
• Luke has had at least 3 colds/coughs
• I've had bronchitis
• and, most importantly, Patrick has survived his first cold like The Champion that he is.

Patrick is still receiving weekly therapy for feeding and we are finally seeing some improvements. He's eating about 3 tablespoons of puree at each sitting. It amounts to maybe 1 container of baby food in a day. Its not a ton, but its a lifetime high for him, so 'Go, Patrick Go!' Most importantly, he is enjoying the tastes & the textures, which is remarkable all on its own.

Now, onto more pressing matters.

Thanksgiving is approaching faster I can say Turkey and that means only one thing: Christmas will crash upon us in no time. Followed closely by . . .

. . .Patrick's first birthday.

This seems Impossible. Unfathomable.

And all of this is hitting me hard, in ways and places that surprise me.

Like the Parking Garage. Now, you must know, I've been taking Patrick to monthly follow up appointments at the hospital since he was discharged. Everytime we go, I park in the same garage, often on the same level. But lately, when I drive through that curvy entrance ramp of the garage, I am overcome with emotion. And suddenly, the parking garage at the hospital can bring me to tears.

Lately, I find myself remembering that it was just about a year ago when my doctor saw something on an ultrasound that he thought needed a closer, more specialized look, and I started getting weekly ultrasounds at Yale, instead of with my doctor on Westport. And even tonight I can still recall the excitement I was feeling as I approached my last trimester ('the home stretch'), the late-night discussions with Jeff before we drifted off to sleep, dreaming of what we would name our baby. Our girl names were narrowed down to three, and we were equally pleased with all of them. Yet, we didn't have one boy name we could agree on. We used to guess that it must have been a 'sign' that a baby girl was coming our way.

Oh, and the anticipation of Luke becoming a big brother. I used to imagine Jeff bringing Luke to the hospital to meet his baby brother/sister for the first time. I had Hallmark images of how this first meeting would be. And I can vividly remember how quickly that was washed away almost the moment Patrick was born...

Its as if I've been holding my breath since January 6 and I've finally exhaled.

Breathe.

In.

Out.

I am not the woman I was last Thanksgiving. I am not the same Mother, Wife, Daughter, Sister, Niece, Aunt, Co-Worker, Friend or Neighbor.

I have been transformed because of Patrick, and for Patrick.

My faith has been challenged, and strengthened.

My relationships have been challenged, and strengthened, also.

My priorities have been reordered, and clarified.

My tolerance for nonsense has dramatically diminished, and my compassion has increased ten-fold.

With Thanksgiving just one week from today, I am overcome with the fullest and most intense feelings of Gratitude I have ever experienced in my 40 short years. I am at a loss for the right words. But I know for sure, I am abundantly blessed.

No Tube Today.

OK. I will make this short and sweet.

We saw Dr. Freedman yesterday. He's awesome. Super Duper Awesome. He's great with Patrick of course. He's got an incredible talent for numbers and is on top of every little detail as if Patrick were his only patient. Part of why I love him so much is because he trusts me, and he trusts my instincts. He trusts that Patrick's Mom actually knows a lot about her Little Lovey.

I talked with him yesterday about trying a day without the tube. And he was all for it. He knows that I'm not going to not feed Patrick. I'm not going to let him get dehydrated or lose weight. He trusts me. And that is empowering.

The plan was this: Wake up Patrick at 7 a.m. and give him his medication via the tube. Then remove the tube and let the feeding frenzy begin.

Yeah, right.

Here's what actually happened.

At 2:30 this morning, while I was already up (consoling Luke after his latest in a series of nightmares) I heard a slight cough/gag coming from Patrick's crib. When I checked on Patrick I found him holding his tube in one hand, and smiling from ear to ear.

The tube was out.

We shut the pump off and just let him go back to sleep. We all went back to sleep.

I wish I could report that Patrick awoke, hungry and ready to eat. Quite the contrary.

His visiting nurse was here at 8:00 a.m. for her twice-weekly check up. She helped me give him his meds by mouth which he despised... I tried feeding him a bottle, I tried feeding him solids, I tried veggies, I tried fruits, I tried cereal, I even gave him a taste of chocolate. The reality is that the entire day went by and he hardly consumed a thing. A teaspoon here or there of baby food. A few drips of milk on occasion.

By 4:45 p.m., I replaced the tube and started his feeding.

So disappointing. But all was not lost. Patrick had a delightful day. Played happily (no throwing up! -- his tummy was too empty...), looked adorable sans tube...

We will try it again. Soon. Maybe Sunday.

I'll keep you posted!

To Tube, or Not To Tube.

That is the Question.

Earlier this week, Patrick pulled out his NG Tube. Its not the first time this happened, for sure. But as he gets older and bigger, it becomes more challenging to keep that tube firmly taped to his cheek. He's busy these days, exploring everything he can with his new found friends: Fingers and Hands. So, it doesn't take much for him to grab a hold of that tube and just keep on tugging. Which, apparently, is what he was doing as he laid so quietly in his crib after a nap.

Tug. Tug. Tug. Voila! It's out!

There was a time when this would have sent me into a tailspin, but honestly, now its not the end of the world to put the tube back in. Don't get me wrong, I sure don't love doing it. But its just a part of taking care of him that Jeff and I have had to get used to.

[Sidebar: To replace the tube, I have to swaddle him tightly (to lock down his annoyingly curious comrades: Fingers and Hands), then push the tube in his nostril, all the way down to his tummy. Of course, he's no happier about this than I am, so its all done with the lull of his screaming in the background -- understandably, though.... I can only imagine how uncomfortable it must be. Once the tube is in place, we have to check placement by pushing a little air in through the tube (with a syringe) while listening to his tummy through the stethescope. There is a distinctive "whoosh" sound that is heard. When you hear that air "whoosh" into his tummy, you know you've done it right. Then just tape that tube to his cheeck, and you're ready to roll.]

So, where was I?

Oh yes. To Tube, or Not to Tube.

After Patrick removed his tube, Jeff and I decided to leave it out for a few hours, since Patrick was not due for another feeding for awhile. We thought we'd just give him a break. And, I just couldn't get over how different he looked without having the tube taped to his cheek.

More adorable than before. (Albeit, serious!)

Throwing caution to the wind (and calling on friends and family for some more of their prayer power), I mixed up a bottle for Patrick and brought this Little Lovey upstairs. I sat with him in the rocking chair. The lights were dim, it was quiet and relaxing. And I put the bottle in his mouth.

And he drank from it. He drank almost an ounce -- nonstop.

Then he fell asleep.

It was so normal. But not for Patrick. This was a B-I-G DEAL for him.

We would have left the tube out all night, but because he was so sleepy I just couldn't get him to drink from it again. So, in went the tube. Again.

So the working theory is this: When Patrick swallows, the NG Tube bumps the back of his throat, therefore making swallowing so uncomfortable, he prefers not to swallow at all.

I'd like to try a day or two without the tube and see how much he will drink in a day. But, I'll consult the pediatrician before I make such a drastic move.

Luckily, our next appointment is this coming Thursday. It will be The First Question on my list.

I hope you'll stay tuned. :-)

I'm back, and I'm staying.

I'm not sure where the last 5 weeks have disappeared to, but suddenly, Summer has turned to Fall... Luke is back in school, we cleaned out our basement, had a tag sale, I turned [gulp] 40, and I have a firm 'return-to-work' date (October 12).

I didn't mean to be away for so long but I guess the end of summer kept us busy.

Here are a few updates:

Patrick continues his weekly therapy and is continuing to make small steps forward. He is eating about 3 -5 teaspoons/day of baby food. He's a BIG fan of the apricot/sweet potato combo by HappyBaby. The progress is still so slow, and I continue to feel frustrated by this so much of the time.

Thanks to the ng tube, Patrick's weight gain has picked up again and as of yesterday he weighs 16 lbs, 14.5 ounces. He's gained almost 6 pounds since coming home on May 5. He is outgrowing clothes almost as fast as I can stock the drawers and I love it! He is wearing everything Luke once wore and I so enjoy digging out the next bin of hand-me-downs and remembering Luke in many of those pjs and sleep sacks and whatever else turns up.

As for his physical progress, Patrick is rolling nicely from back to tummy, he's got great head control, and he's just learning to sit up, propped on his own arms but, honestly, he's really not good at it. The smallest distraction and he topples right over! He's grasping and raking objects with his hands.

Luke, Luke, Luke! Luke started school last week - his last year of Nursery School. This year he is going 5 days a week and he loves it! He was so disappointed last Saturday morning when we told him there was no school for two days. TWO DAYS?!?

Monday couldn't come fast enough for him. He left the house yesterday morning with bells on. His teachers are amazing this year; currently they are doing a unit on butterflies. They have caterpillars, and milkweed and chrysalis in their classroom and when he came home yesterday he told me that two of them had become butterflies, and this morning they set those 2 free. I am amazed at the detailed reports Luke gives us. He is a sponge!

OK. The Birthday. 40. Forty. There's no nice way to write it, or say it. But, my celebrations have been wonderful and having digested this number for about 5 days, I finally feel ready to embrace it! Friends are telling that this will be the best decade. I welcome your feedback on this...

Most significant this month, though, is that we have finally crossed an important "line".

Patrick has finally been home longer than the amount of time he was in the hospital.

This makes me smile, inside and out.

(Pictures to follow by week's end!)

Feeding Therapy: Week Two.

I took Patrick back to the Feeding Therapist yesterday. It had been 10 days since our last visit. She was pleased with Patrick's 'progress' and she applauded my efforts during the week. The exercises we do with him are oral stimulation: gently brushing his gums with a soft brush, dipped in water, or milk, or thin oatmeal. She said that the first week we were there, he didn't know what to do with his tongue (he just flip flopped it all around), but yesterday she said Patrick was actually moving his tongue toward the brush with milk or oatmeal when it was placed in his mouth.

Yay Patrick!

I, however, continue to be frustrated. This is s-l-o-w progress.

So, weekly therapy continues.

Also, today marks one week since we modified Patrick's feeding schedule. Previously we had been feeding him 6 times a day, but with each feeding taking an hour and a half, he was spending 9-10 hours a day just being fed. It made it very difficult for us to play or go for a walk or run any errands. We have been tied to the feeding pump.

Until now.

The new plan is that we feed Patrick continuously overnight. From 10pm-7am, he receives a continuous, slow flow of milk. During the course of the night, he receives 10 1/2 ounces of milk... all before dawn!

Then, throughout the day, I feed him only four times: 9a, noon, 3:30p, 7p.

Free at last!

Seriously, it has made for a better week. Lots of time to get out, take Luke to the sprinkler park at the lake, visit family and friends....

I pray that this new arrangement will also give Patrick some room during the day to feel hungry...and perhaps, be a little bit motivated to eat/drink.

Hey, a girl can dream can't she?

Feet and Thumb.

Patrick has made two fabulous discoveries this week.

His feet. And his thumb.

Who needs toys when you have feet and hands?

Happy 7 Months.

Dear Patrick,

You are seven months old today. And I am amazed - awestruck - by you and all you have accomplished in your seven long months.

Seven months ago I never imagined we'd get here. Yet, here we are.

Seven months ago I looked at you, studied you and wondered how you would ever, could ever, pull yourself out of the turmoil you arrived with. It seemed insurmountable. Oh, how I longed to hold you, to take it all away.

Six months ago I looked at you, surprised that you had made it to the One Month mark. It seemed like I'd been given a gift. It was miraculous, and yet you were still so critically ill. Around this time, your kidney function was improving and you were beginning to lose significant amounts of fluid, which helped your respiratory status. But then you developed a blood clot in your liver, and your bilirubin levels climbed higher than they had ever seen before. Doctors talked to us about you possibly needing a total blood transfusion (exchange transfusion) to protect your brain. It would have been so risky for any baby, but for you, even moreso given your unusal circulation and the vascular mass in your neck. It was so scary. Your skin was nearly black from the three weeks of 24 hour phototherapy, and the high bilirubin. Yet, somehow, after weeks of phototherapy, your bilirubin started to creep down.

February

Five months ago we were faced with the difficult decision to treat you with radiation. The youngest person to be treated with radiation at Yale, you were barely two months old. We met the most kind, wonderful, compassionate people at the Smilow Cancer Center. Dr. Kenneth Roberts is etched forever in my mind.

March

Four months ago, I started to see the light at the end of the tunnel. You were off the ventilator, you were just using a small amount of oxygen through the nasal cannula. You were finally shedding equipment and tubes and wires and ivs. It was actually becoming harder for me to leave you every afternoon because you seemed less 'sick'.

April

Three months ago you came home from the hospital. Greeted at home by your grandparents, aunts, uncles, friends. Your faithful visitors who came to see you at the hospital weekly, or even more frequently. Your arrival home was exciting and scary all at once. It was the moment we'd been waiting for -- since January. And here it was, May 5. You were still small -- only 11 pounds. With your oxygen cannula, feeding tube, all of this new equipment. And medication galore. I had no idea how we were ever going to manage all this, but we did. We still are.

May

Two months ago, you were already making strides and improvements. No longer requiring the oxygen. Gaining some weight, although not quite the amount your doctor wanted you to, but you were moving in the right direction. You were, and still are, receiving twice a week visits from a nurse, two home visits per week from therapists (physical and occupational), many doctors appointments.

June

Last month, you actually went on your first vacation. Can you believe it? We went to Cape Cod, of course. We love Hyannisport, and you will too. We go every summer, no matter what. We eat lobster, and chowder and ice cream and go to the beach and play scrabble and watch movies. And we do it with Grandma and Papa, Aunt Erin and Uncle Greg and Lauren, and Aunt Lexi. Its one of the best weeks of our year.

July ~ Cape Cod, with Grandma

And so today, once again, I'm reminded of what a miracle you are, Patrick. Just look at your progress. My faith is renewed. You have walked a long journey already. I pray that it only gets better from here, although I can't help but worry. I worry about your next platelet count. I worry that your physical therapy does the trick and you get 'caught up'. I worry. I do.

But there's something special about you Little Lovey. Something really special. And that makes some of the worry melt away.

Happy 7 months Little One. I love you more every day.

Love,

Mommy

Today

No Magic Bullet.

I'll admit it.

I was hoping for a Magic Bullet.

I thought, maybe, just maybe, the high priced, private pay therapist would have The Answer to solve Patrick's Feeding Riddle.

She has the answer. But its not quick. Its another chapter in my growing book titled Slow But Steady Wins The Race. What ever happened to sprinting?

Here's what she did have. Patience. Thirty-plus years of experience. A calming effect on Patrick. Her patients range in age from 4 months to 13. Her 'graduates' come by to visit her, with donuts and coffee, bagels and tea. And she's got every bottle, sippy cup, straw cup, spoon, toothbrush, and feeding seat imaginable.

In 90 minutes on Monday, we learned more than we ever cared to about swallowing and texture and gram weight of food and gag refluxes. She is a wealth of information.

She has a therapeutic course of treatment that she says works. She taught Jeff and I the first step, beginning with oral stimulation. We use a soft brush along Patrick's gums, first with water, next with milk, last with baby oatmeal. The entire 'routine' takes 7 minutes and we are to do it at home three times a day. So I've now added that to my list of things to do with Patrick during his awake windows, along with his neck exercises, tummy time, bathtime... We are a busy duo!

So will it work? I have no idea, but for $130/hour I sure hope it does.

We go back next week.

I'll keep you posted.

Everything has a Cost.

I think around the time that Patrick was a week old, one of the neonatologists said to me, quite bluntly: 'Everything we do here has a cost.' She was explaining to me that every intervention they provide in an effort to save Patrick's life also has undesireable side effects.

Prolonged mechanical ventilation, while lifesaving, actually causes lung damage.

Pain medication results in dependence on those meds.

Radiation can cause growth problems and possible secondary cancers later in life.

Steroid treatments can lower one's immunity, raise blood pressure.

Diuretics can create electrolyte imbalances.

All of those 'costs' seemed expected, unavoidable, necessary. But the one treatment I never paid much attention to was his feeding tube. Because Patrick was on a ventilator for so long, he had a nasogastric tube placed so that he could receive his feedings. Its a very skinny tube, about 20 inches long that is inserted through his nostril and is pushed all the way down into his stomach. Milk is delivered through the tube.

I love this picture.
Whatcha thinking Patrick?

I assumed that once he was taken off the ventilator he would just start drinking from a bottle.

BIG assumption as it turns out....Patrick still refuses to drink from a bottle. He barely will accept a tiny taste of pureed fruit on the tip of his tongue.

From the moment he was born, he was intubated so he never had the opportunity to suck on a bottle. He does love his pacifier -- he will suck on that thing for hours! -- but he does not have the coordination to suck-swallow-breathe. Its essential for bottle feeding, and he doesn't have it.

He is tube-dependent. Because we feed him through the tube six times a day, with each feeding taking over 90 minutes, he is never really hungry. He has no drive to eat, to satiate.

When I put a bottle in his mouth, he usually just gives me a big, wide happy smile... and all the milk runs out of his mouth, down his chin. His tongue flip flops all over the place. He is totally disorganized.

IF -- and that's a big IF -- any milk happens to find its way to the back of his throat, the poor little guy gags, panics and usually throws up. I feel so bad for him. We've tried every kind of bottle imaginable. Nothing works.

We've also been trying small amounts of Stage 1 fruit. He will take a tiny tiny amount on the tip of tongue, flip flop it around and eventually swallow some. But a teaspoon could take 30 minutes or more.

So tomorrow we are taking him to a Feeding Specialist. She is a Speech/Language therapist, specializing in oral/motor feeding therapy. The therapist comes highly recommended from our pediatrician as well as from a few nurses at Yale. I am praying that she can offer some help to Patrick.

I'll keep you posted!

Lucky.

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.

Lucky?

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.

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.

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.