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?