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!