Friday, December 31, 2010
Saturday, December 18, 2010
Thursday, November 18, 2010
- 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.
Friday, October 8, 2010
Sunday, October 3, 2010
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. :-)
Tuesday, September 21, 2010
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).
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!)
Friday, August 13, 2010
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.
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.
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?
Friday, August 6, 2010
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.
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.
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'.
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.
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.
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.
Thursday, August 5, 2010
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.
Sunday, August 1, 2010
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?
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!
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
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.
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:
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
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.
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
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.
Patrick and I kept each other company.
We held each other's hand.
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.
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.
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.
Monday, June 14, 2010
Apparently I've just started a blog. Really? I can't help but wonder if anyone -- maybe my family? -- will ever read this.
Blogs have always intrigued me...Who are the Bloggers? I've assumed forever that Those Who Blog are brilliant, articulate, fascinating, creative people who catch their readers' attention with their very first verse (follow Kelle Hampton for awesome photography and beautiful words; Please read her Birth Story of her daughter Nella). . . or with an awesome photo of their oh-so-cool dog. (Heather Armstrong )
What I've learned is that The Blogger isn't just a Guy. Or a Girl. Or a Dad or Poet. Or an Expectant Mother. Or a Co-worker. Bloggers are Storytellers. And we've all got a story worth telling.
I know I do.
I recently gave birth to quite a Story. His name is Patrick.
He is my most Amazing-Brave-Strong 5-month old baby boy who spent his first 120 days at Yale-New Haven Hospital fighting for his life ... And he won!
And, Patrick has got an older brother that keeps me hopping. Luke is my spirited, witty (and wordy!) 4 year-old who is full of questions, insight, humor, mischief, non-stop chatter and lots of wonder. [Here is Luke a few weeks ago on his 4th birthday, enjoying his favorite dinner: Scrambled Eggs & Bacon.]
I can't wait to share them with you.