Cage Fighter and the Balloon Lantern

How will this rainy day go? Who knows? All I do know is that I have been up since 5:45am. Noodles is now finally asleep (with his STYLISH hand splints on). Sundays are his days off from the eye patch but not from his hand splints! Nate has already watched Scooby Doo and wrecked his train table. He's smashed his face against Noodles' affectionately...there is only so much laundry I can wash...and so now we've also done a balloon-lantern-art project. When it dries he'll get to pop the balloon, place some sand in it and I'll put a tea light in it. Is it nap time yet?


Cage Fighter


Rainy Day Art Project


Paper Mache Balloon Lantern

All I know is that this is my life these days. A combination of exhaustion, aching body, aching heart, giving in, resistance, and gratitude all interrupted by pick-ups and drop-offs. I have all three of my boys surrounding me today. They all need me in a way that someday they won't.

Love this...

LJ yanked his NG tube out last night before his bath. We took it as a photo opportunity! Plus we wanted the world to see his smiling eyes. And face. If that's not his way of telling us he's relieved to have a break from it for a spell then I don't know what it!

And as for the bread chronicles, we had an off week. I must have been asleep when I made the dough this morning, because I forgot the eggs. Whoops. Nate didn't seem to mind. He told me his dough strands (there are 6) were called "roller coasters". Then he proceeded to make his bread into a "zipper". Meantime I have to concentrate really hard to braid the 6 strands and all he does is come in and scrunch the roller coasters together and his turns out beautifully. The result is almost like an epi de ble (for all you food snobs). He proclaimed my bread looked different than his bread at the end. Very astute that boy.
.

Foolishness

"I must learn to love the fool in me--the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries. It alone protects me against that utterly self-controlled, masterful tyrant whom I also harbor and who would rob me of human aliveness, humility, and dignity but for my fool."

-- Theodore I. Rubin, MD

"Real" Breakfast

The pictures of the boys above were taken by mommy just before they both conspired to have a middle of the night party. Usually there isn't much time for a "real breakfast" during the week. But this morning we had the "go-to" breakfast of the moment. The freshly baked challah is pretty excellent stuff! The fragrance of it toasted with Aunt Joanne's homemade peach jam still lies in the air. As I relished the peach jam, sadly we have to wait several long months for the real deal. But since daylight savings is tomorrow at least we know Spring is here! And who knows what will be next for the bread chronicles, brioche?

Have I told you I'm desperate for green. And fresh food (daydreaming about our CSA farm share). I think today it's time for the boys and I to plant some flowers. Some day I will stop being so lazy and FINALLY plant a vegetable garden. Meantime, it's beautiful here. I hope the sun is shining where you are.

Friday, I'm in Love

After a week of stress, anticipation and feeling rundown, everyone woke up (albeit at 5:30am)today in wonderful spirits. We have all been a tad tired (even Nate took his nap sleeping on the floor next to his bed...apparently too tired/cranky to make it all the way into his bed!). We're so ready to enjoy the warmer weather this weekend.

Lewis had a health assessment at the pediatrician's this week- we're working on figuring out why he has such a minimal weight gain. He's just not that into his food still. I tried peas this week but the taste was too strong (my best guess since LJ pursed his lips tightly every time the spoon got near his lips). So we went back to sweet potatoes; and every time he starts to crank a fuss I try distracting him with one of those loud, noisy shaker toys. Two teaspoons is the most he's been able to tolerate. His current stats are: age - 5 months ::: weight - 14 lbs ::: height - 25 inches

Meanwhile, this blog is so good for my soul. We're passed the hardest stage (I hope) and onto where Lewis is beginning to react (especially when I eat his toes and fingers!) and smile a lot more often. So this really feels like a new start. Goodbye gray winter and hello to all my flowers emerging from the ground! Nate is such a great helper (most of the time) with LJ. He has been re-purposing things (Josh's belts, the turkey baster, you name it) into stethoscopes and syringes lately so that he can help "check Noodles' tube".

As for the bread chronicles, we did bake challah again and it's a good thing because I polished off the last piece from the other week just yesterday. We're enjoying the fruits of our labor. The loaves turned out much bigger and fluffier. We'll try and post some pictures later. TGIF.

Safe and Warm

snowmen make us happy...

We actually got a few inches of snow around here! School and everything is else is closed which means we will be baking (salty oatmeal raisin cookies...nummy nummy) and doing lots and lots of projects. But we're cozy.

if a picture paints a thousand words


peeking through Lew's window


in the garden at 6:30am

One Little Snow Day

lenten roses breaking through the snow


the promise of a shiny, happy Spring

It's lovely when you don't have to be anywhere in particular (no offense to LJ's therapists and doctors). Although the charm of all this snow will start to wear a bit thin (assuming it also snows tomorrow as predicted). I could never tire of keeping cozy and warm inside with a hot cup of tea so long as I have my boys to cuddle.

Dough Boys

I've always wanted to make nice yummy challahs for the weekend - think French toast, grilled cheese and the like. But I've had a love and hate relationship with bread making in the past. So the boys and I have decided to start a new tradition to bake our own loaf each week- here are the bread chronicles part one. I'd like to think I've made some progress today. At the very minimum, loaf number one smelled wonderful while it was baking and it warmed up the entire house. It didn't turn out that ugly either! Happy weekend.

umm...umm...good

Nate getting in on the action

little loaf of love

Three Potato Four

While progress on eating is painstakingly slow (sometimes so frustrating that I have come to feed LJ with one hand and pour wine into my glass with the other), all is not lost. I've been trying to get Lew to eat some pureed sweet potatoes mixed with rice cereal. I tried it with the preface that maybe the rice cereal alone was a little too bitter for him. While his eyes light up a little bit, the taters got more love than the rice cereal alone. What a mess it is. First I try getting a little on the tip of his tongue with a spoon. Then I try dipping his pacifier in the mixture to work on his sucking. And last I work with a small pipette dropper full of the sweet potato mixture. He takes my spoon in his hand and flings it all over- in his hair, on his clothes, all over the room. LJ won't sit in his bumbo seat so the bouncy seat will do for now.

Seems that his big brother has given him a cold. He's pretty congested making it harder to work on sucking and swallowing. I would happily give him the entire container of sweet potatoes to enjoy if he would tolerate it. I think eating is definitely his biggest challenge right now (followed by sleeping).

We're getting over a touch of the blues by enjoying the warmer weather. LJ, Nanny and I took a nice walk yesterday. Another first was getting out and inspired by the Baltimore Crafts show. We did really well in the car, and I think living in the moment helped me capture that positive experience. Lew didn't have any major meltdowns (it also helps to have someone sitting in the back seat willing to shake a rattle toy until their wrist starts to cramp!) and he slept most of the way.

We've also been drawing on our energy and learning more about Lew's vision problems. The ophthalmologist thinks the patching has made some progress with his eyes focusing and tracking. But he still prefers his right eye. When his right eye is covered up it takes a minute for him to adjust and use his left eye. It is still turning inward when its not patched. So, we will continue setting trends and alternating the eye patch for the next two months. Surgery is definitely possible. There is a small window of opportunity to improve LJ's binocular vision and if we decide to go the surgery-route the doc wants to do it around 8 months of age. He'll be fine I'm sure. Me, I dunno.

On another note, we started Lew on Reglan for his retching syndrome. Since we discontinued the use of Erythromycin he hadn't been on anything for about ten days. We really noticed an increase with the retching after every feeding. The GI doc had prescribed the Reglan within a few days of his allergic reaction but we were reluctant to give it because of the medication's side effects. Its been known to cause seizures, muscle jerks and jitteriness. After discussing it with Lew's neurologist and pediatrician, we determined that the benefits outweighed the risks. And luckily we haven't seen any seizure activity so far.

Enough of that. Something wonderful and nice that really thrills me is the emergence of Lew's smile this week. Playing peek-a-boo and tickling his chin...making exaggerated eye movements and silly faces. So we're still taking things one day at a time.

Where'd the Weekend Go?

You know it's not the weekend anymore when things seem to be heading down the expected path of normal weekday semi-chaos.

Lew had Speech Therapy this morning with Danielle. Danielle pretty much terrorizes him with pacifiers, bottles and brushes until he cries. Then she says she's sorry and at least that makes LJ's mom feel better. Soon enough he will say goodbye to feeding tubes and eat normal. Can't wait.

Tomorrow we have a follow up visit to the Opthalmologist for his crossed eyes (see pirate picture below). Then Thursday Lew has Physical Therapy. Speaking of physical therapy, we all know what that is right? Well in a nut-shell it means pain + torture. The PT- M-dogg will help loosen his limbs as we chat about once upon a time living in the District of Columbia. (Megan and her fiance just bought a row-house in Mt. Pleasant, DC. I think Lew's favorite part is watching her!!. He's getting some STYLISH hand splints hopefully by next week to help get his little hands out of the fisted position. Last week at physical therapy he fell asleep, WHILE his fingers were being twisted and bent. How does one fall asleep during that kind of pain? How uncomfortable to fall asleep while someone is talking to you anyway.


"what is your favorite rattle toy" Megan the PT asks.
How can he answer that when he's jumping on fluffy frosting clouds in dreamland?? Finally he came back to reality. Megan coos in his face "Were you asleep" she asks
"ummmmmmm" the drool on the activity mat gives it away. Dang.

Must be those late night talks with mom and dad that make him drowsy- he can't help himself, I love him all day and night. We will see what today brings. Now we're off with Nanny and Didi to check out the American Craft Show in Baltimore----I'll let you know if Lew behaves or can't help himself to fall asleep again...or cry the whole car ride.

Teach Me In the Key of Life

I hope Josh doesn't look at this post...he accuses me of getting all cheesy and overly sentimental. But I saw this poem the other day and thought it was very fitting!

Teach Me in the Key of Life
by Mimi Chenfeld

I am waiting for you
I have been waiting all my life
to spend this time
with you.

I am full of questions, adventures, wonder, curiousity,imagination.
I am full of fears, doubts, confusions, nightmares, dreams.
I am the Cowardly Lion. I need a badge for courage.
So do you.
I am the Tin Man. So tight. I forgot about my heart.
How’s your heart?
I am the Scarecrow. Hangin’ so loose my brain feels unhinged.
Does yours?
Sometimes I’m
GrumpySleepyDopeyBashfulDocSneezyHappy.
Sometimes I’m seven new dwarfs as yet unnamed.

I love to sing.
I know the words to 2,437 songs.
Teach me through songs.
Let me paint, doodle, scribble, draw, carve, fix, sketch - DO.
I can’t keep still.
I’m a spaced-out, far-out, Star Wars, Superman, rock ‘n’ roll, disco,
punk, psychedelic, tuned-out, right-on, cool age,
electronic, stereo, video games, computerized, technicolor, ten-speed kid!
I need action!
Keep it moving!

I love to read baseball cards, album covers, TV schedules, movie ads,
license plates, T-shirts, buttons, posters, cartoons, cereal boxes,
recipes, highway signs, historical markers, magazines, picture books,
sad stories, weird poems, animal histories, lost-and-found boards…

Let me ask my questions - even if you don’t know the answers.
Dumb questions, like who started numbers?
Do caterpillars know they’re going to turn into butterflies?
Where does the white go when the snow melts?
Why does time fly?
How do we see?
What do you see?

It’s not my birthday, but every day can’t we celebrate SOMETHING?
Colors, seasons, Tuesdays, Mexico, circles, houses, maps, our names, numbers, one seed, our journals, favorite books, inventions, rivers, peace!
Can we celebrate our country on the fourth of October or the twelfth of May?
We don’t have school on the fourth of July!
Every day let’s celebrate SOMETHING!
Life - the wonder and power and miracle of Life - of being here, learning together, with all our fantastic powers.

Surprise me.
Amaze me.
Startle me.
Challenge me.
Try me.
Laugh with me.
Love me.
Teach me
in “the key of life,”
and I promise I’ll
surprise, amaze, startle, challenge, try, enjoy and love YOU!

Ready, Set, Go!

Mom leaves kid #1 alone for 5 minutes playing in his crib. What could possibly happen? Mom returns. Ok, what did you do with your NG tube? Kid not even pausing to look away from his mobile, NG tube in his hand. That’s my boy! Caught red-handed. I’m getting good at re-inserting it. That my friends slows down the whole getting ready process by approximately a half hour. But alas, I decided to try feeding him without that pesky tube tickling the back of his throat.

Whew, that’s better. The applesauce is back in favor though. We also tried a wee bit of milk from a preemie bottle. Lew is digging his pacifier a little more too (only when he’s asleep…but I’ll take anything). Whilst mom isn’t paying enough attention to kid #2, the entire contents of his toy chest get dumped out on the floor of his room. So there you have a brief glimpse into another day in paradise. Luckily, Didi was there to help wrangle Nate in.

Unfortunately there wasn’t much time and we had to get ready for a doctor’s appointment. Darn NG tube had to get put back in. (Nate reluctantly went to school with Didi)

We met with the ENT doc (I know, perfect timing). He told me that fortunately Lew’s little sinuses aren’t fully developed yet. This means I shouldn’t be afraid of doing any damage each time I have to put in a new feeding tube. He was also quite pleased with his voice box J (guess LJ cried a little cuz it feels weird to have a pointy, cold plastic thing inserted in your ears) All in all, he was and continues to be a very good-humored baby.


THIS is progress


Feed me!


I don’t get it, why does mom put me in this bumbo seat thing?


and just because I thought it was a sweet picture...

It's Coffee Talk.

I got a little girlie yesterday (priorities) and finally had some more "me time". I met my girlfriend Alicia in Georgetown at Baked & Wired for some coffee and goodies. We had fancy coffees with yummy Zucchini Bread and Cardamom Coffee Cake - the servings were quite generous and delicious! I love the fully-leaded stuff, but due to someone's sensitive stomach I stick to decaf most of the time. Anyways, we talked and laughed. (Once again, a gigantic thank you to all my dear friends for your love and support. You really stepped up when Lewis was not doin' so hot) Normally I'd say only a confident sort of guy could frequent this kind of place, but that's not true in this case. If Lew continues to be so high maintenance I just might make this a weekly ritual thereby helping Lew pull it off.

If coffee is not your thing, their shop is packed with beautiful cupcakes and cocoa and chai are on the menu as well. SO GOOD. It's bad enough to spend the morning there, but to blog about it is beyond reprieve, MOM. So to Mr. Fauxhawk I say, sorry hon. I'm really not trying to bring down your cred.

Some Pictures from the Weekend

Can't wait for Spring!

Lounging Around in our PJ's

Yummy Cassoulet - a different kinda penicillin

The artist at work (don't worry, that's my bloody mary)

With a little help from our friends

Some important news updates:

Health
The hives are all gone. They were caused by the erythromycin that he took for the last month or so. Apparently this can happen when one is taking antibiotics for an extended period - they just build up until your system rejects them. Luckily, Lewis was taking erythromycin as a motility agent (to help him digest) rather than as an antibiotic. More importantly, the reaction never got too severe, so time and benadryl sorted things out. The GI doc will recommend another drug later this week. For the moment, Lewis is doing okay without the extra help. He may be retching a little bit more, but it is hard to tell. He is making some progress sucking on a pacifier while he eats, too. Nothing dramatic, but progress all the same.

Meantime, Nate woke up early Saturday morning with a fever. He isn't too sick - probably some type of virus, but it has kept us in and laying low since. Since he had to skip a birthday party and he isn't up to playing outside, he's done some art projects.

Nate's Grocery Bag Art with Handle

Outings
Jenn got both boys out for a walk to the playground in the double stroller (thank you Uncle Jordan and Aunt Kara) on Friday. Noodles did great (with a little extra head support propped around him). On Saturday, Lewis got to go for a walk in the baby bjorn while he was eating - the feeding pump and milk have their own backpack - we'll have to get a picture of Jenn with all that gear on next time.

Hot Date

Somebody commented on one of the posts that the boys are lucky to have Jenn. I couldn't agree more, all three of us. We're also incredibly lucky to have a great support network. Most of you knew us long before Lewis came along. Friday night we got a really special present from some people we know only because of Lewis. One of the NICU nurses wrote us a note a while back, volunteering to stay over one night and hang out with Lewis so that we could catch some rest. We were absolutely overwhelmed by the offer. On Friday we took her up on it. Bridget and Aaron came over and stayed with Noodles (and Nate too).

Jenn and I got to go out. We had dinner at a restaurant in Arlington and then came home and slept through the night. We didn't even worry at all, since Bridget has more experience than us handling all the medical stuff we'd normally worry about. It was pretty much the coolest thing ever.

We were sure that Lewis would sleep through the night, just to spite us, but he woke up several times, as usual, we're told. We didn't hear a thing. :)

My Heart for Yours?

Valentine's Day is not Josh's thing. Of course, I'm crazy about any holiday. ( I love me some presents) I'm thinking "Josh thinks I'm I crazy to be suckered into buying heart-shaped-anything just because it's Valentine's day?" In reality I haven't caved, but I have given lots of thought about my gift to my children. I love them more than what I thought I could love. Both Nate and Lew's world is fresh and new and beautiful. I've come to realize the importance of being present with the boys. I get so caught up in managing the house, shuttling Nate to school and playdates, to scheduling LJ's medical appointments that I forget about the things that bring me joy. What I should be giving the boys is the availability of my mind. I love them with all my heart. I love them more than I know how to say.

I am trying extra hard to live in the moment these days...

I Spy....Hives!

I had just given Lewis the rice cereal yesterday and we were in high spirits. Taking any food by mouth is always great. But, as I was changing his dirty diaper later in the day, I noticed splotches of red bumps appearing all over his body! What?! My first thought was, "Okay, it was probably the rice cereal I gave him this morning." At first I wasn't too worried- just backed off the rice cereal. But by evening, the welts went from small to large, raised hives to swelling up in large masses (with his legs and arms being the worst, even in the creases of his thighs). Poor guy. Okay, now I was really freaking out! Maybe it was the Enfamil Lipil we were using to fortify his milk? Or an article of clothing that wasn't washed in the proper hypo-allergenic detergent? Could we just have a week of good mojo already?

It's very hard to pinpoint, since you don't want to try all the things that could've caused hives, and plunge us back into a new round of hives. We spoke to a nurse last night and she advised us that he might have built up antibodies to the Erythramycin that he's been taking. She suggested we stop giving that to him - not a great option since he needs it for the retching syndrome. I'm praying that it was just a fluke. We saw the doctor today who told me that it takes time for the body to recover from hives, time for the immune system to shut down whatever's causing the hives. For some it could be days, weeks, or even months. And for some chronic cases, years!Terrible, huh?

So for today I was told to keep giving him Benadryl every six hours. Stop the rice cereal, continue the Erythramycin. If the hives don't get better after this course, we go back to our pediatrician tomorrow. There is a possibility that Noodles may need a round of steroids. I really hate to give him steroids because his little body has just had so much in these short four months!

Got Hope?

Hope is the thing with feathers

that perches in the soul,

and sings the tune without the words

and never stops at all...

Emily Dickinson

Lewis is 4 months old today. We marked the occasion by giving rice cereal a try?!@ (we're skipping bottles and going straight for the solids) While I wouldn't say Noodles "ate", it sure was beautiful to watch him lick it off his lips. Plus, he has gained 6 ounces since we fortified his milk last week! So there you have your hope & fruition for the day.

Culinary Adventures

Since yesterday was an unusually warm and sunny day, Lewis and I went on a walk with a friend. LJ seemed to enjoy the fresh air- he was wide awake and looking at the world with his big brown eyes. We didn't have to rush as he was also being fed simultaneously with the pump in the backpack. It made me realize how badly I can't wait for the Spring.

As the hours passed yesterday, Nate got bored (he'd already been to the playground and walked the entire way home). So before the sullen pout with the slow and steady decline into a melt-down, we decided on a baking activity. He flipped through his Pretend Soup cookbook by Moosewood author Mollie Katzen and found ze recipeez for Hide and "Sneak" Muffins. Plus I love an excuse to bake!

They were so easy to make. I didn't even drag out the big electric Kitchen Aid Mixer. Nate learned how to "crack" open an egg- rather he smashed it on the bottom of the mixing bowl. And I had fun fishing out quite a few pieces of shell. We added blackberries to ours. It was quite refreshing to see things made the old-fashioned way too. Plus Nate was very proud of his accomplishment. And Noodles was his little helper...
Here is the end result. They were a huge hit and they actually tasted good too!

sunday a.m.

baby it's cold outside

Today's cold but sunny weather drew us outdoors for a little bit (after occupational therapy which went well). I couldn't resist taking this photo of Lewis and I. And no, those are LJ's little legs sticking out from his baby bjorn...not extra saddle bags on me!

If I could, I would...

....sleep...and make Noodles fully recovered. As cute as he is, LJ is a total nightmare at night. And I have resigned myself to the fact that this could only be the beginning of his transformation into a banshee. He goes to bed at 11:30pm and wakes up at least twice (minimum) wanting to be held and rocked every night. Normally this wouldn't be so bad except he wants to be held standing up- no taking him into bed, no swing, no bouncy seat, no sitting at the computer but standing up and rocking n bopping him for an hour each time. Then, just when I'm in a deep sleep he wakes us up at 6:00am!

He is also not making much progress with sucking (we've tried 7 different pacifiers, a vibrating nuk brush and for some reason he no longer likes his dum dums) and eating by mouth. So much so, that the GI doc is worried about his weight gain (or, rather lack there of. he hasn't even gained 1lb since he's been home). We've made some adjustments after yesterday's visit. First, we're increasing the dose of Erythromycin that Lewis gets to help with the retching. We're also fortifying my breastmilk with extra calories to help him pack on some weight. And over the next two weeks we'll be increasing the total ml from 800 to 850 ml if LJ can tolerate it. Who knows, maybe he'll sleep better!






To help us cope better with sleep deprivation, someone dispensed some great parenting advice recently. That was to do something small everyday for yourself. In order to keep your head together and remember that you are an individual outside your role as a mother/medical caretaker. I'm not disillusioned & I know this is not always possible but I'm tackling a photo journal project for starters- a photo a day. (Nate has joined me and has done an art project a day.) We'll see how I fare!

here's what Nate has left for us all to admire

I raise my cup to ya :: the vibrating nuk brush, risque huh?

the pacifier farm :: syringes, tubes and meds

Brother Love

There there, Lewis pulled his tube yesterday morning. I successfully put in a new tube all by myself since Josh was busy making popsicles at work. [I am the champion!] So I took advantage of the photo opp! Spending more time at home before school and activities we get to see so many more of these moments.

Nate and LJ are developing such a close, lovely, sweet relationship. Nate is protective of Lewis. LJ is in awe of Nate. It's all I dared hope for these two brothers.

the hips don't lie (part III, at least)

Last week flew by so quickly. There are still a bunch of things we are working on. There is a lot to do and we're trying not to get overwhelmed by all the things that need to be accomplished.

We started the week out with an adventure. The whole family including Nanny & Babu went out to dinner down the street at Tap & Vine. A lot of stress that had built up surrounding the adventure, but we figured we could venture out with the support of the boys' grandparents. Jenn took the portable feeding in LJ's little backpack( see below pix). LJ even slept in his sling for a little while allowing her the rare ability to eat with both hands. It was totally worth the hour of preparations getting the equipment rounded up, the kids dressed for the cold, piling everyone into the car and waiting 15 minutes for a table. Things went better than expected and now that we know we can do it, there will be more fun outings!


We also got a second ultrasound of Lewis' hips and with it, good news. It came in the midst of Lewis' first snow/ice storm this week. Unfortunately, Jenn forgot to move the car down our very steep driveway. Luckily Bop and his trusty SUV came to the rescue. He drove us to Fairfax INOVA Hospital for an ultrasound of LJ's hips. (See the original "Hips Don't Lie" post from December and the "Ahoy Matey" post from a couple weeks back). After going back to the pediatrician again, we were given a referral to get a second opinion. This ultrasound was the precursor to our appointment this Monday. The doc who read the ultrasound on site says there's no problem. Hopefully the new orthopedist will agree.

Speech therapy is going pretty well too. The therapist thinks his sucking is a bit disorganized but it's to be expected. She explained that infants learn the suck, swallow, breathe, suck, swallow, breathe pattern. Lewis is doing the suck, swallow and then breathe, breathe, breathe, breathe before he takes another suck and swallow. With practice that should improve. She commented that his whole affect was changed since he has been off the Phenobarb (Did we mention he's off the phenobarb? Maybe that's why he doesn't sleep anymore...). The speech therapist really thinks he is starting to look more and more alert. We are going to be having a joint meeting with a nutritionist soon so that everyone can get on the same page with LJ's feedings. In the meantime our homework for the weekend is getting baby Lewis' fingers in his mouth, getting him to suck on these neat little nuk brushes she's given us, and using a tiny massager to get him used to different sensory things.

We've even been trying to squeeze in a little "me time" in between all the preparations + doctor's appointments + visitors. Of course this is all made possible by our lovely parents who have been helping out. Can I tell you how nice it is to leave the house all by myself? Anyways, I went for a haircut and facial then met up with a friend for dinner tonight. Josh is getting a nice respite tomorrow - going on an overnight hunting trip with the boys this weekend.

LJ's Aunt Joanne and Uncle Jeff will be here for a visit this weekend. And although our "to do" list seems to be growing longer by the minute, we'll be able to tackle it with the help of some free babysitting [hello, grandparents!].

sniff sniff

Josh hasn’t made time to write since last weekend, so I’m stepping in to fill the void. A lot has happened in the past week. Nate has gotten over his barking croup cough and seems to have passed his germs to both Daddy and Mommy. Luckily, Lewis seems to have dodged it so far, but something has kept him from sleeping very well for the last several nights – so we’ve been using any spare time we can find to nap. Aunt Annie and Uncle Danny will be coming for a visit today and Nanny and Babu are coming to help out this week.

We’ve had a little trouble getting into a pattern after the inaugural excitement last weekend. Nate insists that our new President calls him on his cell phone to discuss the state of affairs! Nate is too cute and without any prompting he started drawing the road from our house to the airport to school and to the grocery store (and what road would that be?). I guess art imitates life!

And you know how everyone has a list of things they would like to accomplish in their lifetime? Well we've had many evaluations of Lewis this week. The Arlington County "Parent Infant Education Program" aka PIE had a physical therapist and an early educator come to observe Lewis this past week. The occupational therapist from a private provider has also been coming out to the house to work with Lewis as has a speech therapist. In all these appointments, we've been making lists of goals for Lewis. Things like,"beginning to eat like a typical infant", "learning to walk", "some time together to enjoy each other", "bringing hands to midline", "postural control", "improving visual motor skills" and "learning to ride a motorcycle" (wait, that one is being scratched off the list).

I never thought we'd start this early, but its pretty darn cool to see a little bit of progress. Lewis is beginning to have more head control and he can sit in his Bumbo seat for up to 10 minutes. He loves to follow the sound of Nate's voice and watches his big brother’s every move. Though both eyes are now having problems, Lewis’ eye patch seems to be starting to correct the left eye. And he is learning to improve his nutritional suck when he gets his feedings. There is much hope.

Ahoy, Matey.

Nate picked up Croup on Thursday. It seems like he's been sick more often than not in the few weeks that Lewis has been home. He's on the mend now, but, since Croup is very contagious, we've been trying to keep Lewis and Nate separate as much as possible. Its like two single parent families in one house. Anyways, Jenn tells me that Lewis had quite a busy week and even managed to fit in an appointment with the pediatric ophthalmologist early this morning (Saturday).

Earlier in the week, Lewis had a followup with an orthopedist about his hips. There had been some initial concern in the NICU that he might have some hip problems. After a hip ultrasound and a consult with an orthopedist at Georgetown, he was given the 'all clear'. At least that's what we thought. On the discharge report, it notes that the hips continue to be an area of concern. So Jenn took LJ to the followup appointment earlier this week. That didn't go so well. The doc spent a couple of minutes with Jenn and Lewis and prescribed a pavlik harness, full time for several weeks. No new ultrasounds or x-rays. To date, we've been pretty good about following doctor's orders for Lewis. This time, we're seeking a second opinion straight away. Pavlik's harness was designed by barbarians to torture their enemies. Lewis wore it for two inconsolable hours before we changed course. It is complicated to put on and difficult to adjust. Despite claims to the contrary, you really can't change a dirty diaper around it. We're not about to use it as a prophylactic for a month, just in case.

On a brighter note, speech an OT got started in earnest this week. Now that Lewis is less congested, he's back to working on sucking to develop positive associations while he's being fed. We're already seeing a little bit of improvement in his sucking this week.

As we mentioned in the last post, Lewis' left eye was a concern when he visited the neurologist - it is crossed and not tracking with the right ere. This morning's doctor visit was the first to address that. The eye doc diagnosed Lewis with strabismus. The treatment is to patch the good eye and force the brain to use the eye that is not tracking properly. The good news is that the eye seems to be well formed physically, so there's a decent chance this treatment will correct the problem - he's supposed to wear the patch 2 to 4 waking hours (more or less all day, for a 3 month old) for a month. Luckily, it doesn't seem to bug him too much. We're off to hijack some ships. Please let us know if you have any suggestions for a good pirate name.

Noodles Unleashed!

We've been busy since the weekend and haven't had much time to post. Jenn and Aunt Kara have been taking Lewis all over town to various doctors and therapy appointments. The schedule will get a little bit more sane in the coming weeks, once we get through all of the initial specialist appointments. Thank goodness Kara is here to take care of us this week - three to two is a much more sane ratio of adults to children :)

Last Friday, the heart/lung Doc liked what he saw so much that he decided Lewis did not need to be hooked up to the monitor anymore. In the course of 30 seconds, Lewis lost 5 pounds (it was a heavy monitor - the size of a small laptop) and a bunch of wires. He's down to just the NG tube attached. Here are a few health updates:

• Lewis' left eye has become a concern. Over the last few days, it has stopped tracking as well as his right eye and seems to be crossed. The neurologist that he saw today has suggested we get him checked out by a pediatric eye doctor
• The rest of the Neuro visit went well. The doc definitely felt that Lewis has some deficiencies, particularly on his left side, but he was reasonably positive in his overall assessment and he thinks that we'll be able to wean Lewis from the phenobarbitol (seizure meds) soon too
• Lewis had a followup visit with the surgeon who operated on his tummy today too. The surgeon reassured Jenn that the retching is more or less like burping and not that unusual in this sort of situation. It is apparently more scary than severe. He suggested that we stop the feedings in the middle and "vent" Lewis' NG tube - effectively burping him - for a few minutes in the middle of each feeding
• Speech therapy started yesterday. We're working on getting Lewis to take a pacifier while he is being fed through his NG tube

Finally, we want to thank everyone, again, for being so supportive. Your words, deeds, thoughts, prayers and encouragement have been key. Each day gets us closer to being back to normal. We appreciate your help and encouragement more than we'll ever be able to say. Thanks again.

Oh, The Thanks You Can Thank!

We've been putting off writing this particular post for a while. Maybe we were hoping that we'd suddenly have more time or that we'd figure out just exactly what we wanted to say. Well, the days in 2009 still seem to have just 24 hours. After a lot of thought, we still can't put this in words properly, but here goes.

"Isn't it great that he's out of the hospital?" we're asked all the time. Yes. No two ways about it. We're very happy to have Lewis home. Still, our emotions about the NICU experience aren't nearly as one way as you might expect. Weaving our way through the obstacle course of Lewis' care these last couple weeks, we're frequently reminded of ways that we miss the NICU. I'm sure this sounds a little odd if you haven't been through something similar. We're starting to understand how much we were all being cared for while Lewis was a patient. In a sense, we were in a cocoon that allowed us to worry about Lewis' progress, without worrying about so many other things. We had a place to go where we could focus on nothing but Lewis.

So, to the NICU nurses and staff, we want to say thank you. Thank you for taking such wonderful care of Lewis. Not just great medical care, which he received, but for cuddling him so much at all hours (spoiling him rotten) and for keeping him comfortable. Thank you for advocating for him when we couldn’t be there, for styling his hair, making him drawings, taking him for walks and cooing over him. Thank you for taking care of him as if he were your child.

It wasn’t just Lewis you took care of. Thank you for answering, so patiently, our endless questions and 3 am phone calls. For helping us learn to speak up on Lewis' behalf and giving us so many great ideas to help him. Thanks for finding happy things to talk about with us while Lewis slept, and for sharing little bits of your lives with us. Thank you for turning a cold, sterile ward into a place where we felt at home spending hours with our son.

There are too many of you to mention here, and we don't want to start listing names online anyways. This has been a tough time for our family. Thank you for helping us through it.

Catch 22

We've slowed Lewis' feedings down to an hour again (he was geting 100ml over 1/2 hour, every three hours) and we've got him on a slow continuous feeding overnight. He still gets the dry heaves either late in the one hour feedings or shortly after. He seems to do okay on the continuous feeds. The retching is upsetting to us and looks painful for Lew, but he seems to recover from it very quickly. Jenn got through to the GI doc again today, since the last round of changes didn't help. The Doc decided to put him on Erythromycin. It is usually used as an antibiotic, but apparently also works as a 'motility' agent too. The theory is that his tummy is getting full, since things aren't moving out fast enough. This will either solve the problem, or get things to move through, um...too fast, if you will. If it doesn't solve the problem, we will have to go back to continous feeding for a while and work our way back up. (We'll also may have to do a few extra loads of laundry).

Apparently, most kids in this situation grow out of many of the feeding issues. Only Lewis needs to get enough calories in order to grow, so it is important that we find a solution, shorter term. The GI Doc seems to think this is only a temporary setback, so we're hopeful it will be fixed soon. Lewis got through his 6 pm feeding tonight with no problems, so far so good on the 9. Meantime, he's still getting through his cold, and is too congested to work on eating by mouth at all this week.

Current Events

We've started off 2009 at a furious pace...

• Jenn took Nate & Lewis on their first car ride together to pick up Nanny & Babu (Jenn's parents). Technically, this was before our last post, but worth noting. Both boys did very well in the car.
• Lewis is still having problems handling his feedings - retching either towards the end of the feed or just after. This is the downside of not being able to burp. On Friday, Lewis went to Fairfax Hospital for an abdominal x-ray to make sure there were no obstructions causing the problem. Lewis got the 'all clear'. In the meantime, we're doing what we can to prevent the retching episodes (slowing down the pace of his feedings, making sure he's upright when he eats). When he does have problems, we disconnect the feeding pump and 'vent' his NG tube with an open syringe barrel. Eventually the gas gurgles out. It's no fun for anybody, so hopefully we'll find a solution soon.
• Sometime in the last few days, Lewis caught a cold. He's been all congested and it got a little worse yesterday. We went to urgent care to get a chest x-ray, just to make sure it wasn't pneumonia. All clear again, just a cold. Jenn was sick yesterday too, with a 24 hour stomach thing, so at least going for x-rays gave Lewis and I an amusing way to spend our time while she recovered. Lewis isn't quite himself yet, but we hope he's on the mend. Jenn is feeling much better.
• Lewis started physical/occupational therapy and speech therapy today with his new providers. He was able to relax and did well - he even pooped during the bicycle exercise! Unfortunately, he can't go for speech therapy again until his sniffles clear up, so that's next week's business.

When we aren't taking care of Lewis and Nate, Jenn and I are spending every free minute coordinating Lewis' appointments and care and wading through endless levels of bureaucracy with a variety of different organizations. On the bright side, Nate likes to hold Noodles so much that he will now voluntarily wash his hands without a tantrum. Thank goodness for small victories :)

Happy 2009

This is our New Year's post, only we're a little behind. Remember what we said about Lewis sleeping for hours straight? Turns out, he was just toying with us. He's been staying up all night to ring in the New Year for the last few nights. It's a wonder he's the one going bald.
We hope his hair will come back quickly.

Yes, you can have a fauxhawk and a baldspot.
(Do not attempt with a mullet)

For the last couple of days, Lewis has been having a little bit of trouble handling his feedings. Particularly at night. He gets about 3/4 of the way through and starts to retch some. He can't really throw up, because of the Nissen surgery, but it seems like that's what he's trying to do. He's seen the GI doc a couple of times for it, and we think we have some answers. We've been able to help the symptoms a bit by changing his posture and by venting his tube a little bit. They took an x-ray today, just to be sure there was nothing in the way (all clear). We'll try continuous feeding overnight tonight and see whether that helps. When the retching does happen, Lewis recovers very quickly, but it is clearly something we need to solve ASAP. In the meantime, we'll sleep when he lets us - just like the parents of any 2 month old.

Aside from feeding challenges and male pattern baldness, Lewis is doing well. He still makes a sport of tugging on his NG tube. If he has any say, there will be no recession for the company that makes that kind of tape. The sore on his incision is improving. We're looking forward to starting his PT and speech therapy next week. He's lost a little ground in feeding by mouth - still swallowing fine, just not very interested. Hopefully speech therapy will get him back on track.

Look into my eyes. You are getting very, very sleepy....

In the meantime, Lewis is venturing further afield. Jenn has learned to operate the feeding pump from a small backpack, so the two of them can survive in the wild quite nicely. They don't even need to come home every 3 hours (but it makes things a lot easier). Lewis is busy giving his Nanny and Babu (Jenn's parents) a hard time tonight. So far, he hasn't peed on them, but the night is young.