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.