Colorful Happy Family Portrait

I know I don't need more stress in my life...and preparing for a family portrait can be stressful. But I bit the bullet (mind you there were several times I felt like cancelling) and prepared for as much as possible. What to wear? Will Nate behave (yes, if you bribe him with chocolate chips!)? Will it be too hot? Bop took the following photos a few weeks ago and the photo shoot was at Fort CF Smith. It was worth every bit of the planning! I am ecstatic with the photos and will have such good memories of my little men for many years to come. Thank you to the excellent photographer.

Hangin Tough

Turns out it was a much needed vacation. Ever since we've been back all Lewis wants to do is stay up from 2am to 5 am every night and snuggle. Thank goodness he isn't screamin that entire time. He had a low fever which might be due to his bottom teeth coming in but we've also been worried about his gtube button being infected (though the nice Dr. Bob in upstate NY told us it wasn't infected). I'm about to hit nervous breakdown level after the last two days I've had.

Monday I got the call from the babysitter while I was at a doctor's appointment (it is so rare that I take the time out for a doctor's appointment for Nate let alone me). LJ had been crying the entire time I was gone and he had managed to throw up...even out his nose....so she wasn't comfortable feeding him anything. Don't blame her. Still baffled though because I thought he couldn't throw up from the Nissen surgery. Anywho. Left my doctor's appointment in a tizzy and got home to find a sleeping baby...breathing quickly...worried about him the rest of the night. But didn't have anymore vomiting episodes.

Then Tuesday I was picking Nate up from camp and I got the call from the nurse aide. Noodles mastered the art of yanking his Gtube out. The whole thing AGAIN, balloon inflated and all! She felt terrible and he was crying and stomach guts were coming all out (sorry for the grossness guys). We were back in the ER in under an hour. When we arrived, Nate asked the person taking LJ's vitals who she was. When she replied that she was the nurse, he matter-of-factly announced that "Noodles doesn't like doctors". Thankfully she wasn't offended by this and answered that she didn't blame him...she'd have him home as fast as possible. While difficult at points it was initally nice to have Nate there with me to keep the air light. As for me, I am thankful to all the nice doctors who have helped us get Lewis better:) Plus this time around, no allergic reaction. They used Optiray instead of Gastroview.

Yahh, we have been to the hospital 3 times in the past three weeks. We have his eyeball surgery schedule for July 27th and his MRI scheduled for August 12th. I am REALLY hoping we can avoid anymore hospital visits until then. Enough is enough.

At least today we had some moderate success with rice cereal. I wouldn't say he was eatting it eatting it. But I would scrape some onto his lips and gums and he got it down without gagging!This is truly a breakthrough for him given the last time he ate solids was the end of February. We will keep working on that. Because it is the hope that inspires...this is what gets us through the rough times.

I love you THIS much....

Nate and LJ's daddy is strong and powerful, yet tender and caring.

Frankly I'm sure all he wants is eight more hours a day to use as he sees fit...so no ties, Brookstones gadgets, socks or cuff links here.....

Now, Nate comes home from school telling us knock-knock jokes. My dad used to tell a joke, about the birch and the beech.....I guess most of us feel sometimes that we are play-acting at being adults:) I have come to realize that maybe he too, sometimes felt like he was still just a little man. Time sneaks up.

Happy Fathers' Day to the men in my life. really, there aren't words. I wouldn't trade you for all the hot wheels in the universe.

Field Trip

Ah. Sitting by the lake- chatting, resting, sunsets, cool nights, enjoying good company, daydreaming about moving here. Pines burgers, a bloody mary for me, Not My Dad's Soft Serve ice cream cones and the farmers market. To the lake and back. So today I'm feeling peaceful. LJ and I are driving up to Cayuga Lake to hang out with friends Ginger and her little guy, Jimmy. The hubbies will drive Nate up later this week so everyone can get in on the action. Hope you have a good week.

Second Verse Same As the First

Things have been busy in a not-so-good way. We wound up in the emergency room Wednesday night with Lewis. I had really been hoping to avoid any hospital visits until his strabismus surgery next month...but apparently LJ decided he needed an adventure!

It all started with an appointment downtown Wednesday afternoon. I went alone because Josh works downtown and planned to meet me there. Nate had his nap over at Didi and Bops so everyone was taken care of. However, we had not planned on one of the bridges into DC being closed. Due to a shooting traffic was horrible. The appointment went fine.

Contending with the traffic jam on the way home tried my patience. It took LJ and I about 45 minutes to go .25 miles. Needless to say he was not a happy camper and decided to pitch a very loud, screaming fit. He was hungry and cranky. I threw in the towel and decided to pull over and wait for the traffic to die down. We walked a little bit, and got a tasty beverage while we waited- a glass of vino for me, milk for LJ. (Josh was in a separate car.) We boogied when traffic started looking like it was moving. LJ was still hooked up to the feeding pump.

Things didn't go south until we had driven up the driveway and I tried taking him out of his carseat. The tube caught on the carseat and something made a "pop" sound. It really freaked me out to see the entire gtube dangling from the carseat and an open hole in Noodles' stomach! When he had the gtube surgery the first time in Georgetown NICU the button popped out several times....this was our main fear that the second surgery wouldn't take. The entire balloon part of the button/tube was still completely inflated. So here we are again. Only I felt guilty that this was all my fault. Sigh.

I called the surgeon and the doctor on call told us to get the ER as fast as I could- we don't want infection nor do we want the hole to close. I called Josh hysterically and told him to meet me there. I called Didi and Bop and told them "change of plans, could you please keep Nate until we can come get him." I cried the entire way to the hospital...not just because I had disgusting stomach stuff all over my clothes but because I really was scared they wouldn't be able to put in another gtube. The doctor could not have been nicer- she said this was more common than I would think. She didn't have the correct size button but luckily I had an emergency back up one in the car. When the new one was in place, she gave him a dye contrast to see via xray and check the placement. After waiting about an hour, we noticed a giant hive on the node under his armpit. Then more hives started appearing. We called the nurse and he got the doctor. Now it seems Noodles is allergic to Gastroview! We had to stay for him to be observed.

I do have to say that it wasn't too bad as far as ER visits go. It could have definitely been worse. Mostly we just hung out while he got benadryl pumped into him & the docs made sure the allergic reaction did not cause any trouble breathing.

Everybody's home now.

Went to the Doctor and the Doctor Said

Well. Uplifting.

This week's visits were all about the Gtube surgery. We've been concerned that LJ's wound on his stomache might be infected. So a visit to Dr. O and the GI doc as well as Dr. Surgeon.....well...they were all pleased. So far so good, no infection. But, the bad news is he lost weight. And he's not sleeping so well- on his back or side that is. So we have to fatten him up before his eyeball surgery next month. And Josh is going to engineer a "gtube pillow"...yes folks we might patent it. Essentially we need a donut hole pillow that can be strapped onto Lewis to pad the gtube and enable him a much needed night's rest on his belly!!

We got the all-clear for OT, ST and PT. So let the games begin.

Stuffed

Before and after shots....

The show must go on and Noodles has gotta eat. Due to his surgery, and his front teeth coming in, sleeping on his back (he prefers his tummy) or a reaction to too much volume of milk at once...we can't put Lewis down or else he cries incessantly... anyway. The point is, it's been quite a week. He's also made a poop. Hooray! But that took some time... after all, he's still getting adjusted....

Home.

LJ was discharged around 4. He's uncomfortable and fussy, but doing well, so far.

Quick Update

Long day, but no complaints. The surgery didn't get started until nearly 5 o'clock as an emergency took precedence. LJ was an absolute trooper, especially considering that we weren't allowed to feed him anything after 6:30 this morning. Aside from the delay, everything seems to have gone very smoothly. The surgeon had no problem putting in the g-tube. LJ is lethargic from the anesthesia, but he got some morphine for pain just after the surgery and the surgeon expects the pain to be manageable with Tylenol from here on. Even better, if everything continues to go smoothly, she thinks that Lewis may be able to come home tomorrow night.

At the moment, our man is on an IV and trying to get some rest. In the morning, they'll try some clear liquids through the new g-tube. If that goes well, formula in the afternoon and potentially, bedtime at home tomorrow night. Thank you for all your thoughts, prayers and general positive mojo.

Go Time

We just got LJ registered and are hanging out in the hospital waiting area. At the moment, LJ is scheduled for 1PM surgery, but the schedule seems to be pretty fluid - they just assigned us that time last night. We had a great morning - LJ had speech therapy and allowed Jenn to put her pinky in his mouth, without gagging or crying, for the first time in months. He sucked on it a little bit - enough to get Jenn and therapist in tears. Or maybe just enough to remind us that anything we can do to get rid of the NG tube is a good move. When Didi arrived to wait with us here, he gave her a big smile - he's been happy all morning.

Surgery to put in a g-tube is expected to take couple of hours, give or take, and LJ is expected to stay at the hospital for a couple of nights.

Thanks for all your thoughts/prayers/positive vibes. If you're in that mode, please include the Gillis family in your thoughts. We can't be with them physically, but we're thinking of them.