Hello Sunshine

For me the week was about the littlest things. Absolutely thrilled to have a break from the daily grind. For starters, the plane ride down went pretty well. LJ was crying until the benadryl kicked in. First three days of vacay we had a black cloud over us. Seriously, so much rain the streets flooded. Nate was singing the "Rain rain go away" song on repeat.

as seen from Mandalay Avenue

We're all about sunshine. And we're not looking back.

Cousins...aren't they so cute?

my boy and the beach

frankie says relax

I am now ready to take on the world. I'm ready now. I can take it. I've had some sleep, loads of food (including my favorite Grouper sandwich at Frenchy's), plus some time in the ocean, building sandcastles, floating in the pool and r&r with the fam and friends.

La La Land

We're due for a change of scenery. We're excited to be heading to Florida to visit my fam. We might need some intervention after the flight with both our guys. Should be interesting to see since Noodles won't nurse, take a bottle or a pacifier and his sinuses will probably kill with his NG tube in place (hopefully a little Benadryl will quiet him down) if his ears pop and get too uncomfortable...and since he always has to be bopped and bounced when he cries (sitting just won't do). The light at the end of the tunnel: lobster dinners, beach blanket cuddles and hopefully some zzzzz's (as well as spending time with a few of my favorite ladies). I can't wait to pay the beach a visit. I love the sound of the waves. How it can be haunting, peaceful, playful and beautiful all at once. We're off to soak in the sunshine and blue skies.

Photo Opp

Lewis pulled out his tube this morning. Took a photo opp. Check him out.

The quick update is that we are seeking a second opinion for Lew's surgery. We will meet with another surgeon tomorrow morning. More updates as soon as we know what we're doin'....

Wee Bitty Hospital Gown

waiting for Flouroscopy; Children's National Medical Center

Dr. Surgeon scheduled Lewis for a bunch of GI studies today at Children's National Medical Center to get a better picture of his stomach (no pun intended). Using flouroscopy the doctors were able to tell us how his stomach was healing. We couldn't feed him anything for six hours before the test. Unfortunately we had to wait a long time past our appointment (which was 2pm). And then they had to inject barium (they made us put the hospital gown on him so we didn't get his matchy matchy outfit all dirty from the barium) to see the contrast of die in his tummy. And then we had to wait another hour before more xrays could be taken. And then....We left the hospital at 7pm. Luckily the technician thought correctly that we could start feeding Lewis at 5:00pm so he didn't crank a huge fuss on the trip home. The radiologist told us he didn't see anything alarming, but we have to wait until our GI appointment tomorrow for the real results. We'll find out whether we can proceed with the Gtube surgery or if we're stuck with a Jtube. We're still doing research and trying to find out what is the best approach. Lew is doing just fine and is making zzzz's right about now.

Scooching...

my little man is not quite a torpedo on his knees, but he does manage to turn himself 180 degrees as well as getting himself off the activity mat.

Mother's Day Reflections

My mother: is the most beautiful woman i have ever seen + is the reason i am a good mother + reminds me everyday that life is what we make of it + she is the woman that i most admire + she is one of the world's biggest worriers i know + my light + my rock + my mother.

I love you for always being able to see the good and hope in hopelessness. I love realizing more and more each year how much of you is in me. I love you Mom!

Me: What do you want to say to your grandmas?
Nate and LJ: Hi Nanny and Didi. Happy Mother's Day!
P.S. Send candy (what a cool mom for actually writing that:)

As for my mother-in-law, I completely lucked out on her... She's one of the most selfless, lovely women around. She has a TON of skills and talent (which she graciously showers on her adoring grandsons!) Didi, you are wonderful, amazing, smart and pretty.

And on this Mother's Day, I have an amazing testament to motherly love and the courageous lengths that we all go to bring our babies into the world...no matter how they arrive. The discovery of motherhood has encompassed the joys and trials and personal growth of being in the moment. My one wish to have my boys hug me and be by my side on this holiday has been fulfilled.

Flying Solo

I've been on my own with the boys since Saturday morning. I am out of control, not my usual self. Nate professed that he misses his Daddy very much, and so do we. We started off the weekend when LJ and I accompanied Nate to his swim lesson on Saturday where we proudly watched him blow bubbles, kick his legs and doggie paddle. A surprise trip to urgent care on Sunday a.m.- Lewis is fine. Just a bit of an adverse reaction to the switch we made to his milk fortification (in an effort to help him gain weight)! One stool sample (on the remote chance it was a C. difficile infection. No it's not of Spanish descent. It's actually a bacterial infection of the GI tract) and a blood test later (results were normal), we've since changed the powder formula to a hypoallergenic formula which seems to have helped. (Nate once again made sure Mr. Pediatrician wasn't giving Noodles any vaccines:)

Nanny flew in Monday night to help us keep the house clean and stick to our usual routines. However, I've enjoyed hanging out in our pj's late into the morning, dance parties, dining on cereal at all hours of the day (I've had no menus planned) and getting lots done in the evening. But with Josh away, I have no one to get the coffee going in the morning and especially no one to share the middle of the night partying oh I mean feeding responsibilities. Though we've had visitors- Auntie Joanne came one night and read Nate bedtime stories...freeing me up to give LJ a massage. Nanny has been great for enabling me to get a shower in the morning after the boys have woken up (typically a luxury since Josh has gone to work v. early), been fun hanging out and helping out with loads of laundry!

Seven days? Panic came first and I asked the babysitter if she could come often- we settled for two days this week. But since that initial moment we've been filling the time with lots of activities and outings. I'm not like a deer in headlights at all. The dining room turned into an art studio and the outside patio turned into our chalk canvas. Lego creations have been prolific. We've missed Josh and we're ready for him to come home soon. But this little experiment has proven to me that I don't have to be a perfect mom or do things a certain way. I'm not myself. Sure there were occasional meltdowns, but I've actually been more relaxed.

Look Who's Here....

I've been pretty much holed up at doctor's offices this whole time, while somebody has been working on something for you. But I did want to share this visitor under the front ivy eaves with you. She's here on maternity leave. And I can't wait to see those beautiful baby birds when they are born.

This visitor (she's a robin and eludes the camera) and her fledglings inspired me to celebrate new life and renewal. It took some time but it is in times like these that one puts some serious effort into turning my attention to the forward-moving strides we've all made. Like I've said before, we have in fact, been officially approved to receive twenty-five hours of nursing respite care during the week and an additional two hours per day in personal care (or we can use these hours how we see fit). We have hired someone to help us and are awaiting the state to officially put her on the payroll so she can start. Yes, I am patting myself on my back. But that is what I need right now. What changed you ask? Everything and nothing. Thank you to all of you for your support- it was very comforting. Your feel-well wishes worked!

We went to see Dr. Surgeon last week. Had speech therapy on Tuesday followed by infant massage class and then the nurse came on Tuesday. And we saw Dr. Opthalmologist yesterday. PT, OT and a massage therapist. Phone calls to interview people. Phone calls to feeding specialists and case managers to quiz them on what the best plan of action should be. We haven't slept a full night sleep in over six months. Long story short we're exhausted:

Noodles' eyes haven't improved and he does need surgery but we will continue to patch both eyes for now. Since his stomach is the priority right now, the eyeballs are going to have to wait their turn- probably in June. But we're gonna patch the good eye two days in a row now followed by the bad eye one day and repeat that pattern the rest of the week.

Dr. Surgeon has ordered an upper GI study which we have scheduled at Children's Hospital second week of May. He wants to gauge how big LJ's tummy is, the location, condition of esophagus et al. He thinks there has been sufficient time between the last operation that it has had enough time to heal. There might even be potential for minimal scarring in which case he could attempt to do the G-tube procedure (tube in the stomach wall). In an ideal world, this would be the case and he would be able to go through LJ's existing incision but we'll see. The worst case scenario is he can't see well enough because of the scar tissue and will have to place a J-tube (tube in the intestine). There are many downsides to the Jtube, for instance Noodles would have to be on a continuous feed and hooked up to the feeding pump at all times. Another negative is he wouldn't ever feel hunger. None of this allows for any sense of normalcy. The one upside is that it would eliminate the retching syndrome and any related reflux.

We've spoken to many feeding specialists who all feel the NG tube is no longer a viable option.

More on the NG tube...everyone's concerned again with LJ's weight gain. None in the past three weeks. That combined with his oral-feeding regression points to the alternatives. We're still playing with the right formula for adding calories to his milk and obviously we still haven't gotten it right. Yet, the pros feel we won't make any progress with his sensory issues if we have all that tape on his face and the tube is still causing discomfort in the back of his ear, nose and throat. So we're most likely looking at abdominal surgery in May.

I was trying to coordinate as much as possible at the same time so that we only have to put Noodles under the once. But Dr. Surgeon and Dr. Opthalmologist both are extremely wary of anesthesia contamination and therefor won't do it. It's just too dangerous. So it appears he will have to have anesthesia twice. But he does need another MRI so hopefully we'll be able to schedule that at Children's Hospital before the G-tube surgery.

What does the future hold? I wish I knew. Anybody have a crystal ball? I will do whatever it takes to make my little man get healthy.

Mojo- Oh It Left

It's hard seeing Lewis struggle for his achievements. And it's hard wondering if he'll walk or talk, let alone live independently. And it's hard worrying about what will happen to him when we're both gone. But one of the hardest parts is thinking about what Nate has lost, and how his life will be different.

Sure, I could write a wine and roses post about what he'll gain, and I do realize that this is all out of our control. I do think about the good parts of being his brother, and I hope someday he'll appreciate all of that. I know this is the only way he'll ever know, and I hope that he'll never think about all that he's lost. He doesn't yet know that he's different. He's just Noodles. He cheers right along with me when he has a good night, plays in his excersaucer or does something new. He tells new people that Lewis is just 'special' and he'll tell them thath he just eats his milk from a tube. He just is, and he knows that. I know I'm forever changed by being Lew's mom, and I'm a much better mom than I would have been without him. I'm more patient, I appreciate the little things more, I recognize how amazing life is. I know that there will be benefits to growing up with Lewis. And I know he'll be a better person in the end, but I do worry about it.

I think about how much time and energy Josh and I put into Lew's care, therapies, insurance fights and appointments. I worry that Nate is not getting enough from us, or that he always comes second.

I think about how I'll eventually have to explain to him the how's and why's of Lew's differences. I wonder if someday Nate will be bitter or angry at the responsibility he'll feel for Lew. I know there is nothing I can do about any of this, and I realize that I shouldn't go there. I don't know how NOT to think about it though. Or find peace in the knowledge that this is just the way it is. I spend most of my energy focused on being positive, but this little part does wiggle it's way into my mojo. And today is just one of those days.

Plus et Plus

Holy Granola: Infant Massage

Went to a massage class this week with Didi (the instructor was from Brooklyn so they clicked immediately!) and LJ. There are so many benefits to infant massage that I can't even list them all. Massaging your baby is so important, not just for the baby but for bonding with you too. Some of the physiological benefits are listed below:

-improves blood circulation
-the release of oxytocin, the nurturing hormone
-aids in digestion
-helps relieve discomfort from gas, colic and constipation
-enhances development of the nervous system
-stimulates neurological development
-improves immune function
-reduces stress hormones
-increases alertness/heightened awareness

These are just a few of the benefits. You don't seem to need to know alot of techniques- though one is called "Swedish Milking". (not kidding) A few seem like they could go a really long way. Lew seemed to love it. He wanted to go right to sleep after it! We have another class next week and I hope they practice on moms!

The View From Here

I love it when the UPS guy leaves me goodies. We've been gearing up for a few fun vacations and "staycations". So I ordered new bathing suits to outfit the whole family. And now, Nate has insisted on wearing one of them while he watches his show on t.v. (EDIT: he's now wearing his bathing suit and his Curious George rain boots). I have a sneaking suspicion we will be putting him to bed still wearing 'the green one'. If Noodles' health continues to be stable we are scheduled to go to Florida (it's where all the cool kids go on Spring Break) to visit my family in May. And we are supposed to spend a week in Hilton Head in July with my extended family. Perfect for going to the beach, playing in the pool, cooking great meals from going on some bike rides to watching the waves crash with Lew on my chest...can you tell I have a serious itching for a forecast with only sun and warm weather? I'm greatly looking forward to it (maybe I'll even have a chance to read a book).

After spending so much time this winter in the hospital, in therapy and in doctors' offices, I suggested to Josh that we needed to take some time out for the family. We needed some serious laughter and fun- and I'm all about travel. He was totally on board so we started planning, saving and reserving. To further cut costs, we were able to re-book our flights that we couldn't use from November and talked the airline into waiving the penalty fee. Cocktails on the porch? So here's a little ode to things that are cheerful!

While this week has been busy with doctor's appointments and Medicaid updates, I'm in a "medical" rut. I'll just wait it out and return a little later this week with the full update.

"Mawage is what bwings us togevah, today"

Man, how time flies. Way back when it was our big day we had no idea yet just how much he would need me, and me him. I'm so proud of us. We're showing the boys what a loving, trusting, strong relationship looks like. It's meant lots of love and affection, playfullness, constructive disagreement and lots and LOTS of communication. Plus, I think he's the coolest guy around. The fact that he helps me with the dishes and he makes me coffee in the morning makes me swoon.

I know one thing. I'd do it all again. A million times over. ( I might do a few things differently though). You are my best friend. I love you like crazy. K. Thanks. Bye.

the best things in life aren't things

one more reason to keep him...i have this incredible husband.

Happy Almost Anniversary. Seven year itch? He's more than incredible. He's a great father and my best friend. And get this ladies, he helps around the house. But there's another reason he is so great: he can do anything.

He makes most of our money, he is an avid cook, he does the laundry, and he fixes things. A couple of weeks ago our wood blinds fell apart in the dining room. He took them down, fiddled around with the inards, replaced some stuff and Bingo! Car problems, you name it he can fix it.

To celebrate our big day, Didi and Bop came and watched the kids for us and we dashed off alone for a saturday night getaway to our nearby, favorite fancy restaurant CityZen and then stayed the night at the Park Hyatt. We relaxed, ate A LOT, tried to sleep late, browsed the stores in Georgetown, napped, laughed, refrained from cleaning anything (knock knock housekeeping) and ATE SOME MORE.

Judy and Hank, THANK YOU. So much. Really. It couldn't have been more perfect. (Let me tell you, this Didi and Bop we've got? They even ordered pizza for dinner. And bought old Muppets dvd's for "movie night". Manamana. Seriously, those are good grandparents...) Can we do it again soon?

Like tomorrow. Anyone?

Sanity May be Madness

Sanity may be madness, but the maddest of all is to see life as it is and not as it should be. ~ Don Quixote

Full Plate

Actually, I'm too full still to talk about the holiday! Our plates are full with doctor's appointments this week and next.

We had our appointment with the Pediatrician Monday and the Neurologist yesterday morning & I just wanted to bring everyone up to speed.

Pediatrician:
He was pleased with LJ's progress. It's slow, but it's progress for him. He was happy with his weight gain. Folks, he's 15lb 10 oz. His head is 41 1/2 cm. (It's on the small side, but Lewis must take after his mom. I have a pea-sized head!). And he is 25% on the charts. Nate chaperoned us and he asked the pediatrician during the check-up whether he had any "vaxines". Nate also gave his nurse a pretty hard time when it came to giving Lewis his 6-month shots. Here's the lowdown:

Nurse administers first shot. Lewis screams and cries.
Nurse administers second shot on LJ's other thigh. He screams and cries and sheds big crocodile tears.
Nate hollers at nurse "That's enough. No more vaxines. Don't hurt my baby brother! That's enough!"
Nurse explains to Nate that these shots are important for Lewis. They will make sure he stays healthy and doesn't get any bad diseases.

When we got home Nate and I had another conversation regarding vaccines. It went like this:
"Mommy, I don't like vaxines. Medicine is gentler. Medicine is better. But I don't like the grape kind anymore. I like the banana kind." Now I know which medicine is the grape one...but I'm clueless where he got the banana idea. Any opinions are welcome.

The day went on and LJ did fine after the shots.

Neurologist:
He felt Lewis is at about the 3-4 month old marker developmentally. He tested his foot reflexes on a hard surface and found that the placing/stepping are intact but a little slow. Again, totally consistent with his developmental delays. He also mentioned that Lewis seems to exhibit slight hypotonicity.

I discussed the course of treatment regarding LJ's eyes with him too. He defers to the Pediatric Ophthalmologist but felt that the earlier the intervention (ie surgically correcting the muscles) the better off he would be...we don't want him to end up with Amblyopia (a disorder of the eye that results in poor or no vision). He mentioned that some folks treat strabismus with botox??? and or botox in combination with the surgery. Yes folks, long before botox was used to treat wrinkles, docs use it to relax the overactive muscles in order to bring the eye back into proper alignment. Can I get a little of that?? not in my eye, but around my eyes would be nice.

Last and not least, he would like to have another MRI done between 8-9 months old to study the gray and white matter. I Would LOVE to coordinate the anesthesia from the eye surgery with that of MRI. It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. And it makes me doubly nervous thinking about putting him under with general anesthesia twice in one month!

Anyways, next week we meet with the stomach surgeon. We're pretty sure it's a foregone conclusion that there is too much scar tissue and that he won't want to operate again. That's the GI doc's verdict at least. We'll also be taking a course on infant massage to see if we can help Noodles relax a little and feel more comfortable after his feedings.

Rolling...batting...smiling

It's official. In the last four days my little man learned to roll over from his back to his tummy. He's been trying for awhile...and he got a little help from gravity when he last attempted it at an incline in his crib. I'm hoping this will lead to further roll-overs on his activity mat and maybe even from his tummy to his back. Ya never know!

He also successfully batted at his Sassy piano rattle and got it to make noise! Mission accomplished.

Smiling. He's been doing lots more of it spontaneously. It's contagious. Sometimes I swear he is even smirking! LJ also occasionally blows raspberries but we're still working hard on the eating front.

We have his 6 month checkup at the pediatrician's first thing next week. So it will be interesting to see what the doc says. But it is so fun to watch him learning new things...and to cheer him on in all his new adventures.

Bread Chronicles

The above picture is of Parmesan-Pull-Aparts. Big shout out to Natasha...this was a nice deviation from the challah we've been baking! And fortunately the recipe wasn't too challenging. Thank you. We've been eating it with dinner, for breakfast, for lunch, as a snack etc etc. Wishing we could give you a cyber taste!


Could LJ be trying to tell us something?

The Rainbow Connection

Happy 6 months (almost) to LJ! We threw a little party last night to also celebrate Nanny ( I love you mom and am grateful for the journey of discovery that has been/is motherhood) and Bop's (happy birthday Bop!) birthdays too. To set the mood, Nate and I made a rainbow cake!

Yay, so the news we've all been waiting for! Well, okay, maybe not *all* of us. Maybe just like a smallish grouping of us. Or perhaps just Josh and I plus a few other people, probably our parents, as they are always good for stuff like this. Oh right, the news: LJ was approved for Medicaid. Yeeeee! Not only will this mean some respite nursing care in the near future but he is eligible for all kinds of other services!!


concentric-ish gobs of cake batter


white frosting disguised the colorful innards


and just in case you wondered what their eating cake faces look like, here you go

kids....

A group of professionals posed this question to a group of 4 to 8 year-olds, "What does love mean?" The answers they got were fantastic.

here are some of their responses to get your Friday started:

"Love is when you go out to eat and give somebody most of your French fries without making them give you any of theirs."
Chrissy - age 6

"Love is when you kiss all the time. Then when you get tired of kissing, you still want to be together and you talk more. My Mommy and Daddy are like that. They look gross when they kiss."
Emily - age 8

"Love is when you tell a guy you like his shirt, then he wears it everyday."
Noelle - age 7

"Love is when Mommy sees Daddy smelly and sweaty and still says he is handsomer than Brad Pitt."
Chris - age 7

"Love is what makes you smile when you're tired."
Terri - age 4