Friday, May 29, 2009


More to come on our quick trip to LA to introduce Rohan to Grandma. But I HAD to share this one ASAP. The smitten-ness was mutual.

Sunday, May 24, 2009

"I need to feed my baby."

Luca: "I need to feed my baby."
Me: "You do?"
L: "I do. I need a pillow." :::grabbing Mommy's BrestFriend pillow and sitting on her beanbag chair:::
M: "Do you need some help, Luca?"
L: "Help you please?"
M: "Sure thing, honey." :::snapping pillow for her:::
L: "I need a blankie."
M: "Here you go." :::handing her nursing cover:::
L: "I need lift my shirt."

M: "What is your baby's name, Luca?"
L: "Rohan!" :::pointing proudly at her baby and smiling:::
M: "You're a good mommy, Luca."
L: "I am."

Saturday, May 23, 2009

Guess Who Is Back?

My Happy Baby!!!

The first 4 weeks of Rohan's life, when people asked what kind of baby he was, I assured them he was sweet and calm and content. He slept well from the get-go, never waking me 18 bajillion times a night to 'nip and nap' as his big sister used to do. He was a major cuddle bug who usually only woke once per night to eat, napped well and through all kinds of big sister-created noise during the day, and only really cried when he was hungry or needed a new diaper.

Enter week 5....and a new baby. One we loved just as much, but who was no longer 'mellow' and 'easy'. Instead, my sweet happy baby was replaced with a fussy one. One who required endless hours of bouncing on the yoga ball. One who demanded to be held for hours on end, and would trick me into thinking he was asleep, only to have his eyes fly open and a shriek of rage call me back over to get him as soon as I tried to set him down to get something done. One whose belly would gurgle and bubble so much that when you were holding him for those endless hours in a row you could feel it in his back. One who I was afraid to take out in public, for fear he would have one of 'his days' where he needed quiet and calm and lots of Mylicon and Gripe Water.

It came on gradually, and at first I chalked it up to his being a nebworn. "Don't they all go through these phases?", I would think. "He'll grow out of it at 6 weeks...8 weeks...10 weeks..." I would promise myself. And all the while I was sort of feeling sad about the loss of my happy sweet baby. I didn't want anyone to think of him as unhappy, nor difficult. So I didn't really talk about how hard some of our days were, or how miserable he seemed. For some reason, I was almost embarassed to admit it, for fear people wouldn't like him as much if he was a fussy baby. I know it seems silly, but his sister is generally known to be a sweet, happy, funny kid. I didn't want him to be THAT one...the one who was 'difficult'.

The past 2 weeks have been particularly hard. Romo had a lot more gas and fussiness, and had several days where I couldn't do anything to make him happy. I could bounce him on the yoga ball to prevent a full on crying assault on my ears, but it wasn't making him HAPPY, just keeping him sedate enough to not be woefully PISSED OFF.

Well, let me tell you...taking him to the pediatric dermatologist was the BEST thing we could have done. It just so happened his appointment fell on his WORST day yet. See, I had a wisdom tooth pulled Tuesday evening, and the pain I had after was really severe. So when my oral surgeon prescribed me hydrocodone for the pain, and when both she and the pharmacist said, "It's fine when breastfeeding as long as you try to take it after you feed him (so that by the time he eats next it'll be working its way out of the system) and don't take it for too long." I happily downed a pill that night.

There are these things kids with Masto have, and they are called triggers. Basically the term 'trigger' refers to anything that sets off a reaction in the body. Kids with Masto have confused bodies, and things that are benign and not a threat at all are seen as one by their body, and it causes the mast cells to react. But Masto kids have an excess in mast cells, and they release an excess in histamines, and these can do all kinds of ugly things, like causing gas and cramping and other pain (bone and joint pain for one...only time will tell us if Rohan is affected by things like that, since he can't tell us for now). On the list of triggers is opiates, and hydrocodone is a synthetically created opiate. So, basically, while hydrocodone is safe for MOST breastfed kids, it was probably NOT a good thing for me to take...only I didn't know that.

Anyhow. After I took that pill Tuesday night, I went to bed. I woke in the middle of the night to nurse Rohan, maybe 4 hours after taking the pill. And I believe that's the reason he had a rough day on Wednesday, which dovetailed into a VERY bad night Wednesday night and the WORST day yet on Thursday. Essentially, between midnight Wednesday night and 2:45 Thursday afternoon (his appointment time with the derm.) he didn't sleep more than maybe 20 minutes at a time. All told, he probably got 2-3 hours of sleep in 14 hours, which is NOT acceptable for a baby his age. Add to that his constant discomfort and need to be held and bounced, and we had the recipe for a bad day. By the time we got to the dermatologist, he was a screaming, crying, hysterical mess. We won't even talk about what kind of mess I was.

The good news in all this is that the derm saw him at his absolute worst, so when I told her about his spitting up and being fussy before he blisers, she believed me. And when I told him we NEEDED to try to find a way to make him feel better, she agreed. She did a quick once-over of his entire body, did a test on his spot (Darier's sign...where the area surrounding the spot reddens and the spot itself flares up when rubbed or scratched), looked at it with a special light, and diagnosed him with Solitary Mastocytoma. The EXCELLENT news is that this type of Masto almost never becomes systemic (where internal organs are affected) and won't spread to other parts of his body. The even better news is, we can somewhat treat the symptoms and work to shrink his spot.

We left with two prescriptions. First is for a steroid cream to put on the spot once per day, which we then wrap with saran wrap for 30 minutes. This reduces irritatioin and can actually reduce the number of mast cells present. After just one application, his spot was no longer red and puffy, and 3 days into it the spot is shrinking some already. The second prescription is a drug that is used to treat depression in kids and adults. In Masto patients, it's used because it's extremely effective at blocking histamines in the body. We're giving this every night to keep histamine releases in his body at a minimum. We'll take him back in 2 weeks to reasses, and if the Dr. is not satisfied with his progress, we'll consider a biopsy and some bloodwork to make sure there isn't anything else going on.

I'm hopeful it won't come to that, though. Since Thursday, Rohan has been a whole new baby. He naps well. He cries less. He smiles MUCH more often. And we have not had to use Mylicon ONE time...though we did use Gripe Water once...for hiccups. I am SO relieved to have my happy baby back!!! Here's hoping we can continue to see improvement!!!

Thursday, May 21, 2009


About every 10-14 days, it seems like we have a really bad time of things as far as Rohan's concerned. He was actually in a good mood and slept decently yesterday, but early in the day I noticed his spot yellowing. I expected a blister, but it never really materialized. Then last night we struggled to get him to go to sleep. Everytime I'd set him down, his eyes would pop open and he'd start grunting at us. I ended up snuggling next to him on the couch from about 9 - midnight. From then on until 6 when Darrick woke for work, I don't think he slept more than 30 minutes at a stretch. He was up from midnight until about 2, then several times after that. I stopped looking at the clock because it was making me feel more tired and frustrated.

At 6, Darrick took him for a bit, but at that point he was crying these shrill cries and arching his back. We gave him some colic tablets and I bounced him on the yoga ball and he mostly calmed down. But here it is almost 1 pm, and he's yet to sleep more than 20 minutes at a time all day.

I'd be lying if I told you I haven't cried my share in the past 12 hours. Between sleep deprivation and worry, there have been some tears shed. It's not so much me I worry about, since I can live on little sleep and be just fine (college proved that to me). It's him. Babies need sleep, and when he's fussing and gassy and not sleeping, I worry about what that does to him. But so far today the gripe water+Mylicon+colic tablets combo isn't doing much to get him calm and sleeping. In fact, I've had to stop typing this post twice already to soothe him back into semi-sleep.

It's frustrating. And at the same time, it feels self-indulgent to complain about it when I know there are lots of people who have it much worse. My baby will outgrow this. Not all moms who are dealing with sick babies can say that.

I think it's weighing heavier on me because I have to go back to work in just over a week. We're lucky because Darrick will be staying home over the summer, but I worry about how well he's going to handle the fussiness and sleeplessness as well. That's not to say I doubt his skills as a dad or his love for Romo. It's just to say that hearing about it and living it are different things, and it's HARD living with it when Romo's having a bad day.

And even more so, it's weighing on me because it's inevitable that Rohan is going to be in daycare in a few months. We love our daycare - an in-home place run by a woman Luca ADORES. But the stress and challenges presented by Rohan's situation are hard on ME, and I adore this kid like only a mother can. I worry about how hard it will be on our daycare provider to deal with Romo's high-need days. I have faith in her and I plan to arm her with as much information and tools as possible, but I know I'm going to worry and feel guilt over not being there to comfort him on the bad days.

We're going to see a pediatric dermatologist this afternoon. I'm hopeful they can give us some more information, as well as perhaps some tools for helping him when he's having a bad day.

Monday, May 18, 2009

Sick Day.

There's something about a low-key sick day that makes me feel like a 'real' mom. The snuggles, the rocking, the naps on the couch, the juice and humidifiers and warm jammies and cool washcloths on the forehead.

Holding your sick kid as they drift off in your arms, their skin clammy and sweaty, their hair in damp ringlets, eyes pink-rimmed. Kissing flushed cheeks. Running a hand over their forehead, behind the ear, and over the nape of the neck to soothe them. Backrubs and sippies of cool water. All that NURTURING it requires really brings out the mothering instinct and makes me want to protect and heal.

Of course, you can't heal a cold. And so you do whatever you can to soothe your little love instead. Bananas and mismatched jammies were a start.

As you can see, even Ruby joined in the campaign to make Luca feel better.

Friday, May 15, 2009

Day 3 of 30 and Romo update

I just completed my 3rd day of this workout. In addition to staying under my points yesterday (which SHOULD be easy since nursing moms get like twiddlyjillion points...especially when they weigh as much as I do!) I did the whole workout today without stopping. Yes, it's only 20 minutes but HELLO 2 kids in 2 years? And let me tell you, I will continue doing this workout for the 30 days because on day 3 I am DOWN TWO POUNDS! Actually, down 3.5 since Monday, but I started the Shred on Wednesday, so that's the day I'm counting from.

Yes, I's probably water weight. PEOPLE! I DO NOT CARE. I birthed an 8 lb, 12 oz baby and the next day when I stepped on the scale, I'd only lost 13 pounds. read that right. I won't go into how much I GAINED, but suffice it to say I have a lot to lose and I'm taking my victory (water-based though it may be) and running with it! It's given me the added momentum I needed to put that DVD back on today while both kids are napping when what I *really* wanted to do was clean the great room in preparation for Luca's birthday party this weekend and then take a nap.


In Romo news, the poor bug had a rough morning yesterday, but after a nice dose of Gripe Water and Hyland's Colic Tablets and a good long nap, he was in a good mood the rest of the day. We got an appointment for him with Phoenix Children's Hospital, where the dermatology clinic lists 'Mastocytosis' as a condition they deal with. I'm not expecting a miracle for him, but I'd love some tips on coping with his belly pain that accompanies the blistering, and perhaps a prescription for some antihistamines (the ONLY thing I've found in my research that can prevent big flare-ups and thereby make him feel better when he's about the blister) and an epi pen. Why the epi pen? Well, kids with Masto tend to be SUPER sensitive to common allergens and their histamine levels in their body are already too high. So a run-in with an allergen for Romo has the potential to be MUCH more severe than for a normal kid. Things like bee stings can cause reactions up to anaphylacitc shock, and that's not something you want happening to your (sweet, handsome, so precious you want to wrap him up in a bow and carry him everywhere in your pocket because look at these eyes:

and this smile:

and tell me you don't want to do the same) baby boy.

The appointment is next Thursday, so I'm sure I'll have lots to update on then. Wish us luck!!

Thursday, May 14, 2009

30 Day Shred

This is one bandwagon I HAVE jumped on. After a tearful attempt at getting some clothes in a 'transition' size to wear back to work, I am determined to drop some pound and inches. I am combining this workout, which promises to get you in shape and help you lose "up to 20 pounds in 30 days" with doing the Weight Watchers program on my own. Today was day 2, and I am not dead yet :)

I'm not at all expecting to lose 20 in 30, but I'll take losing a few at least!! The workout is tough for me after spending the past 2+ years doing basically no exercise, but I am determined to give it 30 days. I even took before pictures (not sharing them, though....if you saw them you'd thank me for that decision) so I can see my progress.

Wish my fat ass luck!!!

Friday, May 8, 2009

Muffin Cake Lives!!!

I am trying to lose the baby weight (yeah...we're going with blaming it on the that a problem?) so it's only fitting that I'd be obsessed with baking at the moment. And with Luca's birthday this week, I had the perfect excuse to bake something scrumptious. I was tempted to make the cake pops that are all the rage right now, but with a toddler and a newborn underfoot, I couldn't forsee being able to get them made and pretty without losing my mind. Plus, I'm kinda stubborn (Me? NAH!) and cake pops being all the rage made me NOT want to make them. You know...buck the trend and all that jazz. I needed something easier. Enter: cupcakes.

But the thing about cupcakes is, Darrick's not big into cake. I think he thinks it's too dry? So I wanted to do something with a little more oomph. I settled on a pudding center. Here are the pictures I took as I made them. I's not like I did something no one's ever done before or anything, but for ME this was big!

First, I made white cake cupcakes (which look yellow here because of the lighting in the kitchen):

While they cooled, I made vanilla pudding. The kind you cook. On the stove. No instant in this house, no sir. And once the cupcakes were completely cool, I took a small knife and hollowed out their centers:

I don't own pastry bags, so I went the cheap route and used a sandwhich bag to fill the cupcakes. I just put cooled pudding in the bags (a tip: cover the pudding with plastic wrap while it cools to make it creamier) and snipped a hole in the corner:

For extra gooeiness (is that even right?) I filled them once, tapped them down on the counter to help the pudding settle, and topped them off. Once they'd sat in the fridge to let the pudding settle, I iced them and added sprinkles. I'd originally planned to use cherry frosting because Luca picked it out, but then I realized dark chocolate frosting would make them like Boston Creme cupcakes. An homage to the best donut ever, in cupcake version? Sign me up.:

Anyhow, we ended up out for dinner last night, so Luca didn't get to try the cupcakes until today. Though I fully admit that while I was decoratingI let her eat a spoonful of cherry frosting and poured sprinkles right into her mouth. She LOVED the cupcake she ate today SO MUCH she almost ate the whole thing!

I'd say she liked them.

Wednesday, May 6, 2009

Going on Two.

I put my 1 year old to bed for the last time tonight. Tomorrow she turns 2. It's almost unreal to me, how she went from a tiny little birdie to a tall, funny, gorgeous, wonderful (and often frustrating) toddler in the blink of an eye. I'm not as weepy this year as I was last, and I think that's because we have another baby in the house to remind me that the baby phase is sweet, but the toddler phase is FUN (sorry, Romo!).

We did have a few sweet moments before bedtime. It's one of my favorite times of day, and not just because bedtime is the precursor to some quiet time in the house and my OWN bedtime. It's always sweet because it means a cup of milk, snuggles, reading her books, and the trip upstairs for kisses and hugs. Just in the past 2 or 3 months, she's taken to not wanting to be carried up to bed most nights, instead saying, "No, mama. Luca wanna walk." (yes she refers to herself in the third person a la Bob Dole). And then we go up together, counting each step aloud, as she twists to the side to try to reach the banister. Usually, her hand grasps for it and misses.

Tonight, for the first time ever, she reached up and found purchase on the wooden railing.

My baby is getting so big.

Before we made the trek up to bed, though, we read a few books and got her dressed in her jammies. Rohan was having some gas issues, so we read over his crying while Darrick rocked him. She was sitting in my lap, her sweaty toddler head and sticky blonde hair touching my cheek. Mid-jammie change, she looked up at me with those (huge, gorgeous, going to break some hearts with them) green eyes and smiled, then started to sing "Twinkle Twinkle Little Star" to me. Next thing I knew, I was holding her like one would hold a baby, her head resting on my right arm, her long legs folded over my left, and we were singing it together. But it wasn't a normal version; rather we sang it the way I used to sing it to her when she was a baby.

"Twinkle twinkle, Luca star
How I wonder what you are
Up above the world so high
Like a baby diamond in the sky

Twinkle twinkle Luca star
How I wonder what you are."

I told her how, when she was little like her brother, I used to sing that to her at bathtime and bedtime. And how I used to hold her, just like that, close to my heart.

And then I felt her little hand reach up for my cheek, and heard her say, "Don't cry, Mama." And it was only then that I realized I was.

Happy Birthday, Sweet Luca. You are a light in our lives, and our worlds were changed in such profound ways on the day you were born. We love you so much more than we could ever tell you. So happy birthday, our little star.

Tuesday, May 5, 2009

It's back.

After a good week, including only waking once overnight to eat on Saturday and Sunday, Romo had a bad day yesterday. He wouldn't sleep or stop crying unless I was holding him, which was difficult since I also have Luca to look after and play with. He finally fell asleep about 9:30 after maybe 3 hours of naps - total - all day, and I thought maybe he'd sleep well as a result. But it was not to be, and this morning I found out why. After being healed for about a week, his spot blistered again this morning. Poor guy seems to have a lot of pain and/or discomfort right before it blisters, which absolutely breaks my heart in half.

Anyhow, these pictures aren't pretty, so apologies in advance, but I wanted to document this. A big reason I'm doing that is because we've found it exceedingly difficult to find information and pictures online, since Mastocytosis is so rare. So I guess my hope is maybe some other parents out there with a newly diagnosed kid will find this and take comfort in knowing there are other kids out there dealing with this. It's hard and it hurts to not be able to really help him feel better, but there is something bigger than that. Rohan is a sweet, smily, lovable baby, and this disease is only one part of his life. He's going to be such a strong boy for having made it through to the other side.

So, here are the pictures of the blister.


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