The Daily Grind

How bout a break from the tear-jerking posts?

Many of my fab kidless friends are curious as to what having a baby really means, some mothers curious if its different for Downs. Yes, there are the times you get to dress your baby up like a doll in the latest pink frills an infant-loving family friend has sent. And there is the one everyone secretly wishes to participate in once in their life - a baby falling asleep on your chest. Ugh, melts your heart to know they find you that comfortable, listening to your monotone heartbeat to lull them off to dreamland. These are the perks that visitors get to join in on when they come to see Lyla in our cozy, waterfront rental. But what they really don't know is that these are just the feature highlights things like A Baby Story gives you. The real daily knitty gritty goes a little something like this...

5am
A pale gray-blue is emerging through the cracks of the curtains covering our bedroom picture window overlooking the glass water morning bay. We live in a neighborhood called Crow Point, so you can imagine these early morning hours filled with squawks from the jet black birds. The higher chirps from smaller birds in the background. Not annoying squawks that will wake you up, more just pleasant hellos from nature as you stare at the porcelain skinned baby girl grunting and squirming in protest of leaving those dreams full of a world made out of giant milk bottles. That's like winning the lottery for a baby, right? Free milk for life? The pink-tinged eyelids squint open to produce darkly contrasted slits as she lets mama know she's ready for some boob juice with quiet "ehhs", just enough not to stir Daddy too much. I scoop up the warm snuggler and we tip toe out for our first breakfast of the day. Lyla likes to call it her protein shake just to get things started. Vanilla of course.8am
I often awake again after realizing we've fallen asleep in the nooks of the couch or recliner, Lyla snuggled into my arm meeting my side. Of course she's protected in between my body and the cushion - don't worry Dad. First thought, Crap we're not going to make it to the Stroller Mafia class at 9 now. Yup, that's right, an exercise class my gym puts on at a local park. A bunch of fellow yoga panted mamas with their babies in strollers while we all look like fools doing lunges while pushing them in a line. I like the classes where she's included with me since the gym day care is on our fears list - a place where germs thrive. Remember - we just can't get sick until surgery. But I know that it's 8:00, I need to feed her again as she's wide-eyed and brushing her searching hands against my cheek, pump the remaining morning explosion of milk out, and then try to get us out the door for a 15-minute car ride? I don't think so. We'll have to settle for our own version later in the day, minus the lunging as I don't need my new neighbors thinking I am nuttier than Gary Busey.

I walk into the kitchen from the 1920's (please oh please Landlord, let me Sweat Equity this for you) to scarf some breakfast before her Pack n Play excitement expires. I remember there is 1 moist pistachio muffin awaiting solo in its glass display like a Tiffany's window design. I walk forward with anticipation to lift the lid, only to discover this:Troy's been watching too many Seinfeld episodes. Dammit. Elaine's idea won him over. Muffin top stealer.

10am
After her mid-morning grazing feed, we're finally done with round 2 and Ellen was hilarious as usual. Let's see if Mommy can squeeze a shower in. I'm never even asking for red carpet full makeup and hair either - just wet hair in a bun and concealer to cover up my post-pregnancy rosacea would make me feel like Heidi Klum. Thank you Cover Girl. If we're lucky, she's taking her first nap. Some weeks Troy is here to relieve my duties for 10 minutes, but some weeks I'm on my own with the bouncer right next to the tub, pushing the pacifier in her mouth every minute since she spits it out like chew. Why do these things not stay in?!11am
To give the girls a break, we use a pumped bottle to serve lunch. On the menu today is Pina Coladas straight up, as my Dad likes to say. I'm so proud of the munchkin to be able to nurse and take a bottle. Some babies strike against mixing how they take their cocktail. The only drawback to the combo is that this produces more dishes to wash.This little pink tub and I have become very close friends. We meet up with each other at least 3 times a day. Great, I'm starting to get so secluded that household items are thought of as my friends. The only good thing in this situation is we do not pay the water bill - paybacks for the old kitchen landlord!

12pm
This is where my stomach says "Hello?! This half of a muffin is not cutting it and I'd love some chicken salad." My stomach does not get along with Lyla a lot. He doesn't understand that this new baby comes first, and all of the growling in the world will not allow me to ignore the diaper and dress up session that must take place first. I refer to it as a He since we're all familiar with a male asking where his food is. But then I remember that I must at least keep Mr. Stomach well hydrated, or else the Parton twins are going to call it quits on me.I feel like I am constantly trying to keep this blue container of life going. If no one has told you, breastfeeding makes you as hungry as a horse and as thirsty as The Hoff after an all night bender. That whole bologna on how you burn 500 calories a day from producing milk and it's a great incentive for losing pregnancy weight...I'm calling bullshit. I know, how dare I. The first month nursing seemed to speed the process up of pulling that 9-month belly back in pretty tight, so that was sweet. But then the Slimfast stops. I've gone back to my normal pre-pregnancy menu, and I haven't seen any weight loss from Twin Peaks since. But I will say that the other 638 reasons to breastfeed are totally worth it, and I will be the milk woman for as long as I can. I realized the incentive for breastfeeding should be to get your baby the best food possible - not to drop down to your 7 Of All Mankind jeans in 6 weeks.

2pm
Feeding #4 gets finished. Let's get that workout in. Especially if it's a really bad day and we haven't had time to shower yet. At least pulling it up into a last resort greasy ponytail will get us somewhere past the frizzball clipped up mess. A REALLY bad day is we're just brushing our teeth by 2:00...yuck.

Into the stroller we go to take in the refreshing marine scenery in our new hometown. The picturesque views are straight up out of paintings. The houses along the way are found only in the movies. The people we encounter on our stroll have the manners of my missed southerners. The way she stares wide open at the clouded Dodger blue sky. I love how she takes it all in. It's literally a breath of fresh air.4pm
We're back to our homebase recliner just in time for a white chocolate latte for Lyla and Oprah for mama. Show me what miracle jeans are going to make this ass look smaller Ms. Winfrey.She's always so easy to stare at when she's nursing, hand grasping my shirt like she's never going to let go. That hoopla about how you'll never experience bonding like you do from breastfeeding - it's true. I'm hooked.

5pm
Troy's done with work - HANDOFF! I love you Lyla, but Mommy needs to run to the store without having to worry about you and 50 grocery items fitting in the cart. Wine bottles trump car seats.Or it's time to seclude myself to the cool laundry room to recover any of the 10 items of clothes that actually fit me during this awkward stage. Or I can reward myself with having time to run the addicting Swiffer vacuum since I am OCD on how much dust I can pick up. Who knew I would one day call grocery shopping or a laundry room a relaxing getaway. What happened to happy hour?

7pm
Dad duty is going strong with bathtime and another pumped bottle. I am so glad he can participate in feeding her. It really is a magical thing as she stares at you taking your face all in. It's like she's saying thank you with her eyes. And those fingers smaller than matchsticks that touch your chin to show appreciation for making the hunger go away. Such a rewarding moment. So I reward myself with a glass of wine.This shot says it all for 7:00- ice cold pinot grigio chugged, laptop in the background from a Facebook break, quick read on the side table, video baby monitor as my new Crackberry, and notes of today's feedings just to make sure she gotten enough in. Proper weight gain is always on our mind. Ahhhh, my new life. Another glass please.

8pm
Oh, we the parents get to eat? Sort of forgot about that. One of us will tend to the babe while the other scrounges some sort of frozen vegetable bag or leftover takeout together. So Martha Stewart, I know. Anything that can be cooked in 10 minutes and eaten in 10 minutes is a must. She doesn't give you much! How I Met Your Mother better not be a repeat.

10pm
The last feeding of the day is finishing up and Lyla is getting knocked out like she encountered Mike Tyson. (All I can ever think of with him now is his Phil Collins cameo in The Hangover - I always rock the drum solo too) This is where the blog comes in. I love writing at night. Something about the stone cold silence of the house brings all of my point worthy thoughts forward. I often type until 1am (1:34 right now!) just to get all of these head-flooding words out, which avails to Troy sometimes finding me like this in the middle of the night:

Keep in mind here, she dictates the schedule. These are just averages. One thing I learned from her is boss likes to create my work hours. Today she'll eat 10 mini meals and be up all day, tomorrow she'll chug 6 big ones and pull a Sleeping Beauty. Now that she's gaining weight properly, I just go with the flow and enjoy each day my baby wants to suggest from the Director's chair. We're creating quite the movie.

All in all, I look over this timeline of events and smile at myself. I think back to the frantic Jessica coming out of the sliding hospital doors with her new baby, crazy to educate herself on how different she needed to raise her infant with Down syndrome when she got home. Her thinking that there were going to be different medicines, or different sleeping positions, or different feeding styles that we were going to have to read up on and throw the "typical" Baby 411 book out the window since our child wasn't given the normal beginnings of only "It's a girl!". I went back to that book the other day after breezing through the 3 Down syndrome books I ordered, and realized This is my baby too. All the doctors and professionals prepare you on how different Lyla will be, but to me this schedule and life that we have is not much different at all. I wish I could approach all of the new surprised moms out there in those hospitals, receiving their infant's harsh diagnosis, and just reassure them that this too will be the baby they were expecting. It's a sweet baby boy or a precious baby girl, no more or less just because of a 2 word diagnosis that threw a dagger into their heart. Sure there will be weekly physical therapy appointments to improve muscle tone, and some specialists to rule out any common problems internally. But all in all, she's your baby.Just give in to her and enjoy.

Life

This morning I awoke to the news that my best friend had given birth to her first baby - a sweet little daughter as well. I don't know if it was pregnancy hormones still hangin' around, but I teared up remembering the exact emotions she was going through as she lie in that sterile hospital bed. Staring at her little one swaddled up in her portable bassinet, wondering when the excitement is ever going to die down to get some much-needed sleep, and occasionally sticking her hand on that baby's chest to make sure it's rising up and down. It's a funny thing, that little secluded hospital room. You'll never forget it even though you're only there for a measly 48 hours, compared to the lifetime of love you're about to experience.

The reunion of emotions inspired me to create a little tribute to the 48 hours I was in that hospital room. The time that I was brand new to it all.

Inside The Actors Studio Session

This may be a bit premature since author Q&A's usually happen after a book has been written, this just being the beginning of my writing since my muse Lyla entered this world. But I've been getting a lot of common questions lately from our inquisitive supportive network, and I wanted to share the answers with all as an introduction to Chapter 1. (And it's just a metaphor friends - there is no book...yet).Speaking of sharing. That's the first eyebrow-raising concern for many - How are you comfortable sharing your life like an open book with so many people, sometimes strangers?
Some people keep to themselves in their private homes with the blinds closed for no one to see, and some people love things like Facebook to constantly broadcast to their peeps that they thought the season finale of Grey's Anatomy was simply epic...which it was. I think we all know that I fall into the second category of shouting from the rooftops what my day was like and here are the fun pictures to illustrate it. There's just something about letting everyone hear my opinionated voice...and of course keeping long distance Nana updated on Lyla pictures as Sue is counting down the days until she can reunite with her granddaughter's delicate face since visiting week 1 (4th of July in WNY and we cannot wait!). I decided to take my public life stance and turn it into a unique view on Lyla's world for everyone to see. Hey, why not? (She told me she's just like her mama and can't wait to use Facebook, so we've got the thumbs up from her too.) I decided to educate others on what this new beautiful life means. How lucky am I that I get to live in it?!
Now let's do some educating. What does Down Syndrome even mean?
I cant even tell you how many times Troy & I asked this question those first few lost days. But the answer is pretty simple actually. It all comes down to 1 extra chromosome in her body. That's it. In those early days of fertilization, the genes of who makes us who are found in all cells' nucleus. In the nucleus are 23 pairs of chromosomes- half from mom, half from dad. This initial cell had half of Jessica's loving round face and half of Troy's gorgeous...shoot, sorry Troy, she's all me....but there was an error on chromosome 21. Either the sperm or the egg carried over two chromosome 21's instead of one. So as Lyla was cruising down my fallopian tube, cells progressively splitting, every new cell in the body was being given this extra chromosome.
Ok, so what could a tiny extra chromosome do? Actually, it can do a lot. The additional genetic material alters the course of development and causes some different physical features. She will reach all of the milestones that a child without Downs does, but just at a slower pace. Walking around with mama chasing her runaway baby will more than likely be around 2 years old instead of 1. Talking up and down about how Elmo is God will maybe be around 3 years instead of 1.5. I know, it's hard to imagine a 2 year old not talking. But, she'll just get to be my baby a little bit longer.The hardest part to this simplistic answer is the increase in medical problems that Down syndrome brings on. Heart defects, intestinal problems, leukemia, sleep apnea, ear tubes, epilepsy, respiratory infections, and vision problems are all to be watched for in the first year. I know, hard to read. You can imagine my thoughts of Are you freaking kidding me? as I dove into the page-ending pamphlets those first few days at home. I won't even get into the minor things that we get to be mildly paranoid about. But they're nothing compared to the pleads to God to keep leukemia away. Most of you know she didn't escape the first on the list though- a heart defect that will be repaired in her first year, most likely before winter. It's a defect called ASD - atrial septal defect. Best advice- Google it. That little stubborn hole will be filled up by the wonderful doctors that we have met at Childrens Hospital - the meca of all hospitals to take the best care of my baby. It's a one-and-done operation, and then she can get back to ruining outfits mama dresses her up in with explosive diapers right before we're about to walk out the door.
Then there's the question we hear from the doctors all of the time to make sure we're staying sane parents and not entering the nuthouse...How are you feeling?
The timeline of emotions went a little something like this - Birth: Shock, confused, lost. Recovery room: Sad, guilt, fearful. Coming home: Eyes hurt from reading too much, educated, tired. First week alone: Surprised, in awe, love. First month: Protective, ambitious, energetic. Second month: Teacher, maternal, comfortable.What about your job?
Mama's time of impressing the man-infused industrial world and stepping up the corporate ladder is going to have to be set aside for a bit. I'm trading in my steel toed boots for yoga pants and a Hotsling. I know some of you can't stand the 9-5's, but I really did enjoy this new Grainger Boston team and where I was headed. Just as I was starting to turn heads here, because of course I rock, work was told I needed more than just the allowed 3 months maternity leave. I instead asked for a 1 year leave of absence to take care of my little love until that teeny chest is healed up from surgery. We'll see how much she wraps me around her strong-grasping finger before it's time to go back ;)
So sit back, and enjoy the appreciative ride that this angel is going to take us on!Chapter 1...

We Are Family

I can recall every time I've had to "break the news" to my parents. There was never an easy-to-follow guide from an older sibling who screwed up since I was the first born. Where is Lindsay Lohan as an older sister when you need her?! Like the time the rents went to Key Largo when I was a youngin' in high school, and threw my first house party that put scenes out of Weird Science to shame. I was such a smart kid, I didn't have to confess until my college graduation after a few celebration drinks. Or the time I had to tell my crowd-cheering dad, after always striving to be the athlete he was, that I was going to leave the college soccer team after a rough freshman year on my GPA...and social life. And who could forget everyone's faces when I told them I was moving across the country to Alabama! With my boyfriend! Without a ring! Even though it was always hard to say the words, I eventually figured out they were there to listen to anything I had to spit out.

Here comes one of the best days of my life, when I get to break the news to mom and dad on if they have a granddaughter or grandson. Guessing games and baby pools were flying everywhere. When you're 3 weeks early though everyone loses! Who knew she was actually listening to her mama in there when I declared "I'M DONE!" at 37 weeks. As she comes out, I now know I get to shout over our cell phones that it's a sweet baby girl and bring on the PINK!Cue the music. Everyone knows what happened in the next hour. Let's not relive it- I just put my makeup on. But shoot, that's out the window because I need to keep going with this breaking the news theme... Just when I thought I would be clawing for my cell phone to spread the word, in rare Jessica fashion I was silent. I had no urge to talk to anyone that wasn't present in that dark, windowless delivery room. Anyone not there would require those pins and needles words to be muttered out about Lyla's diagnosis. Oddly I hadn't cried yet, and I knew each interaction with a new voice was a recipe for tear explosion. We decided we wouldn't ruin the moment for the ecstatic grandparents, so up the front went on the initial announcements. Only "It's a girl!" was tossed around from phone call to phone call. It killed me to not cry to my mama on the phone, keep my sister in the real-time loop like us sisters always do, or ask the typical "What do I do now?" question to my Dad still in Buffalo. Instead, we waited for everyone to arrive in person those coming early morning hours.
I painfully told Troy before the visitors poured in like tidal waves, I can't be the one to say it. I need him to be the rock on this one. Wave one enters. Wave two touches down. Wave three just 12 hours after giving birth. For once in my life I wasn't able to break the news. I felt defeated. I could only keep my eyes focused on fast asleep Lyla as she was passed around the room in her burrito blanket. My heart ached as each family member faced denial like we did as they stared down at the little face searching for the symptoms we couldn't see either.
But my Grandma said something that stuck with me as she held her first precious great grandchild. My accuracy may be a little off thanks to those numbing drugs that resonated in my head but didn't do crap down there for the delivery, but it went a little something like this - "Well she's loved no matter what, and a part of this family now." I don't think I understood the significance of what she said yet. But now I get it.The outpouring of love and support from our family and close friends has been _______ - I have been sitting here for 2 minutes trying to type in a word here and I can't think of one to explain how over the top it's been. I can only give examples to put it into words. The mailman now knows our first names, and thinks Lyla Jane is a celebrity as daily packages arrive for her. We have received 9 crocheted blankets - these things take WEEKS if not MONTHS to put together! Flowers that just make you smile are on display everywhere and fill the house with a fresh start scent. Phone calls full of laughs come in just when you need them. Loads of baby pink cards and handwritten letters arrive with words of heartwarming encouragement. My Facebook family of friends shower my page with hundreds of comments to make me smile during my break time. And welcomed visits give mom's back a break and alleviate the piles of laundry backing up. Ok, piling laundry was always a problem pre-Lyla, but now she's just a scapegoat for it. It proved to me that the support from your loved ones can take you where you need to be, and out of dark holes full of fears of the future where the medical books will bring you.

I just wanted to say in bold and for the world to see, THANK YOU to all of our family and friends for the indescribable love that has been sent our way. I say this repetitively now since my thank you card writing skills are a little slow, and it may take a couple of months for your card to arrive. And I get to pull the new mom card on that one. But it means so much to know all of you are out there to help steer us along the way. Because of this great healing time down our new road I'm no longer afraid to say it, and can informatively fill anyone in on Lyla's little secret with a smile coming from my heart. No more quivering lips. Sometimes we forget how many lives we are linked to, and this new Dolly family is now constantly sent the kindest reminders. As Grandma said, we're all family now, and I'm so fortunate to have such a great one.

She Sure Can Bring Some Smiles Into This World

It was one of those days. All I wanted was a workout. Who knew leaving the house could be so hard? Cluster feedings all morning. Oops I have to pump too in order for my boobs not to fall off when I'm jump roping. Gotta wash the pump parts too. Crap the diaper bag is empty but I was supposed to leave 5 minutes ago, did I just feel a poop release? I seriously contemplated making the gym babysitter get the gift, but then I decided I wouldn't want to sit in a load of warm mush for a 15-minute scenic car ride that's supposed to be full of refreshing sea breeze air either. Good mom decision Jess.
After a wonderful group exercise class, I feel re-energized and ready to tackle the mountain of them all with her...the grocery store. Big mistake. Her deep sleep from the car lasts half way through the entrance produce area. The binky spared me to the condiments aisle. How am I going to make it to the ending freezer section when she's sucking on that thing like milk better be coming out of there lickity split. And of course, I now have to pee like a racehorse.

We head to the lovely grocery store bathroom that is always dirtier than a gas station bathroom (that's just not right in the world- get on that people). It's a comical thing to picture a mom hovering over the toilet while reaching for the strategically placed carseat in order to keep the pacifier in her mouth to prevent "I'm So Hungry!" screaming for the whole town to hear. But mission accomplished thanks to my thighs that still have some muscle to them after pregnancy.
Thankfully the neighboring pharmacy area has some waiting chairs right next to the blood pressure machine. We park it in order to get a bottle in that begging mouth, and pray our chilled sour cream in the cart makes it through this detour. As I'm making a mental note of how useful this space is for future shopping trips, the cutest little old man in his 80's enters our area to check his blood pressure that I believe is a long-time car dealership employee from the crisp light blue dress shirt, dress pants, and pristine Toyota emblemmed flat-brimmed cap on. He walks over like he's been doing this daily for years, and a delightful expression comes over his face. I realize he's happy to see a new baby. He gets a direct view of Lyla going to town on her bottle, gratifying sighs and all coming from her as that milk fills her belly. I can tell the old man's favorite part is when I have to burp her in a sitting position on my lap, since she's full slate blue eyes towards him. I don't even know how I picked up on this, since my mama eyes were focused on her the whole time and all I said to the man was hello when he came over. Right before she's finished, the quiet man gets up from the machine and says in the most heartfelt way from a hesitant distance on the way out, "Thank you for the best lunch I've had in a while. She's precious." You could tell the frail grandfather's day was made after Lyla brought a little light into it. And my chaos instantly turned into a great day as well.

She brought a smile to his face and a tear to my eye.

Let's Get A Little Caught Up

Ok, this is going to be the Cliff's Notes version of Lyla's first couple of weeks since mom had a little time out from blogging in order to sneak in a shower here and there...

First, I hatched.Then Lyla got to come home to her new crib on the water. Welcome to Beantown baby, full of Dunkin Donuts and the craziest drivers imaginable that mama has to yell at every day.The first week was full of sleep, one of the benefits of a baby who is early. They're still on womb-time and you get to recover from the marathon of pushing. She was always snuggled up in one of her cushiony blankets, warm as can be with a cap on to keep it all in. I love baby hats. Simply impossible to not stare at and inhale her all in.We had many first milestones that I got to freak out over. It's amazing how your baby sneezes, and you're excited over snot rocketing for her. You've done it a million times yourself, but that little mouse-like sneeze is the cutest thing in the world.

The first time Mom figured out how to use the jigsaw puzzle carseat.

The first time Auntie Lulu got a hold of Lyla's wardrobe.
The first time we heard cries that melted our hearts. But she ended up loving bathtime and still does.The first outfit in pink. I dont know what it is about this color, but it just makes you feel so lucky to have a little girl.

These were the good times that brought us up from the bad. The first few weeks were hard in coming to terms with the firsts of Down Syndrome. The first time hearing medical jargon that was way over my head, but when broken down meant she has a common Downs heart defect that will require open heart surgery in her first year. Ouch. The first talk we had with a fellow parent of a 12-year old child with Down Syndrome...who let us know her son was still signing because he wasn't able to talk yet. Damn. The first visit from a social worker who informed us of our new world of Early Intervention and a Down Syndrome Clinic- both of which I knew nothing about, and just nodded upon hearing of like I knew what they entailed. Social worker? The first cardiologist appointment where I had to see my 6lb infant being swallowed by an adult-sized medical exam table, and hooked up to wires and stickers bigger than her own limbs. Where are we? The first time being in public at the pediatrician's waiting room, wondering if the other moms quietly realize she has Downs after coming over to admire her little pink strawberry hat. How do I do this?Like nature intended, the good always outweighs the bad. It's all just live and learn. We're living in the moment and learning along the way how to handle all of these new firsts. Sometimes it involves tears, sometimes it involves silent terror. But it always involves eventual acceptance of where we're at and moving forward to the next first.