6.30.2014

Wake Up Call

There's truly nothing like tragedy to put things in perspective.  This is true of anyone.  It is certainly true of me, especially when I'm already hypersensitive as I both navigate the changes of becoming a family of five and adapt to our new life as a special needs family.

So, when I read about what these parents endured with the loss of their oldest child, read the emotions she went through as a mother, saw the pictures of their last moments with him, I cried.  I bawled.

And then I prayed.

I prayed because my heart felt broken for those parents.  You can tell they are good parents, and you can see how much they loved their child and how hard it was to endure his loss.

My heart hurt for my own parenting failures, especially recent ones.  My mind remembered all the recent times when, from the confines of the couch, arms full of newborn baby or self hooked to a pump, I yelled too much or threatened too readily, times when I resorted to physical punishment when I had to put the baby down or unplug from the pump to run after unruly boys who were not listening to my repeated (and increasingly loud!) demands of them.  Times when the demands of the day, of having three children to look after, of repeating myself for the hundredth time, of getting mired in the monotony have overwhelmed me, set me on edge, and then ultimately pushed me over that edge. 

I imagined what it would be like to be at the threshold of losing a child, of having a child be fine one day and then completely not fine the next, of having to make those unthinkable decisions, of having to face that unspeakable loss. 

Morbid as it may be to do so, I imagined how utterly heartbroken I would be if I were in that circumstance with any of my children.  And I imagined the guilt and regret I would harbor for all the times I have not been more patient.  Times when I have not been the mother I really want to be.  When I have not been the mother my children need and deserve.  Times when, in the light of day, I have been mean and impatient and demanding and tried very hard in the dark of their room at bedtime to make up for it with eleventh hour hugs and kisses and whispered "I love you"s. 

It shook me.  It woke me up.

I prayed for forgiveness.  I prayed for strength to do better, to be calmer, to speak softer, to correct more gently.  I pleaded for the ability to unplug more frequently, to really connect with my children more often during the day, to capture small moments each day where I really look at (or touch or hug) my children and once again feel awestruck at their being, and at the privilege of being their mother. 

I am happy to say that today I was better.

I hope and pray that tomorrow I can be better still, so that for each of the tomorrows my children spend in my home, they will know the depth of my love for them, because they will feel it in the ways I treat them and speak to them, in the ways I confront and deal with conflicts with them, in the ways I respond to challenges, and in the ways I love and hug and touch them, even in the midst of those challenges.

~Nichole

6.28.2014

Child's Eyes

A couple of weeks ago, I let C run around with my camera. It made his day and he took almost 200 pictures.  It was hilarious to look through them.  Hi-larious!  Most of them were random, and most I deleted.  But here are a couple that I saved. 


















The selfies of him on the toilet and of his legs really made me laugh.  There were also ones of his chest, etc. 

So, there you have it: the world through a 4 year old's eyes.

~Nichole

6.25.2014

2 for Two

It's so hard to believe our A is already two!  Knowing that I would be having his baby sister by cesarean, our options for a party were to have it early - which we seriously considered - or doing it on the actual day, which meant I would still be recovering and would have to give up on making his cake.  We opted for the latter, and got him a "McQueen" cake from Safeway.


In true A form, he surprised us by actually eating cake and ice cream!


His favorite things this year have been Big Trucks (his first two-word phrase), ducks, and McQueen.  He got all those and more.  Lucky boy!



This little boy is a whirlwind on legs, walking mischief, and is currently into EVERY. THING!  He's insanely curious, and is bold and unabashed about exploring his surroundings.  He knows when he's being mischievous and I swear he was born with a twinkle in his eye.  He also knows when he's being funny and will try to get everyone to laugh.  If you're sitting on the floor in his vicinity, he'll try to climb you.  True story.

He's got a tempestuous side (watch out for hitting and thrown objects with this one!), but he's also the funniest, sweetest little dude and is usually giving kisses and hugs (when he's not hitting and throwing).  He'll get into a fight with you if you hurt his feelings (hence the hitting and throwing), but really all this boy wants is for everyone to hug and kiss and get along.  Sometimes he'll throw a fit even after he gets what he wants just because he has to stick with what he started, usually he rethinks it and calms down pretty quickly.

He loves books (pulling any and all of them off of shelves and looking through them) and he loves numbers (carrying around foam bath numbers or pointing them out when he sees them, calling every number a "two", which is definitely "age appropriate" - pun intended). 

His favorite words are "No" and "key-yute (cute)" and "truck" and his favorite two-word phrase is "ought now (right now!)" and his favorite three-word phrase is "big cool truck!"  He is repeating words and phrases from everything we say and it's pretty great to hear him pick up on things that way. 

He's a lovely, lively, fun little boy and I'm so glad to call him mine!  Happy Two, dude!

~Nichole

6.14.2014

Hot Hot Heat (and How We're Coping)

When we're not hopping around to appointments, this low-key loving momma is hiding with her chicks indoors.  It's my way of: 1) dealing with the heat; and 2) restoring a sense of calm to our home.  Sometimes going out can be so disrupting! 

But when we're out, we're out.  The other day, I took R to her pediatrician appointment, and while we were out, we also went and got groceries and went and visited her Dada at work, while the boys played their hearts out at their grandparents' house.  But before all that, during the rush of getting out of the house, there was this:

first major blowout - just as we were ready to leave the house!
And when we're not out, we're in.  Sometimes, it gets a little hairy and cabin fever definitely strikes.  But other times, it's not so bad.  Like when the boys build "mountains" out of the furniture cushions in the front room, climb them, and sit on them to watch a movie...


pretty high up and yes, despite my warnings, at least one boy has tumbled off and hit his head on the ground...

And then sometimes I'm writing grocery shopping lists left-handed because I'm holding a baby...

But she's so stinking cute, I can't even help myself!
she's smiling and starting to "coo" at us.  so cute!
She's getting more stable so that putting her in different positions for a few minutes at a timeworks well:
propped up with pillows...
Meanwhile, when they're not sticking their parents' toothbrushes in fully operating fans or clogging bathroom sinks and toilets or screaming/fighting over some toy or other, the boys use their best imaginations (especially the eldest) and employ kitchen chairs as rocket ships:
yup.  it's summer and we're not going anywhere, so why put pants on at all?

blasting off!
And on the weekends, when the Dad is home, we go to summer movie fun (popcorn and candy for breakfast?  hooray!) and then sometimes end up at Chick-fil-A for lunch before feeding the fishes at Bass Pro Shops.  And then sometimes when their parents are too distracted to notice, those adorable boys pilfer small items that their parents discover later in the back of the minivan... And the Dad laughs and says it's in their blood.

Dad (looking admiringly over the pilfered items as we try to figure out who stole what): "We stole stuff all the time when I was growing up!" 
Mom: "Not me!  I got in trouble for stealing a sucker and was made to return it and fess up to what I did.  I never stole again!"

I think it's gonna be a LONG summer!

~Nichole

6.02.2014

Becoming Special

When I was around 28 or 29 weeks pregnant, I was driving to work one day and doing my typical Tevye-type praying (conversing with God while doing daily things).  Heavy on my mind was how on earth I was going to be able to be a special needs mom, that is, actually do the amazing things special needs moms do.

I remember thinking that my current quandary was not very different from the beginning of my mission when I wondered how on earth it was that one becomes a missionary - that is, suddenly gains the ability to do what was required and do it well.

So, I prayed.  I prayed basically for the sun, moon, and sky: specifically for the sum characteristics that make special needs moms "special" - that make them able to endure what they do, advocate the way they do, know what they do, and be what they need to be, all on behalf of their special child.

And then, I laughed at myself as the thought bounced back that I was asking the impossible.  This voice went on to school me on how exactly this special thing works.  Those special needs moms I was envisioning in my head did not get that way over night!  The sum of those characteristics that I, in my angst to be what I will need to be for my daughter, wanted immediately - those are cumulative.  They are hard-won badges of courage, earned in the trenches, day by day and year by year.

How silly of me to presume to want them before I had even begun!

And now that I have begun - and not even truly in earnest, because it's not until next week that I add four additional weekly appointments to attend - I feel a little differently about becoming special.

What I had an inkling of at 29 weeks, I am just beginning to understand more fully now.  There is nothing "special" about a special needs mom, except that she is the mother of her child(ren).  I do not feel "special" for what I do.  I feel like any other reasonably good mother (or father) would do for their child what I do for mine.

If there is anything exceptional or special about me, it's solely that I get to be the mother of my children.  They are what makes me "special".  They are not the lucky ones, I am.  And how very very lucky indeed. 

~Nichole

5.30.2014

Things and Stuff

This past week, we celebrated the second birthday of the second son.  He's a pretty awesome little dude and I need to dedicate a post to him and his birthday festivities.  Suffice it to say, in the meantime, that I am sort of glad that he'll likely be the "baby boy" of this family forever.  He's the sassiest, sweetest, funniest, twinniest little Gemini boy ever and I'm happy he's mine.  As an example, his favorite phrase is "boke it (broke it)" - which is definitely usually the case - and tonight as I was laying him down to sleep, he kept alternately popping his head up to kiss me on the lips and reaching over and touching my face and cheek.  He's gonna melt hearts one day, I swear.  He already does mine.

Our firstborn - who loves the story of how he made me a mommy and his dad a daddy - is making strides of his own.  One day something (shaming, lecturing, threats, age-old marble racer bribes... who knows!?) clicked for him and he magically stopped pooping in his pants.  {Can I get a halle-freakin-lujah!????!}  I thought getting him to wipe his own bum might present the same challenge potty training had, and was stressed because he's due to go to summer camp in a few weeks' time! (yes, I totally used summer camp as a bribe also.)  So, I looked up some strategies, and we've worked on it together (including one cell phone pic of his naked, poop-smeared bum to show him what not to do).  There have been times, during M's first week back to work this week, that I couldn't drop everything and heed the clarion calls of "Mom!  I'm done on the toilet!  Mah-ohmmmmm!  I'm DONE on the TOILET!..... MOM!"  And so, he had to practice.  And I had to check him.  And he's done awesome!  He continues to amaze me every time he sets out to do something.  All this change has not been easy on him, though he puts on a brave (and stoic) face, but he really is the sweetest kid under that crunchy candy shell of his!

If you're looking for updates on our newest addition, I've started a private blog.  {Email me if you'd like to be included!}  We're not as aggressive (or consistent, I should say) with her at-home therapies as we should be.  She's getting stretched and moved daily, but not as often as we should.  But, even so, she's making some great progress.  She's been approved for the early intervention program, and will be seeing lots more specialists and therapists in the coming weeks.  She's begun serial casting of her left leg and foot and we're hoping to start on her right leg and knee very soon!  We're also hoping the hand specialist will start splinting her hands and wrists when he sees her for a consult in about a week.  She's a champion sleeper, a sweet little spirit, and one of the bravest little souls I've had the pleasure of mothering.

~Nichole

5.20.2014

R's Birth Story

In the days and hours leading up to R's birth, I grew more and more nervous. 

I didn't feel really and truly safe until Wednesday morning, when I was strapped up to monitors and baby's heartbeat was providing the background noise to my nervous energy as the nurses prepped me for surgery. Up until that moment, I remained scared something would happen to her at the very last minute. Even up until the night before, I continued to send my nightly bedtime dispatches to her: "hang in there with me baby girl! only 1 more day left!"

There was still a lot to know: whether she'd be healthy, how much her condition would affect her, how long she would be hospitalized.

But, for that moment, getting prepped by friendly nurses was distracting me from worrying much beyond the present moment. One scary thing at a time.

The first scary thing was getting my IV.  I hate IVs and all my recent ones have been in the back of my right hand.  This one was placed in my left wrist and once it was in, it was awesome.

surgical cap in hand - almost "go time"!
M in his "zoot suit"
I met the OB who was performing the surgery.  We talked about baby's position, and the doc got an ultrasound machine to confirm.  He said he didn't think he'd have to do any special or extra incision - that a normal transverse incision should work just fine.  

The next scary thing was getting the spinal.  The nurse who was going to be there for my surgery and recovery wheeled me to the OR.  When she pressed that button and the OR door opened, I saw the overhead surgical lights, tons of medical equipment, and a scrub tech.  My anxiety went through the roof and my lower jaw started to shake.  The room was seriously serious, and seriously cold!

They had me straddle the operating table like I was on a horse and the kindly male anesthesiology tech held me in a hunched position while the anesthesiologist poked my back twice.  Once the warm sensation hit my toes, I felt much calmer.  "Spinals really are easier and better than epidurals!" I thought.  They laid me back and brought M in.  The feeling they warned me about - like someone was sitting on my chest - was immediately there.  I tried to remember I could breathe deeply, even if it felt like I couldn't.  Still, my voice took on a wheezy quality.  M came in the room and put his cold hands on my forehead, which felt really good and comforting.  (We were both really nervous, but could only voice it to each other afterwards.)

I waded through a strange zone of surreality as I was cut, suctioned, poked and tugged on.  I was there, but not there - sort of like playing Telephone - listening for the doc and nurses to call out their reports: "fluid is clear!" "pressure is good!" and so forth.  All of the sudden, some of the pressure on my chest lightened.

And then, the best sound in the whole entire world: R's cry.  It was strong!  And hearty!  Tears of absolute relief flooded my own eyes and salt rivulets ran down toward my ears.  I knew then she would be ok.  I saw as they lifted her up on their way past me.  She was tiny!  (C was 8.5 lbs; A was 7.6 lbs; R was only 5.9 lbs!) My hearing shifted focus and I began listening very closely to what was going on to my left, rather than what was happening below my waist.

The neonatologist - a female Asian doctor who immediately struck me as a straight talker - was at my head within minutes, telling me baby R was crying well and that if we can get her eating, she might be able to be in NICU only a short time, that she seems fine in every other way other than the expected contractures in her limbs. 

And then, she was there for me to touch and see and kiss.


I got a few more kisses in before they took her away again.  Then, I closed my eyes and rested while they finished sewing me back up. 

In recovery, I heard a new momma with her new baby immediately across from me.  In the haze of fatigue and drugs, I would hear that baby cry and my mind would panic "my baby! my baby!" and I kept telling myself, "She's here.  She's safe! She's here. She's safe."  I prayed prayers of gratitude for the blessing of having a healthy baby girl, of having prayers of faith uttered by myself and others be answered so generously.

Then, I started to try to move my legs.  They were like stone.  I wanted them to move, was willing them to move and they would not move.  So different from an epidural. Let it be said that I don't ever want to have a spinal injury!  But those moments in recovery have made me understand what it must be like for our girl.  It is very frustrating to not be able to move your body the way you want to!

Wednesday was dedicated mostly to recovery, and a quick visit upstairs to visit my baby.  Thursday was visitors, then IV removal, a shower, and getting over to NICU to see my girl.  I first saw the neonatologist, who said that several tests still needed to be cleared, and explained what would happen next.  I saw the hospital caseworker, the neurosurgeon, the physical therapist.  I was told about state programs, I saw a few of the 212 images they took of her head and was told she was fine neurologically, and we were shown how to do some stretches and given a car bed to take her home in.

I was so very grateful for visitors who came to see me at the hospital.  It was a lonely prospect to have just had a baby and not have her there with me, and to have M's time dedicated to caring for our boys and providing as much normalcy for them as possible at home.  And when I felt the loneliest - on Thursday night, after M and the kids left and I was in too much pain to get back to my girl by myself - I sent out text messages from the confines of my bed.

I rectified my loneliness by spending all of Friday morning holding, feeding and changing my baby girl by her NICU bedside.  In the "quiet" of those hours, I had several more opportunities to feel supremely grateful.  One of those was when I heard a momma across the way feeding her baby through a g-tube as I fed my baby by bottle.  That was a very distinct possibility for us and I felt very grateful that we were not on that path, but my heart broke for that momma.

On Saturday, we got to come home!  We got discharged pretty much simultaneously, and visiting family drove us home while M finished purchasing a minivan that could accommodate a car bed, a convertible car seat and a booster seat.  In those first few moments and days at home, I would just stand there, looking over this baby girl in awe and say to M, "I am so grateful.  I am so grateful!"

And so we all are.  (C keeps thanking me for his baby sister and both C and A kiss her every chance they get!)

~Nichole

5.13.2014

About the Name

Those of you who pay attention on Facebook will have seen the announcement of our sweet baby girl's birth, along with her name and other such details.

Here's how it goes with the naming: I look up names, give them to M and he vetoes or says "maybe" until we settle on a few we like.  Then M falls in love with one name, forsaking all others, and I hem and haw over it until after they're born.

So, it was kind of a Big Deal that this baby girl was named while she was still baking, before we even began the third trimester.  Though we had a strong candidate for a name for C, he wasn't actually officially named until his second day of life.  A's name was officially his only a few days before he was born, and only because I had a dream about what he would look like and that the name we picked (and I was continuing to hem and haw over) was, in fact, his name.

There is no doubt that this little baby girl's condition factored into our naming process.  We considered names I never thought would be on our list of possible names.  And then, as we do, M fell in love with The Name, forsaking all others, while I hemmed and hawed for months.  People would ask the name question and I would just look at M, waiting for him to answer.  (And, in a new twist, it's the first time we've told people the name before the baby was born.  Feel lucky, chosen people, feel lucky.)

So, here's how and why we settled on what we did:

R - that her will and her character will be of deep and flowing strength and that her body will be both resilient and flexible (and that she will defy the expectations of those who would underestimate her because of outward appearance)
N - because she is a gift from God to us

Welcome beautiful baby R...
We love you more than words can express!

~Nichole

5.07.2014

39 Weeks

How far along: 39 Weeks, 0 days - and going in for our C section [made it to 40w3d with C before I went into labor; made it to 39w0d with A and was induced]
Gender: Girl!
Weight gain:  30 pounds [40-ish pounds with C; 40 pounds with A]
Stretch marks:  Not this time, nor any other time.  [The small stretch marks on my hips (from mission weight gain) turned red with C, but never did anything this time or with A.]
Belly button in or out: In! [as it has been each time.]
Worst moment this week: Trying to put lotion on my legs post-shower is pretty laughable, and makes me feel pretty "done".  And feeling my feet swell with water is never really that fun!  But the worst is the anxiety that threatens to swallow me up if I let it take hold.  So I don't let it.  I push it away.  As I told M, I can fall apart afterward, in the "privacy" of my hospital room.
Best moment(s) this week: It was pretty great laying on the boys' bed trying to get A back to sleep in the wee hours of Saturday morning and being able to pop both hips!  BUT, hands down, the best EVER is gonna be TODAY!
Miss anything: My more "slender" feet and legs.  [Swelling was the very worst with C; better with A; and best this time around!]
Ultrasound count to date: 17.  [I'd really be interested in finding out how many I had with C and how many with A.  But I'm too lazy to go find those pics in their albums and count them.  I think they're about the same - between 4 and 6 each.]
Movement: It's still pretty regular, but also less. 
Cravings: On Saturday, I wanted an A&W root beer float.  I settled for a Sonic blended float instead. On Sunday, I wanted Almond Roca.  [With C, I craved chili dogs and with A, it was sweets; this time, it's been all over the map.  But yeah, sweets.]
Queasy or sick: Nope. :)
Looking forward to: Meeting baby in a few hours' time!! 

~Nichole

5.02.2014

38 Weeks


How far along: 38 Weeks
Gender: Girl!
Weight gain:  30 pounds 
Stretch marks:  No. (hooray!)
Belly button in or out: In!
Sleep: Worse.  Heartburn is really the worst ever when trying to sleep!
Worst moment this week: Standing in the shower, watching my belly shake with baby hiccups and realizing these are probably my last moments being pregnant and experiencing this ever.  Like ever ever
Best moment(s) this week: Getting the last minute things done.  Plus two play dates here at the house!  Fun.
Miss anything: A non-acidic, non-radiating esophagus...
Ultrasound count to date: 17.  Baby girl failed her NST for the second time on Tuesday and we had to do an extra ultrasound (BPP).  She looked good: was practicing breathing, heart was strong, and she had good "gross body movement" (and I got a pic of her "full head of hair").  She passed her NST today, so we got to have on a regular fluid check on that visit, but they still looked for breathing, movement and heart rate.  We're definitely in the home stretch!
Movement: Definitely happening, but definitely less.  I think she's running out of room...
Cravings:  Ice.  Chocolate.  Green smoothies.
Queasy or sick: Nope.
Looking forward to: Next Wednesday!!  Feeling very ready to meet this baby girl!

**Weekly update from perinatolgist's office: On Tuesday, baby girl failed her NST for the second time, which means I got to see her again on ultrasound.  Today, they had to buzz her again, but this time she passed!  Everything looks good.  Only one more NST on the day before her birth day!

~Nichole
"May you be in love every day for the next 20,000 days. And out of that love, remake a world." -Ray Bradbury