Normalcy

Is it sad to pin your dreams on the idea of being normal? I'm not talking about being exceptional or gifted, I'm simply talking about being normal.
Lately, it's all I can think about. Before we had kids, I had these really grandiose ideas about the things I wanted for my child. I imagined the things we would do, the places we would go, the traditions I wanted to share with my kids, the values I would instill in them, etc. And today, I sit here typing away with a lot of confusion, a tinge of jealousy for the parents who have it quote unquote 'easy', but mostly I'm sad.  I don't want to be guest #1 at a pity party for the ungrateful. I know how lucky I am that I can sit here and type of these feelings and emotions. I know that I'm lucky that I have a little boy to be worried about.  In the last couple months of 2009, my family and my doctors didn't think the likelihood of this day was going to be possible. On the contrary, they told my husband and parents that if I didn't show at least 10% improvement in the first 5 -7 days in the ICU, that they needed to be prepared to start making arrangements because they were doing everything they could for me and the baby but I was not responding to treatment.
But what about the flip side? I don't think I had any idea about how hard it was going to be.  I was ill-prepared for this journey we've been on since the day Noah was born.  It's been in one word, a fight. A fight for his life in his early NICU days, a fight to get his reflux and gastro issues under control, a fight to stave off the possibility of him going blind from ROP, a fight to get him to eat and grow at a good rate to take him home, a fight to find the right combination(s) of meds for his severe reflux, a fight to get the proper evaluations done for his early intervention and therapies, a fight to keep him healthy and away from germs and sick people, a fight to find the right formula ratio, a fight to get him to eat baby food, a fight to get him to crawl/sit/stand/walk/jump/climb steps, a fight to get him off his Pediasure and eating solid foods, a fight to get him to swallow his food, a fight to teach him to potty train, a fight to keep his clothes on when all he wants to do is be naked... and now I feel like I'm fighting for my own personal sanity.
And I feel like it's a battle I'm losing more and more everyday. I'm left clinging to what little hope I have left for that concept, that thing I've become complacent for... normalcy. I want to scream at the top of my lungs and ask why me, why us? I stare the feeling of being a failure straight in the eyes, everyday. I wonder if I'm doing the right things, often enough, hard enough.  I second guess myself and fear that I'm not strong enough to handle this life that was thrust upon us the second I woke up from that coma. And I know how desperate and pleading this sounds, but it's what I feel. It's days like this when it's hard to feel thankful for the opportunity to stress over that little 2lb preemie.   Was all of it worth it if Noah is struggling like this, every day?
These past few weeks have been especially brutal. After almost escaping this cold and flu season unscathed, Noah caught a really bad cold. I knew something was up when his older cousin came over to the house and wasn't feeling good at all.  He didn't want to play, all he wanted to do was sleep and be held. That was on a Friday, and by Monday, Noah had caught whatever his cousin had.  The sneezing started and by that evening the phlegm and cough had taken over.  The next couple days were like any other time when he caught even a slight sniffle, he started throwing up from the post nasal drip and then it snowballed from there. We did the homeopathic things we always do when we think he's getting sick (the Vicks on his chest and feet, the vaporizer, the essential oil on the tea light burner, warm baths, and Similason Cold n Cough) but nothing seemed to help.  We ended up in the emergency room a few days after that from off and on temperatures, constant throwing up from the phlegm and runny nose, decreased fluid intake, etc. The ER told us he looked and sounded ok and just to keep pushing fluids. They also said that he had a slight ear infection but not anything that required antibiotics.  I should have followed my mommy instincts and pushed for the antibiotics as a precautionary measure to prevent the ear infection from getting worse, but like the stupid person I am, I trusted the docs knew what was best.  Two days later we were back in urgent care.  Confirmed ear infection and antibiotic regimen needed stat. It's been about 3 weeks now and he is still not 100%. He has lots of secretions, his appetite is horrible, his digestion and bowel movements are as bad as they've ever been and he's now got into the habit of chewing up food and spitting it out so he doesn't have to swallow it. In total, he's lost about 2lbs and with no appetite or way of getting food into his stomach, I'm at my wits end and want to crawl up into a ball and cry.  We've literally taken 5 steps backwards.
A million questions are racing through my head at any given moment in the day: when is he going to get better, does it seem like he's getting worse, am I going to get some sleep tonight or will he be up all night coughing again, what if his appetite never comes back and this is that one illness we feared would push him over the edge and start his outright food refusal, are we heading down the path of a g-tube, why aren't his OT and speech therapists helping him in this regard, will he ever eat, how is he going to gain that weight back, is this going to effect his overall growth and development, WHY CAN'T THINGS BE NORMAL FOR A LITTLE WHILE?  Not always, but just for a little while?  I need some peace, I need some reassurance that things are going to be okay.  And I just don't feel like that.  Being a parent is hard, we go through trials and tribulations that test our patience and strengthen our bonds with our children.  But the relationship I have with Noah is one that has been centered on a deep pressure to do my very best for him.  To help him reach his milestones (or in our case, inchstones), to keep him on his growth curve, to be his advocate, to be his therapist, to be everything but what I've always wanted to be, just his mom.  A mom to a carefree toddler.
I know that these are the times that I am supposed to rely on my faith.  God has seen me and my family through some pretty tough times and he's never abandoned us. But after 2.5 years of going no where with Noah in terms of his eating, lack of interest/desire to do so, my knees are sore from all the praying I've done for something to give.  I keep waiting for that little light bulb to switch on.  I keep waiting for him to get a taste of something he just can't put down. I keep waiting for him to drink or eat something just because, for the sheer enjoyment of it. And all I get is one disappointment after another.  Yes, he has gained steadily and yes, he is on the growth curve.  But it is only because of his dependency on his bottle and Pediasure. I can't imagine all that sugar is good for his little body or his teeth which he is already having issues with.  I can't imagine eating the same thing day after day, a thick and creamy sugary liquid, meal after meal after meal.  What are the long term effects?  But what do I do if it's all that he'll take?  Do I stop and risk further weight loss and possible refusal of the only thing he takes?  What do I do?  And that's the other frustrating side of things.  No one can tell us what to do or offer suggestions or plan of attack.  Do we go down the route of appetite stimulants?  Do we seek more aggressive treatment for his oral/feeding delays? Do we toss out the bottle and hope he doesn't starve? What?!?!?!?!
So if you're wondering why you don't see much of us look at us like we're crazy because he's still on a bottle, understand that there are sometimes things outside of what you may think you understand. There's a whole world of people out there going through things you take for granted.  Something as simple as providing nourishment to a child or brushing off a little illness as a way of building up his immune system.
I used to think that I might look back on these posts one day with a laugh and a chuckle after I realized how far we had come.  But now I feel like I am chasing this idea of being normal and the gap is widening a little bit more every day. And that's what scares me the most, the idea that I will get to a point one day and not have that small spark of hope that keeps me keeping on every day.  And what will I do then?

Noah is Two!

"Holy moly, spicy guacamole!"
-Moose A. Moose (NickJr)

Can't believe how time keeps on flying by.  On December 7, 2011 our 2lb preemie turned 2! How did this happen?! I remember the events that led up to his birth and me waking from my coma to find myself a new mother, the first time I held him, the first time I was strong enough to stand up by his isolette and change his little preemie diaper, the day we brought him home and how it rained the whole way up, the first time I took a bath with him, when I secretly whispered mama over and over again after he said his first word (the opposite of mama, LOL!), the first time he cooed at me and the way those big brown eyes shined up at me, when he rolled over for the first time... all the way up until now.  A big two year old little boy.  Again, I ask, how did that happen?  How did we go from calling him a baby, to calling him a boy?  The truth of the matter is this, he will always be my baby.  Not because he is probably my first and last, but because he is the whole of my heart, my greatest accomplishment.  Nothing I ever did before mattered until I held the product of mine and Mike's love in these two arms. He has shown me how to fight, how to love, how to stress and how to walk in the light of God's blessings. I find myself thinking of all the things I want to show him, the lessons I hope to teach and I stop myself because I realize that nothing I ever say or do can begin to touch upon all of the things he has taught me.  And for that I am so thankful to be his mommy.

Ok, let me wipe away my tears and let's talk about Noah at 2 years old!
Character: He is the biggest one I know.  He relishes in attention and has even devised a way of making sure to get it.  He pretends to sneeze.  Only a parent of preemie will recognize the importance of a sneeze. It can be a precursor, a marker of an illness that is sure to come.  It can paralyze us as we fear the worst and brace for the fallout of something as simple as cute sound that kids make.  Could it be RSV?  Did he catch the Flu? Yes, a sneeze will make us drop everything and start a 'zap this illness in the ass' protocol: sanitizing every surface and toy, washing clothes and bedding, turning on the vaporizer or starting a breathing treatment plan just in case.  A sneeze = a sure fire way to get attention at once.  And my, does he love to pretend to sneeze!
Favorite words, including and not limited to: shit (had to make that one first based on sheer clarity and cognition), hi/bye, see ya, help, tv, bath time, jump, Lola, Bella, car, Oobi, Gabba, num num, baba, clean clean, Miaaaaaaaaa, NO!, yesh (as in Yes), hold me, wawa (agua), light, trash, off, socks, dipee (diaper), Elmo, pee pee, poop, push, all done (you like that sequence of words don't you?!), careful, mimi (sleep), mommy/daddy, horsey, Tia, open, soup, hot, bubbles, blow, happy, beya (better), ok, knock knock, ssshhh, shoes, tea, brush brush, cheese... and I'm done now.
Things I love about him right now: the way he makes a super annunciation of his kisses (mmmmwwwwaaaaaaahhhhhhhh), how he comes to find me when he hurts himself so I can kiss it and make it better, the way he runs into the room after Mike gives him his bottle in the morning and yells "Mommy", how he won't leave me alone when I'm cooking in the kitchen, the little dimple on his lower cheek/chin when he smiles or laughs extra hard, how he says no even when he means yes, how he jumps on my back (practically choking me out) to be his horsey, the way he gets your face to make eye contact when he really wants something (especially Talking Tom, aka kitty), the way he skips forward on his microphone that plays music to get to the song "Skip to my Lou", the fact that he still can't get up and down stairs by himself yet and that he needs my help to hold his hand and get him down or up, the fact that he is social butterfly and will go up to anybody and everybody to start up a one-word conversation, his complete and utter adoration of his daddy (we have this in common).

Can't wait to see what this year brings, I am so proud of this miracle!

Yo Gabba Gabba Live 2011: The Realization of Dream Come True

Hee hee, I don't know if I mean my dream come true or Noah's!  Today we had the pleasure of going to see the Yo Gabba Gabba gang at the San Diego Civic Theatre.  Thanks to the YGG Street Team, we were able to get VIP passes to meet them in person after the show too!  In exchange for posting a few flyers around town and talking about the show to friends and family, the great folks at Yo Gabba Gabba set up this sweet deal.  Noah had fun, albeit in a more calm manner than I had predicted, I owe it to him not getting his normal nap beforehand.  He was mesmerized and they had his attention the whole time.  He danced a couple times while he sat in our lap and when it was over, the fun began.  He had a blast getting to meet the characters in person afterward and the Food Network show "Cupcake Wars" was even filming at the meet and greet.  I think Mike and I had just as much, if not more, fun than Noah and I'm hoping next year will be even better!  Here we go, "Yooooooo Gabbbbaaa Gabbbbbaaaa!!"

She's a Bad Mamma Jamma (and not in the good way)

August?! Really!?  That was my last journal entry!!  This starting off every blog apologizing for the lag time since the last one is becoming a habit that I just can't kick.  I am hoping it will get better, just give me some time.
I plead insanity!  And I'm really not kidding!  I guess you could say it all started when we... MOVED INTO OUR NEW HOME!!!  Yippee, we are so beyond that this became a reality and that Noah finally has a place to call home, forever.  Here she is, and our street name is fitting since we like to party (whether it's we're doing it like it's 1999 or singing a favorite YGG tune "There's A Party in my Tummy"): we live on Luau St! Hula time! LOL!  Added bonus, we are directly in between my parents and sister's house on the other side of the highway.  Noah has been having a blast being so close to his Nana, Tata, Tios/Tias and cousins.  Here she is, isn't she a beaut?!  Did I mention we practically have a football field sized backyard that we plan to do some great things with?  We live on a cul-de-sac with great young families and have a toddler park adjacent to the house!  Double bonus, we are certified green and have solar panels that generate energy!  Woo-hoo!

Ok, so aside from this major life event I don't have much to report.  It's been all consuming really.  It's taken Noah a little time to adjust to the change and his schedule was really off there for a while with new surroundings,  furniture deliveries, and various appointments for house stuff.  We finally cleared out the garage today (almost 2 months after being here).  Remind me to never move with a toddler, EVER AGAIN!  And now, it's just a matter of hanging some stuff up, painting a couple more rooms and having a major garage sale to sell some stuff we've been wanting to get rid of for a while now.  I can't believe we're in our forever home!
Let's see, what else?   November is Prematurity Awareness month and on that note I thought I would share a couple things that I've been doing to help families of premature babies and babies who were born with special medical needs.  I have teamed up with the lovely and wonderful Dr Daneshmand and his organization Miracle Babies who helped Mike and I while Noah was in the NICU.  Another fellow preemie mom whom I met while trying to set up a smaller preemie support group for central San Diego, decided to start the Miracle Babies Family Network- San Diego Chapter.  We are basically a support group for the Miracle Babies organization.  Here's a little spiel from our flyers which we plan on posting in every hospital in San Diego:

I am so excited about this wonderful opportunity to help Dr Daneshmand and Miracle Babies support families who are going through a very tough time in their life.  Having walked that path almost 2 years ago, I can't tell you how much I would have loved to have a group of people to commiserate with, people who knew exactly what we were going through.  Tanya and I make a great team and I am lucky to have crossed paths with her this past July.  This is going to be a great thing and I hope to expand this to the Temecula/Riverside area now that we're up here.
On the Noah front, what can I say about this special peanut?  I mean I probably sound like a broken record at this point but this is both the hardest and most beautiful experiences of my life.  No one ever goes their whole life planning on raising a preemie child.  I sure as heck did not.  No one can ever truly grasp the heartache and triumphs one experiences while raising these precious angels.  I don't know how many people pick up something that weighs 1 or 2lbs and thinks, "I can't believe my baby used to be this small".  Sometimes I'm taken back when I look at his NICU pictures and realize how far he's come.  This is overshadowed a lot by how much further we still have to go.  Noah is doing pretty well given his crazy entrance into this world.  But we struggle, mainly with gastrointestinal issues such as GERD, poor digestion, vomiting, gagging, constipation, food refusal, trouble chewing and swallowing, weaning him from his Pediasure, etc...
This is the longest amount of time it's taken him to gain a pound and he is hovering at 24lbs 14oz and 25lbs 2oz now.  I really can't wait for the day when I look back on these blog entries with relief that these days are over and these mountains and molehills are a thing of the past.  I know I'll be able to do that one day, I just don't know when.  If you're there God (and I know you most definitely are) sooner would be so much better than later.  ;)
On a much more positive note, Noah's personality is really starting to come through lately.  I think we are entering the dreaded words every parent doesn't want to hear or acknowledge: The Terrible Two's (which will now be referred to as TTT)! He has always been, shall we call it, strong willed.  It's this stubbornness that helped him win the fight for his life.  It's the same thing that has me pulling out my hair and rubbing my earlobes while chanting "Wooo-saaa" repeatedly throughout the day.  He is obsessed with other people's shoes and tearing out pages of his books.  He is still going strong with his "eyes/ojitos" which he still is convinced carry limitless mind power, making even the strongest succumb to his every demand.  He loves to hurt himself on purpose (only with the smallest touch or bump into something because we all know what a sensitive guy he is) so that I can kiss it and make it better by singing an old Mexican song and then proceeding to punish the offender (whether it's a wall, the floor, or a toy) by 'spanking' it.  This has lead to another issue in which he raises his eyebrows, lifts his arm, cocks his hand back and wants to "spank" everything in sight, including his poor innocent mother who almost gave her life to save him (I warned you all that I would be using this little tidbit whenever the situation warranted).  I've created a monster!  He is still very much into cleaning up with baby wipes and his little broom and vacuum, I wonder if he'll still be this way when he's 15?  A girl can wish, right?!  His new thing is spitting and watching his spit fall to the ground, I know, yay!  Typical boy stuff that I have to be prepared for I guess.  He's still in love with his regulars: Yo Gabba Gabba, Fresh Beat Band, Oobi, and Elmo.  He still loves his baths and anything having to do with his beloved "Wa-Wa".  Here is a list of words I can think of off the top of my head...

He says:
Dada
Mama
Nana
Tata
Mia
Tia
Ball
Bird
Wa-Wa (water)
Shoes
Bye or Bye-Bye
Go (as in Go Chargers, which he yells at the TV screen.  That's our boy!)
Light
Num Num (food)
Ba Ba (bottle)
Kitty
Oobi
Elmo
Gab Gab (Yo Gabba Gabba)
Lola
Hot
Muah (kiss)
Mimi
Nite Nite
Up/Down (usually in that sequence, back to back so you to pick him up)
Outside
Juice
Bath Time
Knock Knock
Push
Cookie
Baby
Pank (Spank)
Bounce (Jump)
Eyes
Bee Bee (Beep Beep)
Fi (High Five)
Wee (Swing)
Pee Pee
Poo Poo

He signs:
More
All Done
Thank you

We had an amazing block party for Halloween (I love our new neighbors/neighborhood) and Noah was a super cute Elmo.  His cousin Isaiah was Woody from Toy Story and Mia was Alice from Alice in Wonderland.  And of course, the two older cousins are too cool for school and this was the first Halloween they didn't dress up.  I knew these days would come, but I didn't think they'd come so fast!
Ok, I am going to pass out talking about this crazy kid and our hectic life as of late!  I will post soon, and by that I mean sooner rather than later! ;)

24...

Pounds! Baby boy reached 24lbs yesterday and we have proof:

What does this mean exactly, you ask?  Well here's some stats based on the assumption that he hasn't grown taller since he was measured last month when he was 2' 6" tall and adjusting for his corrected age (or what he really should be since he was a preemie):

Length for Age = 25th percentile
Weight for Age = 25th percentile
Head Circumference for Age = 85th percentile *he is rather smart
Weight for Length = 60th percentile *yes, you read that correct, ABOVE AVERAGE!

So proud of my honey bunny!  We will continue to practice until he gets this whole 'eating' thing down and we can throw away his bottles and Pediasure for good! God is good and prayer pays off!

Lately

Nothing too crazy to report in our neck of the woods.  It's August now which means that my favorite time of year is almost upon us, Fall!  It have to say that this Summer went by really fast!  Time seems to be flying lately, it's almost surreal to think about sometimes.  Noah wasn't walking but two months ago and now I can't get him to sit still!  We're still working on his balance and core strength and I know those things will come with time.  Before I know it, I'm going to forget about how it looks like he's marching when he walks or how he falls down when he tries to turn around too fast.  I still think of him as my little guy but as evidenced by our visit to Stride Rite yesterday where we found out he's now a size 6 (he was only a 4.5 back in April), he is becoming a bigger boy everyday.  Here's that double-edged sword coming out to poke me in my butt again.  I'm so happy that he's growing and catching up from his preemiehood.  But at the same time, I catch myself wondering in awe about how far he's come and how much of toddler he is becoming.  He craves independence, has a mind and attitude all his own (where did he get stubbornness from, I wonder ;]), learns new things everyday, and most of all makes us fall more in love with him.
This little guy is super social and even more hysterical when he's in a silly mood.  He knows what buttons to push and how to get anyone to give in to him.  I love it when he rolls his arms/hands at just the right time during pat-a-cake or how he brings his little fingertips together to copy us signing more.  This little boy has got some moves when he dances to the Fresh Beat Band or hears a song with a good beat in the car.  Have you seen him do his "eyes" or "ojitos" at you?! It's pure comedy.
These are just a couple things that get me through the daily struggles of raising a half-baked early birdie preemie.   In between all of his doctors appointments and therapies or the struggles with his feeding and bowel movements, I close my eyes and thank God for everything he's given us. I think it's important to remind myself that we are fortunate souls that God has blessed and given the most important job in the world to.  Yes it's hard.  Yes, there are days when I want to compare our journey with others who appear to have it much easier than us (whether they deserve it or not).  But ultimately, this experience has brought more wonderful things into ours and our families lives than bad and I wouldn't change anything for the world.  We have a deeper understanding of the preciousness of time, health and life.  We are more grateful, loving, compassionate, and stronger people.  We have a constant reminder of God's grace who's eyes we can look into everyday.  We are, if anything, undeserving.  That's all that I've been able to think about, lately.

Noah's 1st Driving Lesson

Ok, before I start getting reported to CPS, this was in a gated parking lot, in the middle of the day when no one was around and we went approximately 300 feet.  /Disclaimer.