Meet Cove

Sometimes I get frustrated that words are all I have.  But at those times I remind myself that words are power.  Light.  Hope.  Love.  Today, I dedicate my words to Cove, to Keir, to Jenny.  All of them, my heroes.   

---

Imagine yourself in a hospital room.  Imagine yourself in this same room for weeks and weeks on end.  You have a routine, waking up at 6:00 AM every morning for vitals to be checked.  Going for walks in the maze-like corridors.  Passing nurse after nurse, all of them know your name.  And your baby's name.  You have created a sanctuary for her within your half of that small room, trying with every ounce of creativity to make it more comfortable, more like home, more cheerful.  Streamers hang above her bed and her little nest of colorful blankets and pillows is surrounded by her stuffed animals.  She is made happy by all of this, for she is sweet and simple, finding joy in even the smallest things, like when you say her name or when she hears your laugh.  Yes, she is happy... but sometimes that happiness leaves a bittersweet taste in your mouth as you think of how much more happy she could be elsewhere, if she was ok again.  If only she was ok again....

You are on your own most of the time.  You feed her on your own, hoping she will keep it down.  Cuddle her on your own, watching out for wires and tubes, ivs and sensors.  Watch her sleep on your own, wishing she was more awake and more vibrant like you know she should be.  You, her mother, know her better than anyone in the world.  You, her mother, would stay in this hospital room for years and years.  As long as it takes.  You, her mother, would literally go to the ends of the earth if that meant she would be ok again.  If only she was ok again....

You are her mother.  She has chosen you.  The weight of her choice weighs upon you at times. How can you do it alone?  How can you make all the important decisions?  How can you find, where there is nothing, all that you need to fight on?  All of the energy, strength, willpower, money, time.  Hopelessness tries to seep through the doorways; despair tries to find you in the quiet, dark moments of night.  You sit on your hard, uncomfortable pull-out bed, trying to ward them off, for you are all she has.  All she has, you fight for her tirelessly.  "You are a warrior," they say but do they know that you tire of having to be a warrior?  You want to be just a mom again.  If only she was ok again....

Yet, she stares at you, serene and trusting.  In her bottomless eyes she reminds you again that she chose you for such a time as this and the door slams shut on hopelessness and the light drives away despair.  And that boy toddles in the door, that wonderful little boy...!  He creeps into your lap, loving your presence, hanging on your every word -- in these actions, in his sweet face looking up at you every second he can, you know that he misses you.  Precious little son, standing by his sister's bedside.  You marvel at them both.  They too are warriors, but you yearn with all your heart that they could be just babies again.  If only she was ok again.... 

---

He is Keir and she is Cove.  I met them about a month ago, and my heart has been heavily burdened for them ever since.  Their mom, Jenny, has quickly become one of my heroes.  I have not known them long and don't know all the medical intricacies, but I will sum it up as best I can and include links with more info below.  Keir struggles with seizures and Cove struggles with her stomach, intestines, and GI tract.  They are both warrior babies, children of one of the strongest women I know.  Keir is thriving now, however, Cove has been in and out of the hospital since her birth approximately five months ago. 

Although she has become lethargic, has painful vomiting episodes many times throughout the day, and is consistently losing weight, her doctors at her current hospital in Los Angeles keep sending Cove home, much to the frustration of Jenny.  Jenny has that maternal gut instinct that is telling her something is wrong; telling her that there is something that they're not getting to the bottom of.  Not only that, but it is killing her to watch her daughter slowly lose weight and become less and less like her active, alert self.  There is a team of doctors at The Children's Hospital of Chicago who Cove needs to see.  She needs this second opinion. 

First of all, please, please take the time to meet Cove on your own.  Here is the link to Jenny's Instagram account (how I first met this family) where she has documented every step of their journey so far.  http://instagram.com/keir_and_cove  @keir_and_cove

Secondly, an auction is going to be held to help raise money for Cove's Chicago trip.  If you want to participate in the auction or if you have items you would like to donate to the auction (or even know of businesses that would help!), here is the link for that.  http://instagram.com/meetcoveauction?modal=true  @meetcoveauction

Thirdly, here is the link to a site where you can help them raise funds to get precious Cove to Chicago; to the teams of doctors who can help figure out what is truly wrong.  http://www.gofundme.com/c5uklo  And, if you don't have money to give, I beg you to give by using your words.  Introduce Cove to your family, friends, coworkers.  Help me flood this family with power, light, hope, and LOVE!

Friday Favorites



Do you see what I see?

The constant hand-gnawing and drool clued us in.

So many pictures. So many memories to record.  So many changes.  Our little boo is already five months old/twenty-one weeks old.  Growing like a weed, we have gone from measuring Ella's feedings in "ml's" to "whole bottles full."  She sits.  She tries to escape from all bouncers, carseats, and cribs.  She is constantly sharing her thoughts with us in her gurgly Chewbaca language.  She loves her feet, the song "Let it Go" from Frozen, and watching people brush their teeth.  Oh, and she has TEETH!  Two tiny chompers in the bottom middle that totally caught us by surprise.  I can hear her future teachers already: "Mrs. Granados, I'm sorry to tell you this, but Ella... well, she bit a classmate today."  Below are some of my favorite pictures from the last week or so. 

Whenever I put Ella in her carseat, I squeal, "We're going on a trippy!" and she gets so excited, regardless of whether we're going to do laundry or see Nana.  She even gets excited to go to the doctor, and rarely cries during any of those trips.  Best errand buddy ever.

Still her favorite part of the day.  



We have hours and hours of fun together.  I love being this special girl's mom.  She is constantly making me smile... laugh... cheering me up if I'm down.  And, of course, she has come to love the camera.  Just look at what a little showoff she is!  Until it gets to the one on the bottom left, and then she's sooo over it.  

Foot-obsessed.  

Sometimes, I look at her and think, "There is no way that huge child is my baby Ella!"  Being the overly-emotional person that I am, I cry about it regularly.  Above, she's taking a nap next to me while I worked on homework.  Oh, that potbelly...! :')

This week, I finally had to start strapping Ella into her bouncer, swing, etc. (don't worry, I always kept a close eye on her when leaving her unstrapped) because she has gotten to the point of sitting up and trying to pull herself out.  She was not too amused with her restraints.  

Be Prepared

I want my blog to serve as a source of both information and encouragement to parents who find out their children have clefts.  Looking back, I remember the relief I felt when I stumbled across websites or bumped into people who had gone through what I was experiencing.  As cliché as it may sound, the very knowledge that I was not alone provided me with comfort and strength.  With this in mind, I record some of the things I wish I had been prepared for.

 

I wish I had been prepared for the NICU.  I went into my labor never imagining that Ella would have to stay in the NICU.  We knew every other part of her body was healthy -- heart, lungs, brain -- and she was full-term so it didn't occur to me that she would have to stay there.  I wish I had known this was a possibility beforehand; wish I didn't have to find out she'd be there from a random pediatrician I had never met before and never saw again.  "Your daughter will be staying in the NICU until we can make sure she doesn't have any problems feeding."  This news devastated me.  I had mentally prepared for my daughter to be in a little bassinet feet from me, not an entire floor above me (trust me, it seems like farther away than it sounds.)  Ella stayed there from Friday to Monday and it was rough, very rough.  Every second that the NICU was open to visitors, I limped upstairs to be by her side.  But still, I wasn't able to feel like she was truly "mine" until I carried her through our apartment doors.  I don't know if the NICU is a requirement for every baby with a cleft, since clefts do vary in severity, however I wish I had at least known it was a possibility. 

I wish I was prepared for peoples' lack of knowledge.  Even though clefts occur in about one in every eight-hundred births (very common, if you think about how many babies are born every day!), not that many people know about them.  Be ready for people to ask you about the cause.  I even had people insinuate that Ella's cleft was my fault or that it was somehow a result of my environment.  More often than not, those who make such statements don't mean anything bad, they simply say so out of ignorance.  As parents of babies with clefts, it's our job to educate others (calmly and gently), so that our children have a better future.  Also be prepared for people to think that your child's cleft is more debilitating than it truly is -- some aren't aware of the advances in surgical practices, therapies, feeding, etc. 

While you are pregnant, you need to know that you can tell people about the cleft in your own time.  If you want to spread the news as soon as you find out, that's fine.  If you want to wait until the delivery, that's perfectly fine too.  It is your news to share, whether sooner or later.  It took me a long time to cope with the news, so I waited longer to share.  I don't view this as "hiding" anything, nor was it because I was ashamed of my daughter.  You also have the right to pick and choose who you want to tell.  I promise you this though, you will be happily surprised by your loved ones' reactions.  I received infinite support from my family and friends.

A lot goes into repairing a cleft.  I'm all for downplaying it to extended family and acquaintances by saying stuff like "They'll just stich it right up" because, on the one hand, having a cleft is by no means the end of the world and everyone should know this.  On the other hand, the cleft can affect many parts of a child's life beyond their outer appearance -- speech, eating, their teeth, their hearing, the list goes on and on.  I don't say this to scare anyone (trust me, your doctors have the situation under control and they've prepared for the effects long before they've even crossed your mind), but you do need to be ready for these things.  Just the other day, it hit me that Ella will start teething soon and we need to start thinking about how her teeth will be affected by the gap in her gum line.  A cleft requires strength from parents and children alike.  That's why I love the Instagram hashtag #cleftstrong.   

I'll end with this: Be prepared for joy.  Be prepared to completely forget about the cleft.  When I look at Ella, I swear that I don't even see it.  It's hard to explain and maybe it doesn't make sense, but I just see my baby and she is perfect to me.  Be prepared for the most special child, whose wide smile will light up every second of your every day.  Be prepared to find a hero in the eyes of an infant, so strong, so brave.  Be prepared to look at everyone else through a different lens forevermore.  Be prepared for love.

Who replaced my newborn with the Hulk?

Watching myself put on forty pounds (of slushies, Edwin's brownies, and Bugles), I knew that my baby was going to be a nine-pounder.  I just knew it.  This idea wasn't solely my own, though; people I ran into pronounced that I was "all belly" (a term which, in my case, meant that I looked like an orange with toothpicks for arms and legs) and said that my baby was going to be big and long.

 

She was neither.  She was just under seven pounds and only nineteen inches long, although most of her weight and length seemed to be in her huge head (a term which, in my case, meant that I pushed for three hours).  Ella wasn't even what you would call a voracious eater at first, she was eating only a little over what they wanted for newborns.  But when we brought her home, all this changed... *cue ominous music*  Our delicate, ladylike little girl morphed into a slobbering, gulping creature, who would cry every hour on the hour as if I hadn't just fed her six ounces.  I think our neighbors were convinced we were starving her.  It was as if Ella finally felt free to show her true self in the comfort of her home.  Ten weeks later, my little princess has turned into a much cuter, female version of the Hulk.  Thirteen pounds, twenty-five inches long.  Already can wear some six month clothing. 



My dad recently came over to visit Ella and we got some great pictures.  On the left is Ella at four days old, on the right is Ella at ten weeks.  



 

Lastly, I'll include a picture which I have cried over every night since taking it.  Everyone says "time goes by quickly," but I never realized how true that was until I saw this picture of Ella's sleepers.  When my dad was leaving after his visit, he turned to Edwin and I with tears in his eyes and told us to value every second we had with her like this.  I remind myself of this when she's fussy or wakes me up at three in the morning, because now I realize that, in the future, there will be days when I will give anything for her to be ten weeks old again. 

 

Friday Favorites

I would like to start off by saying the following: You know you're a mom when you're happy to have someone spit up on you.  After feeding about thirty minutes ago, Ella had a pretty big spitup all over me.  I was thrilled simply because I was swimming in it, yet none got on her outfit.  It's the little things....  Anyway, here are my favorite pictures from the week. 



That outfit, though!  I can't get over it.  Granted, it came off after about an hour when I realized that the tutu style, although utterly adorable, was not conducive to changing poopy diapers.  This dress will be reserved for church, doctor's appointments, trips to see family, etc.  Trust me, I learned this lesson the hard way.  RIP, cute and ruffly chevron romper. 

Yes, this is how my child sleeps.  She is not the cuddly, hold-me-close type of sleeper.  She is the I-must-not-have-my-arms-or-legs-covered-by-even-a-centimeter-of-fabric type of sleeper.

I was getting ready to change her diaper and she brook out into the hugest stretch.  This is a habit with Ella; she's done it since day one.  Which I guess partially accounts for all the movement I felt while pregnant. 

This is I guess what you could call a non-favorite.  I think she's getting too big for the infant insert in her bouncer.  *tear*  The first step is admitting it.... at least I'm out of the denial stage.  





Dearest Ella

At my baby shower, my mom passed out a piece of paper to everyone.  It was a letter to Ella, on which the guests filled in blanks.  Much of what was written to my then-unborn daughter made me smile, cry.  I never want her to forget the heartfelt sentiments written to her that day.  This is the letter, filled with some of my favorite answers. 


Dearest Ella, I hope you...
get your mommy's emotional exuberance. 
get your daddy's gentleness. 
learn to speak fluent Spanish like your dad and be an encourager like your mom; to love the Lord and put Him first in your life; to be joyful no matter what.
love to read, sing, dance, play outside, and roll down hills.
try to be unstoppable, understanding, and forgiving.
never forget how beautiful and loved you are.  Most importantly, never forget to hug your parents.
are not afraid of moving across the United States for love [prioritize love]. 
one day become an advocate for others. 
Love,
your friends and family

Two Months Taught Me:

1. If you need to leave the house by 12:00, be ready to leave at 11:00.  Right as we're headed out the door, Ella has her poop explosions.  Every time, without fail.   

2. Baby boys are not the only ones whose pee you have to look out for while changing diapers. 

3. Ella will sleep through our vacuum (which doubles as a freight train) during the day, but at night when I desperately need her to stay asleep, the sound of me pulling my pjs on is enough to wake her up. 

4. This year, spitup and slobber stains are totally "in" for the summer season. 

5. Things must be done in order of absolute necessity.  I haven't worn makeup in weeks.

6. Always have a change of clothes in the diaper bag.

7. Forget being right handed -- I have now mastered the art of doing everything one handed, right or left.

8. I have never been so terrified of driving or going up and down stairs in my entire life.

9. A very little person can generate more dirty laundry than two adults combined. 

10. When they tell you, "Get your sleep while you're pregnant," they mean it. 

The day the learning began.

Mommy Monthlies (May)

 

 

Well, I'm a mom now, and I've decided to try to blog every day for the first year of my daughter's life.  Ella's birthday is April 4th so I'm roughly seven weeks behind, but better late than never.  (My mommy mantra, seeing as how I cannot make it anywhere on time for the life of me these days.)  Some days, I'll double-up to reach the 365 mark.  I thought I'd kick it off with a blog about my favorite "mom'ish things" for the month of May.

 

White Cloud Diapers: My mom bought these when she was decorating for my baby shower way back in February.  According to her, they were the cheapest diapers at Wal-Mart.  Now fellow moms, don't scoff at them because they're inexpensive or because you've never teared up at an adorable White Cloud Diapers commercial on tv (to my knowledge, such commercials don't exist, although I'd be more than happy to have Ella star in one).  Mom gave me the diapers after the shower was over and, let me tell you, they are heaven-sent.  Pampers, Huggies, Luvs (Ugh, Luvs, many cute outfits have been victims of your leakiness!) have all fallen at the mercy of my daughter's explosive poops and flash flood pees.  White Cloud diapers alone have emerged victorious. 

Pampers Sensitive Skin Wipes: Open-minded when it comes to diapers, I guess I'm a wipes snob.  These wipes are the shiz.  Not saying all Pampers, but these specifically.  I've tried just about every kind, and they all feel dry and scratchy to the touch; I'd cringe whenever I used them on Ella's helpless little booty.  These, however, are as smooth as butter and super moist.  Whatever money I save by buying White Cloud Diapers I will use to splurge on these.  They are worth it. 

 

My Little Box of Bears: Edwin (aka "daddy" or "hubby") came home one night and surprised us with this collection of six picture books, all starring Ella's favorite animal.  The great thing is that all the books go into the adorable carrying case, which makes my living room look a little less cluttered.  Each book is colorfully illustrated (great for newborns' learning eyes) and contains lots of fun "noise-words" -- buzz, growl, etc -- that Ella loves to hear.  On the Half Price Books website, the prices hit around $12, but Edwin was able to find it for only $7 approximately in the store.  Either way, a great value for six books. 

Baby Trend Jogging Stroller: Seven weeks postpartum, I'm not going to front and say that I jog every day.  Let's be real.  But I have been going on walks almost daily (Ella sleeps, I get out of the house, it's a win-win type of thing).  I love the lightness of this jogging stroller (if it weren't for the extra lbs I packed on during pregnancy, pushing Ella up hills would be a piece of cake.  Mmm... cake.  Curse you, lingering preggo cravings.)  Anyway.  It's easy to maneuver, has great storage space, and has an mp3 hookup with speakers.  Favorite part: the carseat portion locks right into the base, making going from car to stroller easy.   

Ella Milestone: Lastly, I adore it when Ella slobbers all over her fingers.  Last week, she "discovered" them and has not been able to stop devouring them since.  Cracks me up.  One would think they were coated in breastmilk or Half Baked Ben and Jerry's icecream... Lord, I need to stop writing before these cravings overtake me.  But yeah, the finger-sucking melts my heart like the center of... gooey brownies.