So I'll follow the sun.....

We have been betrayed folks.   Betrayed by the thing we were told was going to make everything infinitely easier.  Streamline our day to day.  Put the world at our fingertips.

Thank you technology for giving us the smart phone.  You killed meaningful relationships for good I fear. 

Let me explain. This is a lonely world.  We are incredibly isolated and the smart phone, social media and what not is keeping us isolated.  The premise of keeping us more in touch with people is killing us. Its killing friendships, love lives, and so much more.

For example, if people wanted to find out how my babies were doing, they had to call and ask.  E-mail even.  Now they log onto facebook, like a few photos and then feel like they are in touch with me.  I claim that facebook keeps me in touch and is the easiest way to keep up with people, but really its hindering real relationships.  The kind where people care enough to give you a call or stop by and actually talk to me.  See my kids, meet them, and gush over the real them, not the pictures and videos I post.  

And this isn't just a rant about facebook.  Its a rant about smart phones in general.  A great friend of mine, whom until recently I felt very close to, was always calling me and talking for hours.  About life. Instead now, she can be here in person sitting right beside me.  AND NOT SAY A WORD.  Why you might ask?  Oh its easy.  She wants to pass this level on candy crush.   No joke.  Thats what is up.  

Technology is killing us people.  Its killing the connections people used to make.  The nervousness of a first phone call to set up a date.  The thrill of being around those you love is replaced with the thrill of the newest App sensation.  I am just as bad as the next person.  I have thought for years that facebook kept me in touch with my close friends that lived states away.  I guess if they were friends though they would call or text me. 

I don't want the things that were a big deal for me to be cheapened for my kids.  Real friendships are not based out of playing games and posting status updates.   I don't want to be the mom so worried about posting a picture that I am missing a moment.  

SO what to do?  

Get rid of it.  

Not the phone, but technologies hold on me.  No more facebook.  No more apps that keep me from important things.  

If you want to know me, then ask for my phone number, come over for some coffee or lets do lunch.

But lets stop the idea that this is communicating.  Its robbing us of our most loved and dear ones and replacing it with stupid foolish things that will not last.

Life goes on....

Family pictures finally!  Thank you so much Sarah!

I suppose its time for an update now that we have hit the magical 9 month mark.

Prudence is the most joyful, calm, and easy going baby I have ever had the pleasure of knowing.  She is always giving gummy smiles and giggling at something new.  It warms my heart to know that after all she has been through and all she has endured that she is still a happy sweet little girl.  (If it had been me, I probably would be whiney and annoying)

"Mom is this where the lipstick goes"

She has slowed down a lot on gaining weight but she is making slow steady progress.  She is just under the 14 pound mark.  We have been giving her pureed foods for a while now and have been given the green light to step it up a bit more and treat her nutritionally like a 9 month old instead of going by her adjusted 6 month age.  Luckily, she is a willing participant in most foods and loves meal time.  

Cranial orthotic evaluation.....hehe

Health wise, we lost the heart monitor a little over a month ago (the same week as my appendectomy) in the week of perpetual ER visits (I think we made a total of 4 within a seven day period starting with one on Mothers day and ending the next Saturday)  Since then life has gotten a lot less tangled and a lot freer.  Taking her out places is easier and even navigating our household has become much more effortless.  We even did our first church visit. (Imagine her heart alarm going off in the middle of a service!)   Her ENT doctor is weaning her medicines off and she didn't even need a helmet for her plagiocephaly (flat spots on her head)  

Look Mom!  No hands!

Developmentally is where we are hitting the hard topics now.  She is definitely not a 9 month old developmentally wise and she isn't even really up to par with a 6 month old.  At a time we would normally be celebrating our baby crawling, standing, and maybe even taking a few assisted steps, we are happy if she can sit up assisted for more than a minute.  We are waiting for physical therapy and occupational therapy to come evaluate and then we will go from there.  The hardest part is the hints of the possibility of her having cerebral palsy.  I will preface this to say that it would not be the worst diagnosis ever for a 25 weeker who had crappy lungs in the beginning.  Actually it wouldn't be all that surprising because of her hospital course because there are studies that connect poor oxygenation with the development of cerebral palsy.  The degrees of how that diagnosis could affect her have a huge range and it makes the future all together uncertain.

The big theme in our life lately has been forgiveness.  Its a hard pill to swallow.  For the past 10 months I have pretty much blamed myself for all that has transpired.  I failed as a mother in the most basic fundamental way.  My body rejected my healthy child and changed everything as we know it.  I am not sure how to begin to forgive myself for putting my family through this ordeal.  The ripples of the events of September 20, 2013 feel like ocean waves still.  My child would be healthy and without problems if she had been born on her due date.  Our lives wouldn't be riddled with doctors appointments, medical bills, and a fear of an uncertain future for our daughter.  The what-ifs will haunt me probably to my dying day.

PopAsh doesn't look to sure about this!

Outside of myself, there have been several people that have hurt my family.  So many abandoned us in our time of need, and so few are willing to see how hard that has been from us.  Family and friends are conveniently absent in times of need and they are unapologetic about it.  I wish people cared more about the people in their lives.  We are so busy caught up in our own lives that we forget other people need us.  I hope no one perceives me as being to busy to be there for them.  If you do please tell me and I promise I will change.  All we have in this world is each other and our time together.

Minnie Mouse rain boots are the perfect accessory 

 
I am not perfect.  I do not always handle our situation well.  There are some days I sit at home crying and heart broken over everything.  Yes she is healthy.  But what about tomorrow?  Yes she is happy.  But what about tomorrow?  Will she walk?  Will she be able to sit up?  If she catches your cold will the virus make her sick enough to go back on a ventilator again?  There are so many days that I plead with God to make me understand why we are here.  Why us?  You hear the age old "God doesn't give you more than you can handle."  Can I truly handle this? The endless questions and unanswered moments could make any sane person mad.  So at the end of the day, all of you, those who have supported us and loved us and prayed for us, are really all I got.  The encouragement, the hope and the love are enough to carry me through those tough times.  And those who haven't been there, well, I need you too and I hope you change your mind.  

I'm gonna wreck it

Hi guys, my name is Brenna and I am a bad guy.

Or at least I was.

Ever seen Wreck it Ralph?  I do...a lot....(thanks Lucy)

Well I feel a lot like Ralph.  I've always been the bad guy.  I have in the past and still struggle today with anger and temper issues.  I am an extremely hot-headed person.  And you know, a lot like Ralph, I used that anger in the past to wreck things.  Mostly relationships.

In fact, most people that read this blog have been in some way directly hurt or insulted by me.  And if you haven't, then you haven't known me long enough.  Just that simple.  I try and battle daily with the sin of anger and I lose more than I wish.  I am direct, say whats on my mind, and have a very black and white sense of things.  You do something bad, and I'm gonna wreck it.

I have said more sorry's than I can ever count and made more people sorry for accepting my sorry than I care to admit in the past.

Then I met Juan.  And I found a reason to try to change.  Its amazing what marrying a good man will do for a person.  Its like a spellcheck for the soul.  I met a lot of good people.  More than that, I found my way to God.  And I still hurt people.  But I am working on it.

I have tried to make amends for what I have done in the past.  Some relationships are there, a mere shadow of what they were.  Some were lost forever.  And that is my fault and I have to suffer daily with the loss of those people who are better off without me in their lives.  They are ghosts who will haunt me until my dying day.

So here is my score card.  I have three really great close friends that have been there for me even though I am who I am.  I have my fix it felix husband.  I have two beautiful daughters who hopefully have their daddy's disposition.  I have my parents who have always supported me, guided me, and loved me for all my flaws.  I have a handful of other friends who probably keep some distance from me because thats where they feel safe with me.  And thats it. Its probably more than I deserve.

I am starting to realize however, that maybe I am not as bad as I always thought I was.  My family has overcame a lot.  And in the face of it, I have found the person that I want to and work on being.  I want to be the person that focuses not on the past but on the future.  Whatever that future may bring.  I want to focus on God and his word and principles and spread that light and love to all I speak to.  I want to seek and always seek to better myself.  And for the most part, I believe that I have been doing that.  I am flawed.  I am human.  I will slip.  But even for a bad guy, I think I deserve love and respect.

So here it is.  My final apology to those who won't let go of the past and allow me to move forward to the person I have been trying very hard to become.

I am sorry.  I am sorry I hurt you in the past.  I am truly to the depths of my soul sorry for hurting you the way I did.  I am sure that my mistakes will haunt me for far longer than the words I said will stay in your memory.  I really and truly hope your life is better without me in it and that you have a beautiful happy future ahead of you.  If you have things that you wish to say to me,  please go ahead and lay all the hurtful mean things down in front of me.  I can take it and more than that I deserve it for what I have done.  I welcome what ever you have to say to me and will not put up any fight or defense.

But please, after that, let it go.  If you want to know the person I have become, then I am here.  If you still talk to me, please don't read into me asking a question or saying something as an attack because most of the time now, it isn't.  I am truly trying and have been trying for a very long time now to make amends for what I have done in the past.  I am not asking you to stay a part of my life, but please stop berating me for mistakes of my past.  To my family, you can be there or not.  But stop treating me like a criminal.  I have grown and overcome more than some of you care to find out.  If you would like, we can talk honestly and openly about it, but first you have to be willing to talk to me to sort it out.

I love everyone in my life.  I love and appreciate those who have supported and loved me through this time in my life.  And I love love love those who have been willing to stick it out and help me become the person I am growing into.  You guys are the best.

Ob la da

It has been almost 3 months since I posted anything...

This is just a normal day for these two stinkers

I am really really bad....
or busy....

We will go with busy.
The truth is that I have started, restarted, rethought, reworked and then deleted a new post several times.

Its been a never ending onslaught of doctors visits some weeks, peppered with two hospital visits, and a couple of late nights up as worried parents watching our sweet one.

Biggest difference in Prudence is how overwhelmingly big she is.  13lbs 2 oz.  I know, I know she is 7 months old and when we are out with her it is like a sharp jab with a big knife to hear "Oh look at the little tiny baby"  but I know that Prudence is like 10 times bigger than when she was born and has some fat rolls so tight we fight to wash her properly in the bath.

Umbilical Hernia- Gone!

Raising Prudence is so different than Lucy.  For instance, a few weeks ago we took our first official outing as a family other than a doctors visit. Even since then, we are still pretty cautious and I chicken out a lot ( for example, church on Easter was cancelled for us at 5am Easter morning when Prudence coughed just a bit and got me worried.)  And the doctors visits...since we are on that.

Officially, we are entering into a phase where Prudence is making huge progress and showing her limitations all at once.  Its interesting because, one of our visits, The Child Development Agency views Prudence as a 7 month old baby.  Those visits are really upbeat and fun because they happen here at home and so far we have been focusing on the great progress she has made.  Then at Amos Cottage she is a 3 month old and even then she is concerning them in a couple of areas.  Nothing huge yet, but we are getting Physical therapy involved for
stiffness in her legs and plastic surgery to evaluate her head shape.

Its hard guys.  I know and have known for over 7 months now that I cannot compare Prudence to other babies.  Its a miracle that she overcame all she did and is as healthy as she is now.  But that doesn't change the shattered feeling I get every time someone gushes about their 2 month old turning over or their 7 month old crawling up a storm.  I try to be happy for others kids progress, I try to tell myself that Prudence is doing great.
God knows I try to not let it get to me.  But every now and then I have to cry it out and fret over things.  I guess its a mom thing.  I don't have many people to talk to and Juan just doesn't get it.  No mother ever wants her kids to have to struggle through anything, and I worry most that Prudence will always have an uphill battle to be a normal kid.

Prudence meeting her Great Grandma!  

We are working on eating a little.  We are working on getting strong enough to roll over.  She has trouble sitting up even in her little chair because of her stiffness and I think she tires out from trying really quickly.


But she is so happy.  She is the sweetest, calmest baby ever.  My dad likes to say she is even polite when she cries.  At the end of the longest most worrisome day, I am most glad and thankful that she is happy.



As for the rest of the Perez clan, well, Lucy is as active as ever and would spend every waking second playing outside if she could.  She is happiest walking around, talking to the birds, enjoying nature, and getting as grubby as possibly.  She is like the grubby little Snow White.  I love her.

First time to the Park!

Big sister had a blast too!

Juan and I joined a small group with church which is great when we actually get to attend.  It is sometimes infrequent just because thats life.  But it has been a huge help in getting Juan and I to look outside of our parenting duties and more into being a couple, Christians, individuals....basically all the other stuff before our girls became our only focus.

So, there is the basic summary of the past few months.  Hopefully I can get better about this whole posting thing.....

First family outing!  Eating at Chic-fila (aka COWS which
is what Lucy calls it)

Ob-la-di

Today marks one month at home.

Looking back at this month with our little lady, the NICU seems very far away.  There was a time I was sure we would never get home.  That our sweet girl was  going to grow up in the sterile walls of the hospital.  I often half joked with the nurses that I would soon be committed to a psych ward and given a baby doll named Prudence.

I say half joked because I was often afraid that would come true.

 It has been a crazy wild month of chaos and yet it is so much more peaceful than before.

We have enjoyed learning our little girls tenacious personality.  She eats about 3 oz at a time now and drains the bottle of every drop.  She has almost outgrown her newborn clothing completely, meaning I have to find time to start packing up her first round of clothing and  prepare the second round.  She has rolls blossoming every week it seems and those are sweet indicators of the weight she is gaining now that we no longer get the luxury of tracking it daily.

This is poop face....it happens.

Prudence smiles a lot. And not just little grins but huge gummy faces that can warm up a room.  She loves her toys, but mostly this fish rattle that used to be Lucy's.  Prudence will only do her boom booms (bowel movements) about 5 minutes after putting her into a clean diaper.  She enjoys bath time, especially getting her hair washed and rinsed.

Lucy is adjusting.  She is the sweetest big sister always kissing and loving on baby sister.  Every now and then we have to remind her to be gentle, but mostly she
is very sweet.

We had the pleasure the other day of offering our advice to a new NICU mom the other day.... it was surreal saying these things.  It's a rollercoaster.  Cozy in for the next 12 weeks.    Expect anything and nothing all at once.  Be a parent in any way you can.

As I am saying this I realized that until you have lived as a NICU parent, these words are empty.  You never understand that rollercoaster until you ride it.  The significance  of a due date carries a whole new  meaning.  And being a parent becomes more precious than anything. You live for the next diaper change or temp check.

Again it's surreal now.
She is so happy and healthy.  And chunky.  Cute chunky though, not oh my God stop feeding your kid mayonnaise by the spoonful chunky.

And so life goes on.  My favorite times are afternoons when Lucy snuggles up beside me when I'm holding Prudence and both girls dream next to me, which is all I could ever ask for.

Slowly we add things back in, we pick back up, and in the evening she's a singer with the band....

Oh and HAPPY 50 YEARS Beatlemania!  So happy you got together.  No idea what I would have named my children without your aid and brilliance!

I'd like to be....under the sea

Home......

with both of my girls!

So it's been a few days since I posted.  I have actually had to amend this post a few times before finally getting to post it at 4am.  Mostly because, well, I'm now officially the mother of two kids that live under the same roof.  Busy and chaotic are a few words to describe the flow around my house lately.  There are times we sleep only a couple of hours, and there are definitely days where I feel like the smell of spit up, poo, and Lucy's lunch are my perfume.

But it's good.  Really good.

Prudence had her 4 month check up last week and is doing great.  She weighed 7lbs 7.6 oz and is trucking right along.  Our pediatrician said she had no concerns for Prudence and told us to keep on doing what we've been doing.

Can I get a woohoo!!!!

Prudence is really one of the best babies.  She sleeps so well during the night.  Very peaceful...only a couple of times being a bit too peaceful and setting off her apnea alarm.

Which could wake the dead three miles away during a fourth of July fireworks show......

She isn't fussy in the least and is very content as long as she is fed, dry, and not refluxing.  She gets more and more alert every day.  It is weird because she seems less like a newborn even though she is in a newborn body in a lot of
ways.  Our doc said that even though babies like Prudence are given 2 years to catch up before they are considered behind but that she felt that Prudence is going to catch up much sooner than that.  I have learned however not to get my hopes up to much.

Lucy loves Prudence so much and is very involved.  She helps out with diapering and shows baby sister toys and is constantly giving her kisses.  She is also pretty protective of Prudence.  She has even told people other  than mommy to "leave baby sister alone" and will go pat Prudences head and tell her it's ok when she cries.  It's really really sweet.

The flip side to that is that Lucy has become super clingy.  Just to me.  Which is fine, although a bit inconvenient.  We are all adjusting.  Growing.  This family of four business is the real deal guys.

Luckily we have had a ton of help from my parents. Mom and PopAsh haven't let us down yet helping watch Lucy for doctors appointments, getting her out of the house for a bit, and helping us out around our house as we figure out how to be parents to 2 babes.  However this past week we have been on our own because of my mom being possibly exposed to the flu.  Its been challenging but also a very sweet time of learning and growing with my girls.  And J
uan is definitely the best husband ever.  He watches over his girls like a.daddy hawk.  That occasionally does weird things..... like teach Lucy the word burp...(add that to fart, poop, etc)... sigh

We have our ENT follow up in a couple of days, child development evaluation the next week and special infant care clinic the next week.  Its not busy on the doctor front and we are lucky for that.

So business as usual.

Welcome to graduated, ex-preemie world.

Dear Prudence, Won't you come out to play......

  Day 102-111

Today is the day.

It is the day we prayed for, dared to hope for, and on some days thought would never come.

Prudence weighs in at over 6 lb 8 oz.  We started at a humble 1 lb 7 oz.

She is almost 20 inches long.  That is 8 inches of growth.

She is breathing c
ompletely on her own without the assistance of any oxygen.  This is after 3 breathing tubes, several weeks on C-Pap, and months of work weaning down the nasal cannula a tiny tiny tiny bit at a time.

Yesterday, her physical therapist signed off on her saying that she has made wonderful progress and only needs to wear her splints for a couple hours a day now.

She passed her hearing screen, her carseat test, and received her RSV shot.  Tuesday, her eye doctor told us the wonderful news that her retinopathy has resolved and that she needs no eye follow up until preschool.

Prudence had two PICC lines, countless and I mean COUNTLESS IV's, three full rounds of antibiotics, 4 blood transfusions, 2 echocardiograms, 3 head ultrasounds, vaccinations, more x-ray's than I can count (we stopped somewhere in the 30's), sometimes lab work drawn every couple hours, and all her normal little girl vaccines on top of that.  Anyone wanna cry about their child getting shots now?

Our sweet almost four month old has a code sheet in her chart.

Her pulmonary hypertension is gone now.  Prudence will be battling chronic lung disease and a scarred airway.  She has a small umbilical hernia which our pediatrician will follow up with.  She has appointments at the infant care clinic for preemies, ENT, and the pediatrician.  She has only a prescription for prevacid.  That is it.


Today, my daughter graduates from the NICU.


Words/pictures/diagrams cannot possibly express the feelings that are stirring in me early this morning.  A piece of my heart has resided inside a hospital for 111 days.  More tears than I can count have been cried and I believe today will be no different.  I missed out on 3 and 1/2 months of pregnancy and we spent just that long making up for it in the NICU.

However, God has prevailed in all of this.  In my darkest hour, at my lowest point, God was with me, helping me to stand/walk/breathe/carry on.  There were times I gave up hope, cried, and felt like the world was ending.  But God has answered every prayer.  Every one.

We met angels.  Our nurse in the NICU has been Ann.  She has had Prudence almost 4 times a week for
16 weeks.  I hope she knows how much she has meant to our family.  How much she nursed Juan and I back to health as well as Prudence.  She celebrated with us, always offered a smile and if we were going to get bad news, well then it better be Ann giving it to us.

All the NICU nurses, practitioners, respiratory therapists, pharmacists, secretaries, house keeping, milk maids, doctors and volunteers are Angels.  God put each one in our lives to help us.

Outside of the hospital, we learned about true love, true friendship and how faithfulness prevails.  Despite family drama, failing friendships, and the hiccups of real life, we survived and when we made the effort to stop and listen to God, well, we flourished.

Thank you NICU staff.  Thank you Sarah and Isaac Norman for being so close to this with us even though you live 5 hours away and have a newborn sweetheart yourselves.  Thank you Thomas and Renae Jakubisin for being wonderful friends and the one set of people we knew that have been NICU survivors.  Thank you to all the people who have prayed with us.  I can't name you all because at this point, I do not know how many are out there.  I just know that God listened and answered to every prayer that was sent up and you helped us make it through this.

The biggest thank you's go to my family.  Thank you to my sisters who swooped in and cared for Lucy and made her feel special when all this started.  You guys made it so I knew she wasn't only getting cared for, but felt like Lucy was away at a spa retreat getting pampered.

Thank you to my parents.  Your countless hours spent worrying with us, watching Lucy, cleaning our house, helping us cook, making holidays special for Lucy and for us, and loving on my whole family definitely did not go unnoticed.  Without a doubt, you guys are heaven sent.  We love you.

Thank you to Lucy.  I know this has been hard on you baby girl.  I know you have been scared and worried without even knowing what to be scared and worried about.  You are a light on a cloudy day, our own ray of sunshine sent to us.  We love you.

Thank you God.   Praise God.  For all the works you have done.  I asked you for the world and in return you asked for faithfulness and obedience.  It wasn't until I surrendered all that I had to you that you gave me the world.  You are the light, the way, and I will sing your praises until my dying day.  It hasn't been an easy road, but you were merciful and held our family up.  I have seen a miracle performed and she is coming home today.


Home.

That sounds.  So. Stinking.  GOOD!


Goodbye micropreemie world.  Hello life.