Last Happy Birthday in the NICU!! 1.13.12

By now everyone kind of knows that every month my Gorda deserves a celebration!! So every 13th when she adds another month of precious life to our little world, we sing her Happy Birthday! January was a special month, it was the last bday in the hospital on 1.13.12!!!Whoo HOO Finally, her first bday in the new year & actually would've been the month she was supposed to be born. Sophia was due 1.9.12!! It was the first time they attempted to try to remove the Nasal Cannula (O2), & first time feeding & sucking paci w/out it....Oh & The first time Sophia was free of everything so she could walk around, & of course her lovely primary nurse Michelle took her for a walk & showed her off!! This day my daughter looked so much more precious to me than ever before, because she finally didn't have ANYTHING attached to her even if it was for a short while!! Thank you Michelle for this moment you allowed after 3mths it felt good to be able to walk around & show off my pride & joy!! Even walking around the NICU was a joy, of course I can't wait to walk around in the outside world, but for now this moment was great!! Enjoy the pics!!

 

 Celebrating 3 Months Old 



First time wearing a skirt!!! Naturally beautiful!! I couldn't stop staring at her w/nothing on her face it was a magical moment for me to see my baby this way!! 

 

Primary Nurse Michelle, helping Sophia escape the NICU!! : )

& FINALLY the Cannula is OFF, now Mami has to keep a close eye on the monitors & clock according to instructions...of course you can see the nurses stay real close because anything can happen! This happened during the day before daddy arrived from work for the bday cake!

 Anything can happen, my Princess looks at me & says oh mama I'm done w/this cannula don't worry I'm not having an episode I'm just going to enjoy this moment & smile!!

Ahhhh I like this I can get used to it!! (Sophia's words)

 

 She's been a fighter since day one, a successful feed w/out O2!! So proud of you baby, you turned a little white a couple times but you still did it mi vida!!

Daddy was texting from work & proud of you too!! Good job champ!!

Mommy & Daughter just cherishing this freedom!!!

The time went real slow when we were monitoring how long she'd last when she was off the O2, after the first hour it finally went by faster!

& the famous monitors to watch, her SATs were good

(That's the blue, you want that number to be in the 90s)

First Visit to Pediatrician & First bath at Home...1.20.12

Two days after arriving at home was Gorda's first pediatrician appointment....she did okay wasn't too happy getting weighed as you can see but she's so tiny & cute....at her first appt. out of hospital she weighed 5pds 11oz. & was 17 3/4 inches long. She came home drinking just 45ml's seems so little but it's a lot for the princess who was drinking drops when she was born.  Later on at night mommy & daddy bathed Sophia for the first time at home what a huge difference from bathing her in the hospital in her little isolette & hospital crib.  It was such a great joy to finally bath her in the comfort of home....I was a little worried the sound of the water would frighten her a bit or the change in environment for bathtime.  I was right she was a bit scared at first she didn't like at all being laid down on the bather so we opted for the hospital bins where she felt more at "home".  Enjoy the pics.

 A BIG LOAD TO CARRY WHEN GOING OUT....

 THE CALM BEEFORE THE STORM : )

 THE STORM : ( POBRESITA & HER UMBILICAL HERNIA BURST OUT WHEN SHE CRIES) 

 FIRST COUPLE SECONDS IN HER BATHER

  HER PREFERRED PLACE TO BATH NOT TO MENTION LOVES EATING MOMMY

 HER FIRST TIME WRAPPED IN A TOWEL......AHH SO CUTE!!!!!!!

THE NIGHTLY ROUTINE HER NEBULIZER TREATMENT ALSO DONE MORNINGS

Where she belongs!!!

The day we were so eagerly longing for.....finally coming home!! We could finally be watching her in her own bassinet...looking down at her in awe of how far she's come to get home to mommy & daddy! 1.18.12 was a day mixed with SOOOO many emotions.  Sophia was on her way home with us, we finally were leaving the hospital with our baby to take her home where she belongs!!! All the gratitude we feel towards the NICU team is greater than any of our words can express & we will truly miss them, but oohhh how good it feels to have our baby home!! Welcome home princess on the 98th day I finally get to have you home. Mommy was full of joy & at the same time fear because now the little princess special care is in my hands.  There was equipment everywhere as you can see in the pictures below....as you know she came home on oxygen & monitor & a bunch of meds so it was kind of like taking over the nurses role....I guess the scariest part was thinking of all the stories I heard in the NICU of once the baby was home they could still have episodes especially those O2 dependant babies.....but of course at the end of each day all I could do is hope for the best & be prepared for the worst!! So on the fridge went the CPR instructions...planned route to the hospital (luckily 5mins. away) & of course all the planning would go out the door if something were to happen because I knew I'd panic!! : / Anyhow I was extremely overwhelmed the first day bringing Gorda home perhaps because of that episode she had as soon as we drove off from the hospital & than thinking where do I start...but as all things you prepare & adapt!! I made a schedule with all her medications & treatments to be posted in plain sight so I wouldn't forget, did as recommended & kept her on the same routine as the hospital, made a cabinet just for her with all her meds & pre-prepped bottles meaning cereal & formula already scooped so just add water at feed time, set up shop eg. all equipment & tools needed, & off we are to our new wonders just this time finally at HOME........AS A FAMILY!!!

 OUR PRINCESS DRIVING HOME!!! AFTER SHE CALMED DOWN : 0 )

  APNEA MONITOR & O2 TRAVEL TANK....EXTRA WHEEL ONE FOR THE HOME!!! & YES SINCE SHE HAD TO BE ON O2 AT ALL TIMES IF YOU GO OUT OF HOUSE YOU HAVE TO TAKE BOTH OF THESE TWO PIECES OF EQUIPMENT (LOWER END OF PIC) & IF YOU WALK AROUND HOUSE WITH HER YOU TAKE THE ONE U SEE WITH WHEELS (TOP END OF PIC). SHE BASICALLY HAS TO BE CONNECTED TO O2 AT AL TIMES.

 THE BLUE MACHINE U SEE THERE IS THE CONTINOUS PRODUCING O2 THAT RUNS ON ELECTRICITY (OTHERS ARE TANKS) THIS ONE IS TO BE USED BY HER PLACE OF SLEEP AT NIGHT. EXTREMELY LOUD SOUNDS LIKE A GENERATOR & PRODUCES ALOT OF HEAT....ROOM FELT LIKE A SAUNA.

 THE BUTTERFLY FLEW HOME!!

 HER OUTIFT TO COME HOME HAS A LITTLE BUTTERFLY ON IT WINNIE THE POOH IS RUNNING AFTER IT..OF COURSE I PICKED IT BECAUSE OF THE BUTTERFLY & IT SAYS  "COME FLY WITH ME"  

 HEAVEN ON EARTH...OUR FIRST NIGHT  HOME.......

MY LITTLE 5 POUND 8 OUNCE PRECIOUS LITTLE MIRACLE!!

Catching UP!!!

Hi everyone...okay so I want to apologize for those that are active followers of my little Sophia's blog!! I know I have totally let it go.....between the excitement mixed with the overwhelming first month of bringing Gorda home I just couldn't make the time for the blog...but I'm here to say I PROMISE...to catch everyone up from the day we brought our Gorda home....so stay tuned for LOTS of pictures & lot's of NEWS!!! Again thank you for understanding & for your love in following Sophia Our Butterfly!!

Getting off Kumba!! 98 Days Later.....

So the plan was first mentioned to me by Dr. Shaw she said we should be discharged by Wednesday 1.18.12, if all went as planned, (Now this would be the second time "discharge" was planned the first discussion was actually towards New Year's Eve when Dr. Fajardo told me if all went well she should be out by 1.6.12. of course this was depending on results 1.1.12 if she would need the ROP surgery for her little eyes, you know how that went so the first discharge plan was sadly out the door as of 1.1 wasn't a happy way to start the new year I was super convinced she'd be going home for sure)....anyhow going on Gorda would have her second follow up after eye surgery on Tuesday 1.17.11, mom & dad would room in with her that same night & Wednesday the day would

FINALLYYYYYY COME!!

I can't explain the joy to know we were putting the NICU at South Miami Hospital behind felt like after........98 Days and an estimated 2,352 hours for Gorda, 1,200 hours for mommy and 4 sleepovers on the chair, 4,900 Miles of Driving a whole lot of gas & tolls.
72,520 steps from parking to the NICU doors (You have no idea how many thoughts go through your head with each step you take day in & day out going to & from the NICU)
3 witnessed "Episodes" for mommy aka seeing my baby lifeless, 1 of which started in my arms
1 Surgery for "ROP" and 10 eye exams (Clips hold the babies eyes open it's a horrible thing to witness so much several nurses didn't even like being there for it)
200 Brady Cardia's
1,000 Desats
10 Blood Transfusions
16 Days on Ventilator
10 Days on Oscillator
7 Days on Cpap
Nasal Septum Breakdown
Reflux Diagnosis
Chronic Lung Disease Diagnosis
Partially Failed Hearing Test
20 "Stopped Feeds"
200 Needles/Pinches
35 Chest Xrays
10 Abdomen Xrays
4 Brain Sonograms
1 Heart Sonogram
24 Hours of "Drug Withdrawels"

Discharged with orders to:
Follow up with Specialist Ophthalmologist
Follow ups with Specialist Pulmonologist
Follow up with Specialist Occupational/Physical Therapy
Follow up with Specialist Audiologist
Follow up with Pediatrician
Discharged with continuing medications:
Lasix every 48 hours
Poly-vi-sol with Iron Twice a Day
Zantac Every 8 hours
Albuterol Every 12 hours
Flovent Puff Every 12 hours
Discharged with:
Oxygen 1/8 requirement 24-7
Apnea monitor 24-7

My baby's been through the ringer and maybe seeing an idea of it jotted down other's could understand the hole it leaves in a mother's heart!!! It wasn't always so easy to watch her go through it all, or to stay positive, it wasn't so easy to walk around with a smile, it wasn't so easy to celebrate holidays, it wasn't so easy to breath.....when you go through this with your first born or any child of yours you'll never be the same again...your heart is heavy for what your innocent baby had to suffer.  You go through self blame & hours of wondering why me, why her, why us.  It's one of those trials in life that you just ask everyday how will I get through, it breaks you down hour by hour and is extremely draining.  It's a test of faith that you only find that day you put her in the car seat to go home, that's the moment you look back at it all & say how did I get through this. 
Then your rushed with this sense of completion, I finally get to take my angel home where she belongs.  No more longing to wake up to her smile, no more wishing she was laying with mommy & daddy in bed, no more saying goodnight & having to leave her there in the hospital, no more longing to hold her close, no more heart racing when the phone rings, or wondering when it was going to ring at 5am again, no more wondering if she was okay, no more wondering "Which nurse would be caring for her on the next shift", no more wondering if she was in her private room alone or is a nurse keeping her company, no more wondering does she wish mommy & daddy were next to her right now, no more wondering if she'd be home by the next holiday, no more wonders of the NICU World...now we move on to new Wonders!!!

I am a NICU MOM, I AM NICUSTRONG!!!!

 HER LAST NIGHT SLEEPING IN THE NICU

 OUR FIRST NIGHT SLEEPING TOGETHER AS A FAMILY "ROOMING IN"

 GETTING READY TO FINALLY TAKE OUR ANGEL HOME

 DADDY WAS ASKING HER IF SHE WAS READY TO GO HOME, SHE SMILED!!!

DR. PIERRE & DR. MORALES (LIKE ALL DOCS) WERE ALWAYS AMAZING WITH HER, WE BECAME FAMILY



 SO MANY TIMES I SAW MOMS LEAVING WITH THEIR BABIES & LONGED FOR THE DAY IT'D BE US.  I ALWAYS IMAGINED LEAVING WITH MY BABY IN MY ARMS ME SITTING IN THE WHEELCHAIR, WITH THE FLOWERS & BALLOONS.  THIS LEAVE WAS A BIT DIFFERENT BUT STILL IT WAS A MOMENT OF PURE BLISS,

HEADING DOWNSTAIRS TO GO HOME!!

 GORDA HAD A BIT OF A PANIC ATTACK LEAVING HOSPITAL, BUT WE MADE IT THROUGH & GOT HOME SAFE

THE PRINCESS IS HOME!!!

Beautiful Princess Sophia

When they asked me if we wanted to take pictures I was so happy, now it really was closer to going home!!! So we took the pictures but unfortunately, Mike & I were not ready to be in them I thought it was just the baby, so excuse our messy look! lol..ether way we will take some great pro pics soon but for now you can enjoy these shots from the hospital photographer....
I wish everyone could've seen the slideshow video where they put the sappy music & quotes...it was so emotional, I cried!! Not because she's my daughter but my princess really is beautiful!!! She's going to be a heart robber!!!

http://www.our365.com/newbornportraits/

The Sign

Well there wasn't a sign, but the moment they said you can bring in the car seat, it felt just like I thought it would & more!! What a rush of happiness mixed with oh my goodness is this really happening!! A part of me didn't believe it......than when I was asked the second time I was so elated to think finally my baby is closer to coming home!! So we brought the car seat and sat Gorda in it, I thought she would fill it in a bit more, lol but who was I kidding she's still my tiny little boo boo.  She did look so cute though...check her out!! She also PASSED on the first try, she had a few desats but they still passed her based on her history & how often she desats.  So 1.15.12 was her car seat passing day!!! Going home was around the corner!!

Mount Everest....

You ever feel like your climbing to get to the top and it seems Mount Everest high? You just can't see the top.....well that's how the first two weeks in January were like.  Sorry I haven't updated Gorda's blog lately but the roller coaster became too much.....some may already know but for those of you that don't....my baby had to have her first surgery on Tuesday 1.3.12 if your following the blog than you know what ROP is (see blog from 12.11.11 for more info. on ROP) well basically after weeks of the eye doctor doing weekly eye exams on Monday 1.2.12 they informed us the baby had progressed to level 3 ROP & that she would need surgery.  I was not happy at all to find out the news, not only because my baby going under is very scary, but because I was so positive it wouldn't progress and we could've gone home by Friday 1.6.12. What a way to start the new year huh....nehow I can't even explain how scary it is to go through surgery with your child, especially for Sophia that had to go back to level 3 Nicu & get reintubated for surgery.  She got reintubated in the afternoon & surgery wasn't until 6pm so you can imagine how frustrated she was with the tube & crying all afternoon up until surgery.  It was killing me to see her like that because you know she's crying she's back in an isolette & you can't carry her because she's intubated & you can see the tears rolling down her eyes.  Somehow I managed to get through the evening & stayed to sleep in her room that night at 6am the following day they decided to extubate her & exactly one hour later I asked if I could hold her since she was crying so much & a few minutes into me getting comfortable with her she starting going down had a huge episode & 911 reintubation.  What happens there when a child has an episode is instant.   I commend the staff for the way they come together as a team & the doctors and just everyone in general from respitatory to the front desk they are all just wonderful.  Well after Gorda's last episode in the NICU I spent the day & next night with her until she was extubated again on the second night around midnight & she did good for about 2 hours after I just had to go home and get some sleep.  So the recovery was a process & finally after a couple of days Gorda went back to Nicu level 2, back to feeding, back to an open crib & wearing clothes again, etc. than the wait to see when they would decide to start talking about discharge plans again.......oh how I've waited for the day tooooo long!! Send me home already, I'm tired of seeing my Gorda suffer!!! If there was a camera recording life in the NICU it would be a heart breaking reality show!!!!!!

The Car Seat Sign!!

I just want to see the sign, "Bring car seat".......I can't put into words what I feel or how this is taking a huge toll on me more & more each day.....I can say that I just want to hear "Bring the car seat"...I want my baby home, God are you hearing me??....please bring her home already!!!! She needs her momma & poppa!! Click Here for Video "The Car Seat Sign"  
P.S. If you have time I recommend seeing Addyson's entire story..here I just put the link to the one episode of the car seat so you can see the overwhelming feeling that comes with the sign & can imagine how I feel wanting it so bad already!!  I watched the entire series of "Addyson's Story" from pampers and it's amazing how I feel so very much like her...then again I guess all us Nicu moms feel the same pain!!!