Birthdays....Months will turn into Years!!

I wanted to share Sophia's birthdays with everyone...although I've always been anti suffering pics (I don't like my Gorda to be seen with all the tubes & yuckys all over her)....I had to put that aside just this once because I am by far taken today at how far my Gorda has pushed herself.  I was looking at how far she's come & watching a video of the day I met my princess & wow has she grown!! It really is a miracle how they grow.  I know she's taking her time & although I hope she won't turn 3 months in the hospital, I also am very grateful at this moment that she is alive & kicking (literally, she's feisty when she's hungry lol).  I love you Gorda don't you ever forget how amazingly proud of you mommy & daddy are, your such a fighter you really can teach us a thing or two about fighting (I want to be like you when I grow up)!!! Te adoro....

P.S. I chose to put all the pictures in black & white because to be honest it all seems like an illusion to me at times!! It's amazing how these micro preemie babies fight all over the world for their lives!!

The Holidays!!

I hope everyone is having a wonderful Holiday season...I just can't believe that Christmas & a whole other year gone is less than 2 weeks away!!! They weren't kidding when they said time flies after 25!!! I'm going to teach my Gorda to enjoy every second of her life, especially before 25!!! Anyhow in advance I want family & friends to know your with me in my thoughts this Holiday season & I love everyone dearly!! Please I need everyone to understand I was really anticipating to have my baby home by now, where I would enjoy her first Christmas with her at home & ring in the new year with her in my arms at home with her mommy & daddy, so if I'm not in this joyous holiday spirit this year forgive me!! It's hard to celebrate when your missing your biggest link next to you!! My main priority is being with Gorda everyday, especially during the holidays!! I intend on ringing in the new year at midnight right at her beside, taking her first gift to open first thing in the morning & spending the Christmas eve with her!! I don't know how I will feel as far as attending invites of celebration, but again I thank everyone for understanding in advance if I just can't make it!! Thanksgiving was very hard for me & I don't really want to put myself through it again for the rest of this year's holidays! I know everyone says next year we will have her home, but the fact is if your not her mommy you really can't understand that this year we don't & it was a huge burst of my bubble to accept the reality that she won't be home before the end of this year.  I've listened to this song that says "I lay at night and wonder will you be here by Christmas......this Christmas could be the one that I get to hold you.....this Christmas could be the one...I decorate the tree & hope you'll be here by Christmas...wishing I could touch your face & tell you that I love you...how do I smile & hide the pain I miss you here with me"  a 100x times in the last 2 months just dreaming & hoping Sophia would be home!!! Anyway since I've tried so hard to make this Nicu preemie baby life somewhat normal I did what not many if anyone has done before!! For my beautiful Gorda.....a Christmas photo shoot!!! Thanks to all her primaries that helped us get this done, I know Gorda will love her pictures when she grows up!!! From Sophia to you all, much LOVE, PEACE, & HAPPINESS this Holiday season & FOREVER!!

Kumba continues.........

So to give an update since my last post......the roller coaster keeps taking our little family for quite a ride.  On Wednesday 12.14.11 mi Gorda had yet another episode, the nurses say she doesn't like Wednesdays because this is her third week in a row having an episode.  This episode was bad because she got set back to the Cpap, I was really sad when they called us & told us.  I just lost myself in tears, to think she was doing so good even with the episodes the two weeks prior she still maintained herself on the nasal cannula, but now the doctor said she was "Pulling" to much in her breathing & needed the machine's assistance.  The Cpap helps by providing "Continuous airway pressure", so it makes breathing much easier for her.  Mommy though naturally worries & becomes scared.  I immediately started hoping that she wouldn't get set back even further because from Cpap she would go back to being intubated & we do NOT want that!!!  Thankfully though through today she is well, by Friday 12.16.11 she was off the Cpap & put on a high flow nasal cannula.  Since she continued to do well on that, as of Sunday 12.18.11 at night, they put her back to a regular nasal cannula.  Oh on Thursday 12.15.11 the day after her episode we had a parent conference at our request to ensure all the doctors are on the same plan.  Since all doctors work differently it's very difficult for them to coincide with a "plan" for her.  So the intent of the meeting was to express our concerns & ensure all doctor's & nurses are on the same plan with Sophia.  Which the entire team honestly is great, we really do appreciate every single one of them, but we just want to see progress.  They were treating her for Reflux as I mentioned before & the cereal seems to be helping so far, but yet after each episode the doctor's would order all procedures as if she had an infection (yet for 3rd week in a row it turns out not to be & all results come back negative).  So concerned after the 3rd weekly episode that maybe it was due to Reflux & not infections we wanted to get this cleared with the big hanchos!!  In summary doctors say she has "Chronic lung disease" because at her age she is still getting oxygen assistance and not really being able to be weened down.  It does seem she has reflux hence the reason for adding the cereal to her diet & giving her Zantac (but they don't want to do special exams eg. Upper GI, since it is evident & they are treating her for it). So they started her on nebulizer treatments (2 different medications) to help her out, and will continue to treat her for reflux.  It's basically a sit & wait for her lungs to get stronger & in turn hopefully get off the oxygen soon. We were told that apparently she could go home on oxygen a lot of preemies do, gosh I hope that won't be the case!! Anyhow as of today Monday 12.19.11 Gordis is not really improving much on the bottle feeding she is still getting 1 bottle feeding per shift, imagine that she has to be getting ALL her feeds fully by bottle to go home.  Goodness it seems like it will be some time before she jumps this hurdle, I try to encourage her & cheer her on when I get to feed her but my poor baby gets tired! It's hard for babies her size to learn the suck, breath, swallow process.  She'll get it though, hopefully sooner than later! As far as her weight, great news I just found out to go home she only has to be 4 pounds/1800 grams & she is at 1750grams as of this morning so 50grams to go & she's jumped that hurdle!! I have to add our little peanut is just adorable as she fills in more & more....well she was always beautiful it just gets better & better!!! Last night Daddy was looking down at her in her bed sleeping & saying "Wow how big she's gotten"...she has we are PROUD OF YOU GORDA!!!

Our First!!

I wanted to share some of our princess FIRST!! In the last week she has jumped quite some hurdles.  

On Monday 12.5.11 they let me attempt BREASTFEEDING, you have no idea how emotional this was for me.  You know I've been with this machine pumping for almost 2 months & you feel so disconnected when you can't breast feed your baby directly, especially when it's what you wanted all along.  I got real emotional & teary eyed!  Maureen, my lactose consultant at the hospital, she's amazing!! I'm so grateful she gave the ok to do this & was happy to share the moment with us.  Normally the babies this small don't even latch on, considering Gorda was born at 27weeks she did great they say.  Maureen said even if the baby wasn't able to really suck hard enough to get milk, it was a bonding experience for us.  You know I always visioned the day she was born, them putting her on me right after she came out & Mike, her & I taking our first picture, & then them bringing her back to me all clean so she could latch on right away....it sure didn't turn out that way.  I never expected it to be almost 2months before I felt her latch on, it was just like our kangaroo care, very bittersweet.  I didn't want to have to stop & I sure didn't want to have to go back to that dreadful machine.  Unfortunately since it's too much for her still, it was a one time thing for now, so it's not like we can practice the breastfeeding at least for now.

On Friday 12.9.11 we took our first trio picture where Gorda was actually SMILING!!! She smiles a lot actually (Later I'll post my favorite smile pics) but this was the first time that the three of us take a picture that she came out smiling!!! I love it!!! 

On Saturday 12.10.11.....drumroll please.......they let Gorda try to BOTTLEFEED, yep totally not something expected, but her primary Alyssa pushed for them to put the order for her to try to see how she would do (Thank you so much Alyssa).  I have to say with so much pride, that Sophia is incredibly strong & has so much will power, it's almost as she knew the bottle was coming & what she had to do & did great!! I'm proud of her, it was an amazing moment.  Once more very emotional, she looked so adorable sucking her bottle her little lips are precious & when her cheeks would move ahhh it's just amazing to have a princess that's so incredible!!!! Alyssa was there & kept saying how wonderful she was doing, she even got teary eyed & was so proud of her "Baby girl".  You know prior to starting Alyssa warned me & prepared me, told me not to freak out when she starts turning funny colors or desatting, choking, etc. but just the opposite happened.  Gorda didn't do none of the above really she only maybe gagged once, she actually did great & drank 20ml's!! So it's official she's a hungry bear like her daddy!! Now the new orders are to attempt per shift (that's every 12 hour span) to bottle feed at least once.  So I'm happy, I may not be able to breastfeed, but at least I can bottle feed her.  I'm looking forward to seeing her progress, I hope she will continue to jump the hurdles as great as she has so far! 

As of today Gorda weighs 3 pounds & 8 ounces, great news is since the last episode they decided to add rice cereal to her feeds since they think she has reflux they say it will help with it.  So the bright side of cereal is she can start gaining weight faster.  (Remember she has to be at almost 5 pounds to go home). 

Kumba!!

So Kumba is the title because that's how this weeks roller coaster felt like....as my last post mentioned this is a big draining roller coaster....since the last post Gorda turned out to not have an infection for that 11.30.11 episode that's the good part, the bad part of the "Set-back" is when they re-started feeds they had to start at 5ml's instead of full feeds which was 26ml's prior to that episode.  Mike & I have realized how much of all this is usually a "Double edge sword"........For instance on Tuesday 12.6.11 Gorda had her 3rd eye exam since birth this is a routine check they do on preemies to check for ROP Click Here (Info. on ROP)  and for the first time it came back positive but apparently we were told she only has Level 1 & that most preemies get it but grow out of it.  GOD I hope so I don't want my baby to ever have vision problems.  See the reason we say it's like a double edge sword is in this case the oxygen helps her breath (she is still on a nasal cannula) & without that she would not be able to breath on her own yet, but the other side of it is that the more time they are on oxygen the more chances there are on her vision being affected (higher levels of ROP).  So I was really sad to hear that Tuesdays exam came back with level 1 and I just hope she grows out of it & they get her off oxygen soon.  So as the week went on my baby had another episode on Thursday 12.8.11.  This time they called from the hospital at 5am, I already know when I hear the phone ring at that time, it's something bad! The nurse practitioner Julie started to tell me the details she basically had Bradycardia aka Brady's & was Desatting to the 30's (Normal for her should be in the 90's) this episode was one of the worse ones where they have to "Bag" her to bring her back, the scariest part is that Julie said she almost didn't recover from it.  You try and hear your daughter almost didn't recover from an episode and not want to just curl into a ball & die....maybe not literally but I can tell you that just the thought crossing my mind makes me sick.  I could not go on if anything were to happen to my baby!!!!  After they bagged her it was so much pressure, it apparently made her throw up so much it was coming out through her mouth & nose.  (Imagine how exhausting it is when us adults throw up, so I hate to picture that she was throwing up so badly)  All I could think about is how much my baby should be hurting how much pain she's in from this episode there was no way I was going back to sleep even if at the point they said she was "ok now".  I had to get to my baby's side, so I got dressed & headed to my home away from home, when I got to the hospital I got to carry her.  Apparently that's what she needed was some comfort & love when I got there she was fussy & as soon as she laid on me she passed out.  I was shocked because usually after episodes they won't let you carry the baby for at least 24 hours.  So of course as always after an episode, feeds were stopped again, antibiotics started, blood culture, urine culture (I just found out they actually put a catheter in my poor baby to do this) basically the drill to rule out things to see what she has.  They always think it's an infection that's why they start antibiotics right away.  So basically my entire Thursday was in & out of the hospital with Gorda, by the end of the night you can see she was super pale & she had to get her 4th blood transfusion since she was born.  Well that's this past weeks update, thankfully from this episode as last weeks nothing came back positive.  The cultures were all negative, & they restarted the feeds by the next day & surprisingly not at 5ml's they re-started at full feeds her 26mls'.  They believe her episode was caused by reflux (Heartburn), so I'm happy with the end result, but as always her episodes hurt me like hell.  I wish my baby didn't have to go through this, why her is all I can think sometimes, why me, we don't deserve this!!!!

In the Nicu World!!

Hello Sophia fans!! So sorry Sophias mommy hasn't posted much of an update lately but I must admit I'm a bit drained.  I can't express how this life in the "NICU World" is quite draining...I can only try to show you a bit of it.  It's not a day to day living experience it's more like hour by hour.  One hour your baby can be perfectly stable & the next your baby is no longer "stable", has been set back & is suffering all over again.  Tuesday night we left our Gorda perfectly good in fact she had been doing well in general since they transferred her to NICU 2 on Thanksgiving day.  When I say "generally good" this doesn't mean she's not desatting or that she's not on any kind of treatments because there's always something new.  In fact in the last 7days they have started doses of Calcium, Sodium, a multi-vitamin, Physical Therapy started on Monday 11.28.11 (They will see her 2-3 times a week to ensure she is doing what she should be at her age).  So Wednesday 11.30.11 (as I do first thing everyday when I wake up) I called to see how my baby's night was.  I spoke to Michelle who told me she was doing GREAT, had a great night, informed me she was weighing 3 Pounds already & had grown a quarter of an inch since her last measurement, & informed me she was tolerating her feeds (which they were at FULL feeds over 1 hour period which is basically the last step before they attempt to start teaching her bottle feeding).  Then as it is in the NICU world the roller coaster decides to drop down!!! Less than 2 hours later after speaking to Michelle she calls me to tell me Sophia was "Behaving bad" (This is what the nurses like to say in an attempt I think to approach it differently so it doesn't hurt so much when they are telling you she is doing bad) so apparently she started desatting into the low 30"s & had some bradys & became lifeless pale again & there she went to gain herself a bunch of test & cultures they started thinking she could possibly have an infection & as usual in this case they stop the feeds & have to wait for results.  So Thursday went by and so far the cultures were negative so no infection so far, gorda was looking much better had her pink color back and they re-started feeds the thing that sucks is they have to start back at square one.  Feeds start at 5ml's when she was already at full feeds.  Wednesday was horrible for me mainly because just Tuesday night I was crying at the thought of my gorda not being home by Christmas & New Year's Eve.  Me having to go through another holiday like Thanksgiving is unbearable.  I guess realizing that with this set back Wednesday my baby now definitely probably won't be home for Christmas killed me inside.  I know it's best for her to stay in the hospital as long as she needs to, but I was so happy since she was doing so well and than this stupid roller coaster took us back to square 1 again.....Why....please no more set backs.....Now more than ever I realize why I've hated roller coasters my whole life, they make me SICK!!!

I LOVE SOPHIA!!! COME HOME SOON BABY!!!!

Our Angel

I just wanted to say that I'm absolutely in love with my daughter!!!!!! She is everything I've ever wanted!!! 

 

Thanksgiving!!

I hope everyone had a wonderful Thanksgiving..I apologize to all my family & friends that I may have not seen or called to say Happy Thanksgiving but everyone is always in my heart & well wishes!! Unfortunately for me Happy wasn't really my mood for most of the day, I know it is a day to be thankful & happy but I must say as much as I tried it just didn't feel complete for me with my gorda not being by my side all day on her First Thanksgiving.  I tried to go to the hospital as much as possible in between visits to family homes......Daddy & I went to see her in the morning & dressed her for the first time in a little outfit she looked perfect (she can finally wear clothes)!!! I haven't been able to find much preemie clothes but did manage to find some bodysuits..they are actually big on her lol.  Having to leave her there alone in the hospital in the morning was real sad for me...to be honest I really could careless about going to anyone's house I just wanted to carry my baby...but of course we love our family & had to have our Thanksgiving meals.  After we finished eating at daddy's families house I couldn't bear no more...I had to escape back to the hospital for a quick visit before my moms dinner.  I can't explain how much I just longed to be with my Gorda don't get me wrong I was grateful that she is doing well but I just want her well enough to be in my arms at home.  Seeing everyone at the tables with their kids & family I felt incomplete.....our baby should be with us at the table you know....but anyway I managed to get through the day with a few crying moments.  At the end of it once we finished at my moms....daddy & I went to the hospital and FINALLYYYY got to have some kangaroo time!!!! OHHHH & we graduated to NICU 2, yes the baby has graduated from Level 3 Nicu to level 2.....so if you go visit she is no longer in Level 3 Room 6 she has been transferred. This is a positive it means she was healthy enough to transfer, but daddy & I weren't too happy because it means no more private room now it is all the NICU 2 level babies in one big open space room literally like side by side.  Either way we are looking at the bright side if she wasn't healthy enough she wouldn't have been transferred!! 
P.S. I pray to God I don't have to spend another holiday like this one, I can't do Christmas without my Gorda next to me...no one understands how I feel seeing her in that little isolate all alone especially on holidays when everyone is with their loved ones!!! Please God I can't bear another holiday without my Gorda, bring her home by Christmas Eve....!!!

Kangaroo Care

On 11.17.11 we had our first "Kangaroo Care" basically that is where we get to carry Sophia!! I can not even come close to expressing how very very special the moment was for me & how at the same time it was bitter sweet!!! So I will just leave you with the pictures of that moment for our little family!!! WE ADORE SOPHIA TO INFINITY & BEYOND!!!!

Graduation to Junior!!

As of today 11.20.11 gorda has graduated.....no more Oscillator (Freshmen)....no Ventilator (Sophomore)....she is officially back on the C-pap (Junior) they "extubated" her yesterday Saturday 11.19.11  @ 10.45a.m......God willing within a few days she will be on a Nasal Cannula (Senior).....for now the doctors want to keep her on the Cpap!  Mommy was with her all day yesterday just watching & hoping she would do well.....she is "Pulling" a lot to breath so the doctors are watching her to see how she continues to do.  Keep in mind there is always the possibility that if she doesn't do well she has to get "re-intubated" & go back on a "Ventilator" again but as of now my champ is hanging in there.....also hard for her now on Friday 11.18.11 my poor baby had all her "drugs" removed she was on a continous drip of basically a drug that sedates the baby a bit to deal with the pain of the oscillator and since that was discontinued as of Friday the baby has been having "Withdrawels" apparently some babies get a bit addicted to the drug and gorda did a bit and coping with the removal of it was tough for her especially the first 24 hours....so I slept over Friday night with her the only way she would stay calm was gripping both mommy's fingers.  Some symptoms of withdrawels are sneezing alot, pooping alot, twitching alot, high temperature, & a few other things....so that's why she wanted to grip my fingers if she didn't her hands were in the air constantly twitching....& her heart rate was super high....Daddy & I had basically been there with her from like 6pm-2am and she didn't sleep an ounce that night....we just left to go eat at 2am & when we came back around 2.30am I was going to go home but I couldn't so I told daddy to go home & I stayed...poor baby was like that all the way through until Saturday morning....I went to shower & rest a while to come back as quick as possible Saturday...by the time I got back they had already put her on the Cpap so that was the positive for the day but my gorda continued to have major withdrawels from the drug so much that they bundled her for the first time & they aren't even supposed to wrap them in blankets because they have to monitor their breathing...but it was the last resort to calm her down...finally the doctor said they were going to have to give her some morphine to help her with the withdrawels..so yesterday those were started & will continue for 72hours...to me of course I don't understand why if a child is having "withdrawels" from a drug they'd give another drug but apparently that is what they do it's their way of "weening them off the stronger drug"......So here we are that's the latest of my babies life...I hate to see her suffering it kills me..yesterday since she is on the Cpap now you can hear her crying & she was crying soooo much..it kills me that I can't just pick her up & carry her to comfort her!! A mother should never take for granted the "comforting" she can give her baby!!! I wish I could do more than stick my hand through a door and hold her little finger!! Missing my gorda dearly.....going to see her tonight!!
P.S.  Sophia's current weight is 2 lb 11 oz., and she is 13 1/4 inches long.

"Time"

I keep hearing this word & I must say it's quite haunting......Does anyone understand what hearing "It's just going to take time" feels like???  I mean do you really think I want to be hearing "It's just going to take time"......I don't have the heart for all this "Time"......I'm not built ford tough!!! I'm sorry but it isn't what I want to hear.......I want to hear she's going home!!! I want OUR BABY HEALTHY & HOME!!! That's the real truth!!! Yes, I know it's going to "take time" but I'd like to think that Sophia is so strong she won't need as much time as others.  Do you know there are NICU babies that have stayed for as long as 10months....god please don't do that to me!!! I can barely bare another month!!! In my world a day feels like a week, a week feels like a month, and a month feels like a YEAR!!! I know time keeps going for everyone else, even for daddy.....but for mommy it just doesn't there are moments where it feels like time is stopped.....nothing feels the same.....nothing will feel the same until I can put my gorda in her car seat & drive her home......where she belongs!!!

The Preemie Prayer

Dear God, as you look down upon us,
We know that you might have to squint.
We're located here in the NICU,
It's the nursury that we rent.

There are many alarms and sirens,
Connected to condos and flats.
The nurses tape our booties on,
And dress us in funny hats.

We have a lot in common:
All of us were in a hurry.
For many different reason,
Our storks came a little early.

Some of us don't know why,
We bursted out from our bubbles,
We entered into this world,
Never meaning to cause any troubles.

Mommy and Daddy are worried sick,
About the odds that we must beat.
Please God, help them to realize,
That seeing us grow is a treat.

Breath by breath, we'll learn to breath.
Ouncy by ounce we'll tip the scale.
We're like a big boat in the ocean,
That knows not to sink-only sail.

For we are living miracles,
Mommy and Daddy must simply believe,
That you have angels watching over us;
From the time we arrive, till the time we leave.

Just wanted to share this beautiful prayer my dear cousin Vianca found for me, I keep it by my bed and read it when I feel discouraged!!!

One MONTH!! Happy Birthday Princess!!

11.13.11....our princess turned one month!!! Feels like a year in there!! So mommy & daddy went to the hospital at night with a sign for Sophia saying Happy Birthday & daddy found her the cutest cupcake that was princess Cinderella.....we took Krispy kreme doughnuts for the staff & everyone was so thankful...there really are some amazing people in there!! Anyhow Sophia since Friday's episode has been much better, apparently when they incubated her they put a bigger tube so it has helped her alot....she is still not back to herself since periodically they give her the sedation & she's actually now very sensitive to touch...my poor baby..I think she's traumatized with what happened Friday & the amount of people I'm sure that had hands! So I haven't been able to touch her much since then because she starts "desatting".... : ( I hope she passes this soon!! Anyhow we sang happy birthday...we as in mom, dad, her primary Alyssa, respitory nurse Pierre, & her nurse for the night Meg...thanks to everyone who sang for our Sophia!! It was a good night for her & although I was happy that she is one month..before leaving I got a bit teary eyed because I don't know how many months we'll be taking her cake there...I just hope she's home by Christmas!! I want my baby home!!!!!!!!!!

A Horrible Day!!

I'm sorry I haven't written in a few days, but it was a pretty long weekend....on Friday 11.11.11 Sophia was doing great all day than mommy & daddy arrived to visit at around 9pm & started our "Touch time" with her (Not sure if everyone knows but that's basically when they let us help nurses in changing diaper, cleaning eyes/mouth, taking temperature, etc. nurses normally do touch time every 4 or 6 hours depending on the babies specific needs or doctors orders) anyhow we were doing touch time finished it up and a little before 9.30pm the nurse asked the respitory nurse to please change the "Fixator" on the baby (This is the "sticker like" persay piece that holds her tube for incubation in place).....So long story short they started that procedure & we were in the room it's a simple procedure just changing out the tapings & all of a sudden gorda threw up it was so hard to see that because it was so much & since she is on her back it's like dripping down the sides of her face & some obviously going right back down her throat (they of course attempt to suction as she's vomiting) then some minutes passed & all of a sudden she went from being in the 70"s stats to basically 14 was the last number I saw on the screen before I got out of the room (She was purple & blue & white once more my second time witnessing my baby looking lifeless)  Only this time the numbers had reached what I had never seen before & there were about 6 people rushing in, some nurse on the phone frantically saying we just pulled the tube on Frias, another saying she "Excubated" herself, & well I can't explain how this feels to anyone because until you live it you would never understand, but I can just say that I wouldn't wish this on my worse enemy!! I couldn't breath, I felt like God had just taken my baby from me, I felt so cold, I had the biggest knot in my throat, I could go on & on about how horrible it felt to hear all this from the hallway & not know what in the world "Excubated" meant & not know if they would get to her on time & so forth...!!!! Basically "Excubated" is where the tube that goes down to her lungs to keep her breathing has "come out" or moved from it's proper position therefore she isn't getting that pressure/air for breathing!! In the end the doctor was running through the hall to her room & with the assistance of I'd say 9 nurses including the respitory team they thankfully "Incubated" her again on time.....I'm so grateful to every person who just jumped in to help when they were just walking by & could've kept walking to the kid they are in charge of.....Since the moment was so distraught I don't even remember the faces of those that ran in to help but one face I just can't remember her name she's the one that said "We pulled the tube on Frias"....& of course Brian who was walking by I remember at the moment I was getting out of room with a box in his hand & he basically through the box down & jumped right in...but to all who jumped in a million thanks!!! When they finally let us back my gorda just laid there looking so tired you could see her gasping taking "suspiros" as we call them in spanish..her little lips shaking a bit & once more I stood over her bed with tears in my eyes wishing there was something I could do.......!!! My heart is broken this night for little Sophia is suffering & she doesn't deserve it.....God help me get through this I can't witness another "Episode"!!!! Trying to keep the faith, but the faith is hard to keep!!! ........."Your are my sunshine my only sunshine....please DON'T TAKE MY SUNSHINE AWAY!!!"

Long Days....

"You are the reason I wake up each day, with this fulfillment that my life has finally found it's purpose!!!!!!".....I ♥ U!!! -Love Mommy

I'm really really tired..was all you would notice if you saw me yesterday......it was a rough Sunday & Monday.....at 6am on Sunday 11.6.11 they called us that little miss Sophia had a turn for a little worse, she went from the ventilator to what they call an "Oscillator Ventilator" it's basically the scary grandfather of ventilators I'd say.  It's really not good to hear your baby has reverted to a stage she has never been at since she was born but unfortunately that is this of the NICU world, it's a rough rough roller coaster!!! A little more info. on what this machine is if interested Click Here (Info. on Oscillator Ventillator)
Basically she was just too tired for even the regular ventilator and her lungs were more collapsed than before so they needed this machine which apparently keeps the lungs open.  So of course once we got the call, immediately I get dressed to run to my baby girls' bedside.  As soon as I get there and touch her it's like she knew I was there she grabbed both my fingers one on each hand...her touch fills my world!! So the day was long I spent the day & most of night there, Brian one of Sophia's R/N's was kind enough to find me a recliner so I could be more comfortable, much appreciated.  I have to say I much rather be by her bedside so I can get up to comfort her every time she desats than anywhere else in the world.  She needs presence, time, comfort, & love!!! Love is the biggest healer I say!!! So as Sunday went by she was not getting any better, desats all day basically and that is not good.  Overnight things were basically the same.  Come Monday the doctor was running a bunch of test, ordered an ultra sound of her heart to rule out PPHN & all day I was just a nervous wreck.  Thankfully PDA was ruled out early in the day & PPHN found was mild too mild to even treat....so Dr. Fajardo decided the allow Sophia to rest & wait it out thinking that she could have another type of infection most likely fungal so they started her on the anti-fungal medication first thing Monday morning.  So as the day went on more so Monday afternoon Sophia was desating less & finally allowing them to lower the levels of assistance given to her so she went from 100 to the 80's by the end of night.  Mommy being exhausted went home at about 9pm to attempt to get some sleep, and daddy stayed in hospital once he arrived after work until about midnight leaving Sophia in a stable condition and stats in great numbers.  So today Tuesday gorda according to the doctors is doing much better, she is on level 66 right now so from 100 yesterday she has gone down to 66, the goal to get her off this machine is apparently to be at 21 & for a few days I believe.  So we will see how she does and how long it takes to get her off this noisy machine....it's amazing because when she was put from Cpap to Ventilator I was so heart broken & now I'd do anything to have her back on the regular ventilator so it's closer to getting back to Cpap & closer to getting back to room air & no machine assistance!!! Anyhow my gorda will get there she's just taking a vacation from the hard work for now & she's entitled!!! I really really need her to get back from vacation though so we can carry her!!! We can only carry her when she is stable & on the regular ventilator or preferably Cpap it depends on nurse & doctor on shift.....I just want to carry my baby already I have yet to have "Kangaroo Care" with her & she will be a month old on Sunday! P.S. Kangaroo care is their term for caring the baby.  
P.S.S. Sophia rescued me!!! She's the miracle god gave to me!! When she wraps her hand around my finger oh it puts a smile on my heart!! I realize what life's all about!!
Click Here-(A song for my baby.....for our life together!)  

 

Feedings.....aka Eating

Several people ask me often if Sophia is eating...so I'm doing an entry regarding the subject alone....She has not been "Feeding" as often as we'd like because she is so small & her intestine's are just as tiny.....so it's a long process.  "Feeding" is the term used by docs for eating.  When they "Stop feeds" it's usually due to one or a combination of some of the following:  It could be she's not digesting her food, her belly is found larger than normal size for her, she hasn't poopied, or she's really sick eg. infections, respiratory problems, etc.  So when you hear me say her "Feeds stopped" it's because of that, they usually will give it some time, wait for more stability, etc. & than attempt to "Re-start Feeds".  Sophia has experienced a few different forms of feeding:  Either every 6hours a one-time of 2ml's or what they call "Continuous feeds" which is the feed over a 4 hour span at .5ml so she gets the total 2ml's sent to her tummy slowly.  Oh for those who've asked YES she is drinking mommy's breast milk (may I had pumping is a job in itself lol) especially because I've learned that breast feeding successfully has a lot of factors one being a connection to the baby this is extremely hard when your baby is in NICU so producing milk has been quite a challenge but at least for now since she only feeds 2ml's it's not too much milk she needs right now. NO, she does not feed from my breast directly...I pump, bag it, label it, & hand over the milk to the Nicu nurses.  Gorda has a tube going in her mouth down to her tummy so that's how she gets the milk through there for now, I'm looking forward to feeding my little jewel myself!

Middleweight Champ!!!

Our Gorda has reached "Middleweight Champ Status" lol....last night 11.4.11 @ 10pm we were at hospital for Sophia's first sponge bath & they weighed her, she weighed 2 POUNDS!! : )* Yay for Gorda!!! When they weighed her daddy was like "She's a heavyweight now", but after a few seconds we decided "Middleweight" would fit her best right now lol lol!! For those that don't know Sophia turns 35 weeks December 6, per the Docs for her to go home she must meet the following: 35 Weeks, 5 Pounds, be "Feeding", pass the car seat test, & of course in overall good health!! So of course mommy & daddy are wishing & praying our little fighter will reach all that before Christmas, so she can be home for Christmas & we can have our first Christmas together @ home!! Her first sponge bath was good, mommy did the top part & daddy the below...we joked with the nurse when daddy was doing below that he was going to put a "chastity belt" on his little girl & no dating until she's um...he says NEVER!! LOL..don't all dad's say that!?!? After bath time as you can kind of tell Sophia didn't even want to open her eyes (I also think she's tired of how many pictures mommy takes lol).  I can't help it she's so delicious & I take so many pictures so when I'm not next to her I can look at them 100x's when I wake up, throughout my day, & when I'm trying to fall asleep.  I think I've said this before but my goodness, I can't kiss her enough!!!! I LOVEEEEEEEEEEE MY GORDA!!!!! She's just tooooo yum yum!!! P.S....We are so grateful Sophia's primary nurse Alyssa let us bath her!!! She's amazing with Sophia we are so blessed she treats her like her own!!! I feel so at ease when I know she's with her!! Alyssa calls her "Baby girl" in this awesome sweet voice that I can't help but be thankful she chose to primary her from the day Sophia was born!! She has already started to spoil her "Baby girl" & bought her a blanket that says "Baby Girl" & some sheets to dress her bed!! Thanks Alyssa!!

Daddy's Peanut

I just want to take a moment to say Sophia is a lucky girl, her daddy loves her!! Mike has been with her since the minute she was born & they took her to the NICU for the first 24hours he was the only one that could be with her since I was on major drugs (due to high blood pressure) & mandatory bed rest so I couldn't meet her until the next day after 6pm.  I was sad that I couldn't see her, but so happy to see Mike taking care of her, watching over her, & taking the family to meet our princess.  I felt so proud of him & us as a little family for how he was so attentive to Sophia & mommy.  It made me feel complete to see how happy he looked when he'd talk about Sophia & the happiness you could see in his face.  He came to my room & showed me pictures of her & described her to me, you could see he was a proud daddy!!! So I just had to say thanks to my man for being such a good father, I know this is all new to you but your doing a great job!!! Just like I always knew you would, Sophia is a lucky little peanut!!! (Daddy's name for his little girl is "Peanut"!!!) I love them both so very berry much!!!!! P.S. I can't wait to see Sophia laying on daddy's chest on the couch while they watch the Giants football games!!

I could hold on forever!!!

I could hold on forever LITERALLY!! I have found such a joy in being there for my Gorda when she needs my hand to hold.  It's amazing how she grips so hard, I've noticed more so when the nurses are messing with her she holds tighter.  I love the feeling I get when she holds my finger.  I love how soft her skin feels.  I love sitting there for hours while she holds me and we both fall asleep (Even if I'm sitting with my head leaning on her isolette it's still the most comfortable place in the world because I'm with her and we are holding each other) I know every good mother knows this already, but a mother's love is so different from anything else in the world.  I always figured this even more when my first nephew Anthony was born I couldn't get enough of him (I still can't) I used to tell myself "Wow if I love AJ this much how will it be with my own".....oh boy I hope Sophia is ready because WOW DO I LOVE her.......She has overpowered everyone....Sorry world but Sophia rules my world now!!  It's like no one or nothing matters anymore to me but my princess!! I love her to pieces, she's the LOVE OF MY LIFE!!!  The world could fall apart and as long as I have her in my life I'll be more than fine.  I can't wait to share our lives together....I can't wait to attempt to be the most perfect mother ever!!! I am far from perfect, but for her I will try every minute of every day to be just that for her.  I always want to give her a reason to smile, and no reason to cry! I always want to give her a reason to be proud of me, and no reason to be disappointed!  I always want to give her a reason to feel loved, and never a reason to feel unloved!  I can go on forever of what I want for Sophia.....for now I leave her with this song My Wish for Sophia (Click on link) Did I already say, I love holding her hand, I love kissing her (Yes mommy & daddy have gotten to kiss her when they've opened her isolette to do something).....Oh my how I love kissing her she's so delicious!! Ok that's enough for today....Goodnight...Sweet Dreams!! 

She is my Sunshine!!

I have to share that when I first met Sophia and saw her in her little isolette I thought of this song Sophia is my sunshine!!!..(Click on link) The first time I attempted to sing it to her, I must say I couldn't make it through to the end of the chorus.  When it says "Please don't take my sunshine away", I choked & started crying.  See that first time I sang it....I had uncertainty of how our little girl would be.  I go back to not many really understand how scary this is, everyday is different, some days she has a good one, some she has really bad ones.  The staff warns you and tells you it's a roller coaster ride.  I've seen both sides of it already.  I've been the only one to be present & witness her completely stop breathing medical staff was running in to use the bag to bring her back....for that instant I felt I lost my sunshine.  It was so scary when they kicked me out of the room, this was Saturday 10.29.11 @ around 6pm.  I found myself all alone in the hallway I just wanted to fall to the floor, but I couldn't I had to attempt to be strong, stay positive, and pray she'd be okay.  I kept repeating this song in my mind...please don't take my sunshine away God!!! Thankfully within 20mins. they let me back in & there she laid looking pink again (she had turned purple/blue/white a lifeless color).  An R/N came up to me & asked "Are you okay, I know that experience can be quite traumatizing"......was I okay um of course NOT, but I am so grateful for being asked. She went on to saying if you can make it through this you can make it through anything in life!! I must say I agree with her......we are three weeks in tomorrow and it has felt like three months.  I have to say without the team at NICU it'd be much harder they are so comforting and always there to help you.  I've experienced hugs, a gentle rub on my back, and even a tear wiper!!! In any case after the nurse & I spoke I sang to my princess attempting to sooth her for what she had just experienced.  By the way I can now make it through the song without choking ......but still my heart is heavy I feel so helpless not being able to breath for her when she's tired, to make her heart beat normal when it races, & all the things she goes through I wish I could trade places with her.  For those that don't already know this, the same day she had this episode on 10.29.11 Sophia was also put back on the ventilator.  What can I say but the feeling when I called at 3pm and found out they had just put her on it emergency style was quite dark, sort of like a cloud over my head.  She had already gone back on the C-Pap on 10.27.11 after 7 days of breathing on her own, so I was overwhelmed at the thought that the doctors said the C-Pap may not be enough and to be prepared for her possibly going back to vents, sure enough they were right and after just 3 days on the C-Pap she went back to vents.  I'm proud of her though after all she lasted so many days on her own!! The doctors say it's normal for babies of her age/size to get tired & go back to Point A, but for mommy I can't accept her going back it hurts me to see her with this tube down her mouth.....AS of today 11.2.11 she continues on the ventilator and she isn't really improving much in the sense that she doesn't look like she will be back to C-Pap any day soon.  She is on high levels of oxygen assisting her and when they try to ween her down she is not accepting it.....so for now she will most likely be on vents for a few days they say.  Docs say she needs to rest so that's what we will do, let her rest & watch her!  Hoping soon she will improve and go back to where she had already triumphed, no machines just doing it on her own!! I pray it will be soon because I don't want my baby to suffer!!!!!

Smiling at Mommy, 10.20.11

By day 8 little peanut was off the Cpap and breathing on her own!!! I'm so proud of her for being so strong, now if only mommy can have her strength.  This is not easy having my baby in NICU! Not being able to bring her home kills me.....everyday....every minute I yearn to be with her!! Anyone who hasn't lived this experience can never understand or relate!! Being exhausted mentally (Not to mention physically trying to recuperate from c-section & dealing with high blood pressure), overwhelmed, sad, worried, and all these mixed feelings is no walk in the park......but when I saw my baby smile for the first time...it just made life easy that day!!! Sophia smiled at me and it's almost as if she was saying "I'm going to be fine mommy, just relax!!"...I love you for that Gorda!!! Your my little angel!!! I hope you will always smile in life through all it's ups & downs my love...just keep SMILING!!! I will always do my best to keep you happy, so smiling can be easier!! 

First time I saw her eyes, 10.16.11

I saw her eyes for the first time on October 16, 3 days after she was born I must say it was really emotional for me....She is so tiny and yet I saw a huge world in her eyes!!! She is so full of life this day, less than 24 hours after being born Sophia was off the ventilators and on the Cpap.....they were saying she is a feisty little girl and so alert!! AS you can kind of tell in this picture....one guy even called her a little firecracker!! I can't tell you how much I just wanted to eat her alive.....look at her cute little lips!! I'm in love!!!

A bit overwhelming for Mommy

So I know how many people love mommy, daddy, & Sophia & that is why we have received an out pour of love & support, and trust me that we are EXTREMELY GRATEFUL.  At the same time it's hard for me to say this but I need to alleviate where I can.  I also need some time to relax and recuperate so receiving so many text, calls, e-mails daily is a bit overwhelming for me right now.  I don't want to say that I never want to receive a call or text, but just for those that do care to know daily updates on how we all are, especially Sophia ; )* I think it will be best to visit our Blog and I will do my best to update daily or at least every other day.  I came up with this alternative because there will be a lot of updates & a while that our Princess will be in the hospital so it's going to help me a lot in the long run!! I hope everyone understands, once more I love the attentions and concerns of everyone I'm truly grateful to have so many people that not only love me but more so our little peanut!!! So thank you in advance for visiting our little blog & caring!! We love & appreciate you!!!

Our Peanut is Born!!

Our baby is born......Sophia Perez born 10.13.11 @ 5.07pm Weighed 1pd7oz, & Measured 12inches long. 

Most of you by now reading this already know the story of our little caterpillar!! As daddy says she decided she didn't want to wait any longer to be born....so she came a bit early at 27 & 1/2 weeks to be exact.  I was told due to me getting preeclampsia & my blood pressure shooting through the roof, I had to have pre-term delivery immediately before both mommy & baby were in danger.  Scared to death when the doctor entered my room to tell me this I just turned my head and started crying as the doctor walked out, in a few hours C-section procedure would start with doctor Alba Martinez and a team from Nicu ready to bring Sophia into this world..........I was scared of the outcome but daddy was a one of kind support system from the minute they let him in to the surgery room he was a source of comfort.  I knew before hand that I may not get to see my baby girl but that she would be with daddy the whole time from the delivery room to the NICU department.