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!!!!