WELCOME KALI!

You may find further Kali's pictures and her own adventures at her blog:
www.KALISTOMEDINA.BLOGSPOT.COM

Updates/pictures shall be done over there, mommy's rants about her stuff over here.


V.

KALISTO's BIRTH: SCRAPBOOK

Here's Kali's Birth Scrapbook, at a glance! Enjoy! :)

This scrapbook design created with Smilebox

PPA Defined: Post Partum Anger

Ok... We KNEW things would be difficult... but COME ON!

It was the night before delivery, and all through the house
were really excited, we hope that even the mouse!
Then a call came, from the doctors ALAS!
We had to be early (REALLY EARLY), and so 4:00AM it was...

We reached the hospital in a cinch thanks to the Green Guy and his wife
No complaints here, as we knew we needed a breather...
The whole day would not be a teaser, but quite a test in faith...
Breathing in and breathing out... And then came 6:30... Transported for operation and then fear strikes in...

Couldn't tell why, but I knew something was wrong... Than and looking around I wished it was the operating room at home...
Leaving all in God's hands, the epidural was done... Counting time, curtains out... and the drama keeps on...

Hubby goes in, and operation had started... Bad idea!
So in the middle of it all he departed
as the sight of wifey cut open stroke some deep chords in his psyche...

I watch everything reflected in the lights over me, at least something amusing...
On one side the cord blood team, on the other the baby's...
And so at 7:15 AM Kalisto Beatrix came into this world,
a new Amazon Queen to simply rule us all!
After a while the cries of Kali were heard...
very strong pipes by the way!

Kali was taken away, few pictures were shot,
but at least the cord blood banking got done and then more.
I was finished by 9am, taken down to recuperating room...
and then time passed slowly and certainly... minutes, hours... almost a day.
I knew the place would be busy, but didn't expect such mayhem...
no news of baby... just news of trouble back with Deedee's care...
Nurses scheduled failed to appear, and so hubby had to stay home...

It was all as we actually expected, plans going down the drain as the same reasons re-apears...
Crappy nursing company that just don't cut it (final cut coming soon).

So I was taken to a room, while someone whined about me having luggage
(just a backpack and a pillow is now considered such a thing?!)
there was no A/C in the room, no shower in the bathroom... Just the bare basics so you dont plan a long stay. And still no news of baby... And hubby stuck with nurse care and stress.

Wednesday went away in a sweet and sour note:
Baby finally came, which made us very happy...
but circunstances spoil everything bringing up things that shouldnt be...

(The rhyming stops here, it was just for the birthdate).

Thursday... No news of baby, and hubby running home to cover a nurse gap...
Me, getting the complete Diabetic Treatment as if I had been hospitalized for that...
And getting scolding and evil eye as nurses imply I dont go to the nursery because I dont want to get up. Branded the official white latin bitch queen bee that just want to be served... and who only cares about the other kid at home, and with a boyfriend that is not there.

So... Thursday night came with a doctor that finally believed me when I said I couldnt walk because of my right leg's pain was stronger than the c-session pain.
Neurologist passed by, and yes my leg is weaker... at least that went in the record and some new appointments were made for me as outpatient... doesnt erase the annoyance of the past two days dealing with unnecessary bitching...
Hubby came at night as well, and with a wheelchair took me down to Intermediate Nursery. They had baby with a pulse ox and monitor...

And I pause here as... we are SMA parents, who see this in every critical moment of our SMA child. Imagine how our hearts sank. Turns out the girl had a sugar withdraw when the cord was cut (duh, no surprise there as I am diabetic), so they gave her sugary water, then decided that she may have an infection and gave her preventive antibiotics... then decided she was too fat and put her in a diet to see if she could be taken out of the diabetic gap..

Kalisto was 9 pounds 12 ounces when born, 21 inches long. Not a huge baby, a bit big (normal when you have a diabetic mother)... but in the land of 5 pounds babies she is abnormal. I guess this place is so jaded that they only validate a preemie weight as the right one... It is so stupid! And here we go with the new speeches about baby being too fat... Yadda yadda...

Back to the room... still no A/C, just plenty of stress because of the attitude towards everything... My legs keep beyond swollen, I cannot stand beyond 3-4 minutes, I definitively cannot walk distances... And I keep getting scolding from nurses that know nothing about this, about baby's wherabouts NOT in the open nursery, and about my stupid concern with the lack of nursing coverage at home for Deedee... and that I shouldn't whine about my hubby not being there all the time because most women that go into labor there dont even have a significant other... Can I say a big WTF?!

Friday morning. I was told I may be discharged through the day... On the 3rd day after a c-section? What about baby? So I go in the quest of finding out if I really can go home, if I better stay, and baby's condition/clearance to go home. Hubby arrives, with news that there would be no nurse for Deedee for the evening shift. And probably for the weekend. Can I scream?

One nurse somehow managed to hear the whole story, put the pieces together, and decided to help us go home. Through the afternoon she worked the miracle. I heard from my room how she was scolded by her colleages who told her it was all none of her business, that she should have just stick to her job, that I was just playing her as I had taken medication and I just didnt want to stand and do what all other mothers were doing (walking to the nursery)... Hubby went home to cover the evening shift, got a wheelchair thanks to our regular nurse so I could be rolled home if I arrived... and I was left alone in the hospital waiting for things to get solved... Kali was released as she was fine, and I was released... A cab took me and Kali home at 9:00pm. The lady that put Kali in the back of the cab scared me as she did so in a way that almost smothered baby. Then I managed to scrunch myself in the cab... as I could not lift my legs at all. In the way, the guy makes a remark about my boyfriend leaving me with babies and then not even showing up to pick me up at the hospital...

I got home with Kali... just asked hubby to check Kali was alright... and after setting her up in our room and finally being able to set myself up in the bed I just spend the rest of the night crying and crying... In just three days Kali came into this world and managed to survive how real and stupid it is.

All I have to say is God DEFINITIVELY watches over us. That nurse that helped us at the hospital, Joy, was an angel. Kali being healthy and well is a big blessing, and her being able to in the long run help Deedee is a plus. Through it all, Deedee definitively has her guardian angel working overtime.

Me... I still cannot stand for more than 5 minutes... legs and feet are VERY swollen... but I can deal with that. What really gets to me is all that people do and say to simply screw you for the sake of it... Why I have this big sticker in my forehead that apparently reads "Kick me, I'm stupid". I am sick and tired of being patronized, treated as ignorant, not believed, hated without motive or reason, treated as a latina tramp, treated as if I were worthless, humiliated whenever possible. And I still have to smile and wave all the way as I still have appointments to comply with at the fricking place...

I don't understand anything anymore. All I know is I just want to move out of this place. I have never hated a place so much... I know life is unfair, but there is a thin line between unfair and ridiculous. All I asked for was a normal happy day... Apparently that is simply too much. There were troubles when Deedee was born, but it all worked out... Now, being completely alone in this place from hell turns that into the most blissful moment in life. Family and friends acted as if nothing out of the ordinary happened. And strangers were beyond stupid as usual. Only a few ones actually smiled and wished us good vibes... mostly people who deal with SMA or know about SMA and know how hard things get... and how important it is to say a healthy child was born in my family!

We've been sad... but no more. What's the point on being sad? Our lives will never be the lives of normal Joe or Jane. People will keep failing us because in reality they don't know how things are, they assume many things as they look from the outside and see just a happily smiling couple who constantly speak of their big girl, and their newborn. There was no baby shower, there was no one celebrating Kali or us. There were no phone calls or messages from close family or close friends... We don't get it. But we won't dwell on it anymore. We have tried our best to be happy and open and to give all we have, and to believe and keep fighting. No lies, no requisites, no expiration dates... And we won't change that for anything else. It is who we are. We love, and we keep going as God takes care of everything that really matters to us, for us.

So, today we had no nursing service (how strange). It was Kali, Deedee, Mark and me in our room... The vent humming in the background, Veggie tales playing, Kali's occassional crying and us watching a movie. That's simple enough. And you know what? It is priceless.

V-

Week 36 with 4 days

Yay! I just reached full term! NST was ok, and OB-GYN asked me to go to Labor & Delivery, again, to monitor my blood pressure and baby. Spent the afternoon at the hospital, the blood pressure came down, and they did all the tests that I already had done at the clinic... I REALLY don't get it. They wanted me to stay at the hospital to uncover the mistery of why my sugars seem fine but the 24s shows up I'm uncontrolled... And that would make my life better, how? So, signed the paper to get out and came back home.

I don't get these people... The paranoia on everything and trying to find the big thing that is so wrong with me is quite unnerving. Right now, at week 36 with 4 days, the main concern should simply be two facts:

1- Baby is breached. Sitting there looking pretty, moving sideways and a lot... Labor must be avoided (duh), C-section is highly recommended (well, it has been scheduled for the 23rd anyway).

2- Plenty of amniotic fluid means I can break water anytime as my uterus is very strained. With that the concern is the cord coming out as well. So, at any sign of water breaking, or labor, a run to the hospital is mandatory (funny thing is that common sense says that it is something mandatory anyway)...

Next week I have a full growth sonogram on the 15th. I'll be 37 weeks with 4 days... My personal opinion, do the C-section by the end of next week. Kali is already full term and eager to get out. They should not wait for me to go into labor, many reasons for that. So... Let's see just how much more I can waddle and keep Kali inside. I feel she is ready. I know it. It is just the whole extreme testing poking and probing that they do here that is beyond ridiculous...

The baby has not caused me any high blood pressure. I only get it whenever I have to prowl the stupid surroundings of our dwelling (because they are NOT safe, and yes they make me VERY afraid especially since I must go on the prowl alone). And whenever I see the OB-GYN, who doesn't believe anything I tell her. Our family's high stress situation (both with SMA, housing and job hunting) should have been factors X, Y, Z when claiming I have high blood pressure! Along with the facts that I only show it at the stupid clinic...

This place is not my ambiance, and being forced to deal with people that have no manners or consideration and that are aggressive and stupid all the time REALLY doesn't help. At least I know that it will all be over in 2 more weeks. I hope Kali holds her horses and waits... or that the C-section is re-scheduled for the end of next week.

Now what do you think of that...

V.

A WITCH, A MAGE AND FAMILY

Some people where saying that I've been hiding behind Deedee or Mark or both... Well, I'm always the one taking the pictures and videos so it's not hiding. So, here we are, Mark & me, giving you an idea of how Kalisto looks nowadays. Here I was 7.5 months. Enjoy!









And here we are, the 4 of us on Mother's Day. Here I am 32 weeks (8 months). For those who don't know our family, here you can see Deedee, Mark, Kalisto (belly) and me! Yes, Mark is destined to be surrounded by women. :P



WHAT's BEEN GOING ON

The latest news is that the weekly BPP sonograms have shown a healthy Kalisto, and that this week the NST's began and so far there is nothing out of the ordinary. They keep on with the close monitoring of me and my sugar and my blood pressure as I always have stable pretty numbers at home but when I am at the doctor's office my blood pressure goes high. This is not a surprise for me, as by the time they take my pressure I have been through taking the bus, people stupidity and then being there and getting pretty annoyed and upset at everything... I can't help it even if I try being positive. This is NOT my environment. They don't get I am not used to high number of people in small places... Comparing how things were with Deedee and this it seems I visited a spa when I had Deedee. Here I feel as if I were always going to a slaughterhouse. I know it is the people and their aura of aggressive stupid ghetto behavior... But, what can I do? Just try to keep on swimming... And take a bit of comfort in knowing it is just one more month...

C-section should be within the week of the 21st-25th of June. Cord blood & placenta banking are in the schedule, cross fingers so it all goes well.

And the baby girl's name is Kalisto Beatrix. Oh, the name woes! Back in the island our families hate the name as they insist it is a male's name. On Mother's Day I even got my aunt reading a list of names that she made with my mother... My opinion about it, along with Mark's... WTF?!!! Come on! The pushing-the-issue-in-every-phone-call is quite unnerving. Kalisto is a FEMALE name. Look it up, and stop the stupidity. Me and Mark like different, strong names. So, bear with it.

~V~

IT's A GIRL! MEET KALLISTO BEATRIX

Well, today I got the 28 week sonogram. Here you can finally see something else besides the top of a head. As you see, there is a pissed-off face... Hmmm... Any resemblance with Deedee or Mommy is purely coincidential. So, here we have spunky Kallisto Beatrix, staring at the camera and already showing some attitude!

A BIT ABOUT THE NAME:
We chose Kallisto Beatrix, as Kallisto means "most beautiful" and Beatrix means "bringer of happiness", "voyager or traveler", and "blessed".

Kallisto comes from greek roots, "the most beautiful". It is the name of one of Jupiter's moons and an asteroid in the Asteroid Belt. Kallisto is also the name of Xena's nemesis, the goddess of insanity turned into an angel and then reincarnated as Xena's daughter Eve. Kallisto is also the name of a nymph that served Athena, and whom Hera turned into a bear in one of her jealous fits or rage. To save her life, Zeus put Kallisto and her son in the stars, thus creating the Ursa mayor and Ursa minor.

Famous characters named Kallisto:
Kallisto (mythology), a nymph
Kallisto, an asteroid
Kallisto, a moon of Jupiter
Callisto (Xena), a character on Xena: Warrior Princess
Callisto (comics), a fictional mutant in X-Men

Beatrix is a Latin name. It is a feminine form of the late Latin name Viator which meant "voyager, traveler". It was also a common name amongst early Christians, though the spelling was altered by association with the Latin beatus, meaning"blessed".

Famous people named Beatrix:
Blessed Beatrix d'Ornacieux, Carthusian nun
Saint Beatrix D'Este, Benedictine nun
Blessed Beatrix of Nazareth, Flemish Cistercian nun

Famous characters named Beatrix:
Beatrix Kiddo, a.k.a. The Bride, from Kill Bill
General Beatrix,the head of the army of Alexandria in Final Fantasy IX

~

SMA RESULTS ARRIVED!

And this is the 24th week with 1 day!

And the baby has a SMN copy, which means that it may be a carrier but it is SMA free! Yay! No wonder it has been kicking so much lately! LOL Well, this is happy news, hopefully things will keep on this way.

I'll just keep leaving everything in God's hands!
Amen!

Amnio results arrived, still no SMA results

This is the 23rd week (and 2 days).

So far, so good. Last week's appointment was OK, no news. Got a call today from the geneticist. The amnio results arrived, and everything in baby is fine (no espina bifida or any other defect), so we just need the SMA screening. But the results for the SMA testing are not ready yet, and may take another week to be ready. So... another week to go... At least my blood FINALLY got to the lab, third was the charm. :D

AMNIOCENTESIS DONE

Baby is 19 weeks with 3 days right now. Here's a picture of baby after the amnio:

Well, after much debate, hubby convinced me to do the amniocentesis. It is true, it is better to know if there is something we should know and not to worry about a percentage that can apply to anything (like falling in the tub, for example). So... went to the date on Monday and the amnio was done. Less painful than I thought but quite bothersome. It did gave me fever afterwards ( I always must have something, right?).

OB/GYN clinic date on Tuesday. Baby quietly sleeping but heart beating. The next appointment was changed to 3 weeks, and met a stem cells specialist that definitively encouraged doing the cord blood and placenta banking if new baby is SMA free (so it was a good idea to actually do the amnio after all, we didn't thought of this). The doctor let me know that when results arrive is that we should make the decision, and then they have to train the staff for doing this as they haven't done it in the hospital (I found it odd, but it is a trauma center after all). The stem cell lady wants to be updated on whatever we find that is real about SMA treatment outside US, she emphasizes bewaring of hoaxes (which we already know).

Next date is on Friday, for an in-dept sonogram.

Right now I'm sick, the weather changes are too much. There is snow outside, and I can't breathe well... sinus killing me, sore throat, fever... It sucks. I keep wishing for sunny beach days...

A New Mage in Our Family

Yes, the little mage will have a new sibling and so... a new blogging space appears! Who is the new mage? Hopefully we will get to know soon. In the meantime, here I shall write about what is going on with... it?

FIRST PICTURE 11/16/2009
Here's the first picture (sonogram) of our newest addition to our family, at 7 weeks:

This little entity of chaos has been making itself present by endless nightmarish nausea, draining every bit of energy and driving doctors nuts with its continuity of what if spells. :P What this all means? Well, mainly that mommy is a high risk pregnancy test rat, and so doctors of all kinds have been probing her for illnesses that... really, are NOT there. Guess being 36 makes mommy a... mummy? The big concern is the 25% chance of the new baby having SMA, but we are hopeful for the oppossite. Whatever happens, it will be loved no matter what, just like big sister Deirdre.

SECOND PICTURE 1/05/2010
Well, the Three Kings delivered the certain news through this new sonogram:

So far we have thought of two names: If it's a boy: Lucian Salvatore. If it's a girl: Callisto Beatriz or Callisto Angelique or Callisto Victoria...

It's been as hard as Deedee's pregnancy, in terms of the high control of diet so the blood sugar stays at bay. But here doctors are completely insane. They want my sugar between 80-110. I test myself 5 times a day to that purpose. At least the nutritionist was very happy with the way I eat, and very surprised that I DO EAT A BIG AMOUNT OF VEGGIES. So the main change was basically no mofongo every week... Can't have rice (not a big deal, I hate rice), controlled beans and corn... Meat is no problem, veggies are no problem... And thank goodness for sugar free Cool Whip and Jell-o.

I wish that we were back in Puerto Rico. This place is just too cold. I feel cold in my bones. Being 20 degrees, adding windchill to that, is NOT funny. But, we are stuck here for a bit longer... Hopefully we will be able to move to Florida sometime in the future. We know that PR is out of reach until Medicaid and doctors make sense... or until I have millions so I can have a private jet for emergency outings to take Deedee to the right professionals... It's a shame. The island has it all... A big shame that they don't open their eyes and minds to the Non-Invasive ways. Tracheostomy should not be the only option, period.

So... Waiting to see what happens next. On December I had a fall thanks to slipping in the snow, and ever since I have continuous headaches... Migraine every day. Can't do much about it, although I do have a neurologist appointment for April... but must wait after birth for an MRI...

Geneticist is pushing the "doing the amniocentesis" issue, and although I said yes... after a failed attempt last week I feel I should not do it. Why risk the fetus when after birth the baby can be tested for SMA? We are still gathering information about it, as I want to be certain of things. The new amnio date is on Feb 8th... so I have one more week to decide what to do.

And so, I visit the OB/GYN clinic weekly, as they have me closely monitored. Between my doctor appointments and Deedee's appointments we have quite a full schedule! I'm tired all the time, and get a bit sad as it is only daddy, Deedee and me... And it is all overwhelming. The high stress that we already have is increased by debt collectors and by uncertainty of what are we going to do in the big picture. But... The show goes on. And this new mage has a big task ahead!

I'm looking for the blood cord banking and placenta banking, as we HAVE to do this... For Deedee, for the new baby, and even for us. We need to keep stem cells as they are the newest alternative for treatment and hope, and we also know it is a pricey option... Another thing to add to the stress... but it must be done.

And that is the state of our union...

May God keep sending us blessings and miracles.