Wednesday, August 29, 2012

New milestones, new goals.

Why, Hello their fellow bloggers. It sure has been a while, As usual :)

September is almost here and my birthday is right around the corner, yikes. I'm going to be....27? I sure don't feel like it. I feel like an ancient soul.

In these last couple of weeks I have made a goal for myself . To hit my 27th birthday in better health then I was when I was a  teenager. Quite a challenge. Yes my body has some stretch marks and battle wounds from having two kids but weight wise I am now back at 115lbs, my same weight when I was a teenager. I was quite proud of myself to reach this weight with out working out or anything (seriously nursing ROCKS!) however I want to get toned and just be healthy. Well that's where I'm at with myself.

In another subject I feel like I have reached another point in my grieving. I am now able to enjoy happy moments and not feel guilty. yes sometimes the guilt does appear but no where near where it was at the start. However I have also noticed something new.....Jealousy. I see Joshy's fellow preemies starting pre-school and reaching new milestones and i feel jealous. I had never felt that before. Not sure why it is shown up now.

As Joshy's birthday draws nearer I feel myself occupying my time to keep me from allowing myself to feel, if that makes any sense. When I let my thought's take over I go through everything leading up to his birthday and just breakdown. It was a hard road just to get to the NICU. I mean the NICU was our goal, the Dr's didn't even think josh would be born and when he reached the 24w mark and still kept cooking in borrowed time we knew he would spend a while in the NICU, but in our head he would be OK......sigh.

Moving on, September 7th me and Jonathan are going to a linkin park concert. Jonathan's favorite band. That was my gift to him for his birthday. He kept saying how amazing it would be for them to play the song 'with you' in their set. That song is one of Joshy's song and he listen's to it all the time and guess what? It's part of their set! So exactly one month before Joshy's birthday Sept 7 we get to listen to one of his songs played live. I entered Jonathan in a bunch of contest to try to win him Meet & greet passes to the band. We are keeping our fingers crossed. How great would that be! 

In Natty news, she is doing awesome! She is seriously the greatest little girl & I have no doubt in my mind her brother choose her for us. She is smart and sassy and just a total ham. We wake up every morning thinking she can't get any cuter but lo and be hold she wakes up cuter lol. I will post recent pictures when I get a chance but for now just wanted to share this funny video I made of her. As of this month she now can say, mama, dadda, pappa, Hi, Bye, Gracias (thank you in spanish), Mas (more in spanish) Juice and give kisses and blow kisses. She babbles a bunch of other stuff but really I have no idea what she's saying but she really wants to talk and communicate. She's in the climbing stage and is our official new monkey to the family. Her favorite things are the iPad. Oh how she loves that thing. She knows how to unlock it, which Apps to open, how to start netflix, how to navigate around the apps, open and close them and I am very proud to announce that with out any pressure from me, her FAVORITE app is the Disneyland app. Oh how proud I am :)



Monday, July 2, 2012

Hello there








Why hello there.

My hasn't it been a LONG time since I last posted. I know I promised myself to blog more often but geez. It's hard to do chasing around a toddler and TRYING to keep the house looking semi neat.

So what's there to update.

Natalia is 15 months old =O what ?! seriously time just flies, i was trying a dress on her that was hanging on her wall that i received as a gift when she born, I remember looking at it and thinking " OMG she's never going to fit into that, it's so HUGE!" well lo and behold this past weekend I took off her wall & thinking it was still going to fit big I tried it on her and it fit *tears* I seriously did cry. Jonathan looked at me like i was crazy but it seriously was a significant moment for me to see her fit into this dress. I look at pictures and see how much she's grown but i guess this dress made that moment real if that makes any sense. Ah I just love her so much. She has entered a new stage now though. She's really showing her personality and her 'attitude' she LOVES grabbing her clothes & pretending to put them on while modeling them. If you say Ooh, Ahh she will smile and do want to show off. She's a little diva.

I remember while i was pregnant and we found out she was a girl I was scared. I am much more of a tomboy that i had no idea how i was going to handle pink & dolls and what have you but I have to say I love having a little girl. There's so much stuff to dress them up in, it seriously is fun. I think i would do extremely well with a boy too, one thing i hate hearing is how women with boys complain that there's no cute stuff for boys. I see TONS of cute stuff for boys. If joshy were here he would be rocking some cute outfits that for sure.

That kind of leads me to my next part of my post.

When i was young I never really thought about how many kids i was going to have when I was older. When I got pregnant with Joshy & when he was born premature me & Jonathan both thought he was going to be our only one. Well Joshy passed away & we both wanted & longed to have kids so along came natty. Well as natty gets older I think about If she will be our only living child. I have discussed it with Jonathan & we have one thing in common we for sure are not having any more kids within the next 3-4 years. Maybe after that but who know. He has expressed that he does want one more child, sometimes i do too. I think about how lonely it would be for natty when she is older and both me & jonathan are gone. She will have no sibling. She has A LOT of cousins that she probably will consider her brother or sister but not a true sibling. Then I think about how much stress comes with a pregnancy. For me, being pregnant with natty was stressful, actually it was VERY stressful. I see how pregnant women say being pregnant is a 'magical time' full of happiness blah blah blah. For me it wasn't. I was consonantly thinking if she was okay in there, if  my placenta was forming correctly, did she have enough cord flow, did she have enough amnio fluid, was everything developing correctly, was the next Dr appt going to be the one where they told me something wasn't right, the list goes ON & ON & ON. As i have been very open here I have depression & anxiety so being pregnant just intensified those feelings. I refused to take medication because I was on zoloft while pregnant with Joshy & wether or not that affected the pregnancy i will never know but I refused to take that risk with Natty. I'm not saying that I didn't have wonderful moment while pregnant with natty because I did. It was great feeling her grow & move but i think what I'm getting at is I will NEVER EVER be able to experience a worry free pregnancy like most women do. I know the million and one things that can go wrong in a pregnancy & because I personally experienced that, that knowledge can not be undone. It is not like I read or someone told  me "ya know, sometimes the placenta doesn't develop right" or " ya know sometimes the umbellical cord dies & the baby can not get enough food & stop growing" If someone told me that I would think about it but it wouldn't have a affect on me because I have no experience with it . I seriously wish I could go back to being naive about pregnancy where all you see is rainbows & butterflies & unicorns. I guess that's why women sometimes don't take prematurity seriously cause they hear about it and see it on t.v but they are naive. Oh to be naive again. So will me & Jonathan have more kids ? who knows, I really have no idea. But if natty & joshy are the only two pregnancies i EVER have then I am blessed either way. Here are some recent pictures of little miss Natalia. I know I haven't posted some in a while. I will try to link up all her recent Youtube video's as well. I know I have been bad about keeping her video's updated

She now was five toofers :) her hair is refusing to grow & from the looks of it is going to be curly. yikes

Her first Horse ride. She enjoyed it.

She loves her pink car. He papa bear got if for her for he birthday
At the lake

Family picture :)



I love this picture, all he wanted was a hug & all she wanted was to get away lol

Monday, May 7, 2012

Vent...

I really wish i didn't only come here to vent but today i really need it. I'll try to end it in a good note.

Where to start.R

Ever since i lost Joshua one thing that i have heard over and over and OVER again is "you have to let him go,you can't keep being sad over him or he won't rest in peace"  I can not begin to explain how much i hate this phrase! I HATE IT ..... uhhh my head is all over the place that i'm trying to gather my thoughts so this post will make some sense.

My family is a very spirtitual family, my mom reads tarot cards and is able to communicate with the dead, my sister the same. When they have masses here at the house i stay upstairs with natty because i know i will hear the famous phrase. if i am a part of the mass. However they always manage to tell me what they think,, That i'm not fully happy but i am so involved with keeping joshy's memory alive ......What is it people WANT? they want me to forgot i had a sun and since i have natty everything is perfect ? OBVIOUSLY  they have never lost a child ........they tell me you have to move on ? REALLY ? did you carry joshy six months in your belly on bedrest going to countless dr.appts with hope my son would come home, Did they spend six months in the NICU EVERYDAY TILL 12 OR 1 learning all the nicu terms and praying that your son would come home.

where i am gettting at is what you mean by move on ??? pretend nothing happened if it wasn't for joshy natty would not be here,. He is a part of my/our life  and will be forever ! you can not tell me to just let him go!! HE'S MY SON, HE'S MY FIRST BORN HE'S MY BABY! HE'S MY JOSHUA!!

I really hate it that sometimes people tell you have a daughter, she's BEAUTIFUL, smart, she's funny, why do you still think about joshy, you have natty here you should concentrate on her, I FUCKING DO!

NO body has any idea what its like to have to wake up or go to bed  and your last thoughts are your dead son. not because you can't let him go but because he's a part of you forever ! i WILL NEVER EVER NEVER not talk about him, because of him i now realize what i want to do with my life. please don't tell me i'm hurting natty by not letting him go. how in the world is that happening, natty is the light of my life, she has manged to somehow mend my broken heart and allowed me to smile, laugh, ENJOY, and not feel guilty., If me talking about joshua, or everything i do in his name is a  problem to you then just don't pay attention, look away or change the subject i just want to make this clear '

I will never stop talking about him, or making donations in his honor or walking in his honor by doing that am i not let him rest in peace ? i don't get it!!!!!!!!!!!!! and 'm fucking tired of it SERIOUSLY I HAVE HAD IT !  Do you want to talk to me about my son and learn about him LETS TALK!!!! but do you want to judge me about how i do all these things to keep his memory alive ? then FUCK OFF!!!!!! 

I PRAY AND HOPE YOU WILL NEVER KNOW WHAT IT'S LIKE TO LOSE A SON OR DAUGHTER BECAUSE THEN YOU WILL GET IT! 

Wednesday, March 21, 2012

Countdown

It's starting....

The countdown to the day. The memories leading up to the day. How everything was going so well and then just took a turn for the worst. As i wrote in the last post natty's first birthday was keeping me going but now that everything is calm is when i have time to think and remember. You know it's weird. I look at pictures and time has eased some pain, it hasn't healed, who ever said time heals wounds was obviously talking about other type of wounds but not about child loss. Some things have become easier but some are just as they were. He's still the first thing i think about when i wake up and the last thing i think about before i go to sleep.

Everyone has been complaining about the timeline on Facebook, I being one of them but the timeline has grown on me. I looked back at all the post i did during the month of march in 2010. There they are a reminder that we were so close a reminder of a life i didn't ask for but accepted and wanted so bad.

March 20,2010 
jonathan just called to see if our car was ready from getting it's oil changed, first thing he says is "hi can i be transfered to baby castillo" lol we've been in the nicu to long.

March 24,2010
 with my joshua doing alot better , i would like to ask everyone to pray for the rest of the babies in the NICU,especially one who is in very very critical condition may god heal her.

March 24,2010 
 im so bored.....called joshy he's asleep. bored bored

March 24,2010
  what the heck does the phrase "the business" mean, im going to start using it though for example. joshy getting extabated tomorrow is the business ! (yah ???)

March 29,2010
  here we go again, back down..........what happend joshy ? prayers and positive thoughts please.

March 30,2010
  as all of you know josh has had a rough5almost6months&,today the dr tells me&jonathan that joshua has nemonia (sorry about spelling)&his body has gone through so much theyre not sure if he'll make it, she said she is not optomistic &it's up to him, he is on maximun vent high frequency support and on all possible meds. please god, save my little man give him the strength to make it through the next 24 hours.

and then we move on to April. April the month. Here i sit. writing looking back and can remember each and every post i wrote during that time.

Life seems to being moving forward but yet here is sit re-living the past, wishing i could rel live the past. How i long to hold my sweet boy in my arms again. How i long to be able to look into those eyes that had wisdom beyond their years. How i long to have my son. How i long to have seen this blog be a different type of blog, a blog of hope and triumph for other preemie family's instead i see it being a blog of grief and hope yes, hope that life doesn't end and that you can somehow continue to live through the pain.

But if that's the road my life would of taken if joshy was still here, natty wouldn't be here and i can't imagine my life without her...........

Just for warning the readers who read my blog the coming post aside from my big post about natty's first birthday will be pretty depressing. Just me using this outlet i have to write and express my feelings that i am not able to express with no one else. except my good friend. gateway.

Joshy- You have no idea how much i miss you. I look at little boys your age and think about what you would be like, what cartoons shows would you like watching, what would be your favorite food. What you be more closer to your dad by now because he would be playing sports with you and doing boyish things, or would you be closer to me ?  What would your voice sound like ? Who would you look like more ? me or your dad ? I know your around. I feel you around but to have your here is a wish i know will never come true. But boy how do i wish that. I miss you. Plain and simple. I long to hold you, to smell you, to brush you hair out of your face. Although i hate the way things happened i' have said it once and i'll say it once again. I would do it all over. I am proud to be your mother. What a privilege it was to be able to share you with the world. To be chosen to carry you and be called your mom. My joshy. 

Tuesday, March 13, 2012

Rain on my parade

So the forecast calls for rain on Sunday. Natty's first birthday.

blah ! 

This takes the term "rain on my parade" to another level.  Not only will it be raining but natty seemed to be developing a little cough today and i had to go to the Dr today because i've had a red eye for the past three days and it wasn't getting better. Diagnosis- the starting of a small infection. *sigh*

however after much moping around the past two days about the storm on Sunday i am going with the flow and saying bring it. So it will rain, so we probably won't have the jumper and slide and everyone will have to be inside, and some people probably won't show up because of the rain, i will celebrate her birthday and celebrate her. No rain will ruin the celebration that day.

Maybe it will even be symbolic. After the rain comes a rainbow. How cool would it be for a actual rainbow to pop up on my rainbow's birthday. pretty awesome. Yup i'll be a optimist as usual and look at it that way. =)

But it would be equally awesome for no rain too! Me and Jonathan even send a special request to our special little angel to talk to God and ask him to move the storm a little faster. Like i said though whatever the weather the day will be celebrated and awesome.

Grief, trigger

Triggers. Oh how i hate you. Grief you are equally despised by me.

Today i have been emotional. Actually i have been emotional starting since last week. I've been in full party planning mode and keeping myself busy. Go, go, go has been me this past month.

I can attribute my emotional side coming out because well, my baby girl is turning one in less then a week. Geez when they say time flies i had no idea. I can still remember bringing her home the first night and her crying while me and Jonathan frantically changed her diaper, tried putting her to sleep, calling my mom for back up and seriously considering taking her to the hospital something must be wrong we thought, of course nothing was wrong though she was just being a newborn. Now here we are almost a year later and chasing around a cruising baby. My has she grown. These past two weeks she has got three teeth! two on the bottom and one on the top, looks like the other top is making his appearance too. Well we are now in countdown till Sunday and everything is all set (almost) and i have had time to slow down and think about joshy's angelversary coming up next month. It's been on my head, the date April 22nd, it's always there but this month i had a reason to block it out, planning natty's birthday party, but things are starting to calm down and so with that come the thoughts.

"Two years ago this week i was holding joshy" ....."Two years ago today, i was ......"

We went to party city two weeks ago. I realized i hadn't been their since going to shop for joshy's first birthday balloons and decorations for his grave site. It actually didn't hit me till we were paying for the items and i noticed my self asking the lady how much to pre order some 1st birthday balloons, here i was a year after with my rainbow asking for 1st birthday balloons for her.

Triggers. They come out of now where. What's worse is the triggers that you don't see coming, i mean there's the obvious ones such as seeing a story about a preemie on t.v, hearing someone call their son named joshua at a store, passing by children's hospital on the freeway those are triggers you know.

But i'm talking about the one's that creep up on you, the ones that when your having a good day come at you and remind you
"na uh dear remember me" I hate them.

Another thing i hate......jealousy. Yes me, the one with a healthy, perfectly adorable, just perfect daughter. Jealous of others and their baby boy's. I know this will never go away, i know it wont ever stop stinging when i see joshy's cousin (his age) playing and let my head wonder what would joshy be doing.

I seriously hate it.

well here we are a week before natalia's first birthday and i should be happy go lucky instead im emotional because it's it's her first birthday but her big brother wont be there. He'll be there in spirit i know that much, And  of course so will 'monkey josh' too but it's not the same. I feel guilty for even feeling this way. this should be all about natty but everything is all related.

I think i wrote about this last time, we haven't been able to go visit joshy because jonathan was sick. well we passed by the cemetery on Sunday and we couldn't go see him. I had this knot in my tummy that not only did i want to go see him but i wanted to take him home with us!

YES i know that sounds CRAZY but i am being serious i really thought lets go and dig him up and take him home......

I'm losing my mind guys......that's what grief and triggers will do. they will make you think your crazy.

After all the craziest part of this is, to YOU this seems normal, no only normal but DOABLE.

..........sigh...........

Well now that things are starting to calm and I GOT MY NEW BATTERY whoot whoot i will be posting more. and this week i will be posting my "dear natalia" post my letter to my baby girl on her first birthday for her to read when she is old enough. ......i was going to do a photobomb but i think i will wait. I will post one picture of natty and her daddy. OH for anyone who was wondering how Jonathan is doing, He is doing much much better!! not only has he lost 31lbs (hubba hubba lol) but he is eating completely healthy and feeling much more confident about himself. . yay jonathan =)

These two make my life worth living     

wanted to share Natalia's Invitations 

Rainbow theme 1st birthday

The Back of the card. Our Rainbow baby

Wednesday, February 29, 2012

The last days,,,,,

I have wanted to post how i experienced joshy's last two day's but every time i go to write about it i stop half way.

Well i have decided to write even it all down this is what happened as i remember.....

On April 20th we arrived at the NICU (me & jonathan) excited to what was to come and what we thought was the last weeks we would be spending in the NICU.  We arrived that day ready to learn how to put his NJ tube in.

The day prior we had just had a sit down conference with joshua's NEO, surgeon, his primary nurse, & social worker to discuss joshy's plan. It had been six months and after months of waiting we finally heard the words we had longed to hear "Lets discuss discharge" Was this really happening ? the light at the end of the tunnel ! He was coming HOME! He was on pump feeds and still on oxygen and would have to go home on those but that was a piece of cake! We would be bringing our boy home and that's all that mattered.

As usual we walked into the NICU camera at hand ready to take some pictures of our sweet monkey.

His primary nurse had just finished giving him a bath and was getting him all dressed. He wasn't happy at all. His cry, witch didn't sound anything like a "normal" babies cry was heartbreaking. Because he had spend so much time off and on the vent, his tracheomalicia & strider his vocal cords had become damaged. His "voice" sounded much different then what i remembered the last time i had heard his "voice". His nurse finished drying him off and dressing him but he would not settle down. She handed him to me and i finally got him to calm down. He wasn't crying but whimpering, i sang to him and held him tight. I really needed to go the restroom so i handed him over to jonathan, ran to the restroom and came back to joshy sating in the low 80's they uped his oxygen and he came back up a bit but was still sating low. She bumped him up as much as he can i can't recall the how many liters he was on but he was on maximum amount of litters. Dr. Berrios ( who also happened to be the NEO was his first neo at ALTA BATES) checked him out and asked to put him back on the table. The table is like an open isolette, he was slowly but surely moving backwards. He was starting to run a fever and they started taking cultures, no more feeds, and possibility of getting him back on the vent. ALL this in the matter of hours.

seriously WHAT THE FUCK happened ? my son was fine, he was getting ready to come home, nobody that was sick (me nor jonathan) had come to visit him. He was FINE just yesterday, we were supposed to be learning how to care for him at home, how can they be discussing putting him on vent ? ........Something was wrong, something was up and i had this gut feeling this was IT. My son was going to pull through or.....

We stayed there as late as we could he fever finally broke and non of his cultures had grown anything. Based on his X-rays they were suspecting pneumonia, piece of cake! my son had beat that before he we would beat this too. We left and told our primary to call us in case ANYTHING out of his normal happened .

Jonathan left to work and i left home. As soon as i was walking up the stairs to our condo i got the call i knew i would be getting, It was Julia the Fellow and she informed joshy wasn't doing so great, he was back on vent but soon would be put back on jet vet. They weren't sure what was going on but so far they had it undercontrol. I told her should i leave right now to be with him ? she said "No yesenia, rest, i PROMISE to call you if there's change of plans:" this was around 9 i called once more before going to bed and his nurse told me there really was no change, told me if i wanted to call 80 times more in the night that was okay, she was his only nurse for the night,

*RED LIGHT, RED LIGHT* 
babies who have just ONE nurse for them is usually because they are extremely sick.
 
I called jonathan and told him what was going on, he told me try to get some sleep when i get home around 1:30AM we'll head over there so just rest, We hung up but i couldn't settle down something was happening with joshy i  COULD FEEL IT ! sure enough 30 mins passed by and it was no longer his primamry calling me but julia. I will never  EVER EVER forgot our conversation

Julia : Yesenia, Hi .....do you think you and jonathan can come to the hospital right now ?
ME : Of course Julia, Whats going on, whats wrong with josh ?
Julia : When you get down here we'll talk  ----------end of converstation

I have no idea how i got ready so fast, I called jonathan and told him they needed us at the hospital ASAP to call his mom and dad and my sister and brother in law would be leaving with me and my mom in 15 mins.

During the care ride my step dad in our car and my sister in hers drove so fast. My head was blank my heart heavy. I knew was julia wanted, i knew what she was going to tell me. I didnt want to hear it. My son was a a survivor he was going to get through this DID THEY NOT KNOW HIM! DID THEY NOT KNOW HIS SPIRIT WAS NOTHING TO MESS HIM! HE WAS STUBBORN LIKE HIS MOMMA.

Me , Mom, Stepdad, sister her husband and my papa bear all came with me into the NICU. It was 11:30pm and jonathan would be out from work in just 30 mins. We all walked over to josh and,,,,,,,,,,,,,,,it was josh. he was 10x more then i remember him just this past morning. he felt cold. The dr informed me they actually had just had to give him adrenaline shots and actually had to use the crash cart on him. He had flat lined and she had to do chest to chest compression just before we got there.

I was speech less, i heard everything everyone was saying but i couldn't / didn't want to  comprehend  what they were telling me. They gave me a couple of minutes to touch him and talk to him i mostly cried while looking at the screen.

Then julia and this fellow i had never seen before asked me if we could go to the office to talk. I told her Jonathan is still not here, she said we'll go over this with him but want to make sure we let you know what is going on and what the plan is, This is how it went,

Me & Tania (my Sister) walked in to a room,
four chairs were facing each other, two to two
Tania and i sat in two and facing us was Julia & the other fellow

Julia started off with this:
 Yesenia two days when we had the meeting about joshy and he was ready to go home we asked you something, your answer to that was you would continue to advocate for your son and give him a fighting chance as long as he wasn't in pain and he was still fighting

Me: yes Julia, that;s correct i said that,

Julia: Yesenia , the time is now. You said you would advocate as long as he wasn't in PAIN . Yesenia ( in a very sad yet serious face) he's in pain, we are just PROLONGING his life. his organs, his kidneys (he hasn't peed in two days) His liver , His edema its all reached the breaking point ALL OF US HERE LOVE JOSHY AND SO WITH A HEAVY HEART I TELL YOU yesenia, you must let him go. Keeping him on the vent and his meds is doing NOTHING he is in pain. We the hospital have decided if he goes into heart failure one more time THERE WILL BE NO INTERVENTION

..............................i didn't know how to react, my legs started shaking, no tears came out. My sister held my leg and asked me WHAT DO YOU WANT YESENIA, i couldn't answer, i couldn't think. The Dr's kept talking and explaining things to tania but i just sat there, my head blank. these people had just crushed my heart, I couldn't move. My sister grabbed me and we walked out to the corridor at that exact moment jonathan was walking towards us, Up till now all he knew was josh wasn't doing good and that is all. i ran to him. I hugged him and told him in his ear

"our son, our joshy, he's dying, he is going to die, they can't do anything. He's going to die:"

he started crying let go of me and banged the walls a bit without saying a word.

then we all went in to see him. Just in that short amount of time our son was no longer looking like our son. the water retention he was holding was amazing,  Jonathan asked permission from the charge nurse how many of his family would be able to come see him and how much time he had left. They told him because of our situation they would make a exception because he didnt't have to much time life. I just sat there next to joshy talking to him to keep fighting but if he was too tired as much as i loved him i wanted him to be free,

In the next couple of house ALOT of jonatha's family arrived, most if not ALL were seeing him for the first time. they all got to talk to him and see him. they spent most of the night there Here is a memory that is IMPRINTED in my memory forever as is by far for me the perfect way joshy could of spend that night. His tia's  ANA, ALEXANDRA,SAMMY,DENISSE , MY SISTER, ME JONATHAN, AND JEREMEY and PLEASE IF I FORGOT YOU FORGIVE ME . As i rocked joshy skin to skin they surrounded me sitting in their chairs and spoke about astrology and lady gaga, and other stuff. This memory is one of my FAVORITE moments ever. IT WAS PERFECT joshy got to hear all his cousins ans aunts.later on my best friend channellla. came and spent the remainder of the night with me while i held josh. we just talked and talked, Joshy just laying on my chest, Hr heart rate great and from what i could tell he was enjoying having them their. Then everyone left and it was just me, joshy and jonathan. One of our favorite primary nurses came back and brought us back a stay awake survival bag. filled with
TWO JUMBO RED BULLS
TWO JUMBO BAGS OF CHIPS
TWO JUMBO BAGS OF CANDY
AND TWO LARGE EXPRESSO

All the nurses expected joshy to pass away that night but NOPE! they kept telling me you can take him of then vent and hold him while he takes his final breathes outside so he can finally feel the sunshine, I felt like they were pressuring me so i just kept brussing the comments off. Then we decided that joshy should be baptized since we knew unless a miracle happened it could be any minute now. He got baptized right on his table, with my sister tania & jeremy as his godparents, surrounded by family, This was probably the scariest part i had experienced till then.

Vicki joshy's FAVORITE primary came back to check on us and see how joshy was, this was her day off. they kept telling me if you dont want to completely take him of the vent you can get him off the jet vent and get him on the normal vent so you can hold him more and then when your ready to go outside to spend your last moments with him he will just be on cunala.

So she switched him over from jet vent to normal vent and handed him to me. In the seconds it took to do that he flatlined and i broke down telling her "its my fault, everything is my fault, my poor baby"
everyone there started crying and sobbing. THEN couple of seconds after his heart started pumping again. He wasnt't ready!! i will never be able to thank vicki for coming out that day ON HER DAY OFF to help me hold josh.  Well this was day two. After two days/nights of no sleep or eating me and jonathan by pleas of the NEO's Nurses, and family decided to go to the hotel room my mom had rented us to "try" to get some sleep. half way into our sleep another fellow calls me and tells me, we just wanted to let you know we have taken joshua off NO because it's really expensive and its not doing anything,,,,,,,,,,,,,,,,,,,,,,,,,,,SERIOUSLY!!! TO EXPENSIVE!!!! i woke up Jonathan and told him we were headed back to the hospital RIGHT NOW! We all got ready and arrived at the hospital i spoke to the fellow and told him that i was completely outraged they were giving up on him and taking medicine away because it too "expensive" and can't be wasted. After my long talk i walked over to joshy who had somehow ballooned even more up. all the water he was retaining was trying to find a way to escape and so when i went to change his diaper--------be warned this is explicit-------
His penis did not look like one, it was large and looked like a ballon. his genital area were all huge and one of his testicles being so big had found a way to release water from the skin and it looked like someone had popped a balloon and water was slowly seeping out. this extreme water retention wasn't only there it was EVERYWHERE, it was at that moment that I as his mom, as his mom who fought for him, who ADVOCATED for him, who LOVED HIM more then life itself,  realized. It's time to let my son be at peace. I called Dr. Berrios and we set a plan. She would allow as many family members to come and spend the last moments with him. They would keep him on the vent and keep him as comfortable as he could be to give me time for me, my mom and sister to drive to babys'rus and pick a new outfit for him. when we came back we would dress him, take him off all meds and we would walk him to the garden outside so he could finally see outside. 

Me, my mom and sister drove as fast as we could to babys'rus. The two of them helping me pick out a outfit. The last time i had picked out a outfit for him two weeks ago he was wearing a 0-3 months clothes. this time two weeks later we were looking for 18-24 month clothes...............yes that is how much water my little man was retaining , I remember a employee coming to ask us if we were looking for an outfit for a special occasion. nobody answered......Here i was looking for the PERFECT out fit so my son could pass away in. No MOTHER SHOULD EVER HAVE TO DO THIS.

we got back to the NICU and so the process started except the clothes didnt fit him!!!!! can you believe it!?? do in order to get him to fit into it, we cute the sides of the polo onesie and taped it back up. Then we put on his first pair of puma little crib shorts, a infant kango hat, and a brand new baby bear blanket. Our nurse told me they were ready it was just on us now to tell them it was time. I really had to go to the bathroom and i asked jonathan to hold joshy, his dad was right there he had never held josh EVER so i insisted yes "yes don alex hold joshy" i waited to make sure hid stats were stable. 5 minutes after him holding seeing as josh's stats were good i told them i would be right back.

I walked into the waiting room which was filled of ESCOBARS lol joshy has a large family and they had all managed to fit in the two room waiting room. I asked them if they knew where my mom and sister were they told me they were in the cafeteria with joshy's aunts. so i went to the restroom and took the elevator to the cafeteria. This whole process from start to finish was about 7 minutes i arrived at the cafeteria and their they were , i sat down took a bit out some chips sammy had and then it happened the moment i WILL NEVER FORGET

The charge nurse ran up to me, she grabbed me and with out saying a word we both started running, we stood in front of the elevator and she nodded her head and whispered this is going to take to long lets take the stairs. There was no need for her to tell me what was going on, I KNEW it was time. IT WAS THEE time, We ran half the flights of stairs when i let go of her hand and started hysterically crying "I CAN'T DO THIS! I CAN'T DO THIS"  "yes you can! she told me, i have seen you all these months you are one of the strongest moms i have ever seen"  She grabbed my hand and we kept running, most of his family had become aware of what was going on and was being let in on the other side of the NICU. She slipt her card through the DR, NURSE entrance and the doors burst open she held my hand and let me to josh. i will NEVER forget the look of one of the mom's that was holding her preeemie. she wasn't crying but her eyes, if her eyes could talk, she felt pitty but there was joy in them, better her them me. that's what those eyes said. i walked over, my father in law Alex was holding joshy. He was blue and cold. I looked up at his STATS and everything was 0 just a second later they actually tutnred off the monitor. Everyone was crying including his NEO's. Alex handed him over to me and i rocked him and told him i loved him, to please come back, not to leave me alone please. i repeated this over and over. 

I don't know why he choose his grandpa to finally go and i have never talked to his grandpa about how he was feeling and if he actally felt joshy take his last breath. I know we'll have this conversation one day. it just hasn't happened.

The rest of what happened is a blur and not sure if its in order.

I know we gave joshy a bath after, i wanted to put the same clothes on him but they were full of blood that kept coming out his nose. so the NICU found some nice clothes and we wrapped him up. First we cut some of his hair and took his footprints and handprints then me and jonathan walked out to the garden and spend some time talking to him/ I told him,

this is what the sky looks like joshy remember i used to talk you about the sky and all the beautiful things i wanted you to see when you finally came home. I showed him the flowers. and enjoyed holding him, outside, no wires, no anything.  


The nurse came back to tell us the rest of our family was waiting in the chaplain. again it was A LOT of family. So much family that was meeting him for the first time.

We spent an hour or so in chaplain with everyone saying prayers saying goodbye and hello.

Finally it was time to go back upstairs to the NICU. They had already put all his toys, clothes, blankets into bags, this was it. We were leaving the NICU. We were leaving the NICU but us with our hearts torn out and my son, my precious son who just one week ago was doing GREAT, my son who was supposed to be leaving WITH US not in a bag, NOT TO A FREEZER .i have no idea how i walked out of that NICU however i remember silently crying and my father in law hugging me we kept walking and then we reach the wall across the elevator and i realized i was probably never going to come back and my son had just died. DIED. my first born baby had just DIED, i lost it. i put my head against the wall and starting sobbing, sobbing like i've never cried before. curling my way down the wall to end up in a fetal position. lightly slamming my fist against the wall and crying "no......why........what am i going to do" my father in law just held me and pulled me back up and braced on to me in a tight embraced hug with my head on his chest while i sobbed, I really have not idea how i got home that night. did jonathan drive ? did we talk ? how did i sleep that night ???????

This was the day that defined my life. I entered a new life. a life i didn't want. I lost my first born, he was six months old and spend his whole entire life in the NICU. I was a NICU MOM, i was a mom, who the fuck was i now ? why the FUCK did this happen to me ? Did my son REALLY just die ? ...............no, no, this is all a fucked up dream, wake me up jonathan, i dont like this dream........................

There you have it. the days's leading up to joshy's death, grammatical errors and all. I will never forget those days leading to THAT day. They are etched on my brain like a tattoo that you would like to get rid of but you know its never going to fade, their will ALWAYS be traces of that tattoo AND this is a good thing. I want traces I WANT THE TATTOO! that's all i have left tattoo's of memories. This tattoo is different no one can see it. only you. only you can. You forget you have it, but its not often it happens. I like my invisible tattoo. Its my reminder, you were loved, you loved, you are strong, you gave birth to a miracle. He will always be with you so what if people don't like your tattoo because it's changed you, SKREW THEM! and yet even though they don't like your tattoo and hate hearing about it they PITY you, and are nice to you, but avoid you, they don't mention your tattoo because they prefer YOU have this tattoo than them. 

We had a BEAUTIFUL crib set up for you at home but instead you will forever lay in your casket......



Saturday, February 18, 2012

Being a full time present mom

I had a dream two nights ago.

In it I was taking natty a bath and for some unexplainable reasoning left the room and came back to find her floating. She was purple and blue and cold so very cold. I hugged her and talked to her and rubbed her arms to try to bring her back to life. After a while of doing this she finally woke up. Then I woke up from my dream, more of a nightmare really crying. Natty was sound asleep .

Since then I have thought about how much I love her,what I would do if anything where to ever happen to her, how much of me is represented by her now. I know what it's like to loose a child.

I have written before how it took me a while to fall in love with her. But now My guard is non exsistant around her. I have allowed myself to envision her future , to plan her future, to have every inch of my body love her in ways that I thought I would maybe never be able to.

To have this dream has shaken my core. I have been rocking her to sleep more, holding her asleep when I could easily lay her in her crib, staring at her and admiring her beauty, how smart she is becoming, what an amazing little girl that her brother sent us.

I had become safe in my feelings, keeping a bit of my paranoid 'I might loose this one too' persona but mostly in the back of head. I know find myself back to that place x10. Thinking about morbid things that can happen and all the dangers that are out in the world that might take her away from me.

I must admit maybe part of this is connected to the fact in just one month. She will be one. My baby girl is on the road to growing up. Much more independent and figuring things out on her own.

But then it goes deeper then that. Whenever I say something about what if anything were to happen to natty Jonathan tells me "nothing is going to happen to her we've suffered enough" I like to believe this is true that somehow that's the way the universe works,

"you my dear lost a child, no way would I take two from you, carry on a happy life"

I wish this was some universal law but we all know that it isn't. In fact most people that have gone through something terrible in their life continue to experience horrible things and we think

"really?! Shouldn't they have a free pass like in monopoly ?"

Wish it worked that way but it doesnt.i have a promise of myself to let my past , the feelings of paranoia affect the way I interact with natty. She deserves me the 100% me not the half assed me because I think "is the day, is the day my happiness will come crashing down AGAIN" this is not to say these thoughts are not in my head, they are, every second but I refuse to let it control me. I can't. My living child deserves to feel me present , to have ME , maybe I little more cautious mom then others but a mom that loves her more then words can describe and a mom that is fully present with her. Losing my first born prepared me to be a better mom. I enjoy every accomplishment a little more, have a little more patience at 3 am when all I want is for my baby girl to go to sleep, I cherish every sticky kiss, I look forward to see what new thing she learned even if that means that new thing is crawling or very soon walking which means I will be a very tired momma.

I've been waiting for you motherhood and I'm going enjoy you! Because it can be taken away at any second.

In the words of a song by eve the. Rapper

"it took a while to get me here and I'm going to take my time"

Monday, February 13, 2012

Blog award


So a while ago my friend Ashley awarded me with a with a "your blog is great award" I hadn't had a chance to one say thank you! And two to respond. If you want to check out her blog click right below. She is fellow preemie mom to an awesome little girl and is currently going through infertility.

Ashley's blog


Now, the rules of the award:

1. Thank the person who gave you the award!

2. List 7 things people may not know about you.

3. Pass the award to 15 other bloggers and notify them as well.

List seven things people may not know

One
I have had a blanket that I sleep with every night and take everywhere with me if I know I'm spending the night. I have had t since I was born but lost it at the hospital when I had natty :( josh used it for a while as well

Two
I hate chocolate ! The taste and smell is disgusting . The only time I was able to eat it was while I was pregnant with josh. I ate a chocolate cupcake that tasted delicious . Tried eating it after that but nope made me sick

Three
I have a couple of black birthmarks on my tongue. Everyone gets freaked out and my mom thought something was wrong with me when she noticed them when I was little but my dr said they're just birth marks.

Four
I love Mongolian beef. I could seriously it that for dinner every night if I could . It's delicious . My mom has a candle/religious shop in San Francisco and two stores down is my favorite chinese restaurant that I've been going to since I was 10 the owner and servers already know my order. Mongolian beef over white rice and a 7up

Five
I am the youngest daughter to both my mom & dad and have one full sister with both. I have a older sister from my mom who I am not close to at all and most of the time when people ask me how many sisters I have I say one. I also have a older brother from my mom who passed away at the age of 24 from drinking to much. My dad has five other daughters and one son from a previous marriage, I have only ever met one of them. I have a younger brother who I grew up with who is really not my brother but my nephew. My sister who was a drug addict gave him up for adoption to my mom when he was a couple months old and we grew up like brother and sister. He is only a year younger then me.

Six
I am very much a tomboy. I prefer being in sweatpants a t shirt and a sweater. I do like dressing up and being girly sometimes but very rarely will you see my nails done as a matter of a fact whenever I'm stressed or nervous I bite my nails. Horrible habit I know! I've been actually trying to slowly re vamp my closet because I'm tired of everyone thinking I'm 16 or 18 years old. When they see me with natty people see me with natty they give me this "aww poor teen mom look" then they find out I'm 26 and I actually have two kids are like "wow I thought you were 17 you look so young!" gets pretty annoying but I guess I should savor my good genes ! :)

Seven
I refuse to go to the circus or to take natty to the circus when she's older. Mainly wringly brothers circus. Jonathan can take her but I refuse to go. I saw a 20/20 article on t.v when I was 15 about how they treat their elephants and it seriously traumatized me and I refuse to pay money for them to continue treating thee animals that way. That and I am terrified of clowns!!!

Well I update this when I get to my laptop later and add the 15 blogs I choose to pass this award too. I can't do it now because I'm on my iPad and I'm being lazy :P

Guilt

I've been feeling pretty craptastic these last couple of weeks because we haven't been able to go visit josh. He's burried in south San Francisco and we live in Antioch which is a good hour and 20 minutes away. Jonathan's still recovering and before that the weather wasn't all that great to be able to take natty.

Some days I feel okay with not going so often to seem him because I seriously feel like he's with me and his site is just where his physical body is at but 'he' is with me. His name plate is in our backyard as well in his special garden so I feel like that's his site as well.

I don't know, I think with his angelversary coming up and everything that happened with Jonathan thid last month I've been thinking about josh and all that happened even more then usual. What really didnt help is this new Facebook timeline and being able to go back and read all the post I would make about how great josh was doing just a week before he passed.

"our little monkey is doing great! I really think he might be home very soon"

How did everything go so wrong.......

Sometimes I'll be playing with natty and imagine josh is somewhere in the house playing as well. I look at the house and see how natty's toys her things have taken over the house and think to myself there should be double these toys and stuff around . I wonder if I'll ever stop imagining ? I know the answer to that and to be honest I don't want to stop.

Saturday, February 11, 2012

Im back

Sigh.

Where have i been ? where to even begin.

During the last two years Jonathan has had problems with his intestines. I have written about it before. It all started while josh was in the NICU and through the past two years he has had to go to the emergency room about four times. Each time the level of pain escalating but always being controlled with antibiotics.

Well a month ago the same symptoms arose and so he called his Dr and they prescribed the usual, pain medication along with a two week dose of antibiotics. A week in he was not getting better and actually got worse, a lot worse, on Saturday Jan 13 he called his Dr again and let him know he was feeling worse, the Dr told him to come down so he could take a look. He could barely walk and was crying from the pain, the Dr saw him and touched his stomach not even a minute into the exam he told him he would have to be admitted and would probably end up with surgery. I seriously thought the Dr was over exaggerating. Sure enough they admitted him and told him his diverticulitis had turned into diverticulosis. They started IV antibiotics but on the third day of no improvement the surgeon decided he needed surgery. He didn't know if he was going to need a ostomy bag to let his gut rest from surgery. He went into surgery not knowing if he was going to come out with a bag or even what the surgery was going to consist of, it was a exploratory lab to see what exactly the found. All this to me sounded familiar WAY to familiar. To make a long story short he ended up having some of his colon removed, no bag, but with a VERY big incision. He spent two weeks in the hospital and is now at home still recovering. He hasn't been able to hold natty in over a month and will be out of work for another month or so recovering. So far he has lost a total of 20lbs.

This whole situation has been draining. Physically and emotionally for me. It all brought me back right back to josh and everything that happened.

I spend the whole two weeks driving back and from the hospital every three hours to nurse natty and spend time with her and then heading back to the hospital to care for Jonathan.

What made this whole ordeal worse was that everything seemed to resemble what happened with josh and his NEC.

It took me back to a very dark place. To see Jonathan crying from the pain, scared and verbally saying all his emotions, how uncomfortable he was and everything else broke my heart for two reasons.

One, who wants to see their partner in pain,
But two this grown man was crying from pain and scared is this what josh would have told me if he could talk ? Jonathan could ask for some more pain med's , josh couldn't all we had to go by was his vital signs.

Within the last month i have learned just how strong my son really was. I always knew he was strong but man, this little boy fought. I can't put into words how extremely proud i am to have been chosen to be his mother. I know i have written this before but this phrase truly has a new meaning to me. He truly is my hero.

In other news around here. Our natty is turning one next month ! I seriously can not wrap my head around how this happened. In these last two weeks she has become this little ball of energy and wants to GO,GO,GO. She does not get tired and babbling her little head off. You will speak to her and she will respond. Of course her response consist of DADDA,MOMMA but i am pretty sure she is having a conversation and speaking her own little english/spanish language. As far as celebrating her birthday, we will be having a big party at her grandma house (jonathan's mom) i must admit as draining as it has been to put everything together and i must also admit i may have gone over board with some stuff for her party, it has been fun. I know she won't remember her party but she will see pictures and know how important she is to us.

lets see what else. Oh of course how could i forget, we will be walking on our very first March of dimes walk this year which i am very excited about because it will be a couple of days after joshy's angelversary. Our team name is

Drumroll..............

"spreading Joshy love"

Well that's about all the updating i can do for now without getting to in depth. I will leave you with some pictures. commence photo bomb NOW =)

Natty and her grandma and grandpa  
She thought this little play cup was her sippy
Playing and starting to make a mess, this is what she does best =P
If i have to run downstairs she will scream her little head off and wait for me in the rails


She gets more beautiful everyday

Boy are we in trouble when she gets older.

Friday, January 6, 2012

Mini post

My peanut will be one in 3 months, seriously!? I'm soaking up every minute with her and even trying to enjoy the tantrums. She will never be this small again.

I have really wanted to post and write but like I wrote before my laptop is still messed up and I really hate using my iPad . I like the feel of the keyboard . I'm using my iPad right now, so here's a quick update.

Whats new ?

Natty is now officially cruising, crawling,and officially getting into trouble ;) she LOVES food, this girl will not turn down a taste of anything. Just today she started waving bye bye.

She is getting so big and I can't believe it. I fall in love with her more everyday, each day i think I can't love her more but I do :)