Tuesday, February 5, 2013

Time doesnt stand still...

Its been a month since i last held my little girl. I don't think this whole in my heart will ever fill again.
I miss her so.

i've been racking my brain going over every little thing i did or didn't do and honestly for all the guilt i feel nothing will ever answer the million dollar question....Why did my daughter die?

I have new doctors and a new perspective. Trying out eastern medicine, hell anything since nothing i was doing prior worked for her.
adding on a slew of supplements that i'm hoping will finally address the MTHFR issue the way it is mean to be handled.
I'm not going to repost everything that is readily available to read over at MTHFR.net and there is alot...trust me i've spent countless nights reading into the wee hours of the night.

but here is the most important facts from Dr. Ben
There is no doubt that MTHFR and recurrent pregnancy loss are linked. (read more)

Think of it this way:

Let's say the way we process Folic Acid is like gears in a clock. If you take Folic Acid its basically like we are jamming up the gears that work in our body. If our gears get all jammed up and aren't moving then we can't even make proper use of L-methylfolate. Or as Sterling describes it: like pouring grease down a drain, it eventually clogs up.

Taking L-methylfolate keeps our gears moving and our drain unclogged.

Methylcobalamin VS Cyanocobalamin:

Why should we avoid Cyanocobalamin? Its so widely available and so cheap!

#1. It is derived from Cyanide
#2. 80% of the population cannot absorb it (not just those with MTHFR)
#3. It is cheap because it is yet another product in our country that is mass produced. Easily mass produced products are NOT quality products. They are mass produced at any cost so the companies can make a profit. (Sure I sound like a conspiracy theorist, but take a look at the documentary "Food Inc") We are a society that wants it and wants it now.

To sum it up. Why NOT take Methylcobalamin? We're just saving our bodies the extra processing by taking the bioavailable form.

after reading this and this , i brought all my new info to my Dr. and we came up with a plan.With that said this is what my new protocol is going to be:

This is what my Dr and I came up with for myself.
Please research and more importantly talk to your doctor about starting new supplements.

Wednesday, January 9, 2013

weathering this storm again

I know i have neglected this blog for some time now. in all honestly I'm not sure anyone is still reading it or checking back, but that was not the reason i started it in the first place. This was a place for me to come an unleash my thoughts, ideas, plans, heartache , sorrow and more.
I was actually planning to come update shortly after the new year with some pretty awesome news. but let me back track and put you up to speed as where we are.
Please be warned there are some descriptions here that some may not want to know or read abut. just be warned.
Since last March my mom was granted the last "stamp" she needed to come back into the USA. amazing news, what wasn't so amazing was that she had just gone to the ER in Costa Rica and had been told she had a tear in her descending aorta, needed surgery and they wouldn't do it. so they basically told her to enjoy her last months with her family and do anything she wanted.
I refused to accept that diagnosis and started searching for any specialist here in NY that would do a consultation and maybe give us some hope.
What i found was an angel. the Chief of surgery at bellvue hospital agreed to see her and once he did he also agreed to perform the surgery which YES was risky but not impossible. He thinks they told her that in CR because they were scared they wouldn't be able to do it right and would indeed end up loosing her on their table. they did not want that on their hands so they sent her away.
fast forward to end of April and she had her surgery. afterwards the Dr. told us that it was a "nasty aorta" but that he was confident she would make a good recovery.
She was in rehab for therapy regain strength for almost a month.
We celebrated mothers day with her at the center and about 2 weeks later she went home.
It has been a long road but the pain from the incision is gone, her nerves are healed, and other than closely monitoring her coumadin levels, all she is left with was a severed vocal cord which she is now awaiting surgery for. I say surgery but its not invasive.
Around the summer we decided that we needed some family time and planned a last minute trip to Disney world. 10 glorious day in late September. We would enjoy mickeys not so scary Halloween party which we always said we wanted to see. this time instead of driving we took the auto train. let me tell you its cheaper than airfare and what a great trip and experience that was.
While in Disney G and I ended up in the ER with a pretty bad stomach bug, after a night of throwing up and more we were sent home.
That night we also found out i had a little something more than a bug. I was pregnant.

complete surprise and joy and then worry set in.
we enjoyed the rest of our trip with obviously limited rides for me and just sips during the food and wine festival.

We came home and made appointments for first visits.
I was 8wks at our first u/s and with baited breath i waited to hear the news.
and it was good news. everything looked great, measurements were right on track.
our 10 week appointment was the same all around perfect. we did the nst test and then the first trimester screen, we also opted to do genetic testing on us just to rule out anything.
We were told the results would be in by the time we came back for our 16 week u/s.
That visit was the week of thanksgiving.
Fast forward to dec 27th.
I had been worrying for a about a week because we have a doppler at home and when i would get antsy or bored or needy, pretty much every day while G napped i would listen to that beautiful sound of babies heartbeat. but that week i would see the hb number pop up on the screen 165, 147, 162 but didn't actually hear the sound. Michael would try to reassure me saying if something was wrong the numbers wouldn't show. i nodded my head but it was bugging me.
We were the only ones in the waiting room, when the geneticist came over and told us the genetiic and first tri screen were perfect numbers, no translocations, no thing genetic that would be causing my previous losses. no reason to worry about this pg.
we went back to the room and got all set up. the tech put the wand on my belly and immediately i knew our baby was gone. last u/s it was bouncing all over the place and today it was still, no movement nothing, i didn't even notice the flicker from the heart was also gone. i just focused on the arms being completely still.
she asked me to turn on my side and excused herself. i looked at M and started crying he tried again to reassure me but he knew it too.
Dr. L walked in tried the wand again and looking completely perplexed he said "I'm sorry baby doesn't have a heartbeat, i don't know what happened. baby measures 15wk 4days. you are closer to 17wks...i just don't know or understand"
i asked if they could tell the sex...it was a little girl. i had lost my daughter.
Rachel came back in and i vaguely remember her telling me my options since i was further along. D&E or induction.
the next few days were a blur and constant fight because i chose to induce. i wanted the chance to hold my daughter, see her, say goodbye. I didn't want the "easy way" as my regular ob suggested. yes it may be easier but emotionally i could never live with myself if i chose that, knowing what a D&E entails,. My baby, my daughter deserved more than to be sent to pathology labeled as "tissue" or "product of conception"
After calling around many places we found a dr and hospital that was willing to honor our wishes. We had to meet the Dr. on monday.
We spent the weekend in a blur. i kept talking to her because she was still with me.
We met the Dr. on monday and he was sympathetic and asked us our history. the he proceeded to explain the procedure and i stopped him and said" we want to be induced that was the reason for meeting with you" he had no idea, nothing had been noted in my chart and he was under the impression i was getting a D&E. he shook his head and said "may i ask why you want to go that route?" i started crying and explained my reasons, my beliefs waiting for him to say no and being left with no choice.
finally he just looked at me and said" if that is want you want then i will honor your request" he also said that he wished it had been noted because he wouldn't have made me wait so ling. he asked when we wanted to do this. so we agreed thursday check in would be better so that the boys could stay with my inlaws.
we went home. it was new years eve.
Thursday came and we were at the hospital by 9am. we did the check in and questions, why are you here, any allergies, ect.
then we were told there was a major surgery going on so it would be a couple of hours at least before the could even start the iv, let alone the medication to get things going.
The Dr finally came in and explained that they would do a max of 6 doses that if nothing happened by then they would do the surgery. she said that her goal was to take her time because she wanted everything to come out. but that its common that you deliver the baby and the placenta stays. if they cant get it out then they have to do surgery.
all the fun facts.
it was along wait but i got my first does of Misoprostol around 12:30pm. nothing really happened and they administered the second dose around 4:30, again not much happened some slight cramping but nothing major.
around 730 the contractions picked up and they were painful but manageable. my parents called that they were on their way. Michael convinced me to get some pain meds. i hesitated but agreed, more for my mom because i didn't want her to feel helpless.
around 8pm they gave me the third does.
by 9:30 the contractions were getting pretty regular and the morphine was not working as well., the nurse asked if i wanted more. and i declined.
Call it masochistic, or sadistic or whatever you want to call it, but in my mind i wanted , i needed my body to hurt as much as my soul, my spirit my entire being was hurting at loosing my daughter.
it was pretty bad until my water broke then it was like the pain was never there.
at that point i held on to my husband and sobbed, shaking,  telling him i wasn't ready to let her go, i didn't want her outside of me. its crazy but i felt like i could somehow still protect her while in my womb.
The nurse administered some ativan to help me relax. i hate that drug because after that everything was a blur. i knew what was happening but it was like an out of body experience.
at one point i felt like a pop and the something came out, Michael wouldn't let me see and the nurse mumbled something reached down and the walked out. Next thing i know she was back with the blanket i had made our daughter and she handed her to me.
My daughter, my baby girl, my princess Kiara was born at 11:36pm Jan 3 2013.
seems like we have a thing for January babies.
she was perfect. so tiny but perfect. long fingers with little fingernails. her toes were so tiny. perfect little ears formed and the cutest little button nose. she even had a little pout.
I poured over every inch of her taking her all in inspecting her and not seeing anything that would indicate to me why she had passed.
we went back and forth holding her talking to her, telling her about her brothers and all the dreams we had for her. how much we love her and how dearly we will miss her.
My biggest regret was that i didn't hold her all night. That it will never feel like i held her enough. or kissed her enough.
I was given pitocin because the placenta was not moving. they tried dislodging it manually and yes even with all the drugs it was painful. i remember them saying something about giving another hour then prepping for surgery.
then this nurse who looked to be all business came in and another one took Kiara and she said "we need to do this but you need to help me"
she had me hold my legs and push while she tried to gently pull out the placenta. forceps were brought in at some point and more pulling and pushing. finally around 4:30am it was out. they did a quick u/s to confirm everything was out. and then prepped the placenta to be sent to pathology for further testing.
i aksed for my daughter back and then held her some more before having to give her back. The nurse that came in was a doll and said she had managed to have her sent to the morgue instead of pathology since things get lost there.
we were discharged and sent home with nothing but a little box and my baby's blanket.
Now came with trying to figure out funeral arrangements. initially we were given 2 choices burial or cremation. The funeral home told us that cremation was $150 crematory fee and $900 for burial, church fees. They would not charge us anything because it was their policy to not further knock down parents going through this process. We chose to do cremation since we are not sure that we are staying put in NY. only to find out that because she is so little the crematory cannot gurantee that we would get anything back.
So we went with our only option, again t be met with the church opposing to do it because the hospital didnt do a record of her birth. (they are not obligated to do anything before 20 weeks) and they would not bury her without this paper.
The funeral home made some calla nd the deacon from another parish stepped up to the plate agreed to do the burial, services and whatnot and for no charge. its not even about the money but if you cant count on the church in your time of need then what?

My inlaws went to the church to question the priest who had no idea what they were talking about. turns out suprise suprise its all politics and the commitie that handles burial were the ones that made up that rule oh and they only charge $550.
The girl at the funeral home later got a call from the comittee demanding to know who had agreed to do this for us to which her reply was "none of your business its someone who decided to step up and do the right thing for the right reasons, not for money"
looking back we have had many angels on our side during this whole trying process.

the doctor, this nurse and eventually the deacon.
Its been a week and tomorrow is Kiara's funeral. I'm not sure how i will handle that because the finality of it is too much.



Wednesday, March 28, 2012


anyone that know what pinterest is knows how addicting it is and how quickly your to-do list can escalate.
my sewing to-do list had about 5 projects, i think i add about 2 every day since discovering pinterest, needless to say i have many projects and an equally growing collection of fabric.
well i've decided to stop pinning at least not as much and start sewing.
And so from this polyvore pic:

Effortlessly Chic

came these two creations...

my version of the shirt

paired with the peach cardi

another view

not to shabby huh?

I also made this shirt

its way long and could probably double as a dress, so i'm going to shorten it since it wasn't really the look i was going for.
Also i have to say that the rectangle width seems a bit too much on my frame, so next time i'm going to make it less. Worth noting also my length on this is 24" and still way log.
 close up of the bow detail

following this tutorial from this pin

next up is this dress:
i Love from VS

going to try it using this tutorial

and this shirt too
and this one
oh and maybe this one...i love the whole look

i also have another shirt i made using this tutorial but forgot to take pics of it

so i guess that gives a glimpse of my sewing to-do list that helps keep my mind busy AND productive.