fear, loss of control, and anger

i used to think i was the most patient person in the world.
then i became a mom and that fact was proven to be false.
i feel with each kid i have to let something else go. simplify a little bit more. let go of certain worldly expectations.
but this one is just a wild step further than any step i've taken before. and this loss of control(control i thought i had:) has caused me to find out more about myself.
i like to know or have some idea of what may happen in the future. with each pregnancy i go into the last trimester visualizing what the birth will be like. this time i can't. i don't know where to begin. and this has caused me to start having anger issues. i've never really dealt with heavy anger. sure i get impatient with the kids. sure i get frustrated with them. but a few times in the past weeks i have lashed out with a hot anger that scares me. scares the kids. afterwards i come to them and apologize and they are so sweet and understanding- it breaks my heart. i tell them that i'll figure it out. that i'll work really hard at not coming down on them so hard in the future. that this is a new thing for me- but they are just so patient with me, it's hard not to see God at work in us.

john michael talbot

"the lord protects the simple ones.
i was helpless, so he saved me.
the lord protects the simple ones,
how precious is the lord!"

dealing with stress

so my stoicism is now getting the worst of me.
my night clenching is back with a fierce vengance. i woke this morning with a swollen face and felt like i hadn't slept at all. the stress is chipping at me from the inside. chris said we should meet at the gym after work and exercise to blow off some steam. what i heard was, "we should meet at the gym and you can go get a massage while i go exercise."
that sounds ALOT better. or maybe both. exercise followed by massage.

truncus arteriosus

i voice recorded the meeting with the heart doctor and i finally listened to it yesterday. there was brought up that i completely forgot about.
i just googled it today and read a bit about it.
so this is what is going on with jedi's heart. on top of this rare heart disease, the one artery that is coming out of the top is pretty small and blood flow is restricted. also, typically there is a branching off of arteries. one branch goes up and toward the brain and neck, then there is a turn, like the handle of an umbrella and the vessel then brings blood to the rest of the body. this vessel that is supposed to be bringing blood to the rest of the body is either not there or VERY small.

need help finding an image

first of all this is a really really poor depiction of a beautiful image my mind keeps going to.

i have seen this picture in a prayer book. i don't know which one. but i really like it and want to know how i can find it. i've tried google images but nothing.
i wonder if anyone out there is gifted in searching could help.
i feel like it would be a nice image to have on a prayer card for jedidiah.

in touch with reality

i can't sleep. for awhile i laid in bed and enjoyed being kicked by jedi.
but then my thoughts went back to our second ultrasound with maternal fetal specialists. our perinatologist, doctor koontz, is an attractive slim blonde woman and is professional, but very worldly. i think it's protocol at most places to offer termination as an option in cases such as ours.
so, back in june while we were at the lakehouse with family, chris and i ducked out for our appointment with dr. koontz. i had a list of questions to ask posted on my phone so i wouldn't forget. they were things like,
-how is the fluid (most trisomy babies come with alot of amniotic fluid)
-how is the brain(last ultrasound was inconclusive)
-how is the heart (again, last ultrasound was inconclusive)
-what does the baby's face look like(i wanted to prepare- the pictures of holoprosencephaly babies online are pretty drastic.)
and finally
-what about the feet and hands?(typically babies with tri13 have skin tag fingers, club foot, rocker bottom foot, etc.)

this list wasn't in order of importance. they were all important to me. these are things i just wanted to know.
so- after the sonographer left, doctor koontz began to tell us what she saw.
this is when we got the news of the devastating holoprosencephaly and tetrology of fallot- both things that i needed to google to begin to understand. so, after telling us these findings and again suggesting the amnio i went to my list of questions and began asking. she handled each question very professionally, i felt, until the last one.
the way she handled the last question completely baffled me.
"also, could we see the hands and the feet?"
she looked at me with a pained look- like compassion in a citrus juicer.
"that's really not important. what i mean is, there are enough other findings that make our diagnosis accurate, that the hands and the feet just don't need to be assessed."
"ok. but i just want to look at them."
she grabbed the wand and almost begrudgingly obliged. all the while pointing out what was wrong.
she then proceeded to encourage me to get a second opinion.
"there are other maternal fetal specialist in atlanta. or perhaps you'd like to travel to another state for a second opinion- there are other mfs offices in other states."
confusing. i just nodded and wondered why she was telling me all these things.
we were almost back to the lakehouse when i asked chris what that was all about.
why was she encouraging second opinions?
"she think's you don't believe her. she doesn't think you are in touch with reality"
my indignation was swept away in a flood of angry hot tears. i don't believe her???
i felt that she expected a different reaction from us. maybe she expected me to melt into a puddle of tears and beg for an abortion. maybe she took our declining an amnio as us burying our heads farther under the sand. maybe she expected chris to be angry and storm out of the room. instead she was faced with concerned parents who were just wanting to take a peak at their baby. to soak in the hands, feet, and face, knowing that these glimpses could be one of a very few that we get of our sweet babe.
i wanted to drive back to that office and tell her just how in touch with reality i was. i wanted to say "i am knitting a blanket that very likely will be my son's death shroud, and all i wanted to see were the hands and feet!"
i have an appointment with them on wednesday that i am highly considering canceling. the last appointment with her went alright. i just don't think i can summon the energy to handle these ultrasounds anymore.

why can't i choose a care provider?

i'm hesitating in making this decision. and i think it has something to do with me trying to freeze time. as if pregnancies only progress toward their end when a care provider has been picked.
another part of me not choosing a care provider is i feel like i'll hurt people's feelings if i don't choose the care provider they think i should have.
the bottom line is- i need a care provider that i can trust. trust is my biggest issue. i don't necessarily need a care provider who is warm and fuzzy. i don't need a care provider that is knife happy or scared of delivering vaginally after a c-section. i don't want a care provider that i have to explain myself or my decisions to.
ideally i'd love to homebirth. but since chris is not on board with that option i need to find a care provider that delivers at either northside atlanta or emory midtown.
why is this so hard?

bone fish

last night, after i had gathered myself together and made a dinner that i didn't want to make chris called and said he was on his way home. i asked if the brave's had already played. affirmative. then why not stop by blockbuster and get a movie?
he didn't feel like it. he'd see me later.
then five minutes later he called again- highly uncharacteristic. he told me to get the kids fed, dressed, and over to my sister's. i told him i'd call her and ask if that was ok. here's the next highly uncharacteristic thing in less than 10 minutes- he said he already called her.
wow.
ok.
so i got them ready-ish and drove them over there. he met me there and we headed out for a date. the first in a LONG time that wouldn't include the third wheel(aka- "the sonographer"). it was much needed. i had been in a funk all day because chris and i hadn't sync'd our thoughts about the cardio consult.
we started out the date talking about everything BUT jedi. the air began to feel heavy to me- like i couldn't bear to bring it up, but i couldn't not talk about it.
i had a little break down in the restaurant, went to the bathroom to collect myself and returned to the table. we then began to talk about the latest news on jedi and what that meant to each of us.
we talked over alot of things, who we want in the room, who we want to be with us afterward, who i might choose to be a care provider, where i might deliver, picking out a cemetery plot, etc.
the waitress finally picked up on the air at the table and stopped trying to chat us up and be jolly. she did her job quickly, quietly, and very unobtrusively.
i was definitely put in my place at one point in the conversation. he brought up that surgery shouldn't be decided against based on fuzzy ultrasound pictures. i asked him what signs he'd be looking for to help us decide whether to proceed with surgery or not. i said, "what's going to change?"
and he looked me square in the eye and said, "i don't know, aren't you the one who is supposed to believe in miracles?"
the man has faith. the man loves jedi so deeply. if ever i doubted that, he erased it with that one comment. and i pray to have even a sliver of the hope that he has.

choosing thomas

this video is touching and i would consider myself lucky to have this chance with jedi- to take him home, and peacefully have him where he belongs before he passes.
thanks to elaine for sharing this video.

today's fetal echo and cardiac consult

i wish i had good news to share, even a little bit. but everything we learned today was grim. there were parts of jedi's heart that even the surgeon couldn't place or recognize. it turns out that both his heart and his brain didn't properly go through the division process- so instead of there being two main vessels branching from the top of the heart, there is only one. we discussed several scenarios and i think the biggest thing i learned in that room was that chris and i aren't exactly on the same page. at least not yet. he's of the belief that we shouldn't decide anything until jedi is born. and i already have an idea of what i want to happen.
chris' heart is in the right place. he sees us merely providing comfort care as essentially giving up. he wants to fight this, to win, to come out on top. he's not one to give up.
but i just see this little boy- who wants to be loved while he's here. loved and let go. not wired up, beeping and blipping, hauled about atlanta in an ambulance, far away from everyone he loves- only to die in a strange room with strange people trying to forestall the inevitable.
i will pray that we come to the same page- whether that be me turning to his page, he turning to mine, or both of us coming to another page altogether. regardless, we were one before jedi. we need to be one for him.

i finally finished!

the baby blanket i started knitting for jedidiah memorial day weekend- the weekend before we learned of jedidiah's trisomy13.


it's pretty big. i just couldn't stop knitting! because crafting and praying goes hand in hand with me, i had to keep going!

the heart of a jedi

the diagram on the left is a healthy heart. the diagram on the right is one similar to the diagram the pediatric cardiologist* drew for us last month.
1- is the pulmonary hypoplasia- the blood flow to the lungs is compromised because of stunted growth in that area.
2- is the VSD- a hole is located between the left and right ventricle
3- is the aortic stenosis- there is a blockage in the aortic valve. the doctor explained it as similar to covering the garden hose with your thumb. it's not completely blocked, but enough to cause the outflow of blood to be at a high velocity. this causes it to balloon on the other side.

so- we go back to sibley heart center- this time to the CHOA(children's health care of atl) egleston campus on wednesday morning. this is the surgery center and we are scheduled to meet with a surgeon and take a tour after our fetal echo. our pediatric cardiologist just wants us to get familiar with the surroundings and the doctors that may be involved.

please cover us in prayer on wednesday. i am praying for a miracle, but we could learn some bad news so- ask for the grace to hear it, understand it, and accept it.

*okay- i have to tell you how fabulous our pediatric cardiologist is. his name is dr. henaro sabino and he works for sibley heart center. he was so engaging and compassionate. he really took his time with us- even after talking with us at length in the scan room he brought us into an office, and proceeded to draw a diagram and answer more questions.
if ANYONE in the atlanta area needs a pediatric cardiologist, i CANNOT recommend him enough.

you aren't the only one

in an effort to reach out to other moms experiencing a trisomy13 pregnancy, i will share thoughts i've had- thoughts i am not proud of but i have a feeling may be normal. i had felt some shame in having these thoughts- i don't entertain them very long because i feel they come from a dark place- but the shame comes more from pride than from anywhere else.
these thoughts you may have- then again, i am a shallow vain person- so you may not have these thoughts at all.
one of the first thoughts i had- probably a day or so after the initial diagnosis- was one of relief. i felt i didn't have to care about what i ate, drank, did. that i didn't have to take prenatal vitamins anymore. i immediately felt sick about having this thought, and told myself, "if i have ANY hope of meeting this little one, i will be even more vigilant about my diet and care for myself.

another thought i've had is more of a vain thought. in every pregnancy i have an occassional worry about getting back into prepregnancy shape, or something similar.
i always can rely on breastfeeding and babywearing(things that i naturally gravitate towards anyway) to burn calories and shed pounds. this time around i have a little more occassional worry about getting back to prepregnancy shape without a newborn to help me. and will i want to take care of myself physically during an emotional time such as what i am facing?

if i have any other similar thoughts i will share. again, i am not proud of these, i just feel if i share them, you may feel more normal, or at least better about any thoughts you may be having.

a sister's question

this morning mary jane announced that she, in fact, did NOT tee tee in bed.
high five.
then she pointed to my tummy and whispered, "did he tee tee in bed?"

between rosary mysteries prayer

the kids and i composed a mini-prayer that is easy to remember. we say it between mysteries. if you would like to join us- here's how it goes...
Heavenly Father, thank you for the gift of jedidiah joseph. please heal him mind and body. thy will be done.

the hardest part

today the words from a hymn spoke to me.
"eye has not seen, ear has not heard, what God has ready for those who love Him."
i really like that thought. i started thinking about how it's not the letting go that will be hard for me. it's the living everyday without. coming to church without the baby. going to the store without the baby. having empty arms, empty beds, empty slings- that's going to be hard. i just put myself in the Father's hands and told Him, "this will be what is hard for me. I trust that you will give me the grace to get through it- the peace that surpasses all understanding. a peace that confounds me- a peace i don't understand, nor need to."
after mass i checked facebook and "become a spiritual child of st. padre pio"'s status update said...

Hand
over to Him your departure and the departure of others from this earth -
when, where, and as He wills. St. Padre Pio

feeling bigger

on our recent trip to south dakota(mid july) i had an odd feeling that jedi wasn't growing fast enough. i kept thinking "i am 7 months and am actually comfortable in a car! something isn't right."
when we got to south dakota and i had a moment to myself, i laid down and felt for the top of my uterus. i knew that belly button height is 20 weeks, and that's just where i felt it. but at the time i was 25 weeks. i decided to check it again later, thinking he may just be laying weird.
it continued to lay right at my belly button. so at the next ultrasound(27 weeks) at the perinatologists, i asked for a measurement. the ultrasound tech must have had a list of things to capture, but before she started in on her checklist she measured the femur. in my personal ultrasound history my babies legs always measure 2 weeks ahead of their gestation. so, when she said "27 weeks" i wasn't completely relieved.
i waited for the ultrasound to finish before i asked what the total measurements told her. that's when she said "he's below fifth percentile".
so, i am now 28 weeks, and things are starting to get uncomfortable. this is such a weird pregnancy! where before i was cursing the inability to tie shoes, pick up toys, curl up on the couch, turn over in bed without it being a big production.
so, just based on mother's intuition, i think it's safe to say - he's growing!

blessed margaret of castello

a woman at church told me that she is praying for blessed margaret of castello to intercede for us. she is so sweet. she talks to jedi everytime i see her. wednesday she tried to teach him "GO DAWGS!", until i told her that his dad wouldn't appreciate that lesson very much. i asked her to tell me more about blessed margaret and she related the story. i googled her when i got home and found this.
pretty touching. i know historically people were just SO embarassed about their special needs child- but it really shocks me when i run into a similar sentiment in current times. i think it is similar to the shock I had when i learned that bigotry was still alive and kicking. i was pretty sheltered:)