Tuesday, November 30, 2010
after his eyes i am drawn to his mouth and nose. then to his hands, particularly his pointer fingers. then the lay of his legs. then to his right foot. these are all the things that made jedi jedi. his special little attributes- i am drawn to them- they are magnetic to me.
they are the parts of him that endeared me to him. that made me so want to fight for him. that made me want to comfort him and hold him.
my body has finished the bulk of healing. my womb is whole, my breasts have stopped giving milk. but my mind is still stuck in a time two weeks ago. in a rare moment of quiet here at the house my mind immediately zips back to that time and i'm caught off guard with feelings and memories that bring a lump into my throat that is too big to swallow back down.
i miss him- and while it's a messy sea of sorrow i would not trade any of it for a life without knowing him. every little and big inconvenience of the pregnancy and post partum period has been so worth knowing him for those 13 days.
Monday, November 29, 2010
just where i was before you appeared
and in your place an empty space
has filled the void behind my face
life seems to have just picked up where we left off. school, work, trash day, laundry, shopping, etc. my breasts have stopped giving milk. my womb is finishing healing. chris went back to work. christina returned home with her family. the kids are my main distraction. but if given any time to myself with idol hands i just get caught up in memories. my arms ache to hold not just any baby but him.
it has only been three weeks and three day since he was born and it feels like to the outside world it never even happened. i packed away all the pump stuff, all of his feeding tube stuff, all the sponges we used to moisten his mouth. proof of his physical presence is slowly being put on a shelf.
grief is so strange. sometimes i descend into this pit of day dreaming and wish the kids would parent themselves and leave me to my dreaming. sometimes i feel good and merry and we are all laughing and i look at myself and think "why am i having a good time? my son died less than two weeks ago." but i know that thought only can come from an evil dark place so i don't entertain that for very long. sometimes i just want to stay in bed.
sometimes i am scared to have another baby because i am scared that i will react negatively toward the baby- because it's not jedi.
i went for a long walk saturday night. i startled a bird in the path. it was dark and the bird flew out and landed on the street. a car came and as the bird took flight it hit the front bumper and landed in the grass not far from me. it flapped and flopped and soon was dead. i felt so terrible. i felt it was my fault. and it was the second time in less than two weeks that i had watched one of God's creatures die.
Thursday, November 25, 2010
but wonderful life.
now i thank all of you- my prayer warriors. you knocked and knocked
and our Lord listened.
i am pretty sure jedi is thankful for your prayers as well- so
thankful that he's ready to pay back with interest. don't be afraid
to cash that in. i'm not shy about asking him to go before the throne
of God on my behalf. i ask multiple times a day.
Wednesday, November 24, 2010
i had wished that i brought jedi upstairs with me, but he needed to be with chris- keeping warm. his temp earlier when the hospice nurse came over was 94 degrees under his armpit. she tried to comfort me by telling me i needed to add a degree. i still didn't feel good about it. i felt like time was rapidly ticking away and i was moving slow as a tortoise. i drew up three 27 mL syringes of milk for his night feeds. i measured, bagged, and labeled the remaining milk and put it in the freezer. it was about 10:30 or 10:45 before i headed back downstairs. i laid his midnight syringe next to chris and sat on the couch to watch whatever chris had on the tv. i complained to chris about how everything takes forever. the pumping, the washing, the measuring, the storing. i whined a desire to simply breastfeed my son. and i was tired.
a little before midnight jedi made a weird noise. his breathing sounded like a "meow". i got up from the couch and was over by chris lifting jedi from his arms. i sat on the ground with him and felt a stabbing in my heart. i knew this was it. i tried to suction jedi. i got alot of mucus up. some of it was pinkish brown. chris and i sat on the couch together with jedi. franky watched us cry and hold him. she began to worry- hugging me and kissing me. chris made her a snack of granola and yogurt. we talked about possibly needing morphine. chris got the hospice notebook out- but we decided against calling anyone in. we didn't see any signs of him being in pain and we didn't want strangers milling about during this time.
i wanted desperately to go upstairs to our room- all of us. before we headed upstairs i took jedi's feeding tube out. the optomistic side of me figured that if it was just congestion i could always replace it before three. there was no way he was going to get his midnight meal- his breathing was too labored. but as the feeding tube came up, it brought a good amount of fluid up with it. i placed my hand on his chest and pressed very slightly, and more fluid came up. his breathing improved immediately- but only for a little while. i looked at his face without the breathing tube- so sweet and innocent. i wanted to take a picture. but every picture was no good- out of focus, bad lighting. his eyes were glittering. he looked at me. my love just poured out all over him. i wanted to take his place.
i held him close and headed upstairs. chris followed, bringing franky. i placed jedi on his sheepskin- propped up because he always breathed better that way. i laid my head next to his, kissing his cheek where the feeding tube used to be taped.
franky crawled up on the bed- on my side farther from jedi. i held her with one arm. chris laid on jedi's right, i lay on his left. chris switched off the lamp. franky was asleep in five minutes. i transplanted her to the bed on the floor and came back to be with jedi and chris. i slipped my hand under his blanket and held his foot. i loved holding his rocker foot as he slept.
i closed my eyes and listened to him breathe. i knew without asking that chris lay awake as well. i could hear gurgling in his throat. it seemed to get closer and closer, rising up and up. his breaths came farther apart. in the dark i began to say the hail mary quietly inside. the redundancy of the last lines of the prayer didn't escape me. chris got up resignedly and turned the lamp on. we talked to him-encouraging him to go- to not be the fighter anymore. we professed our love. we cried. we held our breath. he continued to fight. i became aware that touching and stroking him just stimulated him too much- just kept him tied to the earth and struggling. i knew where he was going and what was awaiting him so reluctantly i pulled my hand away. i didn't want to draw it out for him. there were so many times when we thought he was gone, then he would gasp and breathe with gurgles again. once during a long pause i thought he was gone and i reached out to touch him, he gasped and i cried. i felt so bad for startling him.
after the longest pause, we knew he had left us. i laid next to him and cried. i looked at the clock and it was close to after two. chris asked me if we should get the kids up. i told him to let them sleep. they would have time to mourn in the morning. chris switched off the lamp and went to the bathroom to take a shower. i could hear his sobs from the bedroom. on my back i lay looking at the ceiling and talking to jedi. where before death i wasn't sure he could hear me, now i knew without a doubt that his hearing was perfect. so perfect i didn't need to talk.
i thought- "jedi, do you hear your dad in there? ask God to shower peace down on his soul." and that is how his intercession for our family began and still continues to this day.
st. jedi, pray for us!
Tuesday, November 23, 2010
so to avoid this scenario i went shopping at the new kroger next door. i felt a pang of guilt. like i was being unfaithful. but i rationalized that i was just doing this for the time being- i can't run away from this forever. i told chris of my kroger shopping plan on saturday and he thought it a good idea. he told me he was going to look for a new job because he didn't want to have to go back and explain to a bunch of people. then he calmed me down by saying he wasn't serious about another job- he likes his current job.
he said "you don't have to face everything all at once. just take your time."
Sunday, November 21, 2010
when we learned about cellular mitosis- how cells divide and reproduce themselves- my faith in God obtained a clear confirmation. the cell- so small. it holds all the mapping and information it needs to carry out it's purpose and reproduce itself. during mitosis the strands of DNA are photocopied and the copies go live in the new cell. at this pivotal moment- if the very slightest most intricate detail gets screwed up- then everything goes haywire. cancer, leukemia, mitochondrial disease, trisomy.
life is SO very fragile. and we're supposed to believe that somehow by some miraculous series of events life just came to be? the big bang became single celled organisms, became tadpoles, became fish, became amphibians, became apes, became us????
so half of jedi's cells had three of the 18th chromosome. and he lived for 13 wonderful days. and God is the only one who could have thought life into existence. there simply is no other explanation. no other way. there is divinity at work.
being away all day, i saw his sheepskin and i embraced it. i was not
prepared for the powerful effect the lingering scent of him had over
me. i barely finished inhaling when my body began shaking with sobs
so strong and fierce. only after a few seconds could i no longer
smell it because my nose was stuffed.
and now, whenever i walk past the sheepskin in our room i take a big
breath in. i know it's going to be painful- but i just can't not
the vividness of memory that his scent evokes is just too good not to
experience. i'm scared that over time his memory will become less
clear, harder to summon.
i will start this post by saying that i received great care at emory.
the staff was very helpful- always mindful of my needs, often before i
voiced them. for that i am grateful.
the basic humanitarian needs of jedi? we kind of had to fight for
those. i will list as much as i can recall- all this for parents who
may face the similar challenges.
jedi didn't wear a diaper for his first twelve hours of life. not
that I minded. it afforded me more skin to skin contact, and i wasn't
the one doing the laundry. i found out later that this happened
because he wasn't even in the computers. that makes sense looking
back. i don't recall them checking his temperature, how many wet
diapers he had, or how often he fed.
at some point during the first night we began to realize what we were
up against. we called the neonatal nurse practitioner and asked for a
cardiac consult. we wanted a current echo of jedi's heart. the
moment she came into our room i noticed jedi wasn't breathing. she
asked chris to give her the oxygen- which she promptly shelved. she
did not attempt to help us. i was confused and told chris to give
jedi to me. i massaged his chest, flicked his feet, rubbed his head,
and talked to him. he began breathing.
before i kindly asked her to leave she said, "you are just going to
have to keep doing that. sometimes it's better if you just let them
and that- that my friends- is what is cozily called "comfort care".
as soon as she left i told chris to hand me the oxygen. soon after
she came, the neonatologist came in. she wanted to get some things
straight. our request for a cardiac consult confused her. while we
came into the birth without any real solid plans regarding the care of
our son- it seems that it was predecided that we would withhold all
medical aid from him. yes, we were offered that option- highly
suggested that option. but chris and i- talked it through and decided
that we couldn't withhold medical treatment based on a prenatal
sonogram. we wanted current clearer pictures- so we could make an
while she was in the room chris decided to ask her why jedi was having
"because he has a chromosomal condition. his chromosomes are not
correct in the cells of his body". the neonatologist was telling us
how these trisomy babies just don't do well and there is no use to
poke around trying to find out how to help them. i told her that
maybe they don't do well because a majority of the doctors and nurses
exposed to them withhold care. that maybe they'd do a little better
if they were given a little bit of help.
later, when the nicu charge nurse came to visit we asked her the same
question about the apnea.
"i don't know, but i'll find out."
"good answer", chris said- relieved that someone was taking us
we finally got the cardiac consult when the cardiologist came in that
chris' main comment was "why does it have to be all or nothing? just
because we aren't going for heart surgery, why does that mean we
should sit on our hands and not do anything for him?"
my main complaint was "why can't 'comfort care' be a cafeteria type
thing? why can't we put an asterisk next to it and define it
ourselves? why don't they ask us what we want comfort care to mean?"
ultimately we wanted comfort care to be this for jedi-
oxygen if he needed it
food- and the ability to get it in his body.
last but not least, love
the feeding tube came about the time we notice the tide turning. some
staff started to realize what we wanted. some remained in their
autopilot "comfort care" mode.
the nurse who came in to set the feeding tube just stood there
watching him have an apnea episode in his bassinette. she requested
him to be in the bassinette for the feeding tube placement. i asked
her "is he breathing?"
she said matter-of-factly, "no".
"babe, just get him!" chris said.
i pulled the bassinette closer to my bed and took him out- rubbed,
flicked, talked- and he began to breathe again.
another nurse came in later. i honestly can't remember what she was
talking about because after she called jedi "it" three times, i just
stopped listening and stared out the window. thankfully chris kept
once the tube was set- they put him on a feeding schedule that we
didn't know would surely starve him to death. his diapers began
showing uric crystals that the nurses called "brick dust" because
that's what it looks like in the diaper- rust colored dust. my friend
michelle was trying to score some donor breastmilk and texted me
asking how much jedi needed. i told her what he was taking and she
exclaimed how inadequate that was. we requested a bump up in his
feed. they didn't suggest it- we did. it just felt so strange. in a
normal baby they would have been all over any opportunity to up his
feeding. but since jedi was slated to die, why keep his tummy filled?
at the hospital chris was a strong and steady advocate for jedi. he
calmly and matter-of-factly would tell them just what we wanted them
to do. i have never cared more for him than i did during the times he
stood strong for his helpless son. such love- such passion. i felt
so proud to call him my husband.
and taking jedi home- felt so good to leave and be able to surround
him completely with love and deep and true comfort care*.
Friday, November 19, 2010
I am so grateful for your example and love, your faith and your trust. Many speak of the heroism it takes to come to Afghanistan, particularly in these circumstances; but throughout these last two months and more, you and Chris have been the heroes to me. Thank you for the witness you allowed yourself to be to so many. It is so easy (and so much more desirable at times I think) to want to just close the door and take care of one's own life and responsibilities. I feel that pull over here so much...so many do suffer the lack of faith in their lives, and the guidance it brings--but I struggle myself just being away from you all. Yet the Lord has called us and put us in a place and time that allows us the choice--will we take up our cross and be raised up, or will we succumb to the selfish urges to hole away and hide, and nurse our wounds in selfish resentment?
Thank you for the choice and the statement of life you have made--not in contrast to abortion, but in contrast to the carelessness and sterility with which the handicapped are treated, especially when their viability hangs in the balance. Please God many will find your blogs and your story and renew their thoughts of purpose and meaning to life, and begin treating others in their lives with dignity and beauty. I cannot wait to walk with you on January 21 in Atlanta. God bless and keep you in the calm and peace of His heart and hand!
As you move through this time, though you have already had the opportunity to plan so much and prepare in advance, I do not believe that you can ever prepare for the pain of the loss of a loved one, because we don't really know how deep the love we have is until we lose them....and as C.S. Lewis said, "The pain now is a part of the love then; the minute we choose to love, we choose the pain." So it is in direct proportion. And though St. Paul says, "We do not grieve as those who have no hope", he does not say "we do not grieve"--just not as those who have no hope. You will be graced, as you have been, in order to bear this cross--but cross it may yet be. When its weight and burden catch you, when the pain of the wound surprises you and you feel the rush of sorrow, know that it is not contrary to faith any more than love is contrary to faith--but in the midst of the hurt and the tears, cling to the promise of faith, the promise of the Resurrection!
I love you so much Liz!
I continue to offer prayers on you and Chris's, and the kids behalf. Know that you are loved so much from over here--and I cannot wait to see you soon! Hugs and more hugs!
His unworthy servant and yours,
Thursday, November 18, 2010
it's a wonderful outreach that helps parents who choose to carry to
term a pregnancy that has received a poor prenatal diagnosis.
tracy has been such a beautiful help- taking calls from curious,
stressed out, joyous little me even into the wee hours- always had a
listening ear and loving advice grounded in faith and experience.
the correct information for donating is-
Make checks payable to St. Mark Catholic Church, "Be Not Afraid - Baby Jedidiah" in the memo.
St. Mark Catholic Church
14740 Stumptown Rd
Huntersville, NC 28078
monica's in duluth, ga at 11:00am tomorrow(friday 11/19).
a reception will follow soon afterwards in the hall next to the church.
we will meet up at honey creek woodlands- a green cemetery in conyers,
ga- at 2:00pm for burial.
all are welcome to come celebrate the life of jedi with us.
what a gift!
i am still overcome by immense gratitude.
everything happened so beautifully- his birth, the thirteen days he
was with us, and his death. i am just so thankful for the whole
experience of him.
Tuesday, November 16, 2010
spit up so i wasn't prepared. i ran to te bathroom and got a suction
bulb and cleared him out but not before he aspirated a little. so, i
really began to worry about his lungs being rattley- they sounded so
he is a fighter- and with a little help from daddy's steamy shower and
some eucalyptus oil on the blankie, not to mention some timely
suctions- he cleared up nicely.
lesson of the day is- do not attempt to change his diaper within an
hour after a feed. the compression of his stomach will cause the spit
and jedi got to participate in his first family rosary tonight.
samantha asked if we couldn't pick back up on the nightly family
rosary routine. it was nice- i don't see why not:)
Monday, November 15, 2010
"he sounds so clear. And his color looks better every time i see him."
i asked a few questions- my primary concern was feeding tube
placement. It has sounded a little off for the last day or so. i
have to really hold it in place when i feed him or he cries. i think
he's growing out of the old placement and i'm going to have to find
the new placement soon. i am curious about what his weight is now.
but all these good reports- wow! how wonderful are Your works O Lord!
adjust to having jedi home while the kids were so wholesomely occupied
at the lakehouse- but i had been anxious to see how we'd do all
last night the kids took turns holding him.
"he's such a little gift", i said.
samantha, while holding him, said, "what's that saying about little
"the best gifts come in small packages?" i offered.
"no",max chimed in. "he's a big big gift in a small body."
Sunday, November 14, 2010
i just did a search online for the Infant of prague novena and it turns out that it's a novena to be said every hour for nine consecutive hours. so i begin this today- asking for the grace to be the best mom for jedi i know how to be and asking for the gift of days for jedi-so his uncle can look into his eyes and feel the quiet strength of God.
INFANT JESUS OF PRAGUE NOVENA PRAYER
O Jesus, Who has said, "Ask and you shall receive, seek and you shall find, knock and it shall be opened," through the intercession of Mary, Your Most Holy Mother, I knock, I seek, I ask that my prayer be granted.
(Make your request)
O Jesus, Who has said, "All that you ask of the Father in My Name, He will grant you," through the intercession of Mary Your Most Holy Mother, I humbly and urgently ask your Father in your name that my prayer will be granted.
(Make your request)
O Jesus, Who has said, "Heaven and earth shall pass away but My word shall not pass away," through the intercession of Mary Your Most Holy Mother, I feel confident that my prayer will be granted.
(Make your request)
This novena is to be said each hour on the hour for 9 hours
Saturday, November 13, 2010
i decided to head upstairs and try and get some sleep as this was probably the night. i drank a half-glass of red wine and read the girls to sleep. i texted my doula and told her to get some rest. i slept well until about 2:30AM when the contractions began to wake me up. i timed a few- they were 6-7 minutes apart at times. sometimes they would space to as much as 12 minutes apart. i went ahead and got up. i packed some last minute things and called dr. tate. i got his nurse practitioner and since we were expecting our 7th and we were more than 45 minutes from the hospital she suggested we go ahead and drive in. i called regina to come over and stay the night with the kids and she arrived within 15 minutes.
we were on the road by about 3:00AM and the contractions were not fun in the car. in the reclined front passenger seat i would assume a hands and knees position with my face toward the rear of the car. thankfully we were there by about 4:00AM. we parked and loaded up with our most important bags. we must have parked in the farthest lot from labor and delivery as we walked a good mile of hospital hallways just to get to where we needed to go. once we checked in at labor and delivery we had to follow a nurse who was a competitive speed walker in a past life. she slowed to a jog when she perceived i was having a contraction. in the room i was hooked up to the monitors for the initial strip.
i texted my doula to announce our arrival at the hospital, i changed into my gown, and prepared for the blood draw. i'm not the easiest stick. my claim to fame is the time the american red cross turned me away because they couldn't locate a vein. so my doctor got me on the phone and we discussed placing a heplock- in case of emergency they didn't want to be on a heated treasure hunt for a vein. the nurse called in the nurse anesthetist to place the heplock. supposedly they are really good at finding veins. well, at least jim was. all the drama with placing the heplock completely scared all of my contractions away. the nurse checked me and announced i was 5-6 cm dilated. margaret arrived as well as my doula. we kind of chilled in the antepartum room for a bit until we were moved to a l&d room. my family arrived and began their wait in the outer room.
so we tried various things to stimulate more contractions. nothing working. i searched inwardly for reasons why my labor may have stalled. i found that i was scared. that my body was ready to go- but once the heplock drama happened and stalled my labor, my mind took over and prevented labor from proceeding. i needed to get my brain out of the way so my body could do it's job. i typed up this post and submitted it to blogger. i needed prayers in a bad way.
people started flooding my inbox with sweet comments, messages of hope, and statements of faith. at times i became so overwhelmed with gratitude and love that i would start crying- this would bring on the strongest contractions- better than pitocin! it was just very cathartic- and once my emotions started flowing i began to open up and allow.
at one point i was sitting in the bathroom and i kept thinking through one statement. "i believe in God, the Father Almighty, Creator of heaven and earth."
i mean- GOD! He created heaven and earth for pete's sake! and i'm worried about what's going to happen with my birth??? i kept repeating this statement from the creed- whenever i felt doubt. it was my mantra that would help me through the next 10 hours.
at about 1:00PM doctor tate broke my water. no gush- no nothing. i knew my water was low, but not that low. it worried me. he also announced that i was closer to 7 cm. i took a nap and focused on readjusting my mind. i decided that i needed to get over whatever walls were in my way and get this show on the road. doctor tate suggested that if labor didn't pick up he'd spray some pitocin in the air and that might just be enough. i was NOT wanting to get hooked up to pitocin. i wanted to get over and meet my fears head on- spurred by my own strength- not pushed forward by some foreign synthetic hormone. i just thought that it would be against my will and i would not be mentally prepared for pushing and beyond.
at about 3:00PM- the hour of divine mercy- my contractions returned. they became a little stronger but never became closer. i spent alot of time on my own during those hours. i needed focus. i needed freedom to cry and to open myself up- become vulnerable, so i needed privacy. i retreated to the bathroom often- taking a shower once- but mostly just buying space for myself.
i'm not exactly sure what time things started feeling close. i think i remember dusk in the window- so it must have been soon after sun down.
during one contraction as i was leaning on the bed and my doula was doing the hip squeeze thing- imagine my hips being a clothespin- it felt right to bear down a little bit. so i did. and also with the next contraction. they were still really spaced out- like 7 minutes or so. at one point someone said, "you can't have the baby while you are standing by the bed." so i climbed into bed. we adjusted the bed so the head was nearly perpendicular to the foot of the bed. i was facing the back wall with my upper body supported by the head and my lower body in a kneeling position. i told my doula that i felt like he was right there. she told me to feel for him. i did and i was correct- he was right there! t
his is when my contractions spaced out to what seemed like forever. if i had to guess i'd say they spaced a good 15 minutes apart. my legs got tired so i had the bed flattened again and laid on my left side. teams were preparing- the room was filled with people. the rest of the room remained dark but for a spotlight that was switched on above the foot of the bed. doctor tate was suiting up. each contraction, i believed, was the contraction that would bring jedi out. i pushed through one contraction and then felt relief- i thought i was done, i thought his head was out- but i was wrong. it was confusing. this labor and delivery was VERY atypical for me.
i kept expecting the crazy out of control transition that i'm used to. i asked my doula what was going on. we both felt like this labor was the gentle labor that jedi needed. jedi didn't need hard contractions. jedi didn't need transition. jedi didn't need chaos.
at one point i just had this overwhelming feeling- i felt that i was soon going to see the face of God. i tucked my chin and pushed as hard as i could. it was so unbelieveably hard to push him out! max was 10 lbs 4 oz and 23 inches and he was easier to push out!
i finally gave one last push and out he came. i sat up to receive him. he was light gray and covered in creamy lanugo. i needed to hold him. they suctioned him a couple times and then handed him to me. i began massaging him and talking to him, encouraging him to breath. the nurses threw a sheet over my lower half. chris brought father joseph and father jack into the room. i felt everyone staring at me- silent. i could hear a pin drop. i just kept rubbing him- willing him to breathe. i'm really not sure how long this lasted. chris, afterwards, said that it was the longest 2 minutes of his life. i cannot accept that. it had to be longer. i'd say 5?
i looked up at my brother and thought "begin the baptism now! what are you waiting for?"
jedi began to breathe. i began to breathe. i sighed. what a relief! i held him close. the baptism began. i asked for oxygen for jedi. my sister, margaret- our pediatrician- suctioned him because his breath was rattly. halfway through the baptism he began to cry. he opened his eyes. these are two things i didn't expect at all- having read other trisomy birth stories. my brother finished the baptism and confirmation- he blessed us and then left the room so my doctor could work on the afterbirth. since my contractions were so spaced my uterus wasn't clamping down well enough. i lost a good amount of blood. i cut the cord and soon after received a shot to aid my uterus in clamping down. i held my boy close the whole time. they kept bringing warm blanket after warm blanket and piling it on top of us to get us warm. i was just on cloud nine. so blissed out. he was sweet and had a cry that was high and loud. he was small and soft and warm. so very warm against my chest. i savored every minute.
someone asked, "what time was he born?" we looked up at the clock and it was 10PM so we guessed probably 9:30. the kids came in soon after. henry came in almost oblivious, like he had shown up to a party or something. george came tearing into the room and immediately requested his own hospital gown. mary jane wanted to see jedi, same as samantha. franky was just wide eyed and a bit freaked out at seeing me in my current condition. samantha was pretty shaken up at jedi's constant crying. they all left within a few minutes and we had to bring samantha back in when jedi had calmed down. it was good for her to see him in a calmer state. next were the grandparents. their visit was just as brief as the kids.
once everyone had left chris held jedidiah so i could get to the restroom. i felt faint from the loss of blood and lack of nurishment during the last 12 hours. once i was back in the bed i passed out for a few minutes. my first meal was a turkey sandwich on a hamburger roll and pineapple pieces. i was halfway through with my meal when jedi stopped breathing for the first of many times that night.
prenatal diagnosis- since we didn't have an amnio. we roomed in the
first night, waiting and watching- holding our breath. when the sun
rose and jedi was still with us we felt we owed it to him to check and
see what, if anything, we could do to help him fight. chris
accompanied him to get an echo of his heart and an ultrasound of his
brain. he also had blood drawn for a genetics test called FISH- the
results of which wouldn't return until the following sunday morning.
the brain scan came back positive for semi-lobar holoprosencephaly.
the prenatal diagnosis based on ultrasound was alobar
holoprosencephaly. the ECHO supported the prenatal diagnosis- truncus
arteriosis amongst other things. one thing that brought us some
relief was that the truncus wasn't ductal dependent. the truncus
wasn't relying on the ductus(the bypass passage that is open in unborn
babies and closes within 24-48 hours of birth). so after the ductus
closed jedi wasn't going to experience a rapid decline in reaction to
saturday evening a geneticist visited our room. he did a physical
exam of jedi and asked us several questions. based on his findings he
suggested a diagnosis of either trisomy13 or trisomy18.
the neonatal physician came sunday morning and shared the FISH test
results. she said the test was inconclusive so they sent it on for
further testing. but what they did find out was that jedi was more of
a trisomy18 mosaic.
i will attempt to explain mosaicism. they took 60 of jedi's cells.
they looked at the amount and number of the chromosomes in each cell.
each normal cell has two of each of the 23 chromosomes. trisomy means
there are three chromosomes. the number(13,18,21) following the word
'trisomy' is refering to which chromosome is tripled.
so they took 60 of jedi's cells and looked at the makeup. 30 of them
were found to be trisomy18. and the remaining 30 were found to be
normal-having 2 of each of the 23 chromosomes.
so it's a better diagnosis- genetically. but looking at ALL the
tests, the good genetic news doesn't change the heart news. and
anything invasive and aggressive, like a heart surgery, would likely
kill jedi. truncus surgery on a healthy child is very difficult- and
it's actually not one surgery but a series of surgeries.
so those are the findings-
he is doing good today- praise God!
he continues to tolerate his feedings. he is breathing nicely. his
color fluctuates- but we are finding it's positional. he doesn't like
being upright against my chest. He likes to be laying propped up on a
lap or cradle held. he continues to open his eyes to look around at
the world around him. he likes faces and lights- much like a normal
as always- thank you much for your prayers and support. the meals
have been great and leave my caretaker little sister free to do other
things around the house- not to mention taking care of her own 4 month
she is super awesome and i thank God or her every day. and thanks,
mom and dad, for not stopping at 10 children- but being open to eleven:)
Friday, November 12, 2010
keeping the older kids. it used to be a ranger station so it's got
lots of land for the kids to roam. some are fishing off the dock
now. some are collecting acorn caps to make whistles. chris is now
playing horseshoes on the sand that is in the background of this
picture below. the front and back decks are nice and shaded. it's
just so peaceful.
their cousins are over- helping in this transition. we decided to
bring jedi up for a visit- some fresh air and sun is doing him good.
i will not stop marveling at the family that God has surrounded us
with. their support means so much to me.
he slept ALL day yesterday- saving up his energy so he could complain
about something i ate!
a week! one week old! what a miracle, wrapped in a blessing, inside
a gift. i am so utterly thankful.
and to thank God- because i am starting to learn that this is the
paradoxical way He works- i will ask for more:)
uncle father kevin comes back for his two week break in january. on
the phone a couple days ago he said it was something like 60 days from
i am daring to dream, daring to hope, daring to ask God to allow jedi
to meet his uncle.
won't you join me in thanking God by asking for more?
Thursday, November 11, 2010
Wednesday, November 10, 2010
on the corner of spring and 17th. the same parking lot in the blog
post "praise God" where we waited with uncle father kevin for the
minibus's flat tire to fixed. i kind of felt a connection through
time and space with him at that moment in our drive.
he called last night and said that he'd been trekking all over the
afghani countryside, visiting the soldiers in other bases- bringing
them Christ. he had this feeling that he just wanted to get back to
his home base- to sleep on his airmattress instead of the hard cots
that gave him shoulder cramps. once back to his homebase the feeling
didn't leave. he said he felt down and a little depressed and finally
realized that he didn't want to be at his home base- he wanted to be
home, with his family. i want him home too. i miss him and know that
the distance eats at him.
i ask God to sustain him. keep him strong so as to fulfill His
mission- whatever that may be.
breathing a couple times. he just turned dark. i massaged him, spoke
to him, prayed. he finally picked back up. even with the apnea
monitor on my sleep was patchy.
his breathing now is shallow and eratic. he looks tired. when he was
having those episodes last night and i had him revived i whispered to
him "thank you for coming to visit me. i am so honored to be your mom."
i am. every thing i do for this least of His people, i do for Him.
massaging his eyes to work the eye boogers loose, moistening his mouth
with a tiny wet sponge, massaging his tiny body with oil, feeding him,
changing his diaper, keeping him close and warm, drinking water and
eating enough food so that i may produce enough milk for him- every
action of mine in these last few days have been for and about him and
i have never felt so complete.
chris is so in love. he holds jedi and does his night feedings
through his exhaustion with such a tenderness. he talks to him, even
though at the hospital, jedi failed his hearing test. andchris has
been there, in a special way, for me. he is such a strong support. i
thank God for him.
my older sister felt called to send this email out to the family
Tuesday, November 9, 2010
asked us what we needed and talked over possible grief counseling for
us and the kids. it was kind of weird having this conversation while
my mom rocked pink little jedi.
we discussed what jedi's last moments may look like. with the
existance of the congenital heart defect- truncus arteriosis- the
likelihood of congestive heart failure is high.
it's just so hard. he's beaten such odds! short of planning a trip
to vegas dare we dream he will continue to beat the odds?
in a perfectly healthy child, truncus arteriosis, unchecked by
surgery, will claim it's victim in 2 weeks to 2 months. here comes
more uncertainties, grim prognosises, and windows of time. but i have
learned that God provides- to trust in Him. because "He saves the
best for those who leave the choice to Him".
got a nice massage with the essential oil blend that first served as a
belly balm during his pregnancy. he LOVED it and all his limbs
relaxed into every stroke. his eyes were alert for awhile until the
relaxation came over him like a wave.
now he's all stretched out- bathing in the sun i so wanted to share
Monday, November 8, 2010
Sunday, November 7, 2010
he's doing amazingly and miraculously well. he sleeps well. when
awake he locks in on people when they talk to him and tracks your
voice. he is tolerating the feeding tube- feedings go smoothly, no
spitting up or aspirating.
he does have problems with apnea- when he just stops breathing- but
he's much improved since the first night- about 6-7 episodes then.
he's not on oxygen except for after an apnea episode- just to get him
and he's just such a little bundle of love. his skin is velvety
smooth and his hair is old-man style- balding on top and kind of
kinky, dark brown, and long-ish around the back and sides.
he enjoys skin to skin, especially with daddy since he's got the
higher body temperature of the both of us. and i am working on
getting a milk supply up so that jedi can get some home made goodness
the prayer request for today is thanksgiving. so many times we are
quick to ask for friends to pray for our needs, wants, desires- but
fail to ask them to join us in thanksgiving.
so please- let God hear your voice today- thank Him for His many many
in preperation for baptism- jedi's uncle father joseph blessing the water, outside the labor and delivery room.
father jack- our parish pastor up at saint monica's concelebrating
Saturday, November 6, 2010
I know and feel that all of you out there want to do so much for them. After prayer this morning I feel the following best sums up their immediate need.
Pray that the Holy Spirit comes upon them and the caregivers that are present and brings them:
Wisdom,Understanding(Faith),Counsel,Fortitude(courage),Knowledge,Piety,and Fear of the Lord.
Pray that the nurses, doctors, and other staff at the hospital give them the patience, compassion, gentleness, charity, and nonjudgemental care that God has instilled for all of us to give unconditionally to each other.
They are extremely tired so pray that when they have those brief moments of rest they are rejuvenated and ready for the next hurdles.
Pray and know that your prayers as their extended spiritual family are truly assisting them and their family at this time.
God Bless all of you and thank you from all of us her family!
Friday, November 5, 2010
with my doula.
i am standing at a pivotal point in my life. i look ahead and do not
want to move. our lives will change in ways i am not even aware of.
i am always amazed at how my body can be so controlled by my brain. i
can't recall the saying- but it goes something like- "to hold two very
opposing thoughts in your mind at the very same time...". this whole
week has been like that. a very exhausting juxtaposition- a wrestling
with myself, with God. my body has very slyly fought off labor all
week it seems. and now, sitting in my hospital gown, poised on the
edge of the hospital bed my contractions have whispered away to little
can't i just let go? can't i just descend into the darkness so that i
can experience the light? it's so heavy. so overwhelming. so
lonely. so scary.
hopefully this post will work it's twofold purpose.
1- i will have purged myself of these thoughts- and free myself to
move forward with this incredible task.
2- i will have you all behind me- praying for my intention- carrying
this cross with me, and lightening my load.
Thursday, November 4, 2010
you all have been with me through this pregnancy in such a big way.
and carrying him has been such an effortless joy! the hard part is
around the corner for me- so please remember me and my family in the
days, weeks, and months to come.
i'll check back in when i can.
we had names picked out. if he was a girl we'd have named him charlotte rose. i think we found out at the third ultrasound-the one we got when we were staying on the lakehouse with the family this past june.
wtih our youngest four babies we didn't find out what gender they were until they were born. it was just SO much fun- like unwrapping a Christmas present(that you haven't peeked in at) on Christmas morning. such excitement, anticipation, dreaming, guessing, plotting.
anyway- with this baby it was going to be different. i felt the need to find out so the kids could grow to know this sibling that was not going to be with us long.
so at the ultrasound we asked the sonographer to write the gender on a piece of paper and seal it in an envelope. that weekend i took the envelope to the bakery and gave it to the lady behind the counter. i asked for a plain brown chocolate cake with question marks in dark chocolate decorated on the outside. then the middle layer was going to be the newsbreaking part. if the paper said 'girl' she was to use pink icing. if it said 'boy' she was to use blue. i wanted NO pink or blue icing on the outside. at this point nobody knew what the paper said except for the sonographer. the lady at the bakery carefully and excitedly wrote down all the special directions. she looked at the schedule and was relieved that her mom was on shift the next day and she would be careful to inform her that night at home- just in case. that night i cried in my room at the lakehouse. everyone else was SO excited about finding out. i just kept thinking "well, soon i will know if it's a boy or a girl that i'm going to have to say goodbye to." i talked with tracy from be not afraid on the phone as i sat by the pool. she told me how very special this party was going to be. how alot of trisomy babies in heaven have sad sad stories to share. stories about how their mom & dad chose to abort them. but jedi will have this special story to share. how his parents chose to throw him a party and eat cake. after the talk with tracy i was in a better place.
so on sunday my father-in-law picked up the cake at the bakery and brought it back to the lakehouse. we all eagerly awaited the news.
when i first sliced into the cake, the knife came out blue! it's a boy! we all cheered. the kids gobbled up the cake in no time. jedidiah joseph. our boy.
and- i was right. i felt he was a boy all along. that is why the week before memorial day- the week before our first ultrasound) i went to the craft store and bought cornflower blue cotton yarn. at the lakehouse the blanket lay halfway finished. here is a pic i took of the blanket after we ate cake.
Wednesday, November 3, 2010
Tuesday, November 2, 2010
so we needed to all three of us talk about it.
i asked dr tate what were the risks of waiting opposed to the risks for inducing at this time.
we talked about it for awhile and we all came to the same page of waiting for things to go naturally. he measured my tummy- still 35 weeks. he did a quick ultrasound- head down, good heartbeat- but the amniotic fluid was lower than last weeks ultrasound. so based on that finding he was a little anxious to see what my cervix was doing.
posterior, -3 station, 20% effaced, and 3 cm.
that really reinforced our decision to not seek induction. my bishop score was REALLY low- like <4- so my body would not take an induction very easily and my risk for a c-section following a failed induction would be high.
i'm SO glad i picked him as a doctor.
so- the prayer requests for today are---
for an increase in amniotic fluid.
for my body to start preparing for labor.