the nature table altar is at the entrance to our home where her little brother puts his treasures from our walks. she made the candle holder in kindergarten, a gift to us, her last christmas. he likes to gather leaves, rocks, pine cones, acorns, wild chestnuts, even abandoned snail shells. often, he will pick something up and say ” this is for sophia“.   he and i made the chain of mairigolds (inspired by the rodrigvitzstyle trademark)  to place there today for all saints’ day. 

a brother’s altar. this one is on his book shelf, in his room. the  pictures are happy days, an angel and some of my favorite stones (amethyst in his favorite color) i gave him last christmas, and a beeswax sculpture of the 3 wise men that he made in kindergarten.

our family room altar. sophia loved and collected edelsteine, semi-precious stones. when she was in the hospital, she recieved some of these from her friends in kindergarten, some are gifts from her papa and his travels, and the starfish are from her brother’s trip to the baltic sea this summer with his grand parents. 

the angel altar in the music room (and guest room). i hung this picture here intentionally. it is a space that she loved to be in and one that was very hard to enjoy after she was gone. we have spent so many hours together in this room. she was always happiest when singing, dancing, and twirling or playing keyboard alongside her papa on guitar.

this altar was also inspired by those who love her. everytime we go to her grave, we find fresh flowers, stuffed animals, and little angels left by people who love and miss her.  most of the time, we have no idea who they are.  there are pictures drawn by her friends that i have hung in her room, cards and letters to her on her birhday, so many things.  every single item left for her at her grave has been felt like a big huge hug, carried home with immeasurable graditute, and placed at this altar. i wish i had the words to describe what it does to my heart, how deeply touching it is, to find these gifts at her grave.

i am so grateful that no one has forgotten her.

little altars for sophia naturally formed throughout our home. if there was a space without a picture of her, then i made sure to put one in it.  she is never far from my heart and mind- i wanted to be anywhere in our home, and know exactly where to turn and see her.

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today is dia de la muertos, a holiday i’ve learned a lot about from my dear friend steph of rodrigvitzstyle  who is also hosting dia de bloglandia today along with susanna and rebecca.

november 1st is also all saints’ day and the 2nd, all souls day in germany.

you can visit other dia de bloglandia participants here.

february 20th, 2008- six days after her stroke 

her initial recovery from the stoke was simply amazing. starting the 17th of february it was as if she got better by the hour. it looks like pizza, but in this picture above she is eating flammkuchen (she insisted on it and we had to make special arrangements to get it for her and trust me, it was our pleasure).

this is the first picture i have of her in my photo library since her stroke on february 14th. it was taken on the 20th. within 6 days, she could sit up with support, talk with some impairment but her memory was so vivid. she was telling all kinds of stories- it was so wonderful for us to listen to her.

she still could not move her left arm or leg nor did she have complete feeling on her left side. the physical therapist emphasized that her left hand must always be visible to her whatever she was doing or else she would ignore it making it more difficult to regain her motor skills.

in this photo above, she was eating for the first time since after the surgery. doses of steriods multiplied her hunger but we were still so happy that she was eating. her left hand was not only propped there for the photo, we had special instructions to always make it present whatever she was doing.

i will continue and am determined to tell the sun’s story on my blog. i want to do this for any parent out there looking for information . it is my intention. i consider myself a good persistent truncus arteriosus resource and an honest reference for kinderkardiologie klinik at großhadern klinikum der univerersität münchen (pediacardiologie grosshadern university hospital in munich). please feel free to contact me.

the circumstances surrounding her stroke naturally changed our relationship with not all but some of her primary care takers. what happened in the days that followed her stroke is such an outrage, it frankly has become emotionally draining and difficult for me to think/write about so i am giving this a rest for now.

comments are closed also for this reason, that i just want this information (especially about kinderkardiologie klinik,  großhadern) out there for parents that are in the shoes we were in over a year ago, frantically researching to find information about them (i will post another time of how and why we ended up there to begin with_.

thank you sincerely for the emails from all of you- one of them said “i don’t expect you to write back“- but you know what (you know who you are)?  i want to, and i will.

if someone would have been in the room listening to us discuss if we should report for perhaps the 15th time that day that there was something wrong with our daughter, and then decide which one of us was going to do it this time, and which staff member to say it to, they would have thought we were nuts or maybe even plain stupid. but you see, by now they had made it clear in more ways then one that we were over reacting, a little short of calling us freaks. and we obviously began questioning our own judgements.

once my husband made his way to the nurse’s station,  i don’t even remember who came in first but the next thing i know, there were upto ten doctors and nurses surrounding her bed.

everyone was shocked- the look on all their faces broke my heart. suddenly it became hard to breath, i could hear everything they were saying but i couldn’t hear anything at the same time- i was in shock.

it was past 4:00pm when they finally confirmed she had had a stroke- and that it was on the right side of the brain since her eyes deviated to the right.

she was immediately taken to radiology for a ct and then to a cath lab for an angiogram.

they told us to go and wait in our room at the ronald mcdonald house and that they would call us as soon as they were finished. we sat there in silence waiting for the call-  we were utterly speechless.

they said the good news was that the blockage happened and took care of itself- meaning during the angiogram they could not find anything. what they didn’t know is when the stroke happened, how long the blood flow to her brain was interrupted, and which motor skills she would be able to regain. the entire left side of her body was paralized.

we were heart broken and devastated.

waiting in our room at the ronald mcdonald house  

in the midst of the terror and all the panic, a collision between hope and reality,  i picked up my camera and took this photo of my husband. the pain i felt in the center between my heart and my belly made my arms so heavy, i thought i was going to crack open in half.  it was extremely difficult to hold the camera up- and i had never taken a picture of anyone in despair.

i put the camera down, closed my eyes, and thought: when she grows up, i will show her this picture and tell her ”he was so worried about you! your papa loves you so much.”

our daughter’s post surgery care at  großhadern klinikum der univerersität münchen (grosshadern university hospital in munich) has been described as sloppy work, in other words, negligence, by the director of cardiopediatric icu at dallas childrens hospital when he reviewed her convenietly incomplete file during the investigation after her death.

she was asleep when we arrived on the morning of her second day after surgery. the nurse said that she had had a good night but that earlier in the morning her heart rate had become irregular and they had to turn on the external pace maker.

this alarmed us since it had happened repeatedly in the afternoon and evening of the day before.  the night before, dr long (not her real name) had just started her 24 hour “dr on duty shift” . between 9:30 and 10:00pm she performed an ekg test,  removed the results from the printer, told the nurse she would go look at the results in “ruhig” and left without saying a word to us. the nurse came back in ten minutes later to turn on the external pace maker.

on the first day of surgery, it had been explained to us that it was  not abnormal to provide external pace maker support right after surgery since the heart was beginning to heal- that depending on the patient a few to several hours would be sufficient to help the heart regain a normal rhythm- and if not, the patient would have to go back into surgery to have an internal pace maker implanted.

so the problem was, it had been almost 40 hours after surgery and every time they turned off the external pace maker, her heart rate went right back to being irregular. to me, this meant one of two things: she had to go back to surgery to have a pace maker implanted or this was a symptom of an on coming stroke.

that morning the sun woke up at about 8:00 am and she looked worse than she did the day before. her eyes were deep in her sockets and she had this dazed look that just did not feel right.

when i pointed this out to the nurse she said it was the medication- as did the next seven to ten doctors and nurses that came in her room that day. i asked each of them until it was obvious that i annoyed them. at one point, around 12 noon to be exact, dr. spoon came in and performed a cardio sonogram and said everything looks good - he looked at her for a while and then turned, stared intently into my eyes and asked me “do you think there is something wrong?”  it was as if he was daring me to say yes.

i immediately said no. you see, dr. spoon (he seemed to be the boss in the pediacardiac icu at großhadern klinikum der univerersität münchen , it was never really clear what his title is) proved in time to be a class A asshole. he had just told us every thing was okay and i was desperate to believe that everything was okay. i will never forget this because he would later say to me “did i not come in at 12 noon and ask you if everything was okay and you said yes?” 

at 9:26 am, which is when this photo above was taken, i held the sun in my arms for the first time after surgery. her nurse on duty was friendly and quite cheery. she asked if i wanted to hold her, helped me carry her out of her bed, and get comfortable in a chair.

i continued to take photos of her through out the day after my husband took this one of us. tomorrow i will write about why we even took so many photos- but what i noticed is that she could not look straight at me as i took photos- it was so frustrating. every time i wanted her to look at me i had to stand on her right side. and if i stood on her right side, i was against the window light which made it hard to get a good photo. i was really trying to get her to look at the camera- it turned out all the photos i took of her that day were taken on her right side.

the last person to see her was the physical therapist at exactly 3:00 pm (this is standard in german hospitals after surgery and is primarily massage). we became excited and were ready to cheer her on since at this stage after surgery, the same therapist had said the day before, she would be allowed to try to sit up. the whole session lasted about 15 minutes and we all noticed that she could not move her left arm or leg. again, she told my husband that it was the sedative medication (although we learned later that she immediately reported concern that it was not normal).

as soon as she left, my husband turned to me and said “elsa, she cannot move her left side- something is wrong”

i said ” go and tell somebody“

in comparison, the kinderkardiologie klinik, großhadern klinikum der univerersität münchen (grosshadern university hospital in munich)  to the one at dallas children’s hospital, is like night and day.  for one, it is very small. it is a wing on a floor that is split in two sections by a glass door. one section they called the normal station had six rooms with upto 3 beds each and the other side was icu which had 5 rooms and two beds each. there was not much difference between the two sections except icu was closer to the one nurses’ station that they shared.

aside from the facility being outdated for the kind of patients they serve and care they provide, the difference that had the biggest  impact on me (or shocked me) is that in icu, the patient is not attended at all times and parents could vist only between 7:30 am and 9:30 pm- unless you had a kind nurse that was willing to bend the rules.

at the dallas childrens’ hospital icu, each patient has a personal nurse and is attended around the clock- the nurse is not to leave the room under any circumstances. two vistors at a time are allowed to be with the patient until 8:00 pm and then one can stay the whole night.

the doctors and nurses at dallas childrens hospital were so helpful and open- every time you met one for the first time, the first thing they said and emphasized was “please feel free to ask any and every question you have at any time”- i did just that until i had none left.  for sure i received my non-professional medical training to care for my child in the days and nights i spent there. i learned everything from administering medication to putting in a feeding tube. i also learned which clinical symptoms are critical and why and how they are monitored- most importantly, i knew what questions to ask this time around.

we spent the first day after surgery at her bedside as she slept the entire time which was to be expected. aside from the morning, afternoon, and evening nurses, three doctors came at different times (for now let’s call them dr. home, dr. resident, and dr. spoon).  i remember clear as day asking each of the doctors the same two questions.

i asked them to make sure that her blood pressure numbers were okay. as everyone knows, after any major surgery, blood pressure is so critical and should be artificially lowered with medication if necessary. i wanted assurance that they were okay because they seemed to be fluctuating a bit to high to my husband and i (for after surgery) 120 to 140 - at dallas childrens it was kept no higher than 80. all three doctors told us there was nothing to worry about.

my second question was if they could check the blood flow to her brain by scanning her temples using a sonogram- dr. resident said he will check with dr. spoon. dr. spoon came in and said it was not necessary and that because she was not an infant, they could not see anything anyway (this is so wrong!- he ended up scanning her temples daily it in the following weeks).

dr. home, which came in for morning rounds and was the first one i asked, rolled her eyes at me and asked “why?”

why? i wish i screamed it out! precaution against stroke!!!!

i could not really say why. all i  remember is that i could not stop thinking about it- i could not say exactly why but all day long we sat on either side of her bed- my elbows on the bed, i held her hand with my left hand and rested my right on her head.

someone later said to me that it was intuition, a mother’s intuition.

after the catheterization, night before surgery: watching a movie on the lap top

the day after we checked in to the hospital, and a day before her surgery, she had a catheterization for exploration purposes with no complications. they made a plan for the surgery and confirmed that her homograft that was acting as her pulmonary valve needed to be replaced (this we knew would happen ) and that the insufficiency in her aortic valve had increased (which we expected, it is native to her heart defect).

6:27 AM , morning of the surgery- a sedative had just been administered to relax her from separation anxiety

our daughter was born with truncus arteriosus.  representing 1-2% of congenital heart defects, it is the most rare out of the nine that have been identified. recent research shows that based on an estimated incidence of congenital heart disease of 6-8 per 1,000  children, truncus arteriosus occurs in approximately 5-15 of 100,000 births.

surgery to correct this condition is usually done in infancy. the pulmonary arteries are separated from the common artery and attached to the right ventricle with a tube.

she was 13 days old when she had her primary care corrective surgery at dallas children’s hospital in dallas texas. a  homograft was placed to act as her pulmonary valve which needs to be replaced on an as need basis-it was time to replace it and this would have been her first surgery in germany.

6:55 AM, waiting to go to surgery- she hand picked that bunny out of all her stuffed animals to go with her in the car ride to munich (she called it hase) . it also went to surgery with her and like her, came back with her with a huge band aid. i thought it was sweet.

we rolled her in her bed down the hall, to the elevator, to the second floor, the surgery floor. we were allowed to accompany her only to a certain point and aside from the pain that naturally comes along with having your child go through such a horrendous thing, what i distinctly remember from that morning is how she had a hard time going to the other side of the surgery unit- to the part that we were not allowed to go to. i did not expect this since she was given a syrup that made her act like she inhaled laughing gas. to see her suddenly realize we were leaving her broke me inside and it was all i could do to keep myself on my feet.

this is what i wrote in a mass email to friends and family that evening:

the sugery  went smoothly- everything as planned and with no complications. her doctors are more than satisfied with how everything went and so are we. she is now in icu in stable condition. she arrived there shortly before noon and was already awake enough to recognize us and ask for water by 3 PM. we were thrilled.

she is being kept sedated overnight to help her rest- we hope that she continues to do well. I will send an update out tomorrow night.

the night before: packed, and ready to go

 a year ago today we arrived at kinderkardiologie klinik, großhadern klinikum der univerersität münchen (pediacardiologie,grosshadern university hospital in munich) with the sun, our beautiful daughter.

my parents in law had driven down the weekend before to stay and care for our son and after a sleepless night fueled with fear and worry, we left with her early in the morning in order to arrive there before noon.

waiting to check in at the ronald mcdonald house

 we checked into the ronald mcdonald house where we had a reserved room and then walked together across the street to the hospital to check her in.

a few minutes before we walked across the street

this was a scheduled heart surgery for our daughter.

click on photo to view video

we planted an apple tree for her in our garden then had birthday cake and fighting tears we sang happy birthday to her as the breeze blew out the candles one at a time- just as she would have done it.  it is with sore hearts that we celebrate our sunshine’s fourth birthday today.  

she had a thrilling way of being wonderful. she had so much love to give- so beautiful inside and out, so very special. you see, at her very young age, she had a soul more beautiful than any that i have ever known. she was kind, considerate and respectful as she surprisingly often asked permission if she could do something. and she was funny. she would crack herself up laughing all the time and us too. she loved books. her intelligence amazed us when she began reciting at the age of two from memory wilhelm busch poems that her papa read to  her every night. every night she knew exactly what she wanted to hear. if it was a story from one of her anthologies, she said what she wanted read to her then knew exactly where to find it.  although not uncommon for someone like her that is born into two languages, it was amazing for us to witness her understand everything i said in english while she always answered in german. she loved to dance and when she would sing, i would tell her how beautiful her voice is so that she would sing some more. it was breathtaking. i could never help but smile from ear to ear.

when i think about her last months, i realize how bravely she endured so much and clearly fought so hard to live. we, my husband and i know now the delicate balanced involved, the exquisite beauty and love that can exist in an instant of breath, in one solitary glance. her memory and these remembered expeiences do give us strength and faith to understand that she chose us as her parents for a reason. we are forever changed, and without question better people to know her.  she had a passion for life.  she wanted to learn everything. she loved challenges. she wanted to play guitar, piano, she loved to paint, and most of all, she was eager help in the kitchen. the other thing i realized is that she had incredible memory. she recalled people, places, events- she would talk about when this happened or when so and so did or when we were…..it is astonishing.   

she had dreams, she had wishes, we had plans. she wanted a really, really, big swing so she could swing into the clouds like heidi. she couldn’t wait to go back to kindergarten and see all of her friends again. she wanted a garden birthday party again this year, this time only pink balloons. she was excited to attend ski kindergarten for the first time this winter. she would have been old enough to go to musikgarten as a graduate of the mommy and me group and was beside herself with joy that her little friend marlene would to join her too. she wished her brother could go with her to kindergarten- they share a love that i enjoy knowing.

it breaks my heart to talk about her in past tense- as crazy as it may sound, i often try not to do it.  we think of her every single hour of every day, she is so deeply missed and will never, ever be forgotten. happy birthday our sunshine, our little angel.

we were in the center of uberlingen. i had just picked up a letter from my doctor’s office and we were on our way to pick up bodensee apples to take to her team of doctors and nurses at a hospital in munich- it’s name will go unmentioned for now. she was released from this so called prominent medical center just thirteen days before- she had a follow up check up there the very next day.

i drove approximately 50 meters away from my doctor’s office when she started shrieking like i’ve never heard her before. i immediately stopped the car and went to her in the back. i cannot talk or write about what happened from that moment until help arrived. she died on the way to a local hospital although they gave up on rescuing her fifteen minutes after she arrived there and was then pronounced dead.

we have learned that she had a violent seizure from which she could not recover. i have been saying until now that she started dying in my arms but the truth is she had been dying for months according to the pathologist.

a supposed internationally renowned german hospital where she spent over four months sent us home with her dying and a slap in the face- slew of manipulated data and altered information on her release forms.

they failed, i believe on purpose to exclude a fatal disease. how can an entire team of medical specialists ignore to diagnose endocarditis after a patient has had a cv line in for over eight weeks???

sophia had full blown endocarditis that ate up her pulmonary valve, spread through her heart forming abscess in the cavity between her heart and lungs, through her lungs and into her bloodstream.

as if overwhelming grief and sadness isn’t enough, we are filled with rage and anger knowing her death could have been prevented. we are devastated and do not know how to overcome our loss- and what a loss. it is all we can do to function for our little boy, to help heal him for he too is damaged from his loss.

my husband told me the other night to please make sure that i let him die at home if ever he is sick. he said he would rather die than have these doctors play and experiment with his life like they did to our sophia. our faith in the german healthcare system is shattered. what happened to her, everything we saw, what was said to us, how she and we were treated we will tell in good time. no amount of money interests us- money will not bring her back and to not tell our story would mean she died in vain. we want every parent that considers to put their child’s life in the hands of these doctors at this hospital to know what happened to our sophia that they can make a better decision than we did- that they avoid making the mistake we made. 

it has been difficult to remember our sophia the way she was before we took her to this so called reputable health institution last february. i haven’t slept a full night for over six months and now that she’s gone i stay up all night thinking of everything she said and did when she was in that hospital. i cannot get off my mind her last four months. she cried so much from fear and pain- she was traumatized and with no doubt in my mind, i knew she would never be the same again. we were all so happy and relieved to be home with her- our biggest problem when we got home was how to heal her from everything she had experienced in her last four months- and we were ready to do it.

we are in austria. we have returned to montafon the mountain ranges in the alps that sophia fell in love with last year. all she talked about ever since we left here is how she wanted to go back to den bergen, the mountains. she especially loved the little village of gargellen, snug between a valley at 1423 meters and up on a mountain at 1966 meters. we were astounded at how perfectly she pronounced gargellen. i think she fell in love with it because it looked like the village where heidi lived with her opa.

oh how she fell in love with the mountains. she would run up ahead on a hiking trail, spot a rock, figure out a way to climb it and sit there waiting for us to catch up. then she would call out mach ein foto! take a picture!  and instantly flash a beautiful smile. she had always loved wild berries and when she would find some on the side of a mountain, we were immediately ordered to stop and take a break until she picked and ate as many as she wanted. exhausted at the end of each day, she and her brother without conflict or disturbance fell asleep soundly in the same bed in a room attached to ours- we were grateful and amazed- it was the first time they shared a room.

we have been desperate for memories of her. we have come here to remember her- to remember her the way she was before she we took her to that hell of a hospital. when we have been out hiking the last several days, i feel her walking beside us, in front of us, or tagging along behind. every now and then, i look to my side, up ahead, or turn to look behind. i whisper to her softly are you here? are you really here sophia? i get a warm feeling all over and can’t help but smile to myself for i really do feel her. i know she is with us. i know that she is always with us.