Funeral (Pt 2)

on Saturday, we held Soren's funeral. i had been antipicating and dreading this day ever since the thought of having it came to my mind. i knew it was something that i wanted to do for Soren, but the process of putting it together seemed daunting.

first, we had to make a number of decisions about the content of the service and try to make it meaningful and appropriate for us and for Soren. J and I were determined to have specific aspects of the service done the way we wanted them, which involved additional choices and preparations. on top of that we had to play host to my family under difficult circumstances. i saw all this as draining whatever emotional and mental reserves i had left. it was stressful, but i somehow got it together and just did what needed to be done and tried not to let anxiety or panic set in.

we had incredible support from my aunt and uncle, who are Methodist pastors and led the service. they guided us in putting the service together and made it possible for us to start with something meaningful and shape it to our own needs. i grew up in a religious household, and studying and memorizing the Bible was a big part of my upbringing. it was important for me to have Scripture readings that spoke to me. i read Isaiah 40:28-31 aloud at the service,

  Have you not known?
      Have you not heard?
  The LORD is the everlasting God,
      the Creator of the ends of the earth.
  He does not faint or grow weary;
      his understanding is unsearchable.

  He gives power to the faint,
      and strengthens the powerless.
  Even youths will faint and be weary,
      and the young will fall exhausted;
  but those who wait for the LORD
      shall renew their strength,
      they shall mount up with wings like eagles,
      they shall run and not be weary,
      they shall walk and not faint.

this Scripture tells me that the strength to carry on through these times comes from outside the normal physiology of metabolism and bodily function. it comes from your inner strength, the love of your spouse, your connections to your friends and family, and from God. this kind of strength does not fail you even if you feel physically and mentally beat down.

looking back, it was all incredibly worth it. so many people came, and not just our immediate families. my best friend from college came, J's good friend from college, our birth doula, and many people from my workplace as well. whereever Soren is now, if he could see what happened today, he would know how many people love him and his parents. and that makes me so happy and so proud to be his daddy.

there is a lot more to say, but it is late. J has posted one of the beautiful choral pieces we played during the service, Sing Me To Heaven, on her blog. the piece of music i chose for the postlude was an adagio by Schumann. it's been in my music collection for a long time. it's a slow piece of music, but i don't think it's sad. the tempo indication is Langsam mit innigem Ausdruck, which roughly means slowly with great depth of feeling. it evokes in me a feeling that life carries within it the potential for great beauty and great pain, often juxtaposed. i hope to post it later.

UPDATE: here's the music. the performance is by Heinrich Schiff (cello) and Gerhard Oppitz (piano).

Homecoming

i realize it's been a few days since i've posted here. i felt i owed at the very least an update on what's been going on.

the main news is that J and i are back at our house in Seattle. spending time with J's family was comforting, but a combination of factors led us to head home. as far as practical stuff goes our house had been empty for two weeks except for daily visits .. and there were a bunch of things that needed to get done that would be very hard to do remotely, like file our taxes (ugh) and take out the trash (ugh).

on a more emotional level i needed space! J's family spends their time quite differently from what i am used to, which involves more quiet time without a TV. and there are a bunch of other dynamics going on in her family which i am not going into right now. the upshot was i was really needing to be back in my home court so to speak so i could get my feet on the ground and start to move forward.

i knew this would be hard for J and it was ... we weren't on speaking terms for a little while once we got home but she/we are adjusting bit by bit.

surges of emotion hit me from time to time ... for the first time the other night i felt really, really angry. and frustrated. i was really angry at everything and everybody. angry that i was being put through this. angry at J for being a part of this. angry at our midwives for not protecting us from this. angry at God for allowing this to happen. and frustrated that time isn't passing faster so i can put it all past me. the anger passed, but for a while i just clammed up and kept it in.

okay, how about some good news?

J has been checking her blood pressure and her pulse got a little low so she discontinued her meds. a MFM doctor finally got back to her and said that was okay, so i guess she is officially off her medication. yay!

after originally planning on getting extensions on our taxes, i realized that you actually have to determine if you owe any taxes ... which means preparing them anyway. so i spent today with turbo tax and filed everything. and i got refunds! (the hard part of taxes was going through the boxes of papers scattered around our house and catching up on 10+ months of delayed filing... double ugh)

and, J booked a trip to Maui! we had talked about doing this before Soren came but between our money situation and the timing we never got around to it. well, better late than never! two weeks of sun and surf and a bit of an escape from our life of the past few weeks. and a chance to establish our life as a couple again.

the next looming thing is planning Soren's service. i have an email with a plan for the service i've been waiting on opening because i know it's going to require all of my emotional reserves to see it through. also, we will be picking up Soren's remains this week. wish me luck.

Birth Story

my feelings during the pregnancy moved among several different axes: nervous anticipation, confidence (hey, i'm a brilliant engineer, i can handle this), lack of confidence (am i really ready to become a father?), and finally determination (it's going to happen regardless. i better get ready!)

i had my first panic attack during the pregnancy. i never found out what triggered it. it was as we were coming out of a childbirth class, the class had gone well and there was no specific reason for it i can recall. maybe it was stress at work or some of my anxiety about becoming a father working itself through my system. it was scary, and there was another milder one later, but somehow i think of them as isolated incidents and not something that will happen again. but i do tend to be someone that worries about details so maybe they will though.

J had been concerned about the baby's movements several times during the pregnancy. i would check in on her when i got home from work and try to reassure her that everything was normal. in fact, because our prenatal appointments had gone so smoothly and everything was tracking normally the thought that something might not be right hardly entered my mind. i had a first bout of anxiety when we had our first NST. but it came out so well that it gave me even more confidence that things were going smoothly.

during the last week of the pregnancy she was concerned again ... i think i felt that the baby was shifting position or getting bigger or getting ready for birth so less movement was "normal". i took her into the birth center for the second NST and remember being surprised that the measured heart rate (110s-120s) was a lot lower than before. but the midwive seemed okay with it, and J seemed okay with it, so i let myself be reassured by it.

somehow i knew that J would go into labor that week ... i'm not sure why, but i think i was mentally preparing myself for doing my part - labor support, getting J to the birth center with everything she needed, making sure that the last few details of our house were ready for Soren. needless to say i was pretty distracted at work and don't even remember now what i was working on at the time.

J began having contractions on saturday night ... we tried sleeping but i was too anxious and J too uncomfortable. we stayed up watching movies while J timed her contractions on her iPhone (i bought her an application that helps). we paged our midwives on sunday morning and called our doula and got ready to drive over (we had packed the car already).

once we got to the birth center things seemed to progress smoothly if slowly ... J was coping beautfully and i traded off with the doula offering what support i could between naps. when it got into the evening i could tell that J was having a harder time with the contractions and i was also fading for lack of food and sleep. i stepped out to get a snack and when i came back J was asking for her membranes to be ruptured. i was a little scared of this and after i heard the midwife describe the meconium i knew that something was wrong from what J has told me about NICU work.

the next hour was a blur ... i threw everything into the car, drove J to the hospital, and with increasing anxiety watched the L/D nurse try to find Soren's heart rate while J begged for an epidural. when the OB announced that he couldn't find one with the ultrasound i was shocked ... numbed ... empty. i don't think i was thinking very rationally for the next while. i remember not wanting to leave J's side, but somehow needing to tell my parents what had happened, maybe just to hear a familiar voice instead of a doctor.

i stepped outside to call them, and don't know how much time passed but the next thing i remember is one of the other midwives telling me in a panicked voice that J was seizing. i ran to her room and was frightened out of my wits. she was convulsing and hyperventilating, and they were suctioning blood out of her mouth (she had bit her tongue, but i didn't know that, i thought it was internal bleeding). i could tell that she was not "there." the room was flooded with nurses and doctors who struggled to start a Mg dose. my only focus was on trying to give J something to focus on as best she could in her state. i looked into her eyes and told her to over and over again to look at me, that i loved her, and i was there for her. one part of my mind thought these could be my last moments with her. i am still traumatized by this memory and expect to be for some time.

the next thing i knew the seizure seemed to ramp down ... and she was pushing Soren out with intense uncontrolled contractions. i think the midwife realized before the doctors what was going on. the doctors didn't have time to arrange the table for the delivery and had to catch the baby without anything underneath. at this point something in my mind snapped and i became incredibly lucid ... i told the OB that i wanted to cut the cord, as we had planned, and they let me. i only saw Soren for a fraction of a second before they took him away. they asked J a few questions and it was clear her memory was impaired ... i had no idea what that meant and i was scared.

J birthed the placenta, and i asked them to not do any invasive testing because J had wanted to bury it and plant a tree afterwards. (we later changed our mind but J was totally out of it and i wanted her to be a part of that decision.) they gave her a few stitches which must have been very painful. i helped move her to the ICU and spent the night there. she gradually regained awareness.

they brought Soren, dressed in the clothes and wrapped in the blanket we had brought for him. we had picked two names for him but were waiting to choose until we saw him. the moment we saw him be both knew he was Soren. the photographer came and took pictures of him with us. i have never felt anything so beautiful and so painful at the same time as when i was holding him in my arms. we spent the night with him and then said our goodbyes.

at that point my story starts to re-converge with J's. J spend the next few days in the hospital. i stayed in the hospital with her, occasionally running errands or taking walks, forcing down food and trying to find a decent cup of coffee (never did). i think about a dozen different doctors came by. the nurses were all very kind, some were simply beautiful and amazing human beings who were a ray of light in a very dark place. i spent a long hour in the hospital chapel praying and asking God a lot of hard questions and not getting many answers. it's all a blur now.

this was really long, but already my memories are starting to fade a bit and i wanted to capture as many of the important pieces as i could. looking back on it now my optimism feels like naivete. i had no idea that new life hangs by so thin a thread. if and when there is a next time, i have no idea how i am going to control my anxiety. i am trying to tell myself not to jump that far ahead yet and to take things one step at a time. i know we'll get there because J is the strongest and bravest human being i know.

Gameplan

now that the initial shock has subsided a bit, J and i are trying to get some grasp of what our lives will look like without Soren. and we are very afraid. we are still staying at her mom's house, because the thought of spending days and nights in the house we prepared for him is still a bit too much.

J's family did a very kind thing. they went over to our house while we were in the hospital, and carefully put away Soren's things - the crib, the changing table, the clothes, the strollers. it makes things easier ... sort of. the house feels eerily empty without seeing those familiar things around. and that emptiness is just as much a reminder of him as the things themselves are. it's going to be a huge adjustment to accept our "new" house for two.

then there is the fear of time ... after the things that need to get done get done, what do we do? our entire vision of our future days was centered on taking care of Soren and finding a rhythm and routine of care for him together. now what happens to those empty quiet spaces in the day? what do we talk about? do we talk about Soren and bring back our grief? do we not talk about Soren, even though nothing else seems worth talking about? we have to find a new routine that will keep us functioning, keep us together, and prevent us from going into a deep dark hole. J and i have pledged to watch each other for signs of depression. maybe it's not a question of whether, but of when and how badly. i just don't see living a "happy" life for quite some time.

we have our first session with a therapist tomorrow evening. i think there are so many issues on the table for both of us that it is going to take an hour just to figure out where we are at. the therapist comes recommended ... we'll see how it goes. i have never been to "official" therapy before. maybe he will work miracles.

Mystery

today we are meeting J's primary doctor at the hospital. we might get some answers, or we might not. it's pretty nerve wracking. we saw about 12 different doctors while we stayed at the hospital and there is no way i can even remember all of their names. our primary doctor is one of the specialists in their high risk Ob/Gyn group. she performed the confirmatory ultrasound and helped deliver Soren. she stayed an extra shift with J the first night in the ICU and did her best to comfort our fears in the first few hours.

according to the information we have, the current theory is that J had asymptomatic preeclampsia, the kind that doesn't manifest itself in high blood pressure, swelling, proteinuria, or the other typical signs. all of J's prenatal appointments came out fine. there was one appointment where she had elevated blood pressure and a trace of protein. but she had complained of dehydration that day and everything was fine afterwards. it wasn't enough for anyone - our midwives or the OBs who looked at our charts - to suggest that something was wrong.

even today's appointment isn't the end. they will need to follow up in six weeks to do some additional bloodwork after J's postpartum hormones have settled down. also the autopsy and karyotype results will take extra time to come back. it's like a replay of our infertility treatment, where we went for test after test only to get a trickle of information and few conclusions until the end.

all this creates a huge cloud of my doubt in my mind about the state of medicine and midwifery. what other undetectable problems might affect J or any future pregnancy? if they can't detect preeclampsia reliably should we be paranoid and demand all precautions next time? if we had gone with an OB instead of midwives would they have found it? if we had known we might have been able to save him. and i trusted our midwives completely to tell us if anything was wrong. and they said everything was fine until the very end.

Update: the appointment didn't shed a ton of light on things. the doctor thinks that there were underlying problems in the development of the placenta, and that J had an infection when she went into labor, which may have contributed to her seizure. the good news is that they took her off one of her blood pressure medications. i was hoping they would take her off all three but i guess they are playing it safe.

Funeral

J and i are doing something no one ever expects to do - planning a funeral for our own son. after the birth a number of difficult decisions had to be made. what do you do with the placenta and your son's body? how do you pick a funeral home?

originally J wanted to keep the placenta and later bury it in the ground, then plant a tree on top of it. remembering her wishes i asked the doctors not to do any invasive or destructive testing of the placenta. i think they took some swabs for some cultures but that was it. once J came out of her post-seizure fog and had a couple of consults with our doctor we sort of understood that whatever clues were to be had about our son are probably going to come from the placenta, so we allowed them to do a full pathology on it. it was sad to let go to a part of the body shared by J and Soren (or anything connected to Soren), but we knew that we both wanted any answers that were out there for what happened.

a similar decision had to be made for the autopsy. without any discussion we both knew that we wanted cremation, which i guess makes the concept of an autopsy a little easier to deal with. our doctors advised us that the "yield" was low, which means that there is a good chance that it will tell us nothing we didn't already know. but J has seen enough cases of serious issues that don't manifest themselves externally. we both agreed to an autopsy and a karyotype (genetic screening).

the hospital pushed me to pick a funeral home ... how is one supposed to do that when you are in an ICU, no Internet, no sleep for 36h, not going to leave your wife's side for any reason and just dealing with basic emotional/physical/mental survival? i ignored them for a while until i got my laptop back and looked up some information that i could show J.

we narrowed it down to two choices, based on location and reputation. problem is, one of them is visible from my office window! we chose (what we thought was) a family-owned home in the Ballard neighborhood. so far, so good. the funeral director has been compassionate and explained everything clearly, including our options and costs. it helped that J and i spent a little bit of time in the hospital talking about what we wanted. J even went to the first meeting with me, which was difficult for both of us and tremendously brave on her behalf.

(it turns out that most Seattle-area homes seem to be owned by a single firm, Bonney-Watson, but they don't really advertise that. go figure.)

my aunt and uncle are Methodist pastors. they baptized me and my brother. they married me and my brother. they flew up just as we were getting out of the hospital and went with us to the funeral home, and are going to deliver the service for Soren. they are tremendously kind and have their own way of looking at the world but at the same time will respect our wishes for Soren.

i know the service will be difficult. i do not expect "closure" or "putting it behind me" or anything like that. there was a very real temptation on my behalf to do something quick and expedient, something with little family and no friends, to get it over with as quickly as possible. i think looking back doing something inclusive will be the right thing to do, for us and for Soren.

tonight, J and I picked out some photographs to send with Soren as he is cremated. there are photos of J and I at our wedding, on our honeymoon, and sitting on the steps of the Seattle home as we moved in, probably taken right when he was conceived. there are pictures of J's pregnant belly. and we wrote a letter to him telling him how much we loved him. after looking at his pictures, this was almost too much for one day.

to the letter, i added a quote that someone on the mothering.com forums had sent to J. i thought it was beautiful.

Every soul that comes into this world comes here with a very specific mission. When that mission is completed, the soul can leave. The holiest of souls need so little time here in this world that some never even make it outside the womb, others only need their heart to beat once, others not even that.

Rabbi Yitzchak Ginsburgh

Speechless

i am not quite sure how to start this, but i figure that i should start somewhere and let it flow from there.

a week ago, on march 29, my son, Soren Emery, was born. his birth was the most frightening and saddest moment of my life.

the morning of the 29th i drove my wife to the birth center full of excitement and hope that i would soon meet my son. the night of the 29th was spent in hell, in the intensive care unit with my wife J seriously ill and my son gone forever.

just before Soren was born, J had a seizure and does not remember his birth or what happened immediately afterwards. i was in the room for the end of the seizure and his birth. i already knew that my son had been lost. in that moment i thought that i might lose J as well. the hospital staff were able to stabilize J and she came through okay. the memory of that half hour is still far too fresh and traumatic.

the first night was spent in the ICU with J. the nursing staff at the hospital were tremendously kind. they dressed Soren in some of the clothes J had brought to bring him home and brought him to us, so we could spend the night with him in our room. a photographer from NILMDTS came and took pictures of us with Soren. i looked at the pictures for the first time an hour or two ago. it was tremendously difficult but brought such joy to my heart to see my beautiful son again.

we don't have any real answers yet as to what happened. we may never get conclusive, hard truth about the chain of events that led to this. that would be difficult to accept, but that challenge is down the road a bit.

right now my agenda is about taking care of J and myself the best i can. i am pretty task oriented and doing things like starting this blog, making arrangements for Soren's service, and even doing yard work for her mom feel like progress. but there is a whole emotional side that i am just scratching the surface of. numbness for a good part of the time. sadness, yes - more like a overwhelming heaviness of the heart that casts my shoulders low and my eyes downward. anger at our care providers. guilt. fear about the future and whether i will ever become a parent to a surviving child. stress and upset at dealing with our families, mine and J's, for different reasons.

what i told someone in the first couple of days afterwards was that there were two ways of looking at it. the first was that this had stolen my chance at becoming a father, of watching my son grow strong and tall and teaching him many things. the second is that i was a father and will always be a father to Soren Emery, that i will always carry him in my heart and he will teach me how to be a parent. the first way is how i feel, the second way is what i try to tell myself.