Journal Red Warrior's Journal: "Sitting here alone, digging up bones 14
Exhuming things that's better left alone."
(If you recognize the lyrics, you're a hick. Just so you know.)
I was gonna save this for the 18th, but was unsure how busy I'll be with the mobilization.
2:00 PM Saturday, February 1, 1997. That was the last time I entered a church for longer than it takes to drop off/pick up my son. Specifically, St. Vincent de Paul Catholic Church in Federal Way, Wa.
The occassion was the funeral mass for my daughter.
Kyrianna Marie S.
Nov 18, 1996 - Jan 29, 1997
In 1996, my X (then current, obviously) was pregnant with our second child, my daughter. In August, the X started worrying. The baby didn't seem to move around as much as our son had. So we went in for tests. More tests. referal to specialist. (Tanya Sorenson. Works/ed out of Swedish medical center. Highly recommend for high-risk OB/GYN stuff). More tests. Yet more tests. For some reason, baby was not getting enough oxygen to her tissues, and was therefore not developing normally. Not "normal" anemia, because mom was fine.
Counseling about "options". Abort or hope. We chose the latter. interuterine transfusions were started, about every 5 days or so. Yes, the baby was receiving transfusions, through mom, through the uterous, directly into baby. Eventually, it was decided, around the middle of November, that it would be less risky to baby to deliver premature and continue treatment directly, instead of going through the womb.
Somewhere in the middle of this, I go to drill. My commander notices that I'm distracted & not up to normal standards. After brief discussion, I am ordered to "detached duty" until further notice.
On November 18, inducing labor failed. It was decided that it was still safer to do a C-section than to continue the pregnancy. C-section was done. I watched. I managed not to pass out, or lose my lunch. Nurses seemed to have (justifiable) doubts.
Kyrianna Marie was born at 9:00 PM, 5 lbs even, 17.25"
Kyri was immediately put on a ventilator. vitals weren't holding. Doctors quickly, within 20 minutes, decided that Swedish wasn't up to the job. X hadn't even made it to recovery, IIRC. Transfer to Children's Hospital was required. So it happened. Just to add to the mood, November 18, 1996 was a freaken' blizzard in Seattle. Or as close as I've ever seen here. Kyri was put in the IICU (Infant Intensive Care Unit). She had her own nurse 24/7. They attached a ventelator. And an IV nutrient drip. And sensors. And this. And that. And the other thing. I shuttled between the two hospitals. Sometime on the 20th, X was released (under doctor's protest) from Swedish. Also, sometime on the 19th, our parish priest showed up, did a baptism and the prayer thing.
The move to Children's didn't magically make her better. It did, however, give her the best care in the region. We got another "options" speech. We could "treat less agressively", if we wished. We didn't wish.
A quick check-in with work and I was on FMLA. Spent my time shuttling between the hospital and home, home and the hospital. Slept more in the waiting room than at home, though. Home was too far, and the always present fear that something might happen while on the road.
The doctors could explain Kyri's symptoms in great detail, as could I after a day or two. Her blood couldn't seem to hold/trasport enough oxygen to nurish her body. They couldn't say why. Or how to make it all better. It was a right interesting case, I gathered. Especially when two doctors mentioned in my hearing that it would be a good case study for a medical journal...grrrr.
We attempt to take a few hours out for thanksgiving. Too distracted. back to the hospital. Our son is being watched by either my (now disowned) sister, my mom, or my grandparents. We are trying to maintain some sense of normallicy for him. Fail, I'm sure. He basically seems to understand that his baby sister is very sick, and mom and dad are very worried. Not bad for a not-quite two year old. We are basically living at the hospital. Going home every day or two, just long enough to shower & change clothes. Steady stream of family and friends wishing well. One of my good friends, a nurse, trys to be supportive, yet "realistic". Fails.
The ventelator seemed to be just almost doing the job. Spontaniously snapping out of it didn't seem to be happening. Around the 1st of December, another options speech. Same answer. It was suggested that it might be worthwhile to try the (then at least) experimental ecmosis (sp?) machine. Basically, a big blood pump/filter. Blood leaves body, toxins are removed, ludicrous amounts of oxygen are added, blood enters body. This was/is risky because it requires a blood thinning agent be added to keep the blood from clotting up and gumming up the machine. This is risky because it is easier for thinner blood to leak out of the veins/capilaries, especially in the brain. This is risky because it can put pressure on the brain and cause damage thereto. We decided to do so. I think you can already see where this is going. Her stats seemed to improve somewhat. Docs wanted to do a "just to be safe" MRI/CAT scan (I don't remember which it was). Sure enough, there had been vein/capilary leakage in the head. Sure enough, there was intra-cranial pressure (on the brain). Sure enough, half of the brain had been pushed over the centerline.
Again, the "options" speech. Here, the X and I started to have different views (JE for another day: "ensuring that you have the same value system as prospective spouse"). Eventually decided to treat agressively. Kyri taken off ecmo machine. Surgury to releve pressure on brain successful. Scans indicate all the bits bounced back to where they belonged. Scans indicate less brain activity than might be expected.
Again the "options" speech. Spelling out that there appeared to be extensive brain damage. Grudging admission that knowledge of neonatal brain development still in infancy (pun intended). Odds of 95%+ that if Kyri survives, she will be in a permanent vegitative state. X torn. I'm not. I get my way. We treat agressively.
Christmas comes. Christmas goes. New Years comes, New Years goes. I had been very afraid she would die on one of those days. She doesn't.
Also at this time, I was notified that I was being laid off. This wasn't in retaliation for FMLA. The mutual fund company that I was doing customer service for had been bought by GE Financial about 5-6 months earlier, and was laying people off in droves. I was one of the most recent hires, and they were going by seniority. In fact, I had volunteered to be one of the first out. Because 1) I would be regardless and 2) they were giving better severance to volunteers. In any case, my group of 6 went to two, and then to none within 3 months. So I suppose I can't hate them for laying me off while my daughter was fighting for her life. Much.
Eventually, she starts to stabalize, though her brain activity is still low. It is decided that she is stable enough to move out of the IICU. I forget the name of the new ward. Instead of one nurse-one kid, it is now one nurse -three/four kids. We are able to hold her a lot more. She seems to respond to it. On January 5, while in my arms, she opens her eyes. We get a picture of it. That picture is on the mantle in my living room. I'd though it was a turning point. Maybe it was. The only other time she opened her eyes, was in the IICU, when we weren't there. (The nurse snapped a poloroid, thougth.)
Kyri has been in the "less intensive care ward" for about 14 days, when I notice that her pulse is slower than normal, and her breathing shallower. The nurse, however, knows better than the hypochondriac parents. The intern has more sense, and checks the chart/case history, and consults with the IICU nurses. Tests are run. Kyri is moved into an isolation room, as she has RSV (Respiratory Synctial Virus). Sort of a cross between a cold and pneumonia In an otherwise healthy child, it seems like a minor cold. She is not an otherwise healthy child. Again, the "options" speech. Again, the same response.
She struggles with the RSV for about 10 days. I'm holding and rocking her at about 9:00 PM on January 28. I've been noticing that her breathing has been getting slower and shallower for a while. Suddenly, all the alarms in the universe start going off. I don't jump. A number of nurses and the intern do. They come running in. The intern quickly whips them into line & very solicitously asks me what I'd like her to do. I somehow indicate (I don't think it could be characterized as "say") that it would be swell if all the alarms were turned off, and all the wires, tubes, etc. could be removed, so that I could hold JUST my daughter.
Sometime around 11:00 PM our parish priest shows up and does the last rites. I vaugely recall prayers & words intended to comfort.
At 1:00 AM, the 29th, the intern comes in quitely, and asks if it would be OK if she, well checks Kyri's vitals. She doesn't want to intrude...(She has/had an excellent bedside manner for someone just out of med school. Maybe because she was just out of med school?) The official document lists the time of death as 1:10 AM January 29, 1997. She had been still for quite some time by then.
We went home and collapsed then. We saw her one more time, on the 31st, just before her cremation. She was cold.
The next day was the funeral mass. After it was over, I walked out of the church.
Sometime during the next week (I could look up the date, but I don't want to), the X and I head out to the Pacific Ocean. We release a bunch of those oragami swans. We wade out into the ocean, and release her ashes. We'd decided we didn't want there to be a grave or a piece of ground to go and be sad at.
The next week we put on happy faces for my son's birthday party.
Then I had to start looking for work.
Financial fallout ensues.
And no, I don't happen to think it's better left alone. Though that would be easier.
Why do I share this with a bunch of anonymous strangers? Shrug.
my mastery of the english (or lack there of) ... (Score:2)
-Ab
It isn't for us, it's for you. (Score:1)
I felt the same way when I talked about my dad.
Man, I can't imagine what that pain would feel like.
I am sorry for your loss. Empty as that may sound, you have affected one anonymous person out here in cyber-land.
They say there is nothing worse than losing a child. I can't imagine.
Re:It isn't for us, it's for you. (Score:1)
I imagine SlothDog could understand pretty well, but I can only barely imagine. I remember almost losing my wife after we got married, and how hard that was, but I still have her, so I don't think I can really compare that. Anyhow, I'm so sorry, and am always here to listen.
The Manliest of Men (Score:2)
As for why you share. Well, there's no telling. But on a certain level, we really care for you. Thanks for being vulnerable to us,
Words will never be enough... (Score:2)
I've been at the edge of a bottomless pit myself, with regards to my own health, and as much as that tore me up and turned my life on its head I can't imagine that it was even half as painful as your loss.
I'm not a parent yet. The closest I can claim to be is a loving uncle. I have several nephews and nieces, one of with whom I share a very special bond (I'm his favourite uncle, and when he's lonely at n
Support (Score:2)
support my friend. Its pretty simple I think. Same reason I write about my mom and my current problems with my dad and brother. Because to not express this stuff is to let it eat away and tear at your flesh until you are just a walking skeleton of repressed feelings.
Its also safe here.
I absolutely hate January and February. Those were the two months my mom spent in the hospital after her Leukemia decided to go into its "blast" phase.
Oh happy days.
Sharing helps... (Score:1)
Perhaps you were motivated to post about this in the same way I was motivated to post a JE about my grandmother passing away and the way I have been feeling the last few days. There are not words to help you with any of this, but I imagine other people having been through terrible things helps. Knowing that you are not alone helps.
I don't know. Or it could be that it is easier to put down these ideas and emotions in a place where you have
Thanks (Score:1)
Re: (Score:2)
Re:I can't think of a useful title. (Score:2)
I don't know about useful titles, but a damn good summary.
I don't pray, but my wishes go out to your sister, sister-in-law, and all ther rest.
Re: (Score:2)
I feel sad for your sake. [!comment] (Score:1)
nothing (Score:1)