Posted by Phet
One of my friends sent me a link to a music video to let me know that I am not alone in my grief and pain of losing Emma. I thought I'd share it here. The song is "Who You'd Be Today" by Kenny Chesney interpreted using sign language.
It pretty much describes how I feel. We love you Emma. Happy birthday sweet angel.
Phet and I had a picnic with Emma today. It occurred to me that we haven't posted a picture of her gravestone yet, so here it is:
Here is more of a medium shot which includes the enormous gaudy flamingo we just put up for her. Just because you are in a cemetery doesn't mean that you shouldn't have things to look at.
Our thanks to everybody who has commented and sent along remembrances of Emma. She was an amazing little girl. We miss her every day.
We're heading into Emma's birthday weekend. To help herald the big day, it seems somehow appropriate to take the Remembering Emma DVD we put together for the funeral and to place it on the Dispatch. So, without further adieu…
Get Flash to see this player.
Tomorrow afternoon, we are going to go down to the cemetary to see Emma, tell her how much we love her, and to sing her Happy Birthday. We'll let you know how it goes.
PS. You should be able to play the video if you have a reasonably new version of Flash (and a broadband connection, of course - don't worry, Mom and Dad have the DVD at home). If you think you need to upgrade your version of Flash, you can try doing so here.
PPS. I apologize that the video is rather jerky - encoding these things is sort of an inexact science. I'll keep tweaking it to see if I can make that better…
Thanks again to everybody who has contributed or has expressed interest in contributing to the Emma Pease Fund. We have received a substantial number of contributions from our family and friends, and we really appreciate the opportunity to help other families with sick kids. I just wanted take a second to address a couple of questions that people have asked over the last couple of months.
In determining how to divvy the funds, we have been trying to determine how to most directly improve the experience of other families who may be in a similar situation to what we were going through with Emma. Our current thinking is that we are probably going to be dividing the funds between three parties, in roughly the following proportions:
40% San Diego Children's Hospital, earmarked for Cardiology
It's absolutely no overstatement to say that the cardiologists at Children's gave us the nine months we were able to spend with Emma. Emma's early prognosis (from the first two hospitals that saw her) was grim nearly the point of hopelessness. The doctors at Children's were great.
40% San Diego Children's Hospital, earmarked for the NICU
Emma spent an awful lot of time in the NICU, and we love to think that we can directly contribute to potentially making the environment more friendly and comfortable for other patients and their families. We always thought it was great when the NICU nurses would give Emma a new toy for her crib or put on a video for her. They also had rocking chairs that made visiting the NICU for long periods much more comfortable.
20% The Children's Heart Foundation
When we first sat down with the doctors at Children's to learn about Emma's condition, they handed us a book called "It's My Heart" from the Children's Heart Foundation (unaffiliated with the hospital itself, I think), which we found to be pretty useful. They also fund research initiatives and that sort of thing for children's cardiology concerns, but I was most impressed with the real impact their foundation had with assisting our early understanding of Emma's condition. That's no easy trick given the complexities of these conditions.
Donations will be made in remembrance of Emma Pease. Both of the above organizations will provide receipts for your donations (we will let them know how to contact you), meaning all donations to the Emma Pease Fund will be tax deductible. In order to make the 2007 tax year, we will make all donations in the first week of December, meaning that all donations to the Emma Pease Fund should be made by December 1 (if you really want to donate, but need us to wait a few days after the first for some reason, please let us know ASAP and we'll figure that out.)
If your employer matches charitable donations, then it may complicate matters to go through the Fund, since we aren't really equipped to fill out whatever weird form may be required. In these cases, please feel free to donate via your employer to any of the above concerns as you see fit. You should still be able to mention that the donation is in remembrance of Emma, which will entitle you to an appropriate measure of good mojo.
We are not going to be soliciting donations in 2008, so this will sort of be it as far as the Fund is concerned. Obviously, we encourage everybody to donate to the above concerns every year until the end of time, should you care to.
Sorry for the dry nature of this update. I promise I'll update with some more Emma-tastic items soon.
P.S. Also, just to get all the groveling out of my system at once, I should probably mention that Child's Play is back in action this year. Child's Play is a charity that let you select and buy toys that go directly to kids in Children's Hospitals all over the world. Last year, they raised over a million dollars, which is phenomenal for a couple guys who write and draw an incendiary online comic strip. Check out the charity website for more information.
Today was a long day. Phet and I were struck, both by the sadness (and finality) of the occasion but also by the phenomenal outpouring of love that people (friends, family and strangers alike) demonstrated for Emma. The kindness that people have shown us has dwarfed all expectations. Thank you, everybody for all of your help and support. We truly, truly appreciate it.
Phet and I are both feeling very drained, so we're going to go away for a couple of days to look at the ocean. We'll be back soon to follow up with you all soon. In the meantime, here is a link to the funeral pictures, taken by our good friend Brent. Thanks Brent - we love them.
We'd like to thank our terrific friends and family for all of their help and kindness over the last few days. The outpouring of love for Emma and our family has been tremendous, and the support has been extremely appreciated over these difficult days.
Emma will be buried at El Camino Memorial Cemetery in the Mira Mesa/Sorrento Valley area of San Diego on Friday, August 24 at 11:00 am. The ceremony will be at her graveside. We know that Emma touched a lot of people during her short life, and we welcome anybody who would like to attend the ceremony. We would also like invite everybody to convene at our home after the funeral to celebrate our daughter.
Directions to the Service can be downloaded here. The PDF contains maps to get to the cemetery as well some idea of what to do what you get there. Basically, once you get to the cemetery, you will take the second left, then take the next left. Emma's location will be up a little hill on your right - look for canopies and stuff. The area is called Vista Del Valle - I've indicated the location on the cemetery map with a big X.
Our new address is 10556 Dabney Drive, San Diego, CA 92126 for those who need it for whatever reason.
We have set up a fund for donations in lieu of flowers. If you are interested in donating to this fund, checks can be made out to 'Emma Pease Fund' and mailed to the address above. We ended up going this route because there are several places we'd like to donate to (since Emma's condition was complex enough to span various disciplines). The donations will be directed towards Childrens' Hospital as well as childrens cardiac research and Turner's syndrome research, but we're still in the process of determining the exact organizations to which we will be donating. We will be driven both to try to help concerns to prevent and fix Emma's various conditions, and also to help comfort other families who may still be going through a similar experience with their kids. Our deepest thanks to everybody who has expressed interest in this sort of thing.
We are sorry to announce that our Emma passed away today. After her cardiac arrest on Tuesday, the doctors determined yesterday that she had started bleeding in her brain due to the ECMO treatment that they had placed her on. In order to prevent the bleeding from spreading, they would have to pull her off of the treatment that was, in some sense, keeping her alive. They told us yesterday that her condition was grave and that we should call in our family to see her, since chances were excellent that she would not survive the transition off of ECMO. Of course, Emma being Emma, she did fine during the procedure to take her off of ECMO, and everybody was able to breathe a small sigh of relief late last night.
Unfortunately, this morning the doctors did an EEG and an ultrasound and determined that the bleeding had spread significantly and Emma's brain function had been severely damaged during the 30 - 40 minute resuscitation on Tuesday, much more so than had initially been expected. The choices that were available to us were extremely limited.
We spent the day at the hospital with her and our closest family. Phet was able to hold her in her arms for several hours while we said our goodbyes. This evening, we hugged the nurses who have been so instrumental in giving us the last nine months to get to know our daughter. And then we left and went home.
The last nine months with Emma have been the richest as well as the hardest of both our lives. Emma, thank you so much for fighting so hard for us. We treasure every second we had with you. We love you, little girl - thank you.
It was a scary day. We got a call from the hospital at about 1 in the afternoon. The doctor said that Emma had taken a turn for the worse and that we should both come to the hospital right away. She didn't want to give us any details over the phone since the situation was still developing.
When we got to the hospital, a doctor met with us in the social worker's office and said that Emma had had cardiac arrest, and the doctors were working to stabilize her. It wasn't the normal controlled presentation that you get from a medical professional with bad news - at that point, there was very little the doctor could tell us for sure. "She's alive." the doctor said.
The last couple of days have actually been quite good for Emma. Her cultures have been negative for her aspergillus infection for the past week, and her oxygen levels have been good. What apparently happened today was the heart surgeons thought she was doing well enough that they could completely close her chest after her shunt procedure a week and a half ago. After they closed her chest, everything seemed to be going fine as far as Emma's oxygen levels and heart rhythm. Then, two hours later, Emma's heart started to fibrillate and soon after that she "coded", which is fancy hospital speak for "her heart stopped." It's not really clear if the closing of the chest and the cardiac arrest are related or if it was coincidental - Emma's good blood gases after the procedure would imply that there may not be a solid link.
The doctors tried various means to get her heart back to a sensible rhythm, but after 30 to 40 minutes of CPR, medication, heart massage and pacemakers, the decision was made that Emma should be put back on ECMO (a machine that does the work for her heart and lungs) to take some of the stress off of her system while things stabilize. So in some sense we're back to square one as far as Emma's recovery. This is definitely disappointing, but as our time in the social workers' office this afternoon made clear, this post could have definitely had much worse news had things gone even slightly different in the NICU today.
So Emma is back to being more or less stable in the intensive care unit. A new concern that comes from today's episode is that there might have been some sort of neurological or other organ damage from Emma having poor oxygenation while her heart wasn't functioning normally. The doctors are going to go through a battery of tests over the next couple of days to get a better picture of those systems - so far there hasn't been any specific behavior from Emma to suggest that something is wrong, but this sort of thing is always a concern when a patient goes through this sort of an episode. As always, we're optimistic that she will be okay.