We will be having a gathering at our house on Saturday, April 18th from Noon to 8:30 PM. Please drop by anytime in the afternoon to say hello and see Marion’s memorial garden which we built. Everyone, including families and children, is most welcome. Feel free to stay 5 minutes or all day. No gifts please, dinner will be a potluck. (Dad and a couple friends will be working from 10-4 on some painting, gardening and woodworking tasks if you enjoy that sort of thing then wear appropriate clothing)
If you would like to come from out of town we do have a guest room or you would be welcome to come any weekend and see the garden and visit at your leisure. Please give us a call if you are thinking of coming for the 18th.
Our thanks go out to anyone who is considering making a donation in memory of Marion. It is not expected, but would certainly be appreciated.
We have three organizations which we would like to honor:
The Family Resource Center at the Dell Children’s Medical Center
Marion spent her last 3 weeks at the Dell Children’s Medical Center where she received wonderful care from a talented team of doctors and nurses.
The family center will use the funds to buy books and DVDs for children at the Dell center. Email me if you would like to buy or donate specific movies or books for lists of desired volumes. (jeff.sumner@gmail.com)
http://www.childrensaustin.org/?nd=donate_summary
Select Dell Children’s Medical Center of Central Texas
Enter subcategory Family Resource Center
Lady Bird Johnson Wildflower Center
- In lieu of flowers, you can give flowers and trees
https://utdirect.utexas.edu/nlogon/vip/ogp.WBX?menu=JW**
St Baldrick’s Foundation
- The mission of the St Baldrick’s Foundation is raise awareness and funds to cure kids’ cancer by supporting cancer research and fellowships. Jeff shaved his head to support this organization.
http://www.stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-331514
Thank you all for your compassion and prayers for our beautiful daughter Marion.
Friday, March 27
Wednesday, March 25
Moms Miracle Milk Part 2
So Marion was not able to benefit from mom's miracle milk but there are lots of other preemie babies and other sick babies that can benefit. Austin has a Mothers Milk Bank that I am being screened for to be able to donate all that we had saved (I did the math and that would be roughly 5 gallons worth -go me). Marion received numerous blood and platelet transfusions and while I have not donated blood, I am glad my efforts for her will be able to help out others and get them started on girl scout cookie essence early.
Sunday, March 22
Happy 40th Anniversary
A huge congratulations to my parents who celebrate their 40th wedding anniversary today.
Sarah's parents also celebrate their 40th this year. We are so lucky to have such wonderful parents, thank you for everything you have done for us, and continue to do for us.
Sarah's parents also celebrate their 40th this year. We are so lucky to have such wonderful parents, thank you for everything you have done for us, and continue to do for us.
Saturday, March 21
Shaved Head
First, thank you all very much for all the calls and posts of well wishes. It means more to us that we can properly express.
My nephew Wes summed it up nicely when he said "I'm really sad about Baby Marion."
Wes shaved his head for baby Marion when he heard about the St. Baldricks benefit for cancer research which I was participating in.
The shaving event happened today and over 120 people shaved their heads. Thank you for all who donated for me and also shaved your heads. These folks included many women, children, firefighters and police, cancer survivors, families of cancer survivors and patients, lots of folks who work in the hospital, and my group, families of cancer casualties. It was a very moving day.
Before...
Yes, like I said... it was very moving.
And after...
Many members of our immediate families have come to town, and my father and I (and others) have been working hard to transform a rock pile in our backyard into a memorial garden for Marion. We are planning on have a small ceremony with our families on Sunday and planting a weeping cherry tree in Marion's honor. After pictures will follow.
Many people have asked about a memorial service and coming to visit and we are thinking about having a gathering here at the house in a few weeks, we will let you know.
My nephew Wes summed it up nicely when he said "I'm really sad about Baby Marion."
Wes shaved his head for baby Marion when he heard about the St. Baldricks benefit for cancer research which I was participating in.
The shaving event happened today and over 120 people shaved their heads. Thank you for all who donated for me and also shaved your heads. These folks included many women, children, firefighters and police, cancer survivors, families of cancer survivors and patients, lots of folks who work in the hospital, and my group, families of cancer casualties. It was a very moving day.
Before...
Yes, like I said... it was very moving.
And after...
Many members of our immediate families have come to town, and my father and I (and others) have been working hard to transform a rock pile in our backyard into a memorial garden for Marion. We are planning on have a small ceremony with our families on Sunday and planting a weeping cherry tree in Marion's honor. After pictures will follow.
Many people have asked about a memorial service and coming to visit and we are thinking about having a gathering here at the house in a few weeks, we will let you know.
Thursday, March 19
Marion Isabella 02/16 - 03/19
Marion passed away quietly in her parents arms this evening. She had developed an infection, which with her weak immune system she was unable to fight off. We are devastated and broken. She was very well loved by many during her short time here.
What's in a name?
Marion had a good night, and she's got a masseuse now! Spoiled already.
White blood cells back up to .1 today, bilirubin is down significantly ;)
"What's in a name? That which we call a rose
By any other name would smell as sweet."
Where/how did we come up with Marion Isabella?
Marion: Knowing Sarah was pregnant, we spent far too many hours thinking about names. Largely, I tried to delay discussing them until we knew the sex, but was none too successful. My strategy was to reduce the huge number of names in the world into smaller sets, and only consider names in those sets. Sarah was willing to play along with my insanity, as long as she loved some of the names. Three of the main sets I used were French names, family names and plants.
- Marion is a French name.
- Marion is a variation on Mary Ann, my grandmother.
- Marionberry is a variety of blackberry. (They are my favorite, when going for walks with me around ripe blackberries plan for extra time and don't bother bringing food.)
As Sarah says, "We're bringing it back!"
Isabella:
Well, we had some ideas, but had just started discussing middle names on a drive back from Houston to Austin. Since Marion can also be a boy's name, we wanted a middle name which was distinctly female. We bandied a few of them back and forth, but then Sarah's "Braxton Hicks" contractions were bothering her and so we just listened to the radio. The next morning, in the hospital, I asked, "So um, for middles names, we both liked Isabella, right?" "Love it," Sarah replied.
About an hour later, Marion Isabella was born.
I suspect the fact that we had both read Twilight by Stephanie Meyer that weekend may have had an influence on us. (The protagonist is Isabella Swan)
White blood cells back up to .1 today, bilirubin is down significantly ;)
"What's in a name? That which we call a rose
By any other name would smell as sweet."
Where/how did we come up with Marion Isabella?
Marion: Knowing Sarah was pregnant, we spent far too many hours thinking about names. Largely, I tried to delay discussing them until we knew the sex, but was none too successful. My strategy was to reduce the huge number of names in the world into smaller sets, and only consider names in those sets. Sarah was willing to play along with my insanity, as long as she loved some of the names. Three of the main sets I used were French names, family names and plants.
- Marion is a French name.
- Marion is a variation on Mary Ann, my grandmother.
- Marionberry is a variety of blackberry. (They are my favorite, when going for walks with me around ripe blackberries plan for extra time and don't bother bringing food.)
As Sarah says, "We're bringing it back!"
Isabella:
Well, we had some ideas, but had just started discussing middle names on a drive back from Houston to Austin. Since Marion can also be a boy's name, we wanted a middle name which was distinctly female. We bandied a few of them back and forth, but then Sarah's "Braxton Hicks" contractions were bothering her and so we just listened to the radio. The next morning, in the hospital, I asked, "So um, for middles names, we both liked Isabella, right?" "Love it," Sarah replied.
About an hour later, Marion Isabella was born.
I suspect the fact that we had both read Twilight by Stephanie Meyer that weekend may have had an influence on us. (The protagonist is Isabella Swan)
Wednesday, March 18
Apparently, there is such a thing as too much pink!
Marion had some rather pink pee, and so the urologist had an ultra sound done. Her kidney's are large and echogenic but without hydronephrosis. Translated, this means they don't really know what is wrong, everything looks fine and they hope it will clear up on its own soon.
Her white blood cell count dropped slightly, her direct bilirubin went up slightly and all other lab results had slight improvement. I suspect she is slightly hung over, and they had a bit of a 1 month birthday/ St. Patties day celebration last night. Perhaps I am just being a paranoid dad, but I might go see if her nurse Peter (who lives about 5 blocks from us) is a bit under the weather this morning too ;-)
Her white blood cell count dropped slightly, her direct bilirubin went up slightly and all other lab results had slight improvement. I suspect she is slightly hung over, and they had a bit of a 1 month birthday/ St. Patties day celebration last night. Perhaps I am just being a paranoid dad, but I might go see if her nurse Peter (who lives about 5 blocks from us) is a bit under the weather this morning too ;-)
Tuesday, March 17
Our first Saint Patty's Day
Well Marion did have on her green booties today (thank you Ann) so nobody could pinch her, which is good for one day cause she gets poked a lot. I asked if we could dye any of her medications green to be festive and they did not think that was a good idea. We could put 4 leaf clover stickers on her diapers and entertained that thought for a while, we need all the luck we can get, but the turn over rate is high so we did not. Maybe next year we will have an all strained peas and spinach flavored pirates booty day to celebrate.
I'm tired of big words
I'm tired of big words, they are even worse than four letter words.
It amuses me that I can now easily pronounce words like Lymphadenopathy (Swollen lymph nodes) - Hepatosplenomegaly (enlargement of liver and spleen) - Leukopenia (Low white blood cells) - Tachypnea (fast, light breathing) - Seborrhea (Scaly, flaky skin) and of course Langerhans cell histiocytosis
Although I guess there are some long words I like: Desafortunadamente (my favorite Spanish word to say), Bioflavinoid (My favorite ingredient to say), Supercalifragilisticexpialidocious, Rhythms (Longest word with no vowels), misconjugatedly (Longest word no repeated letters), Aegilops (Longest word in alphabetic order) and Spoonfeed (Longest word in reverse alphabetical order). But enough of my random useless facts.
Marion is doing fine today, she had a nice 1 month celebration. All her labs have come back this morning, and no result is worse than yesterday. She now weighs 6 lbs 8 oz. Her white blood cell count has held steady, and bilirubin is slowly decreasing. Blood C02 and acidity is down to just slightly above normal, and O2 content in the ventilator is just room air now.
or to put this in littler words
Girl OK now. 1 Mth past birth day (YAY). Today- Labs OK, but not good enough. More white blood is better, and less bad blood too!
It amuses me that I can now easily pronounce words like Lymphadenopathy (Swollen lymph nodes) - Hepatosplenomegaly (enlargement of liver and spleen) - Leukopenia (Low white blood cells) - Tachypnea (fast, light breathing) - Seborrhea (Scaly, flaky skin) and of course Langerhans cell histiocytosis
Although I guess there are some long words I like: Desafortunadamente (my favorite Spanish word to say), Bioflavinoid (My favorite ingredient to say), Supercalifragilisticexpialidocious, Rhythms (Longest word with no vowels), misconjugatedly (Longest word no repeated letters), Aegilops (Longest word in alphabetic order) and Spoonfeed (Longest word in reverse alphabetical order). But enough of my random useless facts.
Marion is doing fine today, she had a nice 1 month celebration. All her labs have come back this morning, and no result is worse than yesterday. She now weighs 6 lbs 8 oz. Her white blood cell count has held steady, and bilirubin is slowly decreasing. Blood C02 and acidity is down to just slightly above normal, and O2 content in the ventilator is just room air now.
or to put this in littler words
Girl OK now. 1 Mth past birth day (YAY). Today- Labs OK, but not good enough. More white blood is better, and less bad blood too!
Monday, March 16
Happy 1 month Marion
Today Marion is 1 month old!
This was a rough weekend for us. Her labs have been mixed, with some things getting better and others getting worse. Her CO2 was building up and causing her blood to become too acidic, and then the O2 on her CPAP was getting maxed out, so they ended up having to intubate her and put her on a ventilator. (Which means that instead of giving her air with lots of oxygen and slight pressure to help her breathe, now a machine does the pushing and pulling of breathing for her) But it actually looks better in pictures, just one smaller tube instead of the big tubes she had before. This morning her CO2 has dropped back down to good levels. The two other things that cause us the greatest upset are that her liver numbers are not steadily getting better, and she doesn't have nearly enough white blood cells.
We want her to start having mother's milk again, but with the chemo treatment it seemed that her intestine's smooth muscles stopped working, and so nothing was moving through. (Not uncommon) That seems better now, but she has bloody stools, and she won't be getting fed until those clear up.
To end on a positive note, her skin continues to clear up nicely. The pain medications she had to go on during chemo has been cut in half, and she still seems very comfortable. And she seems to be able to focus on more with her eyes now, which she opens more often.
We are also going to start a little physical therapy workout when we are doing diaper changes aka. "the new pants dance" since all the swaddling has kept her from squirming so much so her joints have not been getting their work out and may get stiff. Here she is with her fancy 1 month party hat and multi color booties (they go with everything) and she is holding her gauze rolls to stretch out her fingers.
This was a rough weekend for us. Her labs have been mixed, with some things getting better and others getting worse. Her CO2 was building up and causing her blood to become too acidic, and then the O2 on her CPAP was getting maxed out, so they ended up having to intubate her and put her on a ventilator. (Which means that instead of giving her air with lots of oxygen and slight pressure to help her breathe, now a machine does the pushing and pulling of breathing for her) But it actually looks better in pictures, just one smaller tube instead of the big tubes she had before. This morning her CO2 has dropped back down to good levels. The two other things that cause us the greatest upset are that her liver numbers are not steadily getting better, and she doesn't have nearly enough white blood cells.
We want her to start having mother's milk again, but with the chemo treatment it seemed that her intestine's smooth muscles stopped working, and so nothing was moving through. (Not uncommon) That seems better now, but she has bloody stools, and she won't be getting fed until those clear up.
To end on a positive note, her skin continues to clear up nicely. The pain medications she had to go on during chemo has been cut in half, and she still seems very comfortable. And she seems to be able to focus on more with her eyes now, which she opens more often.
We are also going to start a little physical therapy workout when we are doing diaper changes aka. "the new pants dance" since all the swaddling has kept her from squirming so much so her joints have not been getting their work out and may get stiff. Here she is with her fancy 1 month party hat and multi color booties (they go with everything) and she is holding her gauze rolls to stretch out her fingers.
Subscribe to:
Posts (Atom)
