Mother's Day

Today is mothers day and I had a beautiful baby girl and in my head, today was supposed to be a wonderful day of celebration. I do want to celebrate for my mom and Jeff's mom and my sister and sister in law who are all wonderful mothers. So many of our friends and extended family have become mothers and it is an amazing journey and we are so excited for them. But today can also really suck for people who have lost mothers or lost who made them a mother.

We went out for a canoe ride on Lady Bird lake and saw all sorts of wildlife (turtles, fish, a swan family with 3 little fuzzy swans, a raccoon and 3 swimming snakes!!!!! Yikes!!). We worked a bit in the garden, the vines are climbing and the Isabella rose is about to have 5 new blossoms and hopefully we can beat the birds and squirrels to our first few blackberries. In many ways it is a regular Sunday but there is just something missing that makes me ache, and makes me sad, and this is not how today was supposed to be.

Marion's Memorial Garden

There was a lot of rain here last weekend but we just planted a garden so that is a good thing. Saturday we had a steady stream of visitors to see Marion's garden and help build our raised vegetable bed.
We have been surrounded by love and overwhelmed by the breadth of the community that has come to support us and we are so lucky to have such caring people in our lives.

Before:













In progress:





















Finished garden:















At the memorial:

Memorial for Marion

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.

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.

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.

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.

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)

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 ;-)

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!

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.

Happy 3.14 - Pi day

I've got a slice of Pie out and waiting for 3-14 at 1:59 & 26 seconds to Enjoy a big bite. Only 7 more minutes to go!
I encourage everyone to have a slice of pie today.
Oh, and Marion's doing OK. No big improvement today, but I did get to hold her for a couple of hours this morning.

Salon Beautiful

So her skin is getting much better and that means there are sort of waxy, flaky bits that are coming off as part of the healing process. I got to give her a sponge bath today and try to get some of those off, kind of like peeling if you got a sunburn. There is an infant massage specialist who was supposed to stop by after our bath so that I can learn some infant massage techniques but she got called away to something else so we will learn that next week. We washed her hair and got it all dry and fuzzy but we had to take off the CPAP machine and use the oxygen mask kind of close to her face, she of course wanted to help hold it so the cool breeze went just so over her new hair do - you can kinda see the little light brown peach fuzz standing straight up and soooo soft, until we slick it down with lotion and put her hat back on.
We had an excellent cuddle today and stayed all warm and relaxed through our bath. Not a bad way to spend a friday afternoon getting pampered by the NICU spa team...

the Page

So I am a total amateur at this scrap booking thing. I did one for the wedding album and that turned out very well, I figure she may get one for her whole first year and then mostly we will use photo albums. So a certain someone should not be terrified at the thought of boxes of stickers and labels appearing along with pretty paper and run screaming from the room. Some of the other moms had clearly paid way more attention in crafts class at camp than me, but I worked hard earlier to get someone to extend her little fingers and attempt to get a trace of them before they resumed partially closed fist position. The little fingers and toes are just amazing to me, fully formed, with nails, and sooo tiny. The hospital took footprints at birth but the baby book has space for hand prints too and they are cute and small but especially when you can compare them to our hands. I figure the cut outs are easier then trying to get ink off her hands.

A good day, other than the scrap booking

Marion had a nice night and day, with no "episodes" (When she stop getting enough oxygen in her blood and alarms go off) and all her numbers (They run all sorts of number with her labs each morning, can't even tell you all of them) have continued to get better at a nice steady rate the last 2 days. So all in all a great day.... except for the scrap booking. Tonight was family social and scrap booking evening from 7-8. Mom made a beautiful piece for Marion's door with all our hand prints on it. Hopefully she'll attach a picture of it tomorrow.
Meanwhile, Dad has a severe aversion to all things scrap booking and ran screaming from the room and hung out reading woodworking books with Marion instead.

Wishing and hoping and thinking and praying

And waiting. So yea chemo is done for this cycle and now we have to wait and see how she responds and really really hope that she does not get any kind of infection as Marion currently has pretty much no defense. Overall, we think it is working. Her lymph node in her leg that had been enlarged feels smaller to the doctor and her skin is improving a lot. Her liver numbers came down a little - still high tho but coming down is the right direction. She was opening her eyes a lot yesterday and the eye doctor has said her eyes look good so there are lots of good things but we also know that if things turn bad, they can turn very quickly and have drastic consequences. We are crossing our fingers and toes and not sneezing for the next few weeks while we hope to see her body's immune system kick in like it should.

Sunday

Well Marion met her Aunt Amy and had a lovely visit this weekend. She is almost through with chemo and is at super high risk for infection right now so we have been telling her -liver numbers down, no infections, keep growing. Her little tummy is swollen with all the fluids so one more good thing about the end of the chemo cycle is that will also help with less fluids that she will have to have. She is a bit of a high maintenance girl right now and yet she is asleep most of the time, how does she do that?

I'm on a new drug

So far so good on the new chemo drugs, her liver numbers have come down a bit which is great. She has shown signs of being a little uncomfortable but that is to be expected with all the chemical cocktail she is getting right now and they are working to manage any possible pain. Her skin is also clearing up a lot and her legs and arms and head look much better. She is also getting a good lotion rub down that is helping with the spots. We had a very nice cuddle today and have one more day of the 5 days of chemo and then she will have 3-5 weeks to rebuild before we start again.

Ruby slippers

We have been overwhelmed with the support of friends and family and we wanted to let you know how much we appreciate it. We tell Marion how much she is loved every day. We have also received some of the most precious gifts, some from people we have not met but heard about Marion and want to help or know how to knit and realized that when your foot is the size of a finger it is hard to find shoes or socks that fit (thanks Catherine!). So thank you again to everyone for all your kind words and prayers and little socks that she will grow into.

New drugs

Yesterday, I was washing my hands in the men's room at work when I got a really funny look from someone else. Took me a second till I realized I had rolled up my sleeves and washed up to my elbows. Man.... our hands have never been cleaner than these last couple of weeks.
Marion's liver, lymph nodes and spleen continue to swell, and quite seriously her liver seems to have closed bile ducts for some reason. So yesterday they started her on a regimen of harsher chemotherapy drugs. These will be given every 12 hours for the next 5 days. We're hoping they kick this LCH in the ass and we see some results quickly.

Mom's Miracle Milk

Marion's intestines seem to have cleared up enough that they are going to try giving her some food for the first time this morning. Yeah, now let's have mom's milk make miracles. (We need her liver to start working better already!)
Also, they have moved her back to being an astronaut instead of a sea diver (oxygen hood instead of CPAP machine) And mom got to give her a sponge bath yesterday and hold her for a long time.
And now it is time to get the Rubber Ducky song stuck in your head, sing with us now - Rubber Ducky you're the one...

Holding pattern

While the liver doctor is conferring with colleagues in Houston and Dallas and we are hoping that her levels even off or drop down, we have gotten to do lots of holding. There is just nothing more peaceful then a tiny sleeping baby on your chest. She is getting much stronger neck muscles and can really lift her head up and wail if she is unhappy but those spells do not last long and she falls back asleep. Hopefully she will be able to start feeding later this week which is good because our freezer is getting full of milk supplies (go me!). Taking it day by day...

Aren't we colorful

Well hospital food may be boring but check out our multi colored rocket ship bed with hot pink zebra stripe bandanna, 2 pastel sort of tie died pillow cases and our pink and blue stocking cap. Are we just a vivid fashion statement or what? If only pampers came in polka dots...

Best present yet?!

My nephew heard about how I was planning to shave my head for Marion. And so, yesterday... he did the same. So a huge thank you to Wes. This has really cheered us up, and we'll be posting the photos in Marion's room where she (And the nurses) will love it too. Oh yeah, and he lives in Minnesota where it is snowing today. He's hard core!
Last week:




Yesterday:



And finally:

... and 1 step back

So Marion's liver swelling has gotten worse, and now they can also feel her spleen swelling. The liver is causing some problems all its own, which the doctors are trying to figure out. But then her little chest cavity isn't large enough to hold all the swelled organs, and the liquids they give her... and so she was having trouble getting her lungs filled up enough. So now they have put her on a CPAP machine (Continuous Positive Airway Pressure) which helps her breathe good deep breaths. We're going to go talk with the liver specialist tonight. (Dr. Biryani?) I've put the one unhappy picture we took of her today to express all our displeasure with this situation.

Long Hour

Well Marion made it through surgery this morning to have her broviac (?) line put in as her IV's kept getting clotted since they have to send blood products through. They will get to use the new lines (there are 2 which is really good and they were very excited about) for chemo this afternoon and we will be on a Friday chemo schedule for the next year. We are still waiting for her to get well enough to eat/drink mom juice with a bottle or naturally and we are working with her on using a pacifier to help her figure out the suck, swallow and breathe combo. They are giving her nutrition thru the IV's but it is not the same. She is getting a lot more feisty and is awake more and her doctor is glad to know she has a personality.

Jeff's parents are coming up today to visit so hopefully they will get to hold her and we can post some pictures.

Surgery?

Ok so maybe she is getting the new line today, she is not yet on the surgery roster for today so it may be tomorrow morning and then they would be able to use it right away for her chemo. There is always the possibility they can fit her in but we have not signed the forms and met with the ENT doctor to make sure that she can handle the intebation(spelling??) as we are not sure what kind of shape her little throat is in. So they are adding her platelets and blood and added a second line in her other hand so she is two fisting IV's right now.
As an aside, I am typing this from the family resource center at the hospital with a very nice library, free internets and coffee and snacks on Thursday mornings.
A note on the jaundice as she still seems off color to us, but she is a 3 on the scale and they do the light treatments and worry when people are at 11 to 15 so they are watching her levels but do not think she needs the light table.

Peek a boo

Peek a boo, I see you.
Marion's umbilical line clotted yesterday (They expected this to happen between 10 and 14 days.) So today they are putting in a shunt which will stay in until she finishes chemotherapy. The doctors say it is a minor surgery which they have done thousands of times.
Ah, and she is no longer usually getting heat from the warmer... and appears to be able to keep warm enough on her own most of the time.

How can you help?

We are asked often, "How can I help?" We are both strong folks, and are handling this pretty well. We've got insurance and live close to the hospital. So we don't really need any help.
There are lots of folks out there in tough situations who can use a hand way more than us. So primarily I would encourage you to help those folks instead. That said, here are ways you can help.
-Send us a postcard, a picture, an email or just post words of support here on the blog. (If you can figure out how ;) Wonderfully appropriate would be ones like the beautiful cards places like MD Anderson often makes. Example
-Mom loves cute socks, she acquired quite a collection which she was ready to adorn Marion with. (And will in a couple months) But for now, they are all too big! Premature babies have teeny tiny feet. Even the ones in the preemie section at Baby's R Us looked too big (And are labeled 0-3 months)

And here are some ways you can help other people, and us at the same time.
-Volunteer or donate to the charity of your choice, and just send us a note if you are doing it in honor of Marion. I'm shaving my head for St. Baldricks day, and you could donate to that cause... but I don't particularly care for that charity over others.
-Marion gets transfusions every day, a huge thank you to donators of blood and platelets. Frustratingly, I can't donate as I lived in Bristol for several months and they apparently don't have accurate tests for mad cow disease yet.

Tummy Time

So Marion got some tummy time this afternoon, I will attach a picture when I learn how to resize them. I kinda freaked out the blog earlier today with attempting to post what is apparently a huge file. But she looks all cozy with her legs tucked under and her arms tucked in and she raised her head about an inch off the pillow to look at me - pretty good neck muscles for a 33 weeker!
I also met with a social worker at the hospital, standard operating procedure, to go thru medicaid and other types of social services available. It gets confusing fairly quickly and it is not fast! One of the programs has a 5 year wait list and we hope by then she is all better...

Our future astronaut

Marion is going to be an astronaut! They've turned down the O2 to just the same as in the room, but they are leaving it on for now as a humidifier.
Edit - Well, back up to 27% last night... but that's still not bad.

Scrabble Art

I finished my scrabble art for Marion's NICU (Neonatal Intensive Care Unit) room.
Next, we need to decorate the door for her.

Jaundice :-(

Sarah and I have been telling the doctors for a few days that Marion's coloring had changed significantly and we were concerned about jaundice. This diagnosis was confirmed by the doctors this morning. I understand it is common in premature babies, and nothing to be too concerned about. Haven't talked to the doctors about it yet, so not sure if she'll be getting UV lights or what...
Edit: Apparently UV light isn't going to help the type of jaundice she has.. and they are just going to wait and treat it later, but other things are more important at the moment than a very little bit of jaundice.

A week ago

It just does not seem like a week ago that I thought I may be having contractions but it was too early, this was going to be false contractions and they would send me home. Lesson one that we are on her schedule and she needed the help from the outside so she was going to come out and get it.

Tiny step back

Yesterday Marion was having some trouble breathing, and her blood oxygen content kept dropping below the 92-97% which is apparently optimal. She got a little oxygen cone put around her head. Apparently oxygen in the air is about 20% by volume, and they are putting her on 24% - 26% oxygen until she is breathing a little better. Not a huge difference, but it was quite a shock for Sarah and I when we saw this. Felt very overwhelmed by it last night, but I slept fine and feel better today.

First week in pictures

I'm so happy with the rapid improvement in Marion's rash. And it looks much worse in photos than in person, I think they highlight the redness. I just wish everything else was getting better as quickly. Her platelet count dropped down to the teens again yesterday, which is as bad as the first day and they had her on platelet infusions again. Also, we had a smoke detector low on batteries here which beeped every 15 minutes all night, didn't quite wake me up... just enough to give me nightmares about Marion's monitors.

Day 6
Day 5
Day 4
Day 3
Day 2
Day 1 - the bruising looks really bad but is mostly from delivery

We liked last Saturday better

Last Saturday we had a beautiful baby shower, and played with friends and family. Seems like much longer than a week ago.
Today, Marion started her chemo and steroids. She slept through it all as we cried in the corner. An assessment will be done again in a few weeks, and now we hope she gains weight, and her rash keeps clearing up, and we don't see any new complications in the meantime.
Tonight, we plan to try and take our minds off it and go the Texas Juggling Society yearly public show.

First post about Marion

Some good news, a few days ago they took a bone marrow sample from Marion to check for LCH, there was one sample of loose cells, and another of a bone marrow core. The loose cells came back negative for LCH!
However, the skin was positive for LCH, and the liver and lymph nodes are enlarged to the touch, and may also be positive. So they are starting treatment today which consists of a very mild chemotherapy once a week for a year, and daily steroids every day for a month. So I suspect she'll be on the baseball team in no time.