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.