NICU update, Chemo Round 4

Cricket Update:
Things have been going pretty well for Ava since the last update. But, as I've been told many times, it is a bit of a roller coaster with these little ones and they will take several steps forward and a couple back! Here is the latest:

Went off the UV lights again, but then back on, then off, now on again! Some of the bruising she had from the delivery causes her bilirubin to increase, they say, and the UV lights dissipate it well. She looks like a little blue glow worm under the UV lights. She doesn't like it as much since she has to be laying there with glasses on instead of bundled up.

Reduced her Nasal Cannula pressure down to 4, 3, then 2! One of the docs said it was remarkable how quick she was improving. But (he didn't knock on wood), then she had a very rough night last night and a tough morning this morning. So, the docs bumped her air pressure back up to 4 and she has been needing more oxygen percentage lately too. It's possible she just was pushed too far too fast and needed some more catch up time. They aren't overly concerned at this point but are also looking for a "PDA" which is common in preemies - it's a heart valve issue that is treatable. They haven't found one yet but say it's a possibility.

Her breast milk feedings have increased from 1cc dosings to now 15 ccs every 3 hours. She was doing so well they removed her mainline IV (PICC) that they had put in days earlier. Ava is now self-sufficient on feedings (no IV fluids, etc) assuming she continues to tolerate the breast milk well!!! This is a nice milestone to be unencumbered (did i spell that right? it's late) with no IV tubing.

She is pooping and peeing well! and her head ultrasound came back with no major concerns from the docs.

Overall, she is doing well. She went up in weight for a few days, but now is re-adjusting (due to weaning off the IV) and so is back down a bit to close to her birth weight. She still has her Bradys, Desats, Apneas from time to time - some days are good and some aren't so good. But, it seems the overall trend is still positive. She is a bit of a drama queen in the NICU and has made friends (like her mom) with many people there. Sometimes, it seems she will alarm to just get attention if the nurses are helping with some other baby! Ava will even smile when they come back after she has done this. She has daddy wrapped around her little fingers too. We read her a book during Linda's Kangaroo care (skin to skin holding) yesterday. It was a very special moment for us. One of the nurses knitted little booties for her. We brought in cookies for everyone for her 1 week birthday on Tuesday.

Chemo time!
We had an appointment with the chemo doc today. We are now completing 4 rounds of AC chemo instead of 5 (4 is the normal regimen - we were doing 5 to help with delivery timing and figured we'd give the cancer "one for the road" too!). Some have asked if we will be more aggressive now that Cricket has hopped out of her nest. Actually, the chemo plan we were on was already very aggressive and so we will stick with it. It would have been the same basic plan whether Linda was pregnant or not. However, we will only have 4 rounds of AC instead of 5. Then, the Taxol will start in two weeks.

Good news today: The doctor couldn't feel a perceptible lump anymore!! He said there may be some thickening still there but the lump has reduced substantially already! Doing the chemo before surgery has the advantage of seeing how the cancer reacts to the chemo (since there is a lump to measure). It is very comforting to know that it is working well on Linda's tumor.

Linda had Round 4 of AC chemo today. She said the toughest part for her was the mental aspect of being away from Ava since last night (it feels far away when we are in Corvallis). But, we called a couple times to talk to the nurses there and they give us updates. Linda is also now quite anemic and is showing symptoms of this (being cold sometimes and more fatigue than normal - which is hard to notice on Linda!). The worsening of the anemia is from the blood loss from her c-section (she is also still sore from that but improving every day). Linda will take iron supplements (she has been since the c-section but we need to continue) and they said she could get a blood transfusion if needed to help her. Hopefully the iron will do the trick! We have been on the go so much and not sleeping as much as we should, so that probably isn't helping either.

The Eugene Guest House has been great - we stayed there about 3 nights this week. There is a fraternity across from it so maybe we'll crash a party there when we're feeling better! We are home tonight then back in Eugene tomorrow.

Thank you so much for everyone's kind words, thoughts, prayers for our daughter's birth. Everyone has been so wonderful to us (friends, relatives, doctors, nurses, etc) and it helps us immensely!

Rob.