Better today

Muriel loves her nook - a good sign that she will quickly
take to bottle and hopefully breast soon...

Sorry didn't post again last night.  I drove back to Naperville and picked up Madeline and Mirabelle, and we had our hands FULL pretty much all night long.  All four of us are sure to make a pretty sight at dinner tonight with bags under our eyes.

Yesterday was rough.  My last post I mentioned that her CO2 had gone back up, and the various things that would be done about it.  It got worse before it got better, and by mid-afternoon it was really hard to watch poor Muriel trying desperately to breathe.  Her nostrils would flare, her whole chest would constrict, and she made little grunting noises that we are told is her body's attempt to rid itself of excess CO2.  Though every nurse that came in did their best to console and reassure us, we asked Dr. Nater to come speak to us.  She managed to talk us off the ledge, and convinced us that though she is having a rough time she has to just get through it.  She is building up strength in her lungs and muscles and is fully expected to "get better" - we need to give her time.  This concept was later reinforced by Dr. Sajan when I was able to speak to him near midnight.  There is concern and empathy, but the medical staff is not worried, and all have promised that if they ever are, they will let us know.

One additional minor complication arose yesterday.  Muriel seems to have no trouble with bowel movements, though I don't really understand what is filling her bowels!  One such incident managed to soil the dressing on her right femoral artery (?) central line IV.  Worrisome, as this is one of the riskier points of possible infection.  The nurse who changed her quickly changed the dressing, and discovered a very ugly looking blister.  It had not "popped" at that point, so there was no immediate concern.  It did, however, pop last night.  They sent off some of the fluid for culture which came back negative initially.  They will continue to try and grow it for four days, and if anything shows up she will be back on antibiotics immediately.

Sleep?  We thought this was a party!

Megan and I traded off visits late last night as we struggled to get our other two girls to bed, and I have to admit she started looking better even then.  Today, at just after lunch, she looks MUCH better.  Doesn't seem to be struggling anymore, and was sleeping peacefully.  Her oxygen is still augmented, but only slightly (25%).  Her flow is still augmented, but down to six from seven (out of ten).  Unfortunately as long as the the flow is above 3 (liters per minute) she cannot have any milk.  So she is getting nutrients by IV again for now.  The respiratory therapists come by every two hours now (up from three) to try to clear the lungs, which on last night's x-ray still looked hazy, though now on the lower left lung (the upper right has cleared apparently).  Another thing that is hard to watch - the percussion I understand and of course it seems to be working, but there must be something instinctual to explain how I feel about watching someone whack my child!

All the respiratory therapists and the nurses have been unable to suction any of the obstructions.  It is apparently very difficult to get the catheter down the esophagus to where it needs to be, so they tend to wait for the baby to cough it up and get it from the back of the throat, which she hasn't been doing.  Diaretics are still being given to try and dry up the fluids, but this seems to be thicker mucus that won't respond.  Another drug to break up the mucus (and another to counter the tendency for the bronchial tubes to close up when the mucus busting drug is given) is being administered as well.

I don't know if I will post again tonight or not - I know there are a great many readers at this point, judging from the amount of  "please post" texts, emails, and voicemails I am receiving :)  We will have our hands full again tonight with our other girls.  Mom is taking them to "Aunt Cookie's" (Gayles) house tomorrow for the annual Easter egg hunt, and I will be here with Muriel.  So probably one or two more tomorrow.  Don't worry - if anything really newsworthy happens I will get something out even if it is without pics.

Thanks everyone for your frequent well wishes, the comments on the blog, and the overwhelming support we have received from every possible angle.  As Megan has passed on to several people, my faith in community has been reassured.  I don't know how we would have survived this far without all of you.