How have we been?

It has been almost a full week since we left the hospital and began life anew at home.  We walked out of the doors at 5pm on Monday, February 7th.

Life has been hectic.  Alan and I give Clara a total of 4 IV meds at home.  One is given once a day and the other is given every 8 hours.  This means that I am up at 5 am to give Clara the first of three which is due at 6am but must be taken out of the refrigerator an hour ahead of time, and Alan is up until a little after midnight administering the last.  We have a total of 7 meds that we give her through her NG.  They are given 1-3 times a day and one requires that she have an empty stomach and thus can't be given with other meds or within 1 hour of a feeding.  So, while we are struggling to make sure she gets enough to eat through her NG everyday, she has consistent morning nausea that we can't seem to prevent - even if we don't feed her overnight through about 10am and even with anti-nausea meds.  And when you have to stop feedings during the day to make sure she gets the one med on an empty stomach, we are having a hard time making sure she is staying hydrated, much less getting enough calories.  Plus, for the next two weeks, we will be going into the day hospital to get her antifungal that has to be given at the hospital.

So, I'm pretty tired.  Despite my graph paper charting to help me schedule when I am going to do what, I am constantly concerned that I am behind or missed a med.  Plus, I'm trying to get the house in order.  It is actually something I am really really enjoying.  It is based on flylady.net.  It is a fabulous system for keeping your house clean and in order and to a level that I never thought I could accomplish.  She reminds you to do things in 2, 5, and 15 minute lengths and not to try to "catch up" but start today and move forward.  In the chaos that I am living in it is so nice to be able to ALSO keep my house clean.  And not just nice, necessary.  Clara requires a very very clean house and I am able to actually do it!  Problem?  I'm pooped! But loving it.

It means I don't have time for phone calls with my favorite people, yet.  It means, I don't get a lot of breathing time, yet.  It means, I am thoroughly exhausted at the end of the day and hardly took time to have my glass of wine.  BUT, I'm close.  Very close.

Clara has slept in her own crib in her own room the past 3 out of 4 nights (last night was weird and she was having some odd discomfort that I could never pinpoint).  She is falling asleep on her own after varying periods of fussing (0-45 minutes).  She is incredible.  She is finally getting some of the much much much needed rest required as a result of her hospitalizations, procedures, chemo, blah blah blah.  She is having a hard time napping, but I think it is just because she is still adjusting to falling asleep on her own during the day.  She does like a dark room and the curtains I bought her aren't blackout.

I promise this is the first of several big updates regarding what has happened, is going on, is expected, needs to be announced, etc.  We are just so very busy.  I have been taking pictures and promise to post them as well.  Not sure why this post is first other than the fact that the chaos of the day is forefront in my mind.

Clara is doing great.  Her skin has a different glow - not quite so dehydrated.  And her eyes are more clear and the whites are whiter.  She has begun the separation anxiety phase and doesn't like for me to put her down, much less walk away, or leave the room.  In the hospital, we were always together and I was always holding her.  Still, she is learning to pull on things to stand up and enjoys holding onto the edge of furniture to stand. We still have not gotten good at consistently putting her in the highchair each day to expose her to solid foods.  It is necessary as she won't learn to eat if we don't teach her.  And I feel guilty that I am too busy to teach her to eat.  It will come soon.

I must stop here.  There is so much more to say and I promise we will say it.  I just wanted to get in as much as I could while I could.