Last night at the hospital

Sorry so late posting today - I started working again yesterday, and am so far behind I am overwhelmed.  Have also been back and forth to the hospital between conference calls as the nurses prepare us for taking Muriel home tomorrow.

Yes - we are taking her home tomorrow!

She is now off ALL drugs, so we don't have any to administer at home.  Yesterday she lost the cannula, her final femoral central line (though she gained an IV in her hand), the wires for her external pacemaker, the drug for keeping her central line open, and the diaretic (Lasix) drip.

This morning she had her first bottle - 40ml of fortified breast milk.  It didn't go down perfectly, but hey - it was her first bottle!  A little later she had an x-ray while drinking a bottle, to see if she was getting any in her lungs.  Something we very much take for granted, it is quite a feat to manage breathing, sucking, and swallowing all at the same time.  She hasn't had any practice, so no surprise she was having a little trouble.

We both got a chance to stick a long (Nasogastric) tube down her nose into her stomach, as we may be required to change it over the next few weeks, and will have to use it to feed her every three hours.  The basic plan is to fatten her up for her next surgery.  So she will get mom's breast milk mixed with formula, to increase the Kcal per ounce (to 27 from 20).  50ml every three hours to start.  She gets to take the first 10ml by bottle, providing she can down it in less than ten minutes.  The rest she gets by tube.  They don't want to overtax her - apparently drinking from a bottle is a high calorie burning activity, which kind of defeats the purpose.  Hoping to have her gain 20-30 grams per day.  Adds up I suppose!


She had a final echo-cardiogram today and a hearing test (passed).  Seems every specialist in the hospital came by to give us parting information.  Also met with a nurse representing home health care.  We will have a nurse visit our home three days a week at first, tapering off over time.  She will do assessments and report back to the cardiologists looking after us.


We are supposed to spend the night in her room tonight to practice the various things we will need to do, which basically boils down to feeding her, giving her a vitamin dose, and changing her diapers... not nearly the difficulties earlier envisioned.


For the next month especially, the next two in general, her immune system will be compromised due to the surgery.  That being the case we will have to severely limit visitors, and if you have even the slightest sniffle we won't let you into our house!  Thereafter she should be more in-line with the immune system of any two month old, which isn't saying a heck of a lot more.


Finally we had a professional photographer come in and take some pictures, for which we bought the CD.  Here are a few of the really good ones, though they are all ridiculously cute.


I'll probably cut back on the posts now... there will be a few here and there as we struggle with managing her at home and pictures as she gets bigger.  I'll fire back up again as we approach the next surgery in a few months.  Thanks to all who have followed us and projected good thoughts and energy our way - it seems to have worked!