Eating, it's always the eating

Where do I start?  HOME, HOME is amazing.  I actually went back and read my blog from our first homecoming (Lucy was six pounds at five months old, that seems crazy) and some of the feelings are the same.  New medications, oxygen and feeding pump were a big change from when we came to the hospital and I definitely was feeling a bit overwhelmed.  But just like last time, a day in and I felt a lot better.  Our wild card: Connor.  Luckily, my parents kept him at their house for our first week home.  It really allowed us to focus on Lucy and get settled.  The first few days Lucy slept a lot and she needed it.  She was able to be awake for about two hours at a time and then would crash.  She would fall asleep wherever, family room floor, sitting up on the office couch or her fabulous, comfortable BIG GIRL bed.

Her extended napping allowed me to re-organize the medication cabinet and unpack.

our schedule looked like this:
7 am - 8 medications
7:15 - weigh in  and breakfast
9 am - napping
12 pm - lunch
1 pm - 3 medications
2 pm - napping
4 pm - 1 medication and start feeds
6 pm - 4 medications
6:30 pm - bed time
7 pm - 8 medications
8 pm - add formula to feeds
11 pm - 1 medication
12 am - add formula
4 am - shut off feeding pump and flush NJ tube

The one thing I did not anticipate (although I probably should have) was the effect of the diuretics.  The first two nights, at least once, Lucy peed through the diaper.  Let me tell you, there is a fine line you walk, allowing her to sleep without interruption and changing her diaper before it leaks through  to her sheets.  When that happens, it's a big production.  Getting her out of bed, changing the sheets, you know the drill.  After three times of missing the window, I came up with a new plan.  Her bed is now an arsenal of protection against a leaky diaper.  First fitted sheet, then mattress protector, next another fitted sheet, and last a thick blanket.  This leaves me three leaks before I have to completely strip the bed.  We are on to week five and have a pretty good night time routine.  She gets her last diuretic at 7 pm.  If she goes right to bed, then we diaper change at 8:30, 11 pm and 3 am.  If she stays up until 8 pm, we get a clean diaper on then a change at 10 pm and 3 am.  3 am is when her feeds usually error out, so I am getting up anyway.  Error out sounds like the wrong thing to say, but what I have found with the feeding pumps is they are not calibrated very well.  She usually gets her total amount of formula (720 mL) in under the twelve hours and when the formula is gone, the pump will display a error message.

While I thought our biggest obstacle at home was going to be physical therapy, it appears that once again feeding issues will take the cake.  But not in the way I thought.  Lucy very much wants to eat and aside from thin liquids and fat our options are unlimited.  (Did you get that joke?).  Our fat free diet has us really restricted, but I have been able to get some variety into her diet.  Purees are our best because they take the least amount of energy to consume.  Our diet has been made up of soups, fruits, veggies, mashed potatoes and noodles.  Her favorite, by far, sour cream, plain, in a bowl eating it with a spoon.  Here is our hurdle, Lucy has thrown up at least once (but most times 2 or more) every single day since we have been home.  Sometimes it happens immediately after she eats.  Other times it's hours after a meal.  However, it doesn't seem to phase her.  She has thrown up and in the next breath asked for more food.  I was hopeful that her want of eating would allow us to decrease her tube feeding quickly, but her throwing up does not really let us get a good picture of her caloric intake.  Until we have a string of days without throw up, we will probably remain on twelve hour feeds.  The good news is we are coming up on the end of our eight week fat free diet.  I asked our cardiologist if we could remain on fat free formula so that we could increase her fat intake by mouth expand her variety of food.  We got the green light, so we will be able to foods with 3 grams of fat per serving.

We started physical therapy through Easter Seals and our therapist is able to come to the house while Lucy is still on two liters of oxygen.  We'll see her once a week, then when Lucy goes back to school, Laura would be able to come take her out of school for therapy and it would not be an extra trip.  She is so ahead of where I thought she would be.  She wasn't able to stand when we first came home but know, she is walking and WITHOUT her walker most of the time.  Then we will just need to strengthen everything.  In no time, she'll be jumping and running just like she was.  Let's just hope when that time comes she is not still on her feeding tube.  It has been slightly hard to explain to her that when she is getting feeds she cannot just get up and go.  She has to make sure her pump comes with her.  I have been trying to get her to use it as support for walking but it's quite awkward to do on carpet.

Lastly, our one month follow-up went very well.  We ended up not changing the bridle on her NJ tube which was why it went so well.  Her echo had no changes from her previous one.  Clinically she looked good and her saturations were in the high 70's.  Her last two INR's (test for warfarin) were both 2.0 (which is in range: 2.0-2.5), so we are able to now test every two weeks.  We decreased one of her diuretics and also stopped another medication, which was nice because I was able to re-arrange her medication schedule so that she no longer is getting medication during nap time.  We go back in another month and we will probably start talking about a swallow study and ENT consult.  She has snagged Connor's sippy cup a few times and even drank her bath water, so I think we are at the point where we need to give her another try at thin liquids.

We continue to be blessed by all of you who keep us in your prayers for continued healing, THANK YOU!
Here she is taking her first few steps!