our first week

We have officially been home for five days and Mike was right.  Once we started doing everything it is not that overwhelming.  Don't get me wrong, it's a lot to remember, but overall we are so glad to be home.  The first two days were hard.  Lucy cried a lot and you can imagine what that does to a parent when the doctors say don't let her cry.....hence the last post.  When we got to Wednesday Lucy was starting to get used to her new surroundings.  I am hoping she thinks they are better because we are not poking her and waking her up constantly.  It's now Friday and Lucy has woken up with smiles as she watches her mobile for the last three mornings.

  Monday night we decided we were not comfortable sleeping in different rooms, so we set up Lucy's crib in our family room along with her feeding monitor and oxygen.  We slept on the couch.  Luckily our couch is comfortable and big enough to fit both of us.  Lucy was sent home on a half liter of oxygen so we have oxygen tanks and also a compressor (which turns room air into oxygen).  During the day we use the compressor, but it sounds like a generator so at night we switch over to oxygen tanks.  On a half liter the tanks only last 20 hours so we are trying to conserve.  We are hoping eventually her cardiologist will move her down to a quarter liter and we can use the tanks all the time.  Here is a day in the life of Lucy

6:00 am - give medication
7:45 am - mix formula for the day.  One packet gets Lucy through almost one day
8:00 am - change feeding bag and add vitamin to first feeding. She is still on continuous feeds so we add formula and reset monitor every four hours.  Since we left we have gone up two milliliters an hour. She's now up to eighteen.
9:00 am - give medication
12:00 pm - add formula.
               - give two ML of safflower oil (she is on fat free formula so this is how she gets her fat)
               - give medication
2:00 pm - give medication
4:00 pm - add formula
8:00 pm - add formula
10:00 pm - give medication
11:00 pm - change from compressor to oxygen tank
12:00 am - add formula
4:00 am - add formula

The good thing about the NG tube is we never have to wake her for any medications or feedings so she can nap.  Her naps are already getting longer.  Between naps we are trying to work on her therapy, but we are trying not to push her to much since the environment is still new.

Tuesday we met our home nurse Nancy.  We like her a lot.  She gave us one piece of advice.  When Lucy is sleeping or content in her crib, we should leave the room and do something.  Whether it be taking a nap or reading a book.  We needed to hear it.  When you spend so much time in the hospital, we have what they call ICU psychosis.  We spent so much time just watching Lucy in her bed that at home we find ourselves hovering over her crib all the time.  We are working on it!

Thursday we had our first follow up appointment at the Norwood clinic.  As we were packing up Lucy, I was thinking how does someone do this by themselves.  We packed up her food monitor in a travel backpack, travel oxygen and diaper bag.  Mike took the stroller out to the car and I put Lucy in her car seat.  Then I carried Lucy, while Mike followed with oxygen and her food backpack.  Once we got to the hospital, we place everything in the stroller and wheeled her in.  Our first visit was a short one.  Dr. Husayni ( her cardiologist) came in to listen to her and take her vitals.  Then he reviewed her last echo.  He said she looked good and we should move up the volume on her feeds to fatten her up!  Honestly, I think the first visit is really for the parents to make sure they are doing okay.  Before we left all the therapists came in to see Lucy, I swear everyone at the hospital loves her. One of the therapists asked to be paged when Lucy was at her appointment to make sure she could stop in.

All in all a good week.  We hope we continue to settle in and eventually move to our bedroom for sleep, but that seems a few weeks away.

P.S.  Lucy is now up to six pounds eleven ounces....just about the size of a small newborn!