new faces, new places

We are just over one week home and starting to settle in.  I am not going to lie, the first two night home were hard.  We were on feeds every four hours that ran over an hour.  The first night looked something like this:
7pm feed
8pm flush line and take of tube.
11 pm feed
12 am flush line and take of tube
3 am feed
4 am flush line and take off tube
5 am start work

We did this for two nights and I quickly realized it was not a schedule any of us could maintain!  Lucy was awake for the beginning and end of the feeds to attach or remove the tube extension, so she wasn't getting good sleep either.  Do you know what a toddler can be like with no sleep....so you can guess that our days weren't all sunshine and rainbows.  Add to that, she threw up after 3 straight feeds going into Friday.  We decided to adjust the schedule.  

We came home on 6 feeds of 135 mL over an hour for a total of 810 mL (and about 650 calories).  Since she wasn't able to keep it down and we also want to cater to a normal eating schedule, we lowered the volume and went to 3 feeds during the day (100 mL) at breakfast, lunch and afternoon snack.  Then before bed we hook her up and do continuous feeds from 8 pm to 5 am.  This way everyone gets some good sleep and we are still shutting off the feeds in time for her belly to prepare for breakfast.  Our medications have not changed, but we are adjusting the schedule to coincide with feeding so we aren't taking the tube on and off.

The g tube is something to get used too.  The first couple days Lucy would cry anytime we picked it up, mentioned feeds or medicine.  I am not sure if it actually hurt when putting the tube in, or if it was more mental than anything, but I too had some anxiety around it.  Just like everything else, the more you do it, the easier it gets.

After being the hospital for so long, I always want our return home to speed up recovery.  I wish it were that easy:  that her eating would turn around, that the throwing up would stop, that physically she could do everything like before.  But all of it takes time and I for one can't wait for us to be once again tube free doing all things normally.  In order to get to that point we decided to get a second opinion regarding matters not of the heart.  We scheduled our first appointment with Lurie Children's hospital in their Aerodigestive Program.  (Unfortunately for us, Advocate children's hospital does not have one).  The program serves children with complex airway disorders, requiring pulmonary, upper digestive tract, sleep voice and swallowing evaluations.  We are hoping this program will be able to help us answer some questions regarding digestion and her vocal cord paresis and also help keep her lungs healthy.  The appointment went well (aside from the flexible scope we had to do).  We met with GI, ENT, speech and the APN.  We came out of it with our first procedure scheduled:  a gastric emptying test at the beginning of January.  If you know me, you know I am a creature of routine and change is hard for me.  I like to plan.  The arrival of Lucy almost 4 years ago has really challenged me in that area of my life.   Yet again, this will be another 'change' we will tackle.  New faces, new hospital, new location.  The clinic is once a month, so we'll head to the city and I can only assume this will become part of our new routine that is bound to change. 

Here we are in the waiting room at Lurie's

And Lucy with her trusty drinking toothbrush

When I started this blog back in 2013, it was a way to keep family and friends updated on what was happening with the pregnancy, birth and Lucy's heart journey.  While that is still the main focus, it's allowed me a place to air my feelings, good and bad, celebrate accomplishments and to share with Lucy (eventually) those that impacted our lives during this journey.....see next post.