There's No Place Like Home

As long as Ellie is on the yucky Enfaport non-fat formula I'm sure she will be fed through her feeding tube which means 5 more weeks, until June 26th.  If it tastes as bad as it smells it must be pretty awful stuff.  After June 26th we will feed her regular formula for 3 days and take another chest xray to see if the chylothorax has resolved.  If not, she will go to surgery to ligate the duct.  About 6 weeks from now she will have to go back to the hospital to have her malrotation corrected.  Yes, another surgery and hopefully this will be the last one except for replacing her pacemaker generator every few years.  It's hard to think about her going back in for another surgery knowing how difficult these past 5 weeks have been for her.

We have a home health nurse that comes by a couple of times a week to check on Ellie and mainly help us while she is on her feeding tube.  She weighed Ellie today and she is doing fantastic.  The goal is 1 ounce a day and she has surpassed that.  All of the doctors, nurses, and therapists are really encouraged by the progress that she is making.  Ellie has started to eat more solids and also started to take some thickened apple juice by bottle.  We will keep working with a speech therapist once a week to help with her eating skills.  She hasn't shown many signs of withdrawal since she came home and I think the process is working out well so far. 

Ellie has had a tremendous recovery at home.  Before her surgery it was like pulling teeth to get her to smile.  Now, we just look at her and she always smiles back.  It's so nice to see her happy again.  There really is no place like home, especially to recover.  The feeding and medication routine is becoming just that, more routine.  I'm beginning to see more benefits of the feeding tube now like being able to feed Ellie when she is sleeping and with all of her medications we are able to bypass her mouth and they go directly to her stomach so we avoid any nasty tastes and gagging.  It works really well at the one point in the day when she gets 6 medications at once and we can squeeze them in to her in a matter of seconds.  She has slept pretty well ever since she came home because she can finally sleep without being woken up every few hours.  Ellie will probably be on the oxygen for a while, not to keep her sats up, but to help her hypertension, which is continuing to improve as well.   And of course, the day we brought Ellie home she started getting congested and Rhett got sick.  Now the battle continues to try to keep her as healthy as we can to avoid going back to the hospital.

We are so grateful to all our family, friends, ward members, neighbors and even strangers that have supported us through this difficult time.  We were asked countless times what people could do for us and nothing was more meaningful than your faith and keeping us in your prayers.  My eyes have continued to well up with tears every time I knew someone was praying for our family.  We have grown in our relationships as people have showed concern and have been strengthened through this trial as we know that Heavenly Father knows us and what we can endure.  Ellie is our million-dollar baby (not quite, but we're getting close) and   oh, so worth it!