Tuesday, May 29, 2007

Going for a record!

And not the type I want to brag about either!  Eliana has had a time today pulling out her feeding tube!  I don't think it's intentional, but she is still fast about pulling once she has grabbed onto it.

Here's what our day looked like.

6am - Tube feeding

8am - Joshua walks by Eliana's crib then wakes me to tell me that her feeding tube is out.  I walk over and she is  happy to see me.  She smiles a delightfully big grin while holding on to the feeding tube in her left hand.  She has pulled it out completely.

I decide to leave the tube out to let her face heal for a while.  Eliana lays beside me and falls asleep.  She wakes about 9:45.

10am - Eliana eats about 1.5 oz from the bottle and is not interested in any more.

noon - Time for a regular feeding, but Eliana has just fallen asleep.  I decide to let her sleep since her last feeding was a little late. 

2pm - She starts to wake and I debate again about whether or not to try the tube.  I decide to try out the sensory exercises on her.  She doesn't mind them.  We'll see if they make a difference for her.  Since she has had a good nap and is alert I decide to wait again on the tube and try the bottle.

3pm - Eliana takes a bottle on and off.  She takes in 3 oz.  This is a good amount, but it has really taken far too long to get it in as it will burn more calories than she should.

4pm - Still awake so we try more sensory exercises.

6pm - Put the tube back in.  Try the bottle but she isn't interested.  Start her tube feeding. 

6:12pm - She pulls her tube during her feeding!  Fortunately I am right there and see it and can stop the pump.  If she pulls it out while it is running it can go into her lungs.  We really don't want her to aspirate any formula.  She doesn't get the tube all the way out.  Since she has only  taken in a small amount (24cc - less than 1 oz) I decide to just put it back in.  She has gotten the tape all in a wad so that it won't work.  I'm thankful to hear a friend stick her head in the door just at that moment.  She comes up and helps hold Eliana while I remove the old adhesive and put on some new.  Then we start the feed again.

I stay with Eliana to keep an eye on her.  When she has almost finished her feed, I go to get some water to use to flush out her tubing at the end of the feed.  During the 10 seconds that I'm gone - she pulls out the tube again!!!  This is the 3rd time today.  Since she has a full stomach I know that I can't push it back in so I pull the rest of it out.

8:15pm She is worn out and falls asleep for an hour.

9:15pm Eliana wakes up.  We do the sensory exercises.  Take a bath.  Reinsert the tube.  She is definitely awake and stimulated at this point.  I try again with a bottle.  She is eager and ready to eat - but not very effective at getting much in.  We try on and off for about 30 minutes or more.  She takes in 2 oz then gets the rest in a tube feed.

So, I've reinserted the tube 27 times now.  That doesn't count the many times that it has come partially out and I've just stuck it back down.  I'm down to 8 tubes now and wondering if it's time to order more.  I'm still confused about the feeding.  She wants to eat, has the stamina, has a good suck, but something is wrong.  Please join us in praying for wisdom in figuring out what is wrong.  I know that if this isn't resolved that we are looking at another surgery for a G-tube.  That really isn't the route that I want to take with her!

As I'm confused and wanting answers, I also find a peace in knowing that we will figure this out at some point.  I know that God has a plan for our lives and that He loves us.  I don't  understand much of the trial that we have walked through, but know that because my God is good that He will use this for good.

I was blessed by a note from a dear friend today with a Bible verse that really ministered to my heart.  I wanted to share it here too.

2 Chron 20:12-17 For we have no power to face
this..... We do not know what to do, but our eyes are
upon You. ... This is what the Lord says to you: 'Do
not be afraid or discouraged because of this ... Go
out to face them tomorrow, and the Lord will be with

In this case, it was Jehoshaphat facing a vast army,
but for all of us, it's the trials of life.

v.17 Take up your positions, stand firm and see the
deliverance the Lord will give you, Roger and Leslie.

I'm trying to keep my eyes on you God.  Some days it is just hard as I'm overwhelmed by the things that I need to do and keep up with for my little girl.  I'm so thankful that she is healthy and happy.  Her smile just melts my heart.  She is a precious blessing and I'm so very thankful for our Eliana Joy!

With love,