I did it!!!

Arrrgggh!  I just typed in my entry, finished it and hit a wrong button on the computer and the whole entry is gone!  *sigh*  I'll try again.

I was able to put the NG tube into Eliana today.  Thank you for the prayers for this procedure.  It went very smoothly.  I was understandably frightened about inserting a tube into her nose and running down to her stomach.  We had a wonderfullly encouraging nurse helping Roger and I.  We got everything ready - the syringe, tubing, tape, etc.  They helped to hold onto Eliana and then it was my turn.  I just couldn't do it.  I waited, prayed and waited some more to get up the courage to start.  They patiently waited and encouraged me and I finally just did it.  It went very smoothly.  Thank you God!

I was afraid of hitting the back of the nose and causing her to gag - and then having difficulty moving beyond this point.  Thankfully it just went in so nicely.  I have one more time to try this before going home and Roger needs to do it once. 

I'm not sure how often we will need to do this.  We've gotten conflicting information on how often it needs to be changed.  Obviously if Eliana pulls it out, we'll need to reinsert it.

We are still planning to go home tomorrow.  I'm looking forward to being home again with my whole family.  We will be looking at surgery sometime in tne next 6 weeks is the prediction. 

Thank you again for prayer!

Leslie

Day 2 at the hospital

I thought I might have a little more time here - to sleep and post on the computer.    What was I thinking?!!!  I went to bed about 3am last night.  I really wanted to post here and update folks.  I am so thankful for the many prayers that are being lifted for our family. 

Eliana is doing well today.  She has had 2 blood draws (both in her heel).  The first didn't seem to bother her, but the second one upset her greatly!  It didn't help that her blood was flowing slowly and it took a while to get it complete.

I met with 2 speech therapists today to help with her feeding.  They were helpful in showing me some things I could do with Eliana to help her eat more effectively.  It's become a very difficult thing for her to do as it just wears her out!  We are trying to offer her food via bottle first for about 15 minutes or until she is all tuckered out.  Then she gets the rest of the feed in the tube.  She is taking about 20-30 ml via bottle.  She is doing such a good job!

I've met with LOTS of people today!  Lots of doctors, nurses, nutritionist, etc.  All have been very nice and are doing all that they can to educate and help us walk this difficult medical path as best they can. 

Prayers and Praises

• Praise for our cardiologist.  He is straightfoward and caring.  One of the other drs scheduled a follow-up appt for Eliana next week.  He told us that our cardio would not be seeing people in clinic next week and so we'd be seeing someone else.  I wasn't really excited about this - seeing someone new that I don't know and that doesn't know Eliana.  Later when our cardio visited us, I mentioned not being able to see him and he told me that it was not a problem.  He would work it out so that we saw him.  I'm so thankful that he is willing to work around whatever scheduling he has to see us!


• Prayer - I will need to insert the feeding tube successfully 3 times before they let us go home.  I really don't want to do this!!!  I obviously will as I would do anything for my precious daughter.  Please pray that I'm a quick learner and that it doesn't hurt Eliana at all to have me "practice" on her. 


• Prayer for weight gain.  We want her to gain weight so that she is in better health nutritionally.  This will help her to do better in the surgery and the recovery.


• Prayer for her heart.  We don't know the effect of increased feeding/fluids on her heart.  It may cause more distress.  If so, the surgery would obviously come sooner.


• Praise - our cardio is working to plan a surgery date for us.  He knows that we will need to make care plans for our other children and is willing to try to set a date in March for the surgery - with the understanding that things may change.  I appreciate that he is sensitive to our family's needs.


• Praise for the wonderful family and friends that we have!!!  I am so thankful that Roger and I can focus our attention on Eliana and know that our other children are in good hands.


• Prayer for the health of our family.  There is so much yuck out there.  Please pray that we can not get it!  We are trying to be very careful about our exposure and have greatly limited our time outside of the home. 

We are hoping to go home tomorrow!  Need to run as someone is here to deliver medical equipment.

More later if possible.

Love, Leslie