Friday, June 15, 2007

Eliana is going to need another surgery

Hi Friends,

I must confess that I've had a very hard morning.  I had a good long cry.  Well, I'm not sure it felt "good" then, but thankfully it did help me to feel better.  I often feel like I'm riding on a roller-coaster - though the highs have been small and sweet like a laugh or giggle from Eliana, a picked flower or a hug from one of my boys or a precious note from my oldest daughter.   

I'm struggling with feeling so weak.  I wish I could be someone with a testimony of being strong in the midst of all of my struggles.  I see what others are going through and their message of hope and strength.  I want to be able to share that as well, but there are times when it just feels so heavy.  I feel like I'm just not measuring up.  I still have so much to learn. 

I know that in all of this that it is only through God that I have any hope at all.  It is only His strength that carries me from day to day.  It is only His love that enables me to function on days when the pain is great.  I know that He loves me so very much.  Why do I struggle then so much with my feelings?  It isn't all the time, but more often that I'm used to feeling.  Is it a lack of faith?

I sometimes wonder if I should write or type at all when I'm feeling emotional.  I do have many moments of happiness, joy and blessing.  I hope that I share those too, though maybe not enough?  I have been open about sharing my struggles and sometimes wonder if I should be more private.  Should I be working this out privately?  Does sharing the struggles cause more harm than good?  I have gotten such support though that I continue to just lay myself out there.  I think that being honest and real has great benefit - to me and hopefully to others as well.  Sometimes though I wonder. 

Here are a few of the things for which I would love prayer.

Surgery - Eliana is going to need another one to place a G-tube to help with her feeding issues.  :cry:  I expected it, but it is not ever something you want to hear.  We meet with the surgeon in 2 weeks to have some testing done and find out more.  I really don't know what to expect there.  I know this is necessary and will be for her good.  I also know that there are risks associated with any surgery and wonder about the unknowns associated with having a G-tube. 

I do know that in Feb when we were considering the need for a feeding tube that I talked with some people then and decided that the G-tube looked like a better option since the NG sometimes caused oral aversions.  The cardiologist decided on NG as it was not a surgery and he wanted no other surgeries at least 6 weeks prior to her heart surgery.  He thought we did not have that time.  Obviously hind-sight is clearer and we know now that she did have time and unfortunately she also has some (significant?) oral aversions.  Her feedings are not improving.  In fact, yesterday she took just one ounce orally.  Thus far she isn't doing much better today.  In fact at her last feeding she was awake, but would cry anytime the bottle touched her mouth.  She ate nothing from the bottle.   

When meeting with her feeding therapist, she said something about the G-tube and then 18 months.  I questioned this - 18 months?  That is a long time.  She replied that many people had them for years!  *sigh*  So many struggles for so long.   

She is making great improvments in the physical areas though and it is fun to see her learning new things.  It's quite a different path to have to "teach" so many, many things that other children learn on their own and that we just take for granted that they will learn to do.  Things that she might learn to do "wrong" which would affect her body in adverse ways.  I'm glad that someone has figured this out, though I wish for a simpler way.  Yesterday during her PT (physical therapy) appointment she did very well.  Her therapist is marking her progress on a chart and she is advancing quickly.

Not surprisingly, being in heart failure for 3 months and then recovery did inhibit her development.  She is making great strides though.  She advanced 2 weeks worth in the last week.  She is not on the chart yet for a typically developing child, but she is close and we hope she will be on it soon.  I know that she is expected to be delayed, but we can still work and do what we can to give her every opportunity to develop as best she can.

Being at the hospital yesterday with Catherine was one of the most beautiful and amazing experiences.  I am so very thankful to have been allowed this experience with my friend.  Leaving the hospital though just washed emotions over me of feelings of failure and sadness (birth experience, loss of dreams, breastfeeding and even my emotions over everything).  I didn't expect this and it has been hard.  I hope that doesn't sound awful.  How can I feel this after being given such a gift?  I think it just brought things back to me. 

Catherine's move is coming closer.  This birth was always the signal that the end was near.  Something neither of us have really wanted to face.  :cry:  Please keep praying for her as she will be leaving all of her friends.  We both have many treasured and precious friendships here.  A blessing I will continue to have physically close and she will not. 

Sometimes it just hits me.  Like when I was arranging meals and the list of dates wasn't nearly long enough.  Or when I was driving home having just heard that Eliana will need surgery and wishing she was home so I could tell her.  I knew I could call, but just wanted a hug.  Because I knew what she was doing, I knew she'd be gone already.  Then the thought crossed my mind that sometime soon, whenever I wanted her to be home that she wouldn't be there at all. 

Now I'm wondering if I should even post all of this.  Sharing sometimes puts you in a very vulnerable position.  I'm feeling weak, selfish and a failure.  I know that God can use this for good.  I do trust Him or at least I'm trying to.  Could you pray?  If you have some verses of encouragment I would love those too.  My reading this morning wasn't the best choice. 

I appreciate the many times people have written to encourage me.  I appreciate so much that others are finding help in reading some of what we are going through.  I know that when I am reading of the struggles that others are going through it does help me to find many things in my own life to be thankful for.  I hope that I don't come across as ungrateful - I am thankful for so many things!  This path has just been hard.  I know that for some people it's hard to be around someone that is struggling so very much.  I am trusting that God will continue to use this for good.  I truly don't understand though I know God to be good.  Very good.

Love to you all,