Note from our pediatrician

I received a note from Eliana's pediatrician today.  Have I mentioned lately how much I appreciate her and the attention she gives to Eliana.  I am so thankful to have a doctor that knows her - and cares about her and is willing to care for her during her off hours.  She has been a real blessing!  We met her at the hospital after Eliana was born as the doctor doing rounds.  The NICU doctor connected us with her as someone that would be very helpful.  She was so much more attentive and helpful to us than our regular ped during this time.  (He didn't have time to stop to talk to me, just peek in my room and say hi.)  We decided right then to switch practices and haven't regretted it for a minute!  I thank God for placing her in our lives. 

Here's most of her note to me.  I've edited and removed all names.   

Just had a nice conversation with Dr. C. He and I agree that if the OT's think they can make significant improvements in her feeding in the next month or so, we can wait on the GT, but if they are not optimistic about improvement soon, we ought to go ahead with the G tube. He says Eliana is doing SO well from a cardiac perspective that he doesn't need to see her again for a while, so you and I will be (if needed) making the Pediatric Surgery referral, and they'll do the pre-op cardiology eval if she requires surgery. She'll also need antibiotics pre-GT, if it is done. I think I'm leaning to a 1) borderline oral motor skills PLUS 2)the aversion issues of NG tube, endotracheal tube, oral suction, etc as the issue here. I am doubting the reflux, but Prevacid should help if it exists. Perhaps (3 feeding specialists we have seen) can convene and see what their shared perspective is.  Just call me after you see OT, and we'll think things through.

So, we have a plan and a direction.  I appreciate that she noted that it would be a joint decision/referral.  I appreciate how she looks at the whole picture - quality of life she calls it - in terms of our care for Eliana. 

If you are reading this, I would love prayers for our therapist.  We will be seeing her tomorrow morning.  Prayers for wisdom in knowing what the future is looking like in order to make the best decision for our sweet girl.  Prayers for peace with whatever the decision may be.

This journey is not one that I would ever have chosen, but admist the struggles I have been blessed over and over again.  Many, many times God has used precious friends - and strangers turned friend - to touch our hearts and bear our burdens.  I pray that as I walk this path that I would learn to do so with peace, love and trust in the One who loves me completely.  I still have much to learn.

Thank you for your love and support!

With love,

Leslie

  

Maybe I should have chosen a different name

for my blog.  I don't feel so joyful right now.  I feel like I cry so very often - and wonder how long it will be before tears cascading down my face aren't the norm.  For those that don't know me in real life, I wouldn't consider myself a crier at all.  I really don't like to cry (and thus avoid sad movies and books as best I can). 

Today just a simple something has sent me into tears and I'm having a hard time stopping.  Today I started working on setting up meals for my sweet friend Catherine.  We've done this back and forth for each other many times over the years.  This though is the "last time".  Each of these "last times" is hard.  She is due to have her baby next week and I am hoping to set up meals beginning when she comes home until they move.  Just thinking about that breaks my heart.  It's so close now.  I'm working on a month of meals - just a month.  How can it be here already?  We knew that the day would come and it a little easier to ignore (for brief times) when it was further away.  No more of that now. 

Please pray for us as we deal with a lot of emotions over this move.  We've walked beside each other for the last 17 years - through marriage, pregnancies, miscarriages, Down syndrome (both of us!), surgery and more.  Some of those were things that were so exciting to go through together.  Others have been hard and painful.  Moving was not one we ever expected.  Just seeing the for sale sign in her yard seems so wrong.  This just wasn't the plan when we built our houses beside each other 8 years ago.  I am so very thankful that God blessed me with such a precious friend so many years ago.  I know that our friendship will not end, but it won't be the running back and forth to each other's houses that we are so accustomed to doing.   

I know God can and will work in all of this for good.  It's still hard though.  I've been crying on and off for hours.  The weight of all that I'm dealing with still feels so very heavy at times.  I know things will work out.  I know that God is with me - carrying me much of the time.  I know all of that - but I still feel sad.  Need to go as I have three wild little boys.  More update later on the conversation between Eliana's cardiologist and pediatrician.

Tearfully,
Leslie

ETA:  It's 7:30pm now - a couple of hours have passed and I'm doing much better now.  Well, at least I'm not crying any longer.  I'm not sure much will take away the sadness.  The distraction of supper and a house full of active and noisy children does help!   I love being a Mom!  (That was why I chose this name for my blog.)  Being a mom has been the most amazing experience.  I've learned so much and wouldn't trade it for the world! 

I thank God for the opportunity to be a wife, mom and friend.  I am thankful for the many blessings in my life.  I am seeking to find joy in the journey - to find my joy in Him.  Some days it is really a struggle.  I am hoping to learn to rest in Him, to cling to Him and to live only through Him.