Highs and Lows

I miss seeing these squinty eyes....

and this sweet smile...

and this laugh...

When we first arrived home Lily was eating her liquids well and we saw a few glimpses of her fun personality come out...she wanted to play the piano, read books and hang out with her big brother. 

The past few days have been a little rough and Lily is pretty much sad and uncomfortable.  She just wants to be held and sleep most of the day.  She cries when I give her anything to drink so many times we resort to a syringe to feed her.   

As you can see the pictures above...her tongue is out in all of them and the drooling is excessive. 

We noticed some white patches on her tongue and e-mailed a picture to our doctor over the weekend.  Her nurse called me at 9pm Saturday night (another reason we love our doctor) and called in some medicine for a yeast infection she had developed in her mouth.  Lily wasn't thrilled to have two more medicines added to the list but we can already see some improvements and hopefully she she is beginning to feel it too.  

Below are pictures of Lily with Dr. Buckmiller and her nurse Emily right before surgery.  She was making them laugh with her squinty eyed smile.  I printed out a picture of her doctor a few days before her surgery so that she would recognize her when we met.  When I showed the picture to Dr. Buckmiller she made sure to wear the same hat the day of surgery that she was wearing in the picture.  Lily definitely recognized it when they both walked into the room. 

Lily loves to curl up in a ball on her tummy when she sleeps with her feet tucked up under her and her butt sticking straight up in the air.  I find her this way every morning snuggled up in the corner of her crib. Even the no-no's (arm splints) haven't stopped this girl from getting into her favorite position...she just has trouble breathing this way right now so she isn't sleeping well at night. 
pre-sugery without her no-no's
We take shifts eating dinner so she doesn't have to watch us eat in front of her.  Lily loves all kinds of food so I'm sure it would be difficult for her to understand why she can't have what we do right now.  I talked with a parent who told me they did this when their child had palate surgery and I'm thankful for the idea because I'm not sure I would have thought of it on my own. We are two weeks and counting until our follow-up appointment and we pray her mouth will have healed enough to begin some soft foods at that point. 

Lily continues to be brave and resilient through it all.  She has such a calm and gentle spirit and a strength within that will serve her well as she walks the road God has set before her.  It could be a lot worse so I try to focus on the positive and be thankful and content for where we are right now in the healing process.  Every day gets better and it is one step closer to hearing her say her first words...oh, how I look forward to that day!

We are all called to speak up for those who cannot speak for themselves...we are so grateful that God has entrusted Lily to us and we will be her advocate and voice through the valleys and mountains we climb together.  

"Speak up for those who cannot speak for themselves..."  Proverbs 31:8a


Post Surgery Update

Thank you for your prayers for our sweet little girl.  We felt everyone of them and continue to see God's hand at work throughout our journey. 

Lily was a trooper prior to surgery...she was full of smiles and she had fun making her doctors laugh with her "squinty eye" face. 

Of course, if she knew what they were about to do to her that would be another story.  We laughed when we looked at this picturee tonight...it's the "Just wait until I get my arm splints ("no-no's") on after surgery...I'll get you back with my new weapons-ha!

Lily's doctor felt very good about her palate repair and we are very grateful.  Post-op recovery has been a little rough going most of the day...lots of agitation and restlessness and trying to play the balancing act of monitoring pain but not giving too much meds to affect her breathing. 

In recovery...the first time I was able to hold her again after surgery. 

I was holding up really well until her oxygen started to drop and she was having trouble breathing when I was holding her back in her room...it probably only lasted a few minutes but it seemed like forever to me before she was back to a normal level.  So... the little oxygen mask has been close by my hand and I have a perfect view of her oxygen levels just as my own safety net.  They did turn it off tonight because she is sleeping better and her breathing looks great....plus she needs to be off of it in order for us to be released to go home. 

It looks like Lily has turned a corner the past few hours.  She is sleeping more peacefully and her pain seems to be under control.  That makes Mama and Dad VERY happy.  She even woke up briefly and pointed to her "lammie" and helped me press the button to play her favorite song.  When it started she made her "i'm happy/proud" sweet sound that we love to hear and even tried to give us a smile...she continues to amaze me. 

To see your little girl in pain and have no control or any way to make it better is heart-wrenching.  All we can do is hold her hand and love on her.  We read this verse earlier this week and it has brought me comfort today..."For I, The Lord your God, hold your right hand; it is I who says to you, "Fear not I am the one who helps you." (Isaiah41:13).  His hand has been holding hers long before ours and that gives me great hope and peace.  He walks the road ahead of us and is paving the way for every mountain and valley we will face. 

Please be in prayer for our trip back home...we have a long drive ahead of us and I am just praying that we don't have any complications with Lily along the way and that she can rest well without too much pain. 

Off to try and get some rest for the night.  I will leave you with this sweet video we got of Lily while we were waiting for her to go back to surgery.  I can't wait to see that sweet smile again very soon I hope... 



Surgery Update

Having some computer glitches so I'm going to do a quick update from my phone.
Lily is scheduled for her palate repair tomorrow (Tuesday) from 8:30-11:00 am.
Please pray for the following...
*her doctor and the team working on Lily
*for Lily to respond well to the repair and have a voice that is intelligble and that she is eager to learn to talk.
*for minimal pain and discomfort after surgery
*for lily to be able to eat well and adjust to her liquid diet for 3 weeks
*for peace in our hearts as we send our little angel off to surgery

We know that she is in the best hands of all..our sweet Savior...and He is preparing
the way for us.

Thank you for lifting up Lily as God brings her to mind.
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