Monday, June 10, 2013

The Weekend

We spent a (relatively) uneventful weekend at Lurie Children's Hospital in Chicago. 

The doctors have Ella on some special creams for her eczema and a zyrtec-like medicine for the itching, and she looks like a completely different baby.

She's also seeing a speech therapist (not really for talking issues, but for the mouth sensory difficulties) to help us get her to drink liquids.  Ella has extreme sensory problems with putting things in her mouth (even her own fingers), so getting her to willingly accept a cup of liquids to pour down her throat is like scaling Everest - it can be done, but not overnight.
Our therapist said to imagine if "every time you walked through a door, something on the other side smacked you in the face.  Of course you'd be afraid of doors!"
Well, since birth, every time she's tried to swallow something, it's hurt.  It makes complete sense that she wouldn't want anything near her mouth. 
Unfortunately, all of the therapies for sensory issues take time, and because Ella's nutrition and diet is so low, they had to put in a naso-gastric tube so that in the meantime they can pump her full of calories and good things.
As well as helping her get adequate nutrition for the first time in her life, it will (hopefully) also help her stomach recognize the "Full/Empty" feeling that will give her some impetus to eat.  (They're feeding her through the tube every few hours, and a continuous feeding only at night while she's sleeping).  It should also help her stomach expand so that she can get used to eating more.
Most likely we'll be going home with the tube in place, and I have to learn how to insert it myself (ick, ew, ack!) because it will probably come out a few times.  (It came out three times yesterday; it hasn't yet today, so I have hope that this "insertion technique knowledge" will never have to be used).
Right now the doctors are telling me it will be the latter part of the week before we're released to go home.  (Goodness, that makes us sound like either criminals or Madagascar Lemurs).  We still have some more immunology testing to do, and they want to insure that Ella's gained weight and won't relapse.
Find rest, my soul, in God alone.
My hope comes from Him.
He alone is my rock and my salvation;
He is my fortress and I will not be shaken.
Trust in Him at all times, O people;
Pour out your hearts to Him,
For God is our refuge.
~ Psalm 62


Merry said...

Wow, I can't believe how clear her skin looks! Praying she continues to thrive there and that you can all come home soon! Merry

Anonymous said...

Praying for Ella!! So thankful your mom shared your link . Our youngest son has experienced a similar situation . Praying for peace and strength for you, wisdom for your medical team and strength and improvement for Ella. HE is with you each minute and step of the day !! Stephanie Schaeffer

Melissa Humphreys said...

Holding baby Ella, you, and the rest of the family close in heart and prayer, Rachel. Have prayed over a verse of scripture to share, one that will offer you the comfort, reassurances, and love you surely so direly need right now. This is what HE laid on my heart...

Jeremiah 29:11
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." (NIV)

I have NO doubt this applies to all of HIS children: you, me, sweet Ella...

Much love friend.
Melissa Humphreys
P.S. Please pass along to Peter that Sam says "Hello" and would love to hang with him again the next time he's back down this way visiting Ellen.

Anonymous said...

Dear Rachel, I am honored your mother share this link with me. You are an amazing mother, Ella is so blessed to have you advocating for her! My prayer for you is God continues to give you strength when you are weary, wisdom when you are confused, and love when you are exhausted. As you finish each day, please have peace knowing God's hand is in all of this. God loves you and your sweet, precious baby girl Ella - you are not forgotten! I will be praying for you, Ella, and your family.
God bless!
Brenda McCauley (your mother's friend)