Update from the weekend...

I'm not as good at this as my sister, but I'm gonna try and give you guys an update.

Here is where we stand as of yesterday:

• They are increasing her milk intake (still through the feeding tube) 5 ML every feeding and decreasing the rate of her IV fluids and lipids as she goes up on the milk feedings. Her tube is through her nose now so that she can practice having a pacifier during feedings to relate a fully tummy to the sucking reflex.
• Taking her off the Keppra (Keppra is best used for partial-onset seizures—that is, seizures that begin in a limited area of the brain. Sometimes these seizures spread throughout the brain (generalize). Usually, Keppra is added when another seizure medicine is not controlling all seizures, rather than being used by itself. Keppra generally is not effective against absence seizures and infantile spasms. It may be somewhat helpful in treating myoclonic seizures. ) today, Monday, but she's still on the Phenobarbital (Phenobarbital, a barbiturate, is used to control epilepsy (seizures) and as a sedative to relieve anxiety. It is also used for short-term treatment of insomnia to help you fall asleep.)
• The IV line that is currently in her belly button (bc it's the best and least invasive place for them) is coming out today...so hopefully we'll be able to hold her now!! PRAISE GOD!! The only things that she has left to take through IVs is her antibiotic (down to only one) and her phenobarbital.
• She is having even less tremors the last 2 days, but they are still pretty evident and are still not completely diagnosed.
• At 3 of her feedings (which are a 3, 6, 9, and 12...so 8 times a day) we get to do "range of motion". Joe has had so much fun getting to do this bc we get to touch and play with her. He massages out her hands, stretches her arms up and across and over and down...talking to her the whole time. Then he moves on to her legs and gives them a good stretch at each joint. It really is fun to watch him interact with her.

• We are also getting to change her diaper and take her temp when we are there for feedings. Joe has gotten to change a couple...really good practice. Somehow he has managed to not have to do any of the dirty ones...that will change when we get home!!
• She is getting "tummy time" after some of her feedings so she can practice raising her head and strengthening her upper body muscles.
• Yesterday we came in and she was in a cute pink outfit...I'll post those pics.

Your prayers have been answered in so many ways. I can't even find the words right now to express this. As I look back over each day and the prayers that were lifted up I can SEE God's answers. They weren't always as fast as we wanted them or exactly as we wanted them, but as each of you (and others) were on your knees it was so obvious what God was doing. I know that my prayer life has never been stronger, but also never been more real. God asks us to seek him and to honestly search for him with all of our heart...I think he got our attention these last 12 days. He desires for each of us to come to him daily and all day long with the same urgency that we came to him for Ella...I hope that through this trial of ours it has showed you the majesty of God and the love of Christ. Please continue to pray for our family. Not only for medical reasons, but just bc we are a new family trying to follow God and his will for the 3 of us. Likewise we will pray for you all. Maybe not by name, but God knows who has lifted us up and will bless you for it.

Here are our current prayer requests:

• For a poopy diaper (that's a prayer that makes me smile). As Ella is getting all of this milk straight to her tummy we haven't seen any come out. We know it's not in her tummy bc they check before each feeding, so just prayer that it's all functioning correctly and she starts to wake up her bowels.
• That we CAN hold her today. It's amazing how your arms can literally ACHE to hold your child. I haven't held her next to me since that Wednesday night she was born and I'm so ready to just sit down and get to rock her.
• That the tremors continue to fade and become a non-issue. I'd like for them to not cause her any pain, and you can't really ask a baby what's uncomfortable and what hurts.
• For Joe and I please pray for rest, patience, peace, true understanding and trust. We know that God is in control, I don't think we could handle this all otherwise, but just giving Ella to God with open hands is sometimes rough. Please continue to just life us up as we learn to be parents and learn that she is a gift from God and is ours, but only through Him.