Today's update:
The good news -- Nixie is getting her breast milk feedings again! They started her this morning, and so far they haven't seen any residual (undigested milk). Hopefully that means her little belly is feeling better. And, it is looking like her infection might be going away. We will find out tomorrow for sure, but it looks like her antibiotics are working.
The bad news -- we got some tough news that involves a decision on our part. Phoenix's lungs are showing signs of inflammation from being on the ventilator so long, which poses some formidable risks. Our doctor suggested that her lungs look like they are on their way to developing BDP (bronchopulmonary dysplasia), which can involve chronic lung disease, mechanical dependency or even death. She could outgrow BDP symptoms, or it could be pretty bad. His suggestion? Give her a steroid called dexamethasone. Unfortunately, this drug has some potential side effects -- it is an immunosuppressant, so that would make her very sensitive to infection. And the long term side effects could affect her brain and her growth.
Since the ideal window for administering dexamethasone ends at 14 days, we really need to make the decision by tomorrow.
But here is what we want instead: we want miraculous healing of her lungs by tomorrow (meaning she could get taken off her ventilator) so that we don't have to choose the lesser of two evils.
Go read Genesis 18:16-33 (click here). Seriously, go read it.
That passage makes me a firm believer in audacious prayer; I believe God wants us to ask great and impossible things. We could easily ask you to pray against side effects from the steroid, but why not ask more of God? He has proven Himself capable! By the end of Genesis 18, Abraham realized how much the response of God depended on his own willingness to ask boldly.
So be bold in prayer with us, and ask for her healing!
Here is the deal -- "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"
I am praying! HARD!!
ReplyDeleteMy prayers are with you
ReplyDeletePraying Emily, we love you and God's hand is on your family!
ReplyDeleteJosh and Emily, as I pray for your family and for total healing for Nixie's lungs I picture her breathing on her own. It is truly amazing that when we can't hold someone dear to us Jesus can, he's holding Nixie now! He loves his little ones :) Psalm 91 is an awesome battle cry as you pray with boldness! You have alot of prayer warriors on your side praying with the boldness that you've asked for. Thank you for the blog, it's a great idea. Love you! Nola.
ReplyDeletepraying, anticipating, and expecting God's miraculous healing!
ReplyDeleteHi Josh and Emily,
ReplyDeleteWe have never met, but we have many, many mutual friends. Ironically enough my name is also Emily and I am also mom to a preemie who is now two years old. We spent 2 weeks in the NICU with him, but we also spent the next year and a half in and out of hospitals and specialist offices and it was one of the most difficult things we ever experienced as a couple and as a family. However, it is also the single time in our lives where we saw God move more than any other. He is sovereign and he loved our sick baby more than we can even imagine or understand. As I came across your blog tonight and read through it tears filled my eyes, memories filled my mind, and my heart cried out for you and your sweet little girl. I am joining you in prayer for your baby for complete healing as well as for an overwhelming amount of peace for you both!
To Josh and Emily:
ReplyDeleteI love fb...it gives me a way to stay close and be a part of peoples lives that I have befriended over the years. I have watched your wonderful relationship grow...then your marriage and now sweet little Nixie! I feel like even tho I haven't seen anyone in years...I was called to be a prayer warrior in this situation! I have others praying as well. Know that I am out here...along with so many others...praying praying praying...
Josh and Emily,
ReplyDeleteI ditto what Nola said and want to agree in the boldness of prayer. We will be praying for you all!!!
Love, Cindy Burchell and family
Definitely praying for and with you!
ReplyDeletePraying for your sweet girl. Jenn and the Stahls
ReplyDeleteContinuing to agree in prayer for Nixie! Praying for His touch on Emily as well and that you are wrapped in His amazing Love. Praying that your family feels His peace that passes all understanding and the Power in the name of Jesus! God's Blessings and Love, Nola.
ReplyDeleteMy grandsons were in NICU for two and half months. I'm sure all the prayers and healing energy sent to them are why they're doing so well now. Miracles do happen! Sending you both prayers and healing energy!
ReplyDeleteJeanie Biberstine
We are praying too! Your boldness is an encouragement and inspiration!
ReplyDeleteAaron & Jessi Kipfer