Monday, May 14, 2012

God's Got This

I will post Rylyn's medical updates on my blog. We want to keep everyone abreast of any news good or bad and the prayers coming. This is the easiest on us during this time of chaos and will help keep the phone and inboxes at bay. As soon as we know, you will too. I think I may cash in my home cleaning gift certificates this month! :D
____________________________________________

"Thriving."

That's what was written on Rylyn's 6 week report when we were being released from midwifery care.

***
Friday:

"She's not thriving. She's not growing. If she loses more weight, we will have to hospitalize her. She has an ear infection because her immunity is down, that is what is causing the fever."

These are the words presented to us by the soft-spoken and gentle pediatrician we have been seeing the past two weeks only three days ago. If I wasn't paying attention to semantics, it would be like listening to the gentleman, and friend, with the English brogue reading scripture at church.

There is one blood test not in. We are warned that if that blood test comes back negative we would be looking at testing for Cystic Fibrosis (CF). My eyes well and I feel like I am in somebody else's body.

We leave the office and drive home to find a blessing: a phone call from the pediatrician saying the blood test is positive for Celiac Disease and we would be scheduled with the GI unit at McMaster for more testing.

***
Friday night:

I start a medical journal. To help ease my mind, I write down questions for our Monday appointment with the pediatrician.

For the first night ever, Addisyn is in her crib and I am in my own bed with Chris. We had been co-sleeping: me in my bed and Addy in the bassinet or Addy in her crib and me in the single bed across from it in the nursery. The initial relieving effects of the phone call we had received earlier were wearing off. Rylyn's room shares a wall with Addisyn's room. My mind needs  peace...the less I can hear the better. I am still worried about the unknown and CF. The seed had taken root. I cry and pray myself to sleep.

***
Saturday:

It is clear Rylyn is fighting something. I look at her. Really look at her. She lies on my chest. I count what is left of the rolls on her body. Two. One on each thigh. How didn't we notice earlier? Thank you God for this step back to look. Thank you for Addisyn...healthy, happy. Thank you for two parents on leave together.

I close my eyes to sleep that evening and I see my little Rylyn in a coffin. Why am I thinking like this? I realize I still feel like I am in someone else's body. Trying to uproot my worries, I cry and pray myself to sleep.

***
Sunday (Mother's Day):

Rylyn needs sleep. We can't go to church. I am still thinking about the unknown. I am still thinking about CF. Her cough has worsened but her fever is gone. I need to know people are praying. I really wish I could go to church today.

"I figure if people can home school, I can "home church" from time-to-time." The words of a wise friend come to mind. Thank you Jeanette. I sing and put on some worship songs as I "home church" and use the Internet to my advantage. I request prayer. I know Chris is at church leading worship and requesting prayer there.

Chris's parents feed us lunch. My parents feed us dinner. I know people are praying. I feel more like myself.

***
Monday (Today):

Everyone including the 2 month old has slept through the night, except for me. I have been up refilling the humidifier, checking for breathing...etc. But I slept better than the previous nights.

Drs. Appointment:

"CF is off the table. If the next Celiac test comes back negative, which is very rare, it is something else. However, your daughter's cough has worsened, I want chest X-rays to make sure it isn't pneumonia."

CF is off the table. It was never the Celiac that caused the fear it was the CF. It is what I need to hear. Celiac and pneumonia? I can do this. My "out of body-in body" experience is over.

"God's got this." I think of the words I wrote to a friend in a card a few weeks back. She emailed me the same ones in a note of encouragement this morning. The night she opened the card she had said, "I am going to make this my new life motto." I think I have found a new life motto too.

***

No pnemonia. Initial consultation with MacKids GI Unit tomorrow. God's got this. In the meantime, Addy and I will be blogging as Rylyn naps. Alongside the support of prayer I will be singing these songs:



4 comments:

  1. It's so nice reading something I can so readily identify with. Between Aria's coughing, unsteady breathing and lack of weight gain I was already worried. When the doctors mentioned C.F my whole world stopped. Its been balancing her many tests with my 6 year old, and sanity.

    I'll keep praying for your little girl, and your family. We both can pull through this, and at least out of the whole ordeal, I've made a wonderful new friend! <3

    ReplyDelete
  2. Praying for all of you!
    All of Psalm 139 has been my life line while raising children. Especially vs 13-17 "You made all the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous - how well I know it. You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment laid out before a single day had passed. How precious are your thoughts about me, O God. They cannot be numbered!"

    Our great God, Lord and Savior knit together Rylyn in your womb.....lovingly....knowing. May He provide the grace, strength, wisdom and faith for the journey He has laid out for your family.

    ReplyDelete
  3. I wrote anonymously that I have a friend whose daughter is facing some unknown health concerns on our floors prayer board. My entire floor of girls, and some of the boys, are lifting your family up in prayer.

    ReplyDelete
    Replies
    1. Hows the little girl right now? Be still and rest your worries on God. Nothing is impossible to God.

      Delete