Wednesday, June 9, 2010

Roller Coaster Of A Week...

Our GI check up and pulmonologist appointment went well last week. Skylar was almost 11.5 pounds and her lungs sounded clear. Her heart rate has gone back to normal and she's been giving smiles again. However, Thursday after her pulmonologist appointment, she dropped three times into the 70s and it was exhausting - for her and for me. I put her on the bi-pap for the night and hoped for a better Friday. Skylar did well for most of the day and then in the evening, the alarm sounded and it was forever getting it to stop. Her oxygen stayed in the 80s - all over the place - for a good 20 minutes at least (which seemed like an eternity). After using the cough assist, suctioning every place the catheter would reach, and still having no progress, I just wanted to cry... Not only because I knew Skylar was struggling, but also because I couldn't help her and I know that there will come a day where I won't be able to save her. Thankfully, she stabilized, I put her on the bi-pap and she slept through the night. I collapsed on the couch and was totally exhausted in every sense of the word. She did well over the weekend, then had a repeat of what I just mentioned Sunday and Monday. Thankfully, the past two days have been "normal" and she's been great (which also means that I have been great too).

Living day to day is our only option - if we think about the "what if" or the "what could happen" we won't survive. I can't even begin to describe the heartache I feel some days... I don't want to depress everyone reading this, so I do want to let you know that I have great days too. When Skylar smiles, especially when she giggles, I can't even begin to describe the joy in my heart. I am realizing more and more what a gift she truly is to us and those who know her. The love we've felt and the way God has moved so far has been nothing but amazing, for lack of a better word. With the fundraiser coming up and people sending in donations already, we're extremely blessed and want to thank all of you for your generous hearts. Tessa, the photographer who is heading this up, made us a website at to promote the event. We also have an event on facebook as well as more information on the "help fight" page of Skylar's website. If you're planning on attending the fundraiser, be sure to sign up for a time so we can make sure to have a smooth schedule that day :)

So back to my crazy week and thoughts in my head... Sunday, the sermon was speaking from the text Luke 7:11-17 about the widow from Nain whose son had passed and Jesus raised him from the dead. Jesus had compassion on the woman and raised her son from the dead, not because he deserved to live a little longer on earth, but because Jesus saw the mother and had compassion for her. I have thought a lot about how things work these days - Jesus versus the Holy Spirit. If Jesus were here on earth right now, you better believe I would be doing everything possible to get to Him, to catch a glimpse of Him, to touch Him, to be seen by Him and beg for His healing hand to touch Skylar. However, He left us with the Holy Spirit instead... How does that work then? I feel like screaming at the top of my lungs, "DON'T YOU SEE ME??? CAN'T YOU HEAR ME??? WHERE IS YOUR COMPASSION???" but I know it doesn't work that way. I am not entirely sure how it works really, but I am waiting in hope, praying that God would see me, that He would hear me, and that He would have compassion to heal Skylar.

I stumbled upon another Ginny Owens song called "I Am" that I haven't listened to in years, but was really encouraged and reminded that no matter what God asks of us, no matter how inadequate we feel to carry out His plan, it's not our problem...

No Lord, he said, you've got the wrong guy.
Simple conversation gets me tongue-tied.
And you're telling me to speak with a maniac king.
Could it be I've lost my mind?
And besides, I am weak, don't you want someone strong,
To lead them out of Egypt when they've been there so long?
And anyway, they wont believe You ever spoke to me.
That's not your problem, God replied.
And the rest is history.

There's a bigger picture you can't see.
You don't have to change the world, just trust in me.
'Cause I am your creator, I am working out my plan,
And through you I will show them, I Am.

Now Lord, are you sure? He's just a shepherd boy,
Too small for battle gear with a giant to destroy.
What on earth can he do with five stones and a sling?
That's not your problem, God replied.
'Cause I can do anything.

There's a bigger picture you can't see.
You don't have to change the world, just trust in me.
'Cause I am your creator, I am working out my plan,
And through you, I will show them,
I Am the first, I Am the last,
I Am the present and the past,
I Am tomorrow and today,
I Am the only way.

Great Lord, she said, I'm just a simple girl.
You say that I will bring your son into the world.
How can I understand this thing You're gonna do?
That's not your problem, God replied.

'Cause, there's a bigger picture,
And you don't have to change the world.
I'm your creator, I am working out my plan.
And through you, I will show them,
There's a bigger picture, you can't see.
You don't have to change the world, just trust in me.
I'm your creator, I am working out my plan,
And through you, I will show them, I Am.

So that's the end of the song... I feel like adding my own verse:

Please Lord, she said, Skylar's just a small child,
I don't know if you're gonna to take her, or let her stay a while,
How can I understand what You're going to do?
That's not your problem, God replied.

Anyway, it's been an emotional week for me, but it's been good. Kyle and I have had some good discussions too... We're at the point where we have to build on the property we own (that has an un-livable house rotting on it) or sell it so please pray for us in that decision. We both fell in love with the property two years ago, but can no longer afford to keep it in its current state and are trying to figure out if we can afford to build a tiny little bungalow (we didn't get chosen for Extreme Makeover Home Edition unfortunately). We have some other big decisions too - to buy or lease the van we're going to get is one of them. We're in the application process for medicaid (please pray for speed with that because they move slower than snails and find every way possible to delay you). We are also trying to get a nurse to come to our house to help me - even just cleaning her equipment and doing her feeds and the dishes associated with that would be a big help. I'll keep you updated :) Thank you for all of your prayers!


  1. Hey sweet friend,

    Reading about you and your sweet little baby girl makes my heart melt. I remember Kyle telling me that you were pregnant, and I (and I'm sure you) never imagined that Skylar would have anything wrong, nonetheless something so serious.

    Anyways, I think you're doing a wonderful job. I am encouraged by your honesty, by your struggle, by your longing for God's healing, by your quiet faith that He is in control if He doesn't heal. He is using you in a mighty way, my sister.

    Give your little girl (who I hope to meet when I'm actually close) a kiss for me.

    I love you,
    Meredith Nielsen

  2. hey ash! I love reading your blog because I love how real it is. the good and the bad. i'm sorry you had such a chaotic week, but you are such a terrific mom!

  3. Hey Ashley,
    You may remember me. I am Dan and Emily's (McKinney) older sister. Emily told me about your blog...I have had a wonderful time reading about your sweet girl. She is absolutely adorable. I marvel at the faith and strength that you possess through all of this. I pray that you will continued to be strengthened and that your little girl will have few complications.

    I also wanted to let you know that I am a nurse in the ER
    at Scottish Rite. I hope to not have the occasion to see you there (because who wants to go to the ER!), but I'll try to keep an eye out for you, just in case. Having had to take my own daughter there before, I know that it is nice to see a familiar face during a stressful event. Also, if you need any help with anything, please let me know.

    Skylar is obviously a lucky little girl. She has a mom that loves her so much and fights hard for her. :)