Saturday, September 4, 2010

Downs and Ups...

Lots to update you on... This is going to be a long one, just warning you! However, I just posted pictures to give your eyes a break first and for you to enjoy :)

I have to apologize for not posting sooner, but the week after my last post, we had one of the worst weeks thus far to the point where we thought we were going to lose her. I just couldn't bring myself to post anything because I honestly didn't have the words. It was miserable, torturous, and full of struggling on all levels (physically for Skylar, emotionally for us, etc.). It was a really really long week... To top it off at the end of the week, Kyle watched her oxygen levels drop to an all time low in the 40s while I was at church (we take turns going to services) so when I got home, Kyle was sitting with her on his lap - he looked like he had just been hit by a truck and Skylar was still struggling in the 80s. Later, he told me what happened, how she turned blue and looked pretty much dead. We were beginning to think it was the end. A full week of struggles was new for us - usually it's just a day or two at most. I went to him sobbing one night because I didn't know how much more I could take. Being with her all day and watching her fight for her life constantly was hell for the both of us.

I went back to the beginning of the week when it all started and tried to figure out what had changed... If nothing had changed, then we were thinking her body was shutting down, but we had just switched to a new bi-pap mask. I immediately got on the phone with TJ (Nora's Dad) in TN because I knew they had ordered the mask for Nora. TJ's wife, Jaime, had posted something on the SMASpace (networking site for SMA parents) about the mask having an extremely high leak rate. After speaking with both of them, I started comparing that mask to our previous mask and realized the exhalation ports were extremely loud and didn't have caps to cover them like our old one did. Obviously, Skylar still needs to exhale so we don't want to cover both of them, but we decided to cover one of them to see if that helped. Night and day difference. Skylar seemed much more rested and was much more prepared to handle breathing on her own during the day after we blocked one. The next few nights we kept the port covered and she's been back to her old self :) It's amazing how one little change can affect her fragile body to the point of life or death. I put in a call to her pulmonologist to let her know what's been going on and she was okay with us blocking one of the ports.

This past week she was full of smiles and giggles again, which was amazing timing for my birthday. I had one of the best birthdays - Kyle made me breakfast in bed, Skylar had an awesome day and just seemed really happy, Ashley Manross brought me lunch and stayed to talk with me, and then that evening, after we had her on bi-pap, my in-laws came to babysit while Kyle took me to a Braves game. We got to witness a grand slam which I haven't seen in at least 15 years - Go Braves! This week has been really awesome. I have had a lot of wonderful friends come visit - and I got to meet Nora's mom, Jaime, who was in Atlanta for work. She came over and got to meet Skylar and it was just really nice hanging out with another SMA parent who understands everything, which is why I enjoy my hang out times with Ashley Manross as well. It's so rare to find someone who truly understands what it means to be an SMA parent - no matter how many times you've been to our house, seen the machines, witnessed us suctioning or doing the cough assist after her oxygen drops, etc... it's different to live it 24/7 and I am very thankful for the Manross Family, Gooden Family, Grimes Family and Miller Family and the support they've been.

Speaking of being thankful for support, our church continues to be amazing with friends and acquaintances bringing us meals. The messages on Sundays have been so comforting and encouraging recently even though they would probably seem "difficult" to hear for people in "good" situations or maybe not seem relevant. On Aug. 22, Kris (our pastor) spoke about going through life crisis events and hanging on for dear life hoping to make it through... and when the "shaking" is over, you're left with the stuff that matters. One scripture he mentioned was "For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope." That scripture sounds awesome taken out of context, but God was not promising an easy life... this was said right before the children of Israel were hauled off for 400 years of slavery!!! I'll keep it at that, but it was super awesome to hear and a reminder to ask God for endurance through the tough times. That Sunday was the start of our really bad week I mentioned at the beginning of this post... I am continually amazed how the messages at our church have completely paralleled our lives, specifically, my thoughts and struggles... It's just reassuring to know that I am not alone and that God is with me and is using scripture, our pastor, and the body of our church to speak to me. If you want to listen to any of the sermons, check it out!

I am also continually learning that I am not in control and I have to trust God that He is in control. Today, as a friend was over getting some preggo stuff from me, Skylar's pulse-ox alarm went off. Not typically startling, as this happens frequently in the evening as she gets tired, so I wasn't freaked out... until I looked and saw that her oxygen was not what set off the alarm, but her heart rate. This has happened once before where her heart rate dropped low but came back up right away and I just assumed it was a sensor glitch. Today was different. Her heart rate stayed low for a while, her oxygen then dropped (I'm guessing because the blood wasn't carrying the oxygen like normal since her heart wasn't pumping like it normally does) and she went pale. Ususally, if it's an oxygen problem, she turns blue, but this was all around different. I was more in shock than anything because I can't do a darn thing about her heart stopping. If I did any sort of chest compression, I would probably break all of her ribs, which would be so much more painful than anything else, especially since her problems are respiratory. What's weird was that I was just telling someone that we've been praying that her heart would stop so it would be a quick and painless way to go (at least not as painful or scary as not being able to breathe, starving to death, etc.). Nobody wants to see their child suffer... I ran a cough assist to pull any mucous out in case that was a problem and her oxygen came back up and her heart rate came back up halfway. Over the next 5 minutes, it returned to "normal" for Skylar which is insanely high for anyone else. I put her on bi-pap soon after to give her a break after calling her pediatrician since our pulmonologist is out of town (great timing, right?!). Luckily our pediatrician is awesome and has actually had hands-on SMA experience and is just a super amazing guy. Back to the point - all of these things are completely out of my control and I am trusting God (and learning to trust Him still) with the things I hold closest to my heart, including Skylar. It obviously sucks that anyone should have to go through this... I think of the awesome SMA families I've met who are all young, attractive, and just great people all around. It totally sucks. But, I know through this "shaking" that Kyle and I are learning so much, we're gaining so much perspective on what matters, growing as individuals and as a couple, and are going to come out better people than when we started...

We're hoping for a better weekend as we have family in town for labor day! With that said, I better get going. Thanks for reading my book this time :) Sorry I had to wait so long to post an update. I promise I'll try to be better about that! Peace.


  1. Hi Ashley-

    With this post, I really don't know what to say- I guess the only thing to say is that I love you guys and I'm praying for you and for Skylar.

    Big hugs and all my love,

  2. Thank you so much for your honest post. I don't know you, but I am growing to love you and your family more and more with each post. Thank you,Ashley, for your ministry through this blog. I hate hate hate hate hate that you and your husband and Skylar have to go through this. But you are an amazing witness of God's love and your faith is so awesome.

  3. Ashley and Kyle,
    This may not be something you are interested in right now, but Stuart and I followed a family that had a premature baby named Olive Hope.
    They lost her at 4 months, after many surgeries and quite a bit of suffering on her part.
    Lynette, teh mother of Olive, kept a blog journal(while Olive was alive) and still does (after losing Olive) that is very honest and real.
    I know you have many families around you that have lost children and they will be a sorce of comfort to you in the future.

    Anyway, here is the link:
    You will have to go quite a ways back to read their story....Olive passed away last year. Lynette has shared her thoughts on losing Olive and grief and living with a sick child and her questions to God.
    Praying for you two and Skyler.
    That God's arms would come around you at this time.

  4. Thinking of you guys all the time. Please let us know if you need anything!!