Huge Progress Begins NOW!

Skylar's feeding tube moved-like 7 inches outward & I was feeling really disappointed (and irritated because the nurse had laid her on her side-the side where feeding tube was & apparently it got caught on a blanket when she tried to move her & that's why it came out) but after talking to Dr. Baldwin, it seems like it was about time for the next step anyway so it was a blessing in disguise.

So the next step for Skylar starts today. Let's hope this goes well. Feeding tube is now going to deposit breast milk into stomach where it will then go downward thru intestines. This is a big deal because its basically going to tell us if milk flows thru past problem area like its supposed to. If it does, feeding by mouth will probably start by Thurs which is a lot sooner than I was expecting! And we have one less tube as of today! (Her repogal).

Its interesting too since she has 2 outlets from her stomach to her intestines...the natural area where the blockage was and the new area where Baldwin attached the stomach & intestine to bypass the problem area. Agrawal made it sound like the original area looked good so now maybe since its been longer, its had more time to heal so the bottom line is that as long as one of them works at this point, then stuff should flow thru & it will be all good.

Anyways, this feels like a really big deal to me. I feel excited for the progress & terrified all at the same time. Its kind of a weird sensation to be excited & terrified at the same time.

I feel really optimistic but I also don't want to get my hopes up. That's the part that terrifies me because disappointing news is crushing. But I just need to remember that this is a very slow process & we can't rush it. And even if she's not ready yet, it will be OK. She will get better & that will just mean she needs a little more time. But I've slowly realized through this process that she WILL get better & I WILL get to take her home! Yippeeee!

Part of me is sad because by the time we get to take her home & put clothes on her, she probably won't fit in newborn sizes & I had gotten her a bunch of cute clothes that she'll probably never wear. And by the time I get to take her "newborn" photos, she probably won't even look like a newborn anymore. But honestly, those things DON'T matter! Getting to take my baby home is what matters!!!

On a different note, I'm just thinking about how we take the simplest things for granted-like just the act of eating & swallowing. Poor Skylar has not been able to eat. We need to be grateful for EVERYTHING!!!

Without the bad, we wouldn't appreciate the good. So if you're going through something tough, hang in there. Ask yourself what you're supposed to learn from the experience & write down your thoughts so you can look back & see the knowledge you learned. After the trial comes the blessing.

Last night after we put B to bed, I couldn't get up off the couch to come visit Skylar. It felt so nice to just relax since I haven't had much time to do that. All of my free time has been spent at the hospital & I feel so guilty if I do anything else. I knew I was going to go visit her but before I knew it, it was really late. So I ended up leaving the house to go see her at like 11:30pm which is so late! I called at about 10pm to check on her & the nurse, Josy said she had been really fussy & she had just gotten her to calm down. I automatically thought that she was probably waiting for me! There was only one day previously that I didn't see her at all because of a sore throat & besides that, this was by far the latest that I visited her during the night hours. I got there & held her for awhile & she was calm, relaxed, & slept. And I heard she was good the rest of the night after I left so I'm convinced that she had just wanted her Mama! And I just wanted my baby! I love her so much!
My friend, Amy Lock posted this quote on FB:

“When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly”

What an awesome quote.

I'm amazed at how many people have complimented me on how inspiring I have been, how strong I've been, & how my faith strengthens them.  It's nice to hear...that I'm inspiring people although I don't get it really. I don't feel like I've done anything inspiring.  My friend, Shannon explained it in a way that made me understand though.  She said some people she knows would be whining & complaining the whole time.  So I guess I can see...I really haven't whined or complained too much.  I'm just taking it day by day & rolling with the punches but Heavenly Father is what's keeping me going.  Reading my scriptures & praying.
Most of this time I've felt like I needed to have more faith. I've wondered if its possible to have faith & be scared at the same time? Or can the two not go together? If you're exerting faith, should that mean you have no fear whatsoever? I'm not so sure.

But I find it interesting that others think I've been inspiring in this situation. That means a lot to me. I think for the most part I have handled it well. I've definitely had my moments of utter insanity but most people haven't seen that side. Most days I've felt pretty good about everything. I attribute all of my strength to everyone's prayers. I definitely don't think it has anything to do with me. I guess this is one of those times when you find out you're stronger than you ever could be.

Throughout a lot of this, I've felt like I've been going on auto-pilot. I feel like I've been desensitized to an extent which I think is a coping mechanism but I also think its strength from everyone's prayers. Most days, it really just has not felt as hard as it should feel. (I will ease the burden off your shoulders that you will not feel it upon your backs). (Mosiah...?)

I love my family.

I wonder how this experience has affected other people? Maybe someone said a prayer who had not prayed in a long time?

Last Tuesday (surgery day), McDonald's girl at drive thru was so nice. Just had upbeat positive attitude & it made all the difference. She seemed like she liked her job. Was just really nice to have someone smile really big & tell us to have a nice day. Needed it that day!  I want to go back to that McDonald's and give her a thank you note to let her know the impact she made.