I'm Recovering. I mean....V's Recovering quite well! :)

Shyly peeking in to avoid any flying tomatoes...

I am SO sorry that I haven't updated since V's surgery. Jer and I were talking last night about how absolutely drained we are. We feel like we are doing what's absolutely necessary and that is ALL. My house is a wreck, I need a shower, We need groceries, A nap would be nice...etc. Yesterday, Madi and Selah went to take a shower and the water wouldn't cool down, well then tried to just turn it off and of course...didn't turn off. I had to turn off the main water in order to stop it and we had a heat advisory yesterday. Lovely.

So, other than racing to the ER on Monday night fearing that V had kicked her G-tube out of her stomach, things WITH her G-tube have been good and steady!

....that sentence just shouldn't be right.

but it's very right.

(more on that later)

So, we arrived at the U on Tuesday around 4:30. I went up to the clinic and was sent straight to 3rd floor instead of the PICU. I believe this was the last Peds floor that we hadn't been on yet.

3rd floor is Oncology and GI. So it made sense. The nurses however, were not used to heart babies and just about freaked when V turned blue while they tried to find a good vein for her IV. "Has she ever turned blue while crying?"

Shhh! Sarcasm!! Quiet!



...I need a 12 step program on sarcasm! Ask Jill, Steph, Erin, Karla, and well, (d)arcy knowz how it goez. ;) You know who I'm talking to all my girls!

Everyone was really nice though. She was monitored over night and given fluids. It was really strange being in there while she was wide awake and so alert. She had to be hooked up to an IV so it was hard to access her...I'm so used to her sleeping so much at the hospital, but she has grown! It was definitely a new challenge. Her night went well, and we stopped her feeds at midnight. Anesthesia came in to take her around 9-9:30. She was SO funny. She was just smiling at them and looking around, not really worried about a thing. She was clueless as to what lied ahead.

I believe that's how God wants us to be. Not oblivious, still aware, but not worrying about tomorrow. Am I right?


Verse Reference Please! "Do not be anxious for tomorrow...etc"


I walked V down to surgery as she stole each and every heart that walked by. She kept her one finger in her mouth like she was bored but content. Small procedures...are still hard to walk away from your baby girl as she looks at you like, "Where am I going Mommy?"




I talked with one of the surgeons and Anesthesia and the Anesthetist was so very nice. His daughter had heart surgery at 5 months old and he knew how I felt about surgery. He said that no surgery is small surgery with these kids. With any kids! Being intubated and put under is always a risk, but such a HUGE risk with V.

We waited till about 1pm and then got news that V was in recovery. I got up there and sat with her for quite a while. She had to stay in the OR for longer than they planned because she wasn't waking like they wanted.



So we got her to move her arms a bit in recovery and then finally she woke up to other cries in the recovery room. She was pretty blank, but she was definitely awake.






Her sats looked great as well as her heart rate so she was able to go back to her room. Things were a little rough that night, as she was starting to feel the pain and become more aware of her environment. I spent a lot of time trying to calm her and making her surroundings calm so she could fall asleep. We didn't even TRY the G-tube till the next day. They usually wait just 6 hours, but they were extra careful with her.

V didn't get your normal Peg G-tube. She got a different kind because it had to be put in a different way. Remember that V's stomach is on the wrong side of her body and also that she had mal-rotation surgery last December. They didn't want to do the normal procedure and go down through her nose with a scope and puncture out, because they weren't sure where all of her intestines were lying. So they actually went in through her scar from her first surgery (mal-rotation) and put a scope in there and punctured out a few inches away.




It's not pretty, that's for sure. A lot different than what we had expected. The nice thing, though, is that she will get her button in just 6 weeks. The button comes after the G-tube and is much easier to get around with. It will just sit on her belly and we will connect the tube for feedings and meds. I'm looking forward to that, as this one has me constantly worried. (Look a few paragraphs up for my contradiction to this sentence.)

We were told that we would be leaving the day after the surgery and then told that they wanted to keep her another night for observation and just to make sure her feeds went fine. By 8pm we got ourselves out of there. Since we didn't know, we kept our hotel room, though and spent the night there.

It is so scary when she gets put under each time. Will she come back to her full self? Will she deal with any damage? Of course not! Veiyah was smiling the next morning. She is not only back to herself, but already picking up new things. I wonder if she dreamed about them and then just knew how to put them to action. ;)

So it's all new again. Here we are home, adjusting again. Like I said earlier, we are so drained. I think that with everything that we went through this last year, every little thing takes the biggest toll on us. Last night Jer and I laid down with Veiyah at 8pm. The girls found their way in and we all just rested for an hour. Late, but too early, but so needed.

Yes, Monday afternoon we ALREADY had our first g-tube scare. One of the home nurses came and we looked at the site. She was showing some drainage so we decided to take apart the tape and re-dress it. Veiyah didn't like this one bit and kicked and screamed. Kicked so much that the stitches pulled quite a bit and blood pooled around the tube. Tammy, our nurse, called the University and they told us to get her to the ER so they could check it out, make sure the hardware inside had not collapsed, and do an x-ray.

So Jer got home and we packed V up and had the girls stay with my sister a few more hours since they were already hanging out with her. Whenever we are on our way down there, we drive in shock. We just do what we know to do. I don't know how we make it there sometimes honestly. Maybe this sounds trivial to some, but I can honestly say that each and everything with little Miss V, is not so little or trivial. She is our Drama.



Selah comes in a close 2nd.



We got right into the ER cuz...well you know, we DO have people. V was in the best mood! What's up with that? Girl you just had a traumatic situation. Now she's being all animated and again...stealing hearts. 's Ok with me, she needs all the HEART she can get. :)

Like always, she got a room full of nurses and Dr's, interested in her story. My favorite question besides "Tell us about V" is, "What is her diagnosis?". How do you sum up V's diagnosis to one word...two, five, ...ten?

They injected some dye into V's tube to light up her stomach for the Xray. Everything seemed intact, so we were able to go home right away. She IS a kicker tho, so we have to be extra careful with her little feet. Like I said, looking forward to the button!!

Thanks so much for all of your prayers. I'm excited to show you this next picture. This family emailed us with these pictures. I'll just put the email with it so you can see why they sent it. This is the 3rd time we've received a picture of something in the shape of a V. I'm loving these and would love to see more creative ways to see V being prayed for!

Thank you so much B Family! It's Knees like you that we count on and know are still kneeling with us. And standing! :)

"Hi Kargs!
We've kept up with you from the beginning and all that you've been through. You remain in our prayers.

1. So..the other day we had this amazing storm roll through. We live in Lyons, Colorado and we usually have amazingly clear weather. But the other night this storm came and my son, Caleb said, "Hey Mom, those clouds are making a V!"
2. My daughter, Caroline said, hey we should send it to Veiyah's Mommy. So here it is! And please know, that after it was done (which it brought thunder and lightening and hail), we were blessed with a beautiful double rainbow and lots of sunshine.
3. Sounds like a little sign :)"





Here is precious Aslyn wearing her V-Tee! Thanks for your prayers Aslyn and Family!





How awesome were those CLOUDS! I call that a God thing. Wanna see V's latest trick? She found both feet, and while I couldn't do this for the life of me, she looks at both of them in complete awe!



I guess if I could do that with my legs, I'd be in complete awe too....am I right pops? Yep, you're right. Am I right Pops? Yep you're right.

(whoever gets that besides my immediate family, pat yourselves on the back.)

Okay, I'm deliriouis as you can all see/read. Things are looking up around here, I just know it. The heat is RIDICULOUS but we will survive it!

Pray Requests? That V heals quickly from this last surgery and that she starts to suck from the bottle more. She kinda quit after the surgery. We hadn't even given her anything in the tube, tried bottle first and wanted nothing to do with it. Our goal was to feed her by mouth only and then whatever she didn't take, to bolus the rest into her tube. We know what she is capable of and so we are asking for prayer for her to overcome all these little obstacles so she can amaze us all once again. :) Love to be amazed here...how 'bout you?

That's what I get for waiting so long....or what you get....a loooong update. Thanks for reading. Thanks for praying! Thanks for being so awesome~

xoxo

ani