A Quick Update

Hi everybody,

I'm happy to say that Abby's rash has gone away and she is doing better. The G Tube is working well so far too. We're anxious to take that big tube you see in the pics out and replace it with the button. Scroll down the blog to see a picture of Abby on her back. That little knob on her tummy is the button I'm talking about. Once this is on, life should be easier for Abby. She won't have a huge tube hanging off of her at all times and she'll be able to roll around without any hassle. The only problem is that Abby has to have this big tube she has now for like 6 weeks! it often gets caught on things and tugs on her, which really hurts as you can imagine. She'll tough it out though. She always does.

Kelly is at 34 weeks and 4 days today! Friday is 35 weeks. I can't believe it! The third trimester has proven to be very uncomfortable for her though. Her whole body aches, Eddie is kicking her all the time, she has crazy indigestion, the contractions are very strong now, her hands are swollen and in pain, and that's just the beginning! She has always been looking forward to being off bed rest, and now she is REALLY looking forward to Eddie's arrival!

Have a great week everyone.

Momma, Daddy, Abby & Eddie

Finally...Some GOOD News

Hello Camp Abby,

Finally we have some good news to report. Kelly took Abby to her Pediatrician today for a routine check up and she had some answers for Kelly regarding Abby's fever. Along with Abby's fever, she was also getting a rash all over her body. She got this after her surgery and we figured it was an allergic reaction to something. But she is still getting it and lately it's been getting worse. As it turns out, Abby has a viral infection called Rosaleo. This is actually good news because this means that her shunt most likely is not infected. Thank goodness. This rash is supposed to last about 5 days unfortunately, but hey, that's better than an infected shunt!

Below are some pics of Abby with her new G Tube. You can also see her rash.

Have a good weekend everybody.

And the story continues...

So...my "procedure" went just fine. The diagnosis of Diverticulitis was confirmed, but that was it. I don't have anything more than that. Anyway, this isn't Daddy's Blog Site, it's Abby's. So let's get back to that little rock star.

Sunday was more than we were planning on. Abby had a pretty high fever (102), so we took her to Kids Doc, which is an urgent care for little ones. The doc there immediately referred us to the ER to get blood and urine work done. He wanted to confirm there was no infection from the surgery last Monday. An infection could potentially creep up into her shunt and infect Abby's CSF (Cerebral Spinal Fluid) in her brain. This is very bad and definitely NOT what we want because this could cause permanent brain damage. 6 hours later, the results from the blood came back negative for any infection. Abby was exhausted from crying so much from all the poking and went right to bed.

Today however Abby's fever came back and she was throwing her food up all over the place. This time Kelly called Abby's neurosurgeon who told us to come up to CHOC immediately. He took a sample of her CSF which is now in the lab. This test takes a few days. We gave her some tylenol and some motrin which brought her fever down. She's sleeping now and her temperature is still down.

And so, the story continues. This time our battle is against possible infection.

You guys know what to do.

All our love and then some.

Ryan and Kelly

A Quick Update

Hi All,

Abby was able to come home yesterday. Her tube is working well but she is pretty fussy and sore. The docs say it should be about 2 weeks before she is really back to normal. I'll take some pics this weekend for this Sundays update.

Thanks for all the prayers friends. Thank you for sharing this journey with us. Seriously, I am blown away by the love this little girl has attracted. This blog site was the best idea ever. It has truly been an amazing experience to be a part of. You guys have and continue to lift our spirits during these difficult times. Even though most of you don't write anything on the comments side, I do check the site meter below and during a rough patch, the number always shoots up, which is no doubt from you all logging on to see about an update on our Abby. I love it.

Have a smashing weekend and Happy Fathers Day to all you padres out there. I for one won't be doing much. I have to get a colonoscopy done on Monday. Oh! I never mentioned this. I was diagnosed with diverticulitis a few weeks ago. Yep... that's right. Me! 30 years old, with diverticulitis. Way too many cashews and peanuts apparently and not enough fiber. It sucked. I was in the hospital with my first I.V. ever. And the irony was that Grandma Cindy and Grandpa Cliff (Kelly's parents) had to come over because daddy's intestines were on the fritz and mommy had to stay off her feet from her pregnancy! Hilarious. Anywho, for those of you that are familiar with a colonoscopy, you know about the day before the procedure. This just happens to be Fathers Day. Nice...On the bright side, I have couple of Golf Digest magazines that I will be able to catch up on.

We love you all!

The Surgery went well..

Hi all,
This is being typed on my blackberry so please excuse any mis types, spelling errors etc...

Anyway, it went well. The doc closed up the old G Tube hole and was able to place another one. Now its all about the recovery. We will be here at least a couple of days to let Abby's wounds heal and to make sure the G Tube works properly.
She has a terrible sore throat from the breathing tube but we can't give ANY water or anything until tomorrow. She is also having an allergic reaction to one of the antibiotics we gave her. they aren't sure which one because she was given three at the same time but they will figure it out.

More to come later. For now let's pray for Abby and Mommy and Eddie.


We love you guys.

Here we go....again...another surgery!

On Thursday Abby had an appointment with her GI Doc. We were happy about this because Abby's G Tube has been acting up again. Before I get into that though, let me give everyone a visual of the G Tube. Below is an older picture of Abby taken at the end of October last year. This is the G Tube.



When we need to use it, we attach a longer tube to that little thing and pour the milk in through a giant syringe, like a funnel. The best picture I could find with the longer tube attached is from after her last brain surgery when she was in recovery. She's on her side, but you can see the tube attached laying there. We haven't attached the over sized syringe yet, but you get the idea...



I haven't really commented on this G Tube issue before and I'm not sure why, because it has been a nightmare. You can see just how close this thing is to her skin and you can imagine how irritated her skin gets as it rubs against her. It also leaks a lot which is a big mess. We put these pieces of gauze between the G Tube and her skin but that only lasts so long. Keep in mind that what's leaking out is partially digested, very acidic milk. This stuff makes Abby's skin on her tummy around the hole get extremely irritated and sensitive.




So.... back to the GI appointment this past Thursday. Like I said, Abby had been really upset with her G Tube lately. The worst we've seen. We couldn't even get close to it without her going crazy. Sure enough, on Thursday, our concerns were confirmed. Without getting technical let's just say that her G Tube hole is really messed up. So much so, the docs said that they haven't seen anything like this in really long time. Abby needs to get into surgery so they can close it up ASAP. And ASAP is today, Monday at noon. We're told this will require at least one nights stay in the hospital but Abby was never one for a speedy recovery. She does recover each time, but slowly.
Here is the scary part in all this. The docs aren't sure if they will be able to put another G Tube in. There is only so much room they have to work with when poking these holes into her tummy and it's possible that Abby's current hole is so enlarged and messed up that there won't be room to make another one. This is bad because Abby needs that G Tube. She cannot eat yet. In fact, we tried to go without using it this weekend and it was horrible. She only drank about 4 oz's of milk the entire day, she was cranky, tired and starving. Remember, Abby does not associate being hungry with eating. Since birth, each time Abby was hungry, she didn't quench that hunger by actually eating food herself, but rather was fed through the G tube. Since she hasn't learned to feed herself to get rid of that hunger pain, she doesn't put those two together. She doesn't think to herself, "hey I'm hungry, I need to eat something." In fact, she wants nothing to do with eating when she gets too hungry. We tried to give her food but she just turned her head.

The doctor said he just isn't sure what he'll be able to do with everything until he actually gets in there. We're praying like crazy that he will find a way to put another G Tube in Abby. From what we've seen this weekend, it's just too soon for Abby to be without it. But in the end, we know and have faith that Heavenly Father is in control of all this and will take care of little Abby.

And so, it's that time again friends. Keep the prayers coming these next few days. Prayers that the surgery will go well, that the docs will be able to put in another G Tube, and that Abby's recovery will be quick. We all know that Kelly is going to do what Kelly does during this whole thing, which is stay by her baby girls side this entire time no matter what. So please pray for her as well. Pray that her contractions stay calm and that this whole thing doesn't put a strain on her and Eddie.

Love,

Abby and Eddie's Parents

PS - Check out mommy and Eddie!

Hi Dee Hoe Neighbors!

Ooops, is it Tuesday night already? Sorry about that! It's like this...I had to see a guy about this thing and then take a drive down to this place to drop something off and I got a flat tire and had to hitch hike back home in the back of a truck with a stinky dog and...uh...yeah. That's what happened. Honest...

So anywho, on to the Abby Girl. She is doing well but there is definitely room for improvement. She is STILL only 14 lbs, 8 oz. We were told that we really need to push her on her feeding. The catch here is that if we increase her feeding too much she'll toss her cookies. And when Abby throws up, it's like the barf o rama from the movie Stand By Me. No joke. We're talking some serious projectile vomiting here folks. This is why I'm always hesitant to push her. My take has always been, why force 1 more ounce of milk in her and risk losing the entire meal? But I also see her therapists point. She MUST have a bigger stomach if she is ever going to get more food. So, we're going to increase her feeding but at the same time be very careful about how fast we feed her and all that.
Another issue is her left arm. This is an area that is actually doing pretty good. She is really using it a lot more these days. She can still do better though and we're going to start putting her left arm in a little brace every day. The brace will force her hand to remain in the correct position as opposed to always being clinched in a fist all day. I'll keep you all posted on this as well as her feeding.
Eddie and mommy are doing well. Kelly just had a doctor's appointment and things are holding steady. She is contracting every so often but since she's been so good with her bed rest and has stayed off her feet, the contractions haven't increased too much yet. We're at 31 weeks and 4 days right now! We need to get to 36 weeks though so we STILL have another 4 weeks! Kelly is going CRAZY!!! But with all the help we're getting from our family, our meals from church and all the prayers from you guys, we're getting by just fine.
And finally, just when you thought she couldn't get any cuter, think again. I can't stand it. Look at this little nugget.