Update

Positive, encouraging...K-Looove! My church peeps know what that's all about. The K obviously stands for Kylie. Duh!

So Jody and I finally got to sleep last night a little before midnight. The crew that came in to check her vitals at four woke us both up. Four hours of sleep seemed like forty. Fortunately or unfortunately, we were both sleeping pretty soundly, so waking up from a deep slumber to our current place was difficult. I couldn't stop shaking until I started with this update to you all. It's so hard not to dwell on all the what-ifs. By the way, this is me, Matt, writing. Jody is doing an amazing job of lifting me up. She is awesome.

We saw our neurologist yesterday morning. He had some relatively encouraging things to say.

• He thinks that based on her development - which is right on track - that she has the better of the two types of this. Without getting too detailed, we're hoping for the variety of Infantile Spasms that is not a symptom of an underlying condition.
• We should know for sure on Monday when we get an MRI (scheduled for 7am). Please pray that everything comes back clean on Kylie's little head. That would mean the Stump family would probably get to go home later Monday or Tuesday.
• Of course, we will be giving her the injection at home...so scary...for the next week or so until we can get another EEG to see if the meds are working. If the meds are working is probably the most important of all.
• The medicine she is on is actually a hormone that is naturally occuring throughout the body. She's just getting it in massive quantities. One of the downsides to the ACTH is that it compromises her immune system. So, what does that mean? We'll be locked up in the house for the next couple of weeks (once we get home). No visits from sick people or kids under 15, or going out in public places (church, grocery store, etc). Not kidding.

So, a few things to pray for:

1. A "clean" MRI on Monday

2. A reduction in the number of her episodes over the next few days which would mean the meds are doing what we want them to be doing...getting rid of this affliction. It sounds like this would also lead to a more encouraging EEG.

3. Lastly, please ask Him to shower Jody and I in his Grace, Love and Mercy. I suppose it is not for us to ask why this happened, but to accept it as His will and continue looking for the ways that He is here with us every step of the way, helping us through this trying time.

It might be kind of corny, but I keep thinking about the famous inspirational quote (Jody has it on a key chain for crying out loud)...I'm going to butcher it, but it goes something like this: a troubled sould sees only one set of footprints in the sand and asks God, "Where are you, why have you left?". God responds with "Dude, I've been here the whole time. Those footprints, those are mine as I carried you. You didn't see me at first because you were lost in your suffering." We can use all the reminding that He won't leave us to battle through this alone.

Since we're taking this one moment at a time...one day at a time is too much to handle...we'll focus on loving on her all day today, Sunday. I know He rested on Sunday, but I hope the sheer volume of prayers regarding little miss Kylie will move Him to act in a swift and efficient manner and maybe work a little OT.

Here's a fun little snippet. Jody makes up songs to sing to Kylie - maybe to help her calm down when she's fussy or maybe just to sing. Either way, Kylie loves hearing Mom's singing. The last line to the original song Jody concocted is "Kylie Mae Stump gets lots and lots of love". We had no idea how much that really is true.

After getting roughly twenty minutes of sleep Friday night, the truck loads of visitors we saw throughout the day on Saturday did an amazing job of lifting both of us and derailing us from those dark, dark thoughts that continuously creep into your head at times like this. A huge thank you to everyone that has lifted up prayer, have come up to see us, called or emailed to offer their support . We cannot begin to express how much it means.

Well...

(This is Matt) We were admitted to Children's Mercy earlier this afternoon.

We busted tail down to neurology and got an EEG done. The doc came in and pretty much immediately knew - or at least I could tell he did. The nurse gave me some hints and my heart immediately dropped completely out of my chest.

We went back up to the room and that same doc came in and punched us both in the gut, figuratively, of course.

Infantile Spasms. Sounds pretty benign, right? Not so much...

Today has definitely been life changing and makes us appreciate every moment even more than the last.

The bright side: 6 weeks of ACTH, a relatively dangerous drug that has show some proficiency at fighting this. Also, a three-week supply of ACTH is about $22,000.

Yeah, that's what I said. No misplaced decimals there.

Luckily there was a "financial aid" person in the neurology department. It is her job to procure this drug at a reasonable cost. Sounds kind of like a "don't ask, don't tell" policy".

We should know within a couple weeks if the drug is working. They were all shocked at how quickly the pieces fell into place for us to get in here. Her first bout of this stuff was on Tuesday. Here it is just four days later and we've got our diagnosis (although it isn't pretty). Also, the hospital just happened to have one "vial" of this drug floating around. One vial is roughly enough for a five-month old for a couple of days (over a weekend).

Thank GOD for that stuff. Thank Him and only Him (well, the docs might deserve a bit of cred, but we all know where it came from). I don't really understand any of this, but I know He does. I know that we're in good hands.

Now, for the downside...we'll just have to hope that He doesn't have it in the plans for there to be a downside. A few minutes researching this nasty condition online with break your heart. With that said, there is no downside for now.

Please pray for Kylie...

We are eating more foods

Well our little girl is growing so fast...I just can't believe that I am already feeding her cereal, and have recently progressed to baby food. Kylie loves her rice cereal and has had moments of talking while we feed it to her. We think it is her way of telling us that she likes it. If we are too slow in giving her another spoonful, she is quick to let us know.

Here are a couple of pictures we snapped during her first time eating peas and then carrots. It is apparent that she isn't too found of her peas, since they end up on her face and not so much in her mouth...either that or she is trying to give some back and share them with me.

Over 4 months old now!

We just can not get over how big Kylie has gotten! Each day we would say "my goodness, you have gotten so big!" I am kind of saddened to see that she is not our little baby, but getting to be so big and developing quicker than I would like. I keep telling her to slow down, so I can enjoy her more, but so far it hasn't happened yet.

Last Saturday we had just left to run some errands and we forgot her pacifier, so I stuck my pinky in her mouth and felt something poke me. Then the very next day (3/15) the same thing happened, and I could not believe my eyes when I saw not 1 but 2 itty bitty teeth poking through on the bottom of her mouth! SOooooo that totally explains why she was extra fussy the week before and refusing to nurse off of me. Who knew?...defintely not us. I told Matt I was a bit sad that she is getting teeth so early, because I want to see her gummy smile a bit longer...he just shook his head.

She just had her 4 month shots this past Tuesday, and her doctor said she is ahead of the game with getting those teeth so early...we like to call her an over achiever ;) Unfortunately she did not fair so well at this visit, as she was extra upset about her shots and was pretty fussy that night..poor thing.

Everything is seeming so routine for us, and we don't freak out as much as we used to. Every 4-6 weeks we have to adjust as she has new demands and we try to figure her out and constantly adapt...those times are difficult for me as I feel like we are starting from scratch. The good thing is we can say we made it through the last few adjustments, so we know we can handle it, besides her smiles make it all worthwhile ;)

Home Sweet Home

It's official, we're home. We left the hospital right about 12:30 this afternoon and as soon as we got home we took a pretty solid nap. I think Kylie slept from the time we left up until about 3:30!

It's been pretty fun since being home. I'm fairly certain she can tell she's home because she just finished up an hour long smile-fest. Anything we did, she'd bust out a beautiful smile.

Thanks to everyone for the thoughts and prayers.

Good times.

Here is a video clip we took of Kylie in the hospital as she was beginning to feel better.

Well, That Was Exciting

I'm going to start this story a few days ago - Sunday, February 1st, to be exact. The little lady started running a bit of a fever to go along with the green stuff.

On Monday, I called her doctor and by the time they got back with me the office was closed, so we were directed to Children's Mercy South Urgent care. After a two plus hour wait we were called back so that the nurses could get some vitals. This particular nurse was quite put off that Kylie was crying - I would be too if you woke me up, stripped me down and took my temperature in a rather invasive manner. Anyhow, this nurse asked a doctor if she could give Kylie some Tylenol because "I've got a baby down here that won't stop crying". Whatevs. A few minutes later we saw the doctor. Seemed like a nice enough guy, but was lacking any conviction on why he wanted to run tests on her blood (a vein stick, not a heel stick) and urine (required a cath). So, after he left, Jody and I used our parental veto and walked out.

Fast forward to Wednesday. I was referred to Johnson County Pediatrics by a co-worker. We couldn't get in to see the doctor I was looking for - Bryan Nelson - but we got in to see his wife, who is a nurse practitioner. Well, they are awesome. They had the "fire". They pretty much asked to do the same things that were suggested Monday at CMSouth, but they had conviction in their reasoning. That's all we could ask for.

They were pretty concerned about her color and that she was pretty lethargic. So, they did a heel stick to check her white blood cell count - this is to see if she's fighting an infection, high white blood cell count means infection. They took urine via a cath to check on a few other things. We also did nasal swabs for RSV and flu. The nasal stuff came back negative, the urine didn't provide a positive or negative, but the blood came back with a very high white blood cell count (i.e. infection). Another doctor, Dr. Winburn, came by to provide a consult and suggested she might have to go to "Mercy". Wow!

By ambulance! Double wow!

And they would probably do a spinal tap! Triple wow!

I'm sure everyone would be, but Jody and I were in complete shock. Dr. Winburn and Nurse Nelson didn't seem terribly concerned, but obviously concerned enough to ship us all off to the downtown location of Mercy via ambulance. Everyone at JoCo Peds was so apologetic that we had to meet them in such a rough way.

Here are a couple pictures that I snapped with my phone as we were leaving the doctor's office...



I followed and Jody rode in the front seat of the ambulance. Apparently she wasn't allowed in the back. So, the entire way there Jody got to listen to a screaming Kylie while she couldn't do anything about it. We pulled up to the hospital just after six in the evening on Wednesday, 2/4.

We were immediately admitted and given a room. Within an hour or two they did a spinal tap and took some more blood. Luckily, we weren't allowed in the room to hear / see the tap. At some point, either in the ambulance or when they did the tap, they gave her an IV connection so they could give her fluids and a broad spectrum antibiotic that way. Fun fun. They also cultured the urine to see if something was growing in there.

We got word from our med student on Thursday morning that her spinal fluid was clear, which means the infection wasn't present there. That was very good news! I'm not sure when we go the word, but the official diagnosis is a urinary tract infection. From the sounds of things, it was caused by the diarrhea she's been experiencing for about a month now. The cool thing is that when they did the culture, they also ran it against a bunch of antibiotics to see what would eradicate this little pest in the most efficient manner.

Just before that med student came in, Jody saw a sheet of paper with a diagnosis that said Kylie was potentially septic. If that was the case, that means an infection has spread to the blood stream. Very bad. Luckily though, her blood was also free of the infection.

As the hours, and days, ticked by it was very apparent that whatever the good folks at Children's Mercy were giving her was working. Her color started getting better and she gradually got close to being her same old self. She never stopped fussing though!

All three of us are runing pretty ragged. Sleeping is tough enough with a baby, but in a hospital, you mind as well forget about it. She slept from about 1:00am to 5:00am, although very fitfully, on Wednesday night/Thursday morning. Then, Thursday night she finally fell asleep on me around 11:00pm and woke up screaming at about 12:30am. Luckily, our nurse was nice enough to disconect the IV so that I could take her for a walk through the halls. My apologies to the other patients in 5 Sutherland! After trying everything, we finally got her back to sleep about 2:00am and she got up about 6:30am when a nurse came in to give her some more antibiotics.

I'm writing this at about 10:00am on Friday and it sounds like we've got everything figured out. The team just made their rounds and decided on a good antibiotic.

Sounds like we're going home today!

Here are a couple more pictures I snapped over the past couple of days...

Seeing Green

So, she's sick. Or as best we can tell she is.

Kylie's been having some strange colored stuff coming out of the bottom end of late, so after asking around, Jody thought it was best to call the doctor. They told her that if the strange colors persist, then to call back and get little Kylie in to see the doc. Well, it persisted.

So, we bundled everyone up yesterday (Thu) and trekked out to the doctor. Nothing really of note came from the visit, other than a "sample" was provided. The doctor's thoughts were that she was being pestered by the stomach flu or rotavirus (the liquid vaccine she got from the previous, shots, visit to that office). Neither of which are "treatable" but both will last a couple of weeks.

The good news is that Kylie doesn't seem to be too bothered by the whole ordeal. She's eating and sleeping like normal and might even be a little less fussy in the evenings. However, the stuff in diapers isn't pretty. Potent, to say the least. The first one of the day (that's been on her all night) is rough. I changed one of those for the first time since she's been sick and I barely made it through.

Again, didn't seem to bother the doc too much so as long as Kylie stays hydrated, it sounds like its not too much to worry about.

Here's a new cell phone pic that I snapped the other night. Still cute...

Shots!

So, Kylie's two month doctor's appointment was yesterday!

In addition to the normal height / weight check and examination, that appointment yielded three shots and a little vial of some sort of liquid vaccine.

She did pretty well while in the waiting room, but when we had to strip her down to be weighed she began to get pretty upset. Now, she's busted out some pretty good screams at home, but nothing like this. Ear peircing to say the least. She continued wailing throughout the height and weight check and then while the doctor examined her. Once that was over we were able to calm her down just a bit - down to a whimper. But Mom and I knew what was coming...

Before we get to that fun, here's the latest stats:

• 11 lbs even - Just over the 50th percentile in weight


• 23" - 75th percentile in height

Nurse Pokes-a-lot came in and gave Kylie the liquid, which even though it is apparently very sweet, she was not a fan of. That was followed up by Jody and I each holding an arm and two nurses simutaneously poking her in each thigh. Kylie immediately went stiff as a board, turned beet red and her little mouth flew open, but nothing came out. Then there was the pause while left leg nurse reloaded and grabbed syringe number three. Once that one hit, it was on. She was not a happy camper. Honestly though, the cries were a few decibels lower than those from just a few minutes prior. By the time we left - which was about 10 minutes later - she had calmed most of the way down.

Man, that was rough. I can't handle anybody hurting her.

She did pretty yesterday evening and slept all night. What a little trooper!

And we get to do it all over in two months. And then again two months after that...stupendous!!

Below is a photo Jody snapped with her phone after we calmed Kylie down following her shots...poor thing.

What's New With Kylie - 1/1/09

So, it's officially 2009! We're set to begin the new year with an eight week old baby. Here's what's new:

• The feedings are going quite a bit better, which is a huge relief. They're not perfect - still takes about an hour - but considerably better than the two to three hours it was taking in the beginning.


• She's eating approximately every three hours during the day. In the evenings that can move to every two to two-and-a-half hours because...


• At her one-month doctor appointment we were told she's probably got colic. In the evenings she can get a little riled up and become inconsolable. That's rough.


• She's been sleeping through the night for the past month or so. Typically, she'll go down around 930 and get up around 630. Not bad. She'll occasionally wake up in the middle of the night hungry, but not too often.


• She's been smiling for about a month too! We're fairly certain that her first non-gas related smile was on her first month birthday (12/4). Here's a pic that Jody snapped with her phone...

She's definitely a cutie. Here's a new pic that we think is just ridiculously adorable. I know it's on the little slideshow, but you can't really see it too many times:

Happy New Year!

So one of my New Year's resolutions is to work on, and update, the blog more. You'll notice the new look and the fancy slide show on the right side. I hope you enjoy and, again, I'll work on updating more in the year to come! Thanks for reading...Matt