Eight.

Eighth time's a charm, that's how the saying goes, right? Third time, you say? We missed it!

Callista will have her eighth surgery on the 17th. It will be another decompression surgery. She had one at two months old and it is the most serious surgery she's had other than the fetal surgery. Needless to say I am one nervous mother. Last time it took about six hours, but they did a bronchoscopy with it. We don't know how long this one will take. I did my best to find pictures that (sort of) explain what is going on with Callie's brain.

Callista's syrinx is much longer than in this picture, it travels pretty far down her spine. A syrinx is when there is spinal fluid in the length of the spine in a space it isn't supposed to be. The larger blue spot in this picture is the syrinx and the skinny blue line is what it's supposed to look like. On her MRI, there's a big black spot that points to a blockage, possibly caused by scar tissue from her brain being so compressed when she was born and the first decompression surgery.

This picture is an in depth look at what a decompression surgery actually does. Hers won't necessarily be the "textbook" surgery like this shows since it's the second time she's been through it. We are so lucky in the fact that her neurosurgeon rescheduled another surgery so that he could do hers and still be around a few weeks after before he moves to another hospital out of state. I am so relieved. This procedure is a huge undertaking and I wouldn't trust anyone else to do it as well as he will.

His plans are rather loose since he is unsure exactly what he will find once he opens her up. The tentative plan is to use the same incision, perhaps lengthen it to adjust for growth. He will open the dura and look at the scar tissue to see how much he can remove. Any bone regrowth from the last surgery will be removed and depending on how compressed things look, he may remove bone to widen the opening. He does not think he will need to remove more bone but it is still on the table as a possibility. Then a stent will be inserted to bridge the gap between her ventricle fluid and that "black spot" so fluid can flow freely through the spinal cord.

In writing, it seems straight forward, but there are many unknowns until he can see it. There is also a slim chance that this repair could also help her vomiting issues but we can't be certain. We are wishfully thinking it helps though!

Please pray for my sweet little girl and our family that we can get through this smoothly and have a quick recovery. It's such a major surgery that we hoped we'd never have to go through again.

Gastric Content

Last week's entry was so eloquent. I apologize in advance for the chopiness of this one LOL.

Callista had a gastric emptying study done on Monday. That was an experience I hope we do not have to repeat. Our poor baby has had such an increase in vomiting with every feed over the last few months. We are almost on continuous feeds through her tube just to get her to keep enough down to stay hydrated. For the test, they said they had to dump in one feed for her within 2-3 minutes. I informed them she would throw up. They said tough luck, and she threw up.Callie had to lay there for an hour as they took scans to trace where her food went and how fast. She cried. And cried. And cried. But there was very little breath holding so I am thankful for that!

Fast forward to yesterday when I got the call for the results. She has.... *dramatic pause*..... severe reflux. Uh, yeah? She has since she was born. What's worse? They couldn't tell me any results from the actual emptying part because (are you ready for this?) "The test was inconclusive because she vomited." Shocking, isn't it? We wasted four hours of our time doing a test we apparently didn't need and put poor baby bug through torture. I think it's time we moved on to another GI specialist, as this one is officially out of chances from this mommy.

Four days in to this summer's layoff and enjoying every minute of it, well, expect for Monday's trip and test! I'm looking forward to making this little munchkin work her butt off and make some progress! Lately, she's been doing much better with her head and trying to sit up. We got her wingbo swing in the mail yesterday so we will be practicing our crawling stance as well. We're also still preparing for the benefit and counting down the days to a yummy lunch and lots of great prizes. Last but not least, we're also keeping busy with T shirt orders. If you're interested in ordering, come visit our facebook page or message me :)

Have a great day, back to folding never ending laundry for this lady!

Change and Clarity

Change (Verb) Make or become different.

There's so much to say about one little word that can cause so much turmoil or so much celebration. We pray for change, dread change, make things change, and deal with change that is forced upon us. Sometimes we have control over what changes and other times we don't. Change is sometimes a blessing that is immediately visible to us, while other instances of change are blessings in disguise. Change is all these things, but it's also just one thing. Change is what you make of it. No one else but you can decide how you handle it and what you decide the value of it is. What brings on all this insight? Why, changes of course! Not to worry, Princess Callista is still being her sweet little self, but change is occurring in our lives. Two big things. Neither of which I am thrilled about but it's not a choice and we will make the most of it. Callista's neurosurgeon called Monday and informed us he will be moving to another hospital at the beginning of August. He will be there to read her full MRI in July and help in planning what to do about her syrinx, but if she needs surgery, he will not be the one to do it. The thought of a stranger cutting into my daughter makes me ill. But these guys are professionals, they do the same thing our neurosurgeon does, and they work for one of the best Children's Hospitals in the country! And I've heard such great things about both doctors we have to choose from so we can't go wrong in dealing with this change. One very helpful SB mother has me swayed as she shared stories of how their neurosurgeon cares for her son. And a positive is we still get to keep our favorite nurse practitioner. We realized doctors come and go, but we just didn't want it to come so soon. We get comfortable, we feel certain, and we build trust only to have to start all over. But it is what it is and we will keep moving forward. The other change is a bit more personal, and the details haven't quite been worked out. My job situation is changing and it's time for us to decide what is best for our family. It's one of those changes I talked about, that are forced upon you and you must make it whatever you need it to be. I needed it to be a sign, and it truly was a big one, a wake up call to say the least. Things will get hard for us financially, but my husband is ready to step up to the plate while I take a step back and do some soul searching. I can't foresee what will happen in the time between now and Fall, but again, i want to make of it whatever I can. One thing I've learned in the last two years is that even though society gives the impression that you must put others first, if you neglect yourself and your needs you're not doing anyone any favors. Here's where the clarity part comes in. Clarity (Noun) Clearness of thought or style; lucidity: Let's face it, we all need some clarity in our lives! Wouldn't it be nice if every time you were faced with an option some omnipotent voice would clearly state "Choose the bacon burger for lunch today". Granted, our situation is a little more serious than choosing between a chicken club and a burger, but I have to admit the voice choosing for me would be quite helpful. There is the saying that everything is not black and white, but the gray area is so hazy. When we get into the gray area, we lose our clarity and gain self doubt. I wish I was more spontaneous, willing to jump without looking or thinking (sometimes!), but I am an over thinker. I will think about something for days, weeks, even when it's over and nothing can be done or changed. But in this instance, I am letting it all go and leaving it up to prayer for clarity and I will be guided to the one and only choice that is right for us. I will not have doubts about the choice made. I will not have regrets one way or the other. I will be the spontaneous jumper! I just want to feel at peace with myself and my environment and unless I let go, I'll never achieve my goal. Here goes nothing, or everything depending on how you look at it :) I also want to give a quick Thank You to all of the wonderful people assisting us with our benefit coming up July 28th. Every day, I am in awe and just plain baffled by the outpouring of love and support. I am looking forward to seeing many of you there. We love and adore you!

How Do You Do It?

"I don't know how you do it" is a statement I, along with other special needs moms hear pretty often. Some find it offensive and I can see why. It implies we put up with things that we shouldn't have to and that is partially true. We shouldn't have to spend nights in the hospital or watch other kids grow and surpass our own. But I am not offended because those that utter the phrase have positive intent. What I choose to glean from the statement is this:

• I am an amazing mother who goes above and beyond for my child because I have to, and because I want to
• I go through more than most mothers but still come out smiling even if life sucks at the moment
• I show up to work and continue to be productive after sleeping on a hospital couch or better yet, NOT sleeping at all when a normal person drags in a bad mood
• I drop everything to do what's best for my kid and others notice and appreciate this
• I have more stamina now to keep chugging along than I had when I was 20, younger, more metabolism, etc. 

I recently told someone I get by on snickers bars and caffeine. That's "how I do it". We all do what it takes to make sure our children get what they need. Now "How do you do it" differs completely from "I could never do what you do". Now THAT is offensive. Because I think anyone could do it. You do what you have to. A tiny human being who needs more than a normal tiny human being has a way of wrapping you around their adorable little fingers and you're stuck for life. Walk across a floor of tacs? Jump through a hoop of fire? Go on two hours of sleep in three days? Why yes, dear, if that's what you need from me to be happy and as healthy as you can be.

The official diagnosis was a UTI, the same one as the last, it never fully went away with her first doses of antibiotic. Apparently the UTI caused vomiting, then the treatment caused nausea, which caused more vomiting.Wednesday, she had another MRI, which showed her ventricles increased. This implied a shunt malfunction. Her neurosurgeon did a shunt tap which showed there was no way it could be pressure in her head. Then as they were resetting her shunt setting, it was discovered that the magnet tool they use to set the shunt was not working! So for a week, her shunt was set at 1, instead of 0.5. It explained the increase in her ventricles and quickly resolved itself once the setting was corrected.

As far as us, we are home for now, and how we do it has gotten easier than the last two weeks! We had the pleasure of sleeping in our own bed last night and hanging out in our lazy day clothes today. Miss Callista was so happy to be home and to sit in her pink chair.  She hasn't had a single breath holding spell since she left the hospital which contributes to my theory that she simply hates it there. We all slept in today, making up for sleepless nights away from home. They gave us a new bag to hang with her feeding to help her get the air out of her tummy. Hopefully we are in for a much more pleasant eating experience. Right now, she is still on slow, continuous feeds and gradually we will work our way back into a normal schedule. She has a nutrition clinic appointment next week to see about what we can do to meet her needs but avoid milk and soy. Other than that, we're just looking forward to our three whole days together.

Also, welcome to all our new readers from Callista's facebook page. We are so happy to have you on our team!

So Which One are We Choosing??

By "which one?" I mean which diagnosis! Callista has been in the hospital since Monday for vomiting. We took her to the ER on Friday and they did a shunt series and MRI, then sent us home. By Monday, she couldn't keep anything down and it was dehydrating her. In the ER, they insisted again on the shunt being the culprit. It was not. She was admitted and more testing was done throughout the week. For four days straight, if she was awake she was screaming in pain and having breath holding spells one right after another. I think we got maybe 9 hours of sleep total in those four days. She has been through several tests and procedures. Now we are playing the game where we try to see how many diagnosis we can go through.

1. Shunt-- Nope says Neuro
2. Kidney infection-- No way says Renal Scan and X-Rays
3. Shunt (again, seriously?)-- Once again, a big N-O from Neuro
4. UTI-- Yes actually, but it's still the same one from last time which apparently did not get cleared up.
5. G-tube ulcer- Scope says no, but there is a lot of irritation in her esophagus and stomach lining.

We are still admitted, I can't wait to see how many more we can add to our list and how many more times "shunt" comes up. To top it off, we were put on the junk floor over in the old part of the hospital. It's not the fact that it's an old room, but more that most of the people over there are clueless. Many of them refuse to listen to us as parents, there is only one space to sleep (one space, two parents, what to do?), and many of the people fluctuate from being TOO attentive and waking her up every five seconds, or not attentive at all, with alarms and beeping driving us nuts for long periods of time. Lucky us, after it was decidedly a GI issue, we got moved to the GI unit. One of our favorite nurses is taking care of her now, and I actually got some sleep. Nothing more exciting than that! It certainly isn't the way I wanted to spend my week or weekend but hopefully we've convinced GI that there's something more going on besides simple reflux.

Mother's Day Muck

Happy Mother's Day to me... Friday we took Callie in to NCH because she was throwing up everything. They checked her shunt through x-ray and MRI and the results showed stable. By the time we got out, she was doing better. Yesterday she did fine with slower feeds. Today is a different story. Our morning has involved puke, puke, and more puke. She had some coffee ground emesis this morning, so I switched out her formula for pedialyte. Since then we've done much better as long as she doesn't move. Usually when we get the brown yuck it's after she has worn out her esophagus. I'm trying very hard to treat this from home, no one wants another stay in the hospital! Poor kid... Needless to say, our mother's day plans changed! Lucky for us, my daddy has volunteered to be the grill master today and cook out instead of eat out. Let's hope Callista gets over whatever this bug is soon!

Of course, what better day than today to give a shout out to our mommies. Both of our moms have been incredibly supportive of us throughout our lives and especially the last year and a half. We are so lucky to have two great women as influences and cheerleaders.

Some moms have the typical path to follow while others are forced to take a rougher road. But all moms have struggles and hardships and tough decisions to make. We all fight with ourselves about whether or not we chose correctly, did the right thing, are we a good mom? Enjoy the day and each second you have with your children, special needs or not, because that is what being a mom is all about.

Happy Nurses Week!

Since Callie can't say it yet, I will say it for her. Happy Nurses Week to all the nurses that have touched our lives. We had our favorites from the J4 NICU (Thanks Joann and Layla, you rock!!) and we can't forget Sherri and Liz from A2 (love you guys!). We spent almost 3.5 months of Callista's life basically living with the folks on these floors and we couldn't have survived without their humor and love for Miss Callie. We also thank Callie's home nurse, who has been so sweet and kind over the last eight months. We wish you luck as you move on <3 

Mostly, we want to thank our MOST FAVORITE nurse ever, DADDY!!  From diagnosis day until today, it has been such a blessing to have a nurse as a husband and father. He takes such great care of our little bug and helps me wade through the medical jargon and random test results. He is there to keep me from being intimidated and to ask questions I wouldn't think to ask. And of course, he is there to do the gross stuff like IV antibiotics and dressing changes (hehe!!). Our family would not be as strong without this wonderful guy in our lives. We love you!!

Be nice to your nurses this week and every week! They work hard, they work long hours, and they take time away from their family to take care of yours.