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.

Shunt Revision

Callista had her shunt revision early Friday morning. Other than dragging everyone out of bed at 3:30 in the morning, things went smoothly. They took her back at exactly 8:00, and the surgery lasted around two hours. We expected it to be a little shorter than that, but the doctor decided to do a little maneuvering of her shunt tubing as well as replacing the shunt. He said her old shunt was "sluggish" and some fluid pressure did come up around it when he opened her up. Before, he was 50/50 that this would fix her syrinx and now he is 60/40. Not much of an increase, but we will roll with it! Dr. J said the CT scans looked good and the catheter is in the spot he wanted it to be. We go for a wound check in two weeks, and a follow up limited MRI in six weeks. In about 12 weeks, she will go for a sedated MRI again to see if the syrinx is getting any better. If it is, we continue to wait. If it is not, we discuss other options for surgical intervention.

Callie woke up nicely from this surgery (it's amazing what the right size tube does for her, huh?) and only needed tylenol to manage her pain. We spent the night on the neuro floor and were released around noon yesterday. She is pretty much back to her old self, laughing at everything and very alert. We just have to deal with the post anesthesia yuck. The poor kid's stomach can't take it! She has tummy trouble for three to five days after she gets put under, no matter how long the procedure is.

In good news, Callista's 2nd Annual Benefit has a date and place: Profit's Park on July 28th. The time is still undecided. We will begin collecting donations for door prizes and auction items now. I am so excited to be able to do another benefit and be able to give back to the spina bifida community that has been such an amazing support system!

Well, THAT was Fun....

We did our first PICC dressing change tonight. Here's how it's supposed to go: wash hands, undress baby, put masks on any adult within range as well as baby. Create sterile field, remove bandage, wash area with antiseptic swabs, replace bandage.

How it really goes: was hands, undress baby, put masks on mommy and daddy, mommy holds mask over screaming baby as best as she can while daddy retrains baby's swinging arm. Baby screams and screams and holds breath due to restraining. Try to locate the damn supplies you KNOW you brought in while trying to keep a sterile field, maintain holding mask over intermittent breath holding baby Daddy struggles to put new bandage on flailing arm. Finally get to take off masks and comfort baby. Endure glares from said baby for the rest of the evening.

Needless to say, I hope it's out before the next change is scheduled to happen! Now I am trying to cuddle on the couch and make up with my littlest love, who is clearly going to hold this against us for a bit. Her shunt revision is scheduled bright and early Friday morning. It should be a short surgery and a pretty short recovery time if all goes well. Please keep Miss Callie in your thoughts. And a big THANK YOU to the folks who have ordered from our Amazon link! We appreciate the help :)

Bubble = Popped

It's been awhile, but today I did it. I had myself a pity party (balloon free, of course). How can you love your life so much and hate it at the same time? I love Callista, she's perfect in every way for me. I know she's different than other babies, and I make it a point to stay away from places where there are going to be babies... I like staying in my "Callie Bubble" where all I see is her development, her growth, her milestones.  But today all the imperfections in my little bubble were pointed out to me by life in general.

It all started with the MRI phone call and the list of what I like to call "the no questions". Because our answer is almost always no. After all the technical questions, (surgeries, med changes, etc.) we answer:

1. Can she sit up? No.
2. Does she eat anything by mouth yet? No.
3. Does she hold toys? No.
4. Does she have feeling in her legs? No, not for the most part.
5. Is she mobile? No.
6. Does she babble? Yes. (Score!)

Overall result: the no's have it. Way to rub it in, thank you. What does this have to do with an MRI? I'm already nervous enough about the sedation!

The second thing happened inadvertently through conversation with some lovely visitors at work. We were talking about my work in disabilities and encouraging parents to be advocates for their children. The lady I was working closely with asked me how my daughter was today after seeing her picture in my office. The talk around the table turned to children and another woman made the comment something to the extent of "I can't imagine having a child with a disability. I have a daughter. All I had to worry about was if she'd grow up to be a ballerina, but she played softball instead." Most moms won't understand but those words wounded me. My daughter will never be a ballerina or play softball... If you can't imagine having a child with a disability, there are many mothers out there who have children with varying degrees who can enlighten you. Having a child with a disability is: endless doctor visits, physical therapy, occupational therapy, surgeries, clinics, check the shunt, have an MRI, convince the person in charge that your kid needs bracing. Rinse, repeat. Squeeze your spouse in somewhere and if you're lucky, find a few hours of sleep.

Normally I could take these things in stride. And then I held an adorable little tiny baby. Yep, I broke my rule and hung out with a baby. But she was so darn cute! And her little ears were pierced. And she smiled at me. And I held her. I was fine, it was good. Until I was stupid and asked how old she was. Three months.... Three months old and light years beyond what Callie is doing. I cried. It's so ridiculous, I know. But the tears came, and I had to give her back and leave. I think it's the moment where you come face to face with things you'll never have that make it hurt.

So yeah, I had "a day" and I will be over it by tomorrow. I am certainly not proud of my lapse in mental status but hey, it happens. I will really feel better after spending some good quality time with my little monster next week. Other babies may be developing faster than her, but no baby will ever be cuter than her ;)

Shunt Scare

We had a pretty big shunt scare yesterday, but luckily everything turned out okay. When we gave Callie her bath Wednesday I noticed her lower back looked a little puffy. It did not seem to be bothering her so we waited until the neurology office was open in the morning. They were concerned that her shunt was not working and fluid was building up on her spine. We rushed to Children's ER at their advice. They also thought it could be a shunt malfunction. Apparently there was no hurry though because we waited almost five hours for an MRI. I tried to maintain my patience, but it is extremely frustrating to wait that long when the possibility of a shunt malfunction is very real when we've been whisked into MRIs for ER visits having NOTHING to do with her shunt. Her ventricles looked stable. They did a shunt series X-ray and it showed no clogs or kinks. So the shunt is in working order (yay!). The neurosurgeon on duty came to look at her and informed us that it is not a pocket of fluid but is more likely a part of irritated tissue from a recent virus. Well okay! We're still getting over RSV (can last 2 to four weeks in some cases) AND she just received her one year shots on Tuesday. Either or both of those things could be the cause. We were released with instructions to keep an eye on the are and to schedule a full MRI with sedation soon.

I am quite thankful, as my mommy guts told me something was wrong and I dreaded the thought of her having surgery. Besides, her hair is finally growing over her shunt and you can barely see it, give the poor girl a fashion break! Now we are just looking forward to the weekend a lot of baby cuddle time.