Home Sweet Home

It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.

We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.

Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)

I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.

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!

Three Letters: UTI

What a bummer! Callista is admitted to the hospital with a UTI. She has been vomiting since her MRI April 2nd, but we attributed some of that to her adverse reaction to anesthesia. Then we changed her formula to something for older children around the same time. So the symptoms could have been due to many things. But apparently it was a UTI. I am quite a bit disappointed it got this far considering I brought it up to urology at our clinic the first week of April. I told them I had concerns about it and it was brushed off. When will they learn that moms know best?

As for now, we will be in the hospital at least until tomorrow, but maybe more depending on what kind of bacteria is causing her infection. This also sets back scheduling the shunt revision. I haven't heard from the team how long we have to wait now, but it's too dangerous to do a surgery when there is infection in the body. The last thing we need is a shunt infection to go along with it. We have several neurosurgeons on the same page now regarding how to proceed with the syrinx. A large pocket of fluid is in the center of her brian and the catheter is barely in the pocket. Hopefully once the shunt is fully functioning again, it will clear up all the extra fluid making its way down her spine.

I shared on Callie's facebook page as well, but wanted to post here too... We have joined the Amazon Affiliate program. To the right, there is a link to amazon. If you ever shop there, you can go through Callie's link and a percentage of your purchase will go into her medical account. It costs you nothing! Please consider using the link in your shopping endeavors :) We use these funds for equipment that insurance won't cover, as well as saving for braces, etc. since only one set gets covered in a certain time period.

When Life Gives You Lemons...

Squeeze them into the face of the one who have them to you! Oh wait, that's not how that saying goes... Oops.

Well, we've just been handed a whole basket of the suckers as of yesterday. Her MRI was supposed to just be routine. They tried a tube too big for her first and couldn't fit so they had to go to a smaller size. They informed ENT and of course whenever they get involved, things go crazy and get blown out of proportion. They did a bronchoscopy which showed nothing. So instead of being outpatient we ended up staying the night in the PICU. They said she had a hard time breathing after those things getting shoved down her throat (uh, are we surprised?). She was back to her normal self in no time as soon as everyone stopped messing with her.

Then we got news from the MRI. My poor baby is going to need another surgery. Her MRI showed that a syrinx has developed all along her spine. This is fluid where fluid shouldn't be. There are three main things that would cause this. One: her shunt isn't functioning at full capacity and instead of her head swelling, the fluid is being pushed into her spine. Two: the fluid is still blocked somewhere at the base of her skull. Three: she has a tethered cord. Thankfully, the first one is the most likely indicator which as the easiest fix. It's preliminary but our neurosurgeon came in this morning to say that a shunt revision is most likely the plan. If that doesn't work Callie will have to undergo another decompression surgery or a release of tethered cord, although he is doubtful it's tethered cord.

We are really hoping the shunt revision helps, because another brain surgery is huge... A blow like this is hard to take since we thought things were going so well. She is making progress (however small) in pt/OT and for once life was going okay. We get lemons practically thrown at us every time we turn around. Sometimes the events in life that aren't so great outweigh the ones that shine. My husband and I are trying so hard to not let this happen. It just gives you a lot to think about. I feel like noting the disclaimer again that these types of problems don't happen with every SB kiddo, we just seem to keep getting the worst of the outcomes.

Once things are a little more certain I will update everyone. As always, we appreciate all of you following our journey, those who share our blog, the loving comments we get on our facebook group, etc. Each view, ad click, and use of the search bar also contributes a small amount to Callie's account and we are so ever thankful for that as well. <3 We can't get through this without you and your good thoughts. We LOVE you!!

Recovering (all of us!)

We are finally headed down the long road of recovery. Callista from her illness of course, but her daddy and I from sleeping on a hospital couch, cafeteria food, and little to no rest. They released her Monday (20 minutes after the snow started, thanks again) with oxygen for at night if she drops her saturation. They didn't send us home with a weaning plan, but thank goodness for our wonderful pediatrician. We couldn't ask for anyone better to be on her side! He gave us the go ahead to wean, suggested we stop the antibiotics, and said that if he didn't know what Callie had just been through he never would have guessed because she looked so good. Now if we could just get our one year wellness visit it! Apparently you are required to be WELL for that.

It seems as though our little one has started growing and developing like a weed just within the last two weeks. She is now expanding her babbling sounds and I swear we are thiiiiiiiiiis close to saying mama. She talks non stop at this point and is becoming such a big girl! Her head control is developing nicely and she is starting to get some strength in her core. She has started reaching for things and touching things. Her whole body movements have increased by a lot as well. Miss Callista has had a long break from therapy after being sick, but next week she is back to working her little baby butt off. Her grandpa made her a therapy bench so she will not get lazy at home either!

A Diagnosis

Ding Ding! We have a winner. Two winners actually in regards to what the heck Callista has. RSV with secondary pneumonia. Oh joy... They have her on amoxicilin as precaution but the reality is there's no treatment for either of these. She just needs to get over it. Right now they've got her admitted as "comfort care", meaning she gets oxygen as needed, some saline breathing treatments and tylenol as needed.

We still have a day or two left in the hospital according to what the doctors have to say. She is okay being off oxygen while awake, but still dips into the 80's while she is in a deep sleep. Until she can behave herself while sleeping, she will remain admitted. We've had some excellent care this stay, although I still don't feel comfortable leaving her by herself. Daddy and I have been trading places as to who stays with her, just so we can get a shower in our own home and to sleep on a real bed. I've had to take off work for several days, but you do what you have to. Personally, I think there's a week minimum stay for Children's Hospital. It's probably in the fine print on that yellow consent form you sign in the ER! I will use the hospital time to finish the latest Stephanie Plum novel, Nineteen. (The Stephanie Plum Novels By Evanovich, Janet). It's junk food reading, good for those long, LONG days hanging out in the least fun place to be....

I've been doing a lot of soul searching (if that's what you want to call it) over the past week or so, and I am trying to find a better way to be there for my child more. Financially, we cannot afford me not working, but we've been working very hard to get out of debt. I think we are making some great progress, although we still have a long way to go. Thanks to everyone who donated to our give forward account over the past year. I wanted you all to know how appreciated it is, and to let you know it will go toward paying for outstanding bills we still have from our trip to Vanderbilt in 2011 (yeah, that long ago!). We never would have made it without the support of our friends, family, and amazing strangers.

Incision- don't look if you don't wanna see :)

Soooooo...... these are my staples.... they are about a half inch below my belly button and extend a good six or seven inches below that. Other than being crazy bruised, they aren't nearly as horrific as I thought they would be. When the doctor made me take off my bandage, I refused to look at them for awhile... But had to come to terms with that if I wanted to take a shower. :) Getting them out tomorrow hopefully!

Operation Complete!

I finally have the stamina to stay up long enough to recap our last week...

Monday: We left our house on the way to the airport at about 4:30am. I felt as though it was the last day of my life... There were many tears, and even though I knew deep down I'd "live through this", it still was scary walking out of my home and into the unknown. We landed safely in Tennessee, and attended our pre-op appointment. They took some blood and reiterated the risks associated with the surgery. I never again want to hear someone telling us we have to "make a decision" as to what to do if they couldn't save the pregnancy. In the end, there wouldn't have been a decision, because she wouldn't have survived being only 23 weeks old.

Tuesday: Bright and early, we arrived for my surgery at 5:15 in the morning. I was a mess, freaking out about the entire thing. The thought never crossed my mind to back out, but I was a wreck. They immediately took us to a labor and delivery room, and started prepping for the surgery. It took them a long time to get an IV into my hand, so I was glad when that was done. The digging around only added to my stress of the day. Again, they brought up the chance of viability... At this time, I really couldn't contain myself anymore and had a full blown panic attack, complete with trouble breathing. They offered me the amazing drug (whatever it was!) to calm me down and from then on out it's all hazy to me. I remember them having me lean over for the epidural, and I remember them putting a mask on my face and telling me to breath deeply. I breathed deeply once... And then I woke up in my room with everyone telling me how great it went. I asked Casey several times if I was all done, obviously nothing was sticking with me. The baby did great, her heart didn't change the entire surgery, neither did mine. They told Casey and my family the lesion was a bit wider than expected, so they laced it with dissolving mesh that would allow her nerves to grow normally now. I still had a lot of drugs in my system and a working epidural, so this day is pretty much a blank for me.

Wednesday: I was feeling more awake this day, which means I was feeling awful. I ended up taking a lot of IV drugs to ease some of the pain. They had me sit up in bed some, but that was the extend of my day. Sleep, take drugs, sleep, talk, take drugs, sleep. That's about it, yeah. The magnesium sulfate they were giving me made me feel like I was dying. I was so hot, and so thirsty (I wasn't allowed to drink ANYTHING still, meaning my mouth was like a piece of flaming hot pavement, to me anyway). I had a cold wash cloth on my head at all times.

Thursday: What can I say... a MUCH better day. They removed my epidural, and stopped the magnesium sulfate. I had a splitting headache the entire day, but they let me have water and that was by far the best taste of my life. I still slept the majority of the time, but they let me listen to Callista's heart and it was so strong and regular, it really put me at ease. The catheter came out as well, and that's an experience I'll keep to myself. Trust me, you don't wanna know!

Friday: The IV came all the way out and I was switched to pill form of all my meds. I was switched to a regular diet, although my tummy was still incredibly tender and I couldn't really enjoy it anyway. Mostly, I was still infatuated with drinking as much water as I wanted! My pain eased off a lot, and I was up walking three times. Getting out of bed is hard without those tummy muscles you take for granted. They did an ultra sound of our baby girl and she was doing wonderfully. Her fluid is still great (which sometimes is a problem with fetal surgery, they lose their fluid due to the opening of the uterus). She has a steady heart beat, and the best part is we can already see her moving her little tiny fingers and toes. What a relief.

Today!: I haven't taken my "strong" drugs since early this morning and the only pain I feel is where the staples pull on my skin. They did another ultra sound this morning and you can actually see where her spine looks normal after it was repaired. I've had some nausea throughout the day that doesn't seem to want to go away, but little by little my recovery is happening. Heading to bed in a minute, after listening to that little heartbeat that I live for now.

As of yesterday, we've made it to 24 weeks, which is considered "viable", our next short term goal is 28 weeks. Our long term goal is 37 weeks, which is all the further they'll let her go. Keep us in your thoughts and prayers, we love you all!!