Follow Up MRI

It's been almost five months since Callista had her second decompression surgery. Tomorrow is the day we find out if it actually worked. We are scheduled for a full brain and spine MRI bright and early. They will be checking to see if her syrinx has gotten smaller and reviewing her chiari malformation. Please pray that these things look better. If they do not, there are only more serious options for us to consider and I cannot imagine putting my sweet girl through another surgery so soon.

We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
 

In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.

 A few weeks ago we also finally got a stander for the little monster. Because Callista cannot bear weight on her legs, she doesn't get the opportunity to strengthen those muscles. By using the stander, we can encourage muscle building, bone growth, and trunk control. It also is helping a lot with her head. She loves being in it, in case you couldn't tell by the huge smile on her face! On the 30th, we take her to get her final fitting for her leg braces. These braces don't mean she can walk, but it will help her hips and her foot stay in proper placement. I look forward to posting a picture of those too :)

To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3

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.

Pain, Pain, Go Away!

Callista had her second decompression Wednesday. If you know Callista, you know this came with some drama. What was supposed to be a 5-7 hour surgery turned into a 14 hour surgery. Nothing necessarily went wrong in the surgery, it just proved to be a little more difficult than initially expected.

We brought her in at 6:30 for surgery prep. By 8:30 they took her back for anesthesia and to place her IVs. At 9:30 they called out to tell us they were struggling to get lines in and the surgery still hadn't begun. Around 10:30 someone came to tell us they started shortly after our last phone call. The nurse was so good about calling us with updates every hour and a half or so. But after the seven hour mark, it was a little stressful waiting on those phone calls. Each time we were assured everything was going smoothly, the doctor was just taking his time finding the right placement.

Finally around 11:30 the surgeon came out to say it was done and he thought it went well. I am forever thankful it was HER surgeon that worked on her, I cannot imagine a new person taking on such a huge procedure when they did not know her. Dr J. claims this was Callista's going-away present to him. He had to remove bone that had grown back from her surgery when she was two months old. She also had a lot of scar tissue which took some time getting through. He could not pinpoint the spot where the fluid was blocked so that also took more time than necessary. He removed a cyst she had in her brain that had been there since her last decompression as well. Finally he was able to place the stent and close.

She had a CT scan shortly after surgery and it showed the stent was in the right place. They kept her on the breathing tube since she had been under for so long and it was 1:00am. She was able to be taken off the next day. She had a fever all day Thursday so they pumped her full of antibiotics to fight off any possible infection. It finally broke later that night and she was feeling a little better. Her pain was controlled okay until this morning.

Somehow her pain meds were not given around the clock and she was about two hours late on one. She woke up screaming in pain, she held her breath four times, and scared a nursing student to death. Once she got caught back up, she's been happier today. She is awake more and trying to talk and play, but wears out easily. She enjoyed sitting on Papaw's lap today after several days of not being able to be cuddled. She's got pressure ulcers all over the sides of her face from being in the halo for such a long time. She also has a lot of swelling from the surgery and fluids she's been given. We tried to start her food but she couldn't handle it. Hopefully tomorrow is a better day! We hope to be discharged by Monday but she has to eat and have adequate pain management with oral meds.

We won't know if this surgery did what we needed for several months (as long as 4-6 months). The MRI yesterday showed smaller ventricles, maybe that's a good sign!

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.

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 :)

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!!

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!!

Children's Hospital of Vanderbilt

We have a glimmer of hope today.

First, we were referred to Children's Hospital of Philadelphia to get an evaluation for in-utero surgery for Callista. It's not a cure, but the outcomes for children who receive it are amazing! If you ever have time, you should look up the MOMS study, it's quite an interesting read. After speaking with them today, my hopes were crushed because they require patients to move there if in fact you qualify for the surgery. I cannot move there, so far away from all of my support, my family, my friends, my home, my fur-baby. I don't think I am mentally able to do that. So CHOP was put on the back burner.

Then I was blessed with reading a blog from another mommy who had surgery at another one of the original hospitals of the surgery: Vanderbilt, in Nashville TN. She got to return to her home state 9 days after surgery, with weekly monitoring at her own certified hospital. So I turned to that option instead.

As of now, we're waiting on a date for our evaluation, and it seems to look promising. My doctor at Riverside thinks there's no reason we would not be considered a candidate, and the enrollment person I talked to at Vanderbilt was also very optimistic. Our evaluation could be in as little as a few weeks, and once we know if we qualify, the surgery will take place the next Tuesday!

I'll be on bed rest for the entire rest of my pregnancy, but it will be worth it if it gives our baby girl an opportunity to have better outcomes!

Prayers and thoughts are much appreciated, we love you all!!!!!!