Inpatient Rehab- Day 5

Well, it's hospital day 13. We are tired of these 4 walls. My baby is OVER IT. But.. we press on because we have a lot of work to do.

We moved to Inpatient Rehab on Friday afternoon. They did an evaluation and set a plan in place. She has Physical Therapy and Occupational Therapy on board. Two 1 1/2 hour sessions a day Monday-Friday (815am and 1pm). Then one 1 1/2 hour session Saturdays and nothing Sundays. So far, she isn't participating any better. Some may even think my kid needs Speech, but she talks JUUUUUST fine.. she just chooses not to most of the time. "Uh uh" and "NO!" are all that most people see. My kid is over it. She's not getting "comfortable" with people. She's not excited to play the games. She is essentially getting nothing out of it right now because she is so uncooperative. She completed her IV steroids last night, so I can no longer blame them. This just may be my kid in this situation. She's scared. She's in pain. Things aren't moving the way they did just 2 weeks ago. She;s wearing a new brace. Strangers come in and poke and prod her. Oh, and she's 2. This just is not her scene. But I continue to work to try to get her back to her baseline.

So far Occupational therapy have just played games, not really involved the right arm. Just trying to develop a rapport with her. And Physical therapy worked with her feet and put her on the tilt table to put her in a stand position. She was exhausted and fell asleep.

I requested anxiety medication to give prior to her therapy sessions. I think if she wasn't so scared, she may participate. Honestly, I could use anxiety medication prior to it because it's a little intense.. and it's not even my body. The doctor agreed. We couldn't get it in time for her therapy session this morning, but we will have it for the afternoon. I'm hoping to see a difference. Otherwise.. I'm jail breaking her out of here. I can't handle seeing my kid so frustrated and miserable anymore.

I'm lying, I won't. I really want to.. but I also don't know what the heck I'm doing to rehabilitate her. And in order to give her the best possible chance.. I know this is where she needs to be.

Friday we have a meeting with everyone involved in her case to talk about her progression... and maybe talk estimated discharge date.

Dr. Mangano, who did her surgery, has been out of town since her surgery. He called FROM his vacation multiple times to check on her.. especially when things weren't going well. I finally saw him last night and got the first good news in days. He has NO DOUBT she will walk again. He said "I did the surgery.. I saw her sensors remain untouched during surgery.. the MRI looks great.. there is no reason she won't walk. She has weakness, and yes... it may take 6 months.. but I have no doubt we can get her back to baseline."

And then I cried, and danced, and called all my people. I mean.. Helllooooo.. THAT IS WHAT I NEEDED!!! I can handle 6 months. I can handle 2 years. As long as I know my kid has the potential to get back to baseline.. I can be patient. He also said he wants the brace on 24/7. Ew. Fine.

We are going to try a couple of new medications. Neurontin.. it's a nerve pill. We think her right side has an excessive amount of pain.. so we are going to try to calm down the dermatomes with that pill. We also are going to try baclofen. Physical therapy noticed her muscles are so tight.. and she is at risk for contractures because it hurts her so much to move. Baclofen will help relax those muscles. (In nursing school, we learned "if you take baclofen.. you'll be on your back.. loafin'!").

I FINALLY got to snuggle my other 2 babies over the weekend. I hadn't seem them in 10 days. That is FAR TOO LONG!!!! Saturday, it was just Aubrey and I. We snuggled, played, acted like fools.. it was great.

Meanwhile, Jake and Vivi met Dierks Bentley!!!! 

Sunday, Bryn was coming back from Tennessee. We planned to have her stop at the hospital on the way home to see Vivian. I became anxious and decided just to meet them down there and let Vivian see Aubrey, too. It was great. Vivian smiled big time. Bryn kept rubbing on Vivi's arms. Aubrey drove Vivian crazy. "Mommy, she touching me!! Mama, she pulling me!". Vivi normally LOVES her sister, but not that day haha!

Sunday night, my mom stayed with Vivian in the hospital while Jake, Bryn, Aubrey and I snuggled at home. Bryn was so grown and sweet. God, I love that baby!!!!

Monday, back to business. We went grocery shopping for some healthier snacks for the hospital, then I had to drop Bryn and Aubrey off to Jake's parents. Not even 24 hours after getting my Bryn back.. I had to give her up again. I'll go back to our house Friday and snuggle Bryn and Aubrey til Monday while Jake is down here with Vivian. Depressing.

But my mom did take Vivian for a ride outside!!! I'm sure she enjoyed it much more than her face shows..

Stitches come out in the next few days. They plan on giving her versed so she'll tolerate it. Midline IV comes out later today. No more IV meds. Whooo!!!

Slow and steady, Slow and steady.

Onto the regular floor

We are officially OUT of ICU. We moved to the regular floor on Wednesday. I am officially NO LONGER an anorexic now that I can eat in the room! Cheers to full bellies!

Honestly, I was never hungry in ICU. Stress will do that to ya. Now that she is on the regular floor, it's so much less stimulating. Less people coming in, less medications, less restrictions, less assessments, less vitals.. just LESS.

We both slept well in our new room. So far, she really hasn't changed her mood. I see brief periods of my normal girl.. but very brief. It gets a little frustrating because it's so hard for people to assess her. I just have to keep reminding myself SHE is frustrated as well. She would give us all the middle finger if she could.

Jake's birthday was Wednesday and he was able to come down after work to hang out with us. Vivian loved it. She is obsessed with her daddy. Last year on his birthday, she had Hand, Foot and Mouth disease. What a stinker! ;-) Jake is such a trooper and just smiles through all of this. He was finally able to hold her Wednesday, which just made his day! And mine!

Medically, she is doing well. She is at risk for autonomic dysreflexia (or AD), which is a condition that can happen after spinal cord injury. Her blood pressure is higher than it should be, but the steroids could contribute to that.. or her absolute angst every time someone comes near her. They are monitoring her bladder because when it gets distended it and send them into "AD". So we are just watching her closely. She will be on IV steroids until Sunday and then taper oral steroids for a month. Oy.

Every. Single. Test came back negative. No one has any idea what caused this hell. All the fungi tests were negative. They have a couple random tests pending that take a month to come back but they "don't expect any of those to be positive". Oooook. My girl is a medical mystery. Awesome. I still have to ask them more questions, like... do we expect this to come back? Are we going to always monitor her? They did say they don't think our other girls are at risk since it is obviously something super rare.

Still minimal improvement when it comes to moving or sitting up. She remains "stable". Her legs are able to be manipulated out of the "frog-leg" position, but she doesn't love it. Her feet need some exercises to become flat because right now she has her feet pointed. They may require a brace. Later today, she will be going to inpatient rehab. That is JUST what my girl needs. They do therapy 3 hours a day! Yes!!! Monday-Friday she will have the same therapist. Saturday it'll be someone different, and Sundays are a day of "rest".

I'm ready to get her somewhere consistent and off her IV steroids. I'm hoping she cooperates better then. I still can't get anyone to tell me my girl will walk again or return to her baseline (which is perfect). I just WANT someone to tell me "this is going to be a long process, but I KNOW she will walk again". If I knew there was a light, I could handle this. It's just hard hearing "there is no way of knowing". UGH!!!! Give me my dancing fool back!

Jake and I have made a schedule for the next few weeks. I'll be with Vivi Monday night-Friday evening.. and he will be with her Friday evening until Monday evening. That way we both get time with our girls. And I think I'll always bring Bryn and Aubrey down Sundays to visit Vivian.

One day at a time.

Progress.. ish

Well, we still don't know what cause my baby to go through absolute Hell. That SOB won't show it's face. Ultrasound of her liver and spleen show nothing. Blood work shows nothing. Tumor "final report" shows "necrotizing granuloma from inflammatory response".. same as initial report. We are waiting on some fungi report to see if that could've caused it. The thing that concerns me most is not finding it. And what if it's something my other kids were exposed to? I was exposed to? My husband was exposed to? Vivian doesn't go anywhere independent so whatever it is.. we are all at risk. Ah! Okay, I've got to chill or I will drive myself crazy thinking about it.

They kept Vivian's blood pressure up since Saturday night, and today, they discontinued all the medications keeping it up, excluding the steroid. They removed her femoral line, her arterial line, both her IVs and her feet and her IV fluids. My girl is officially disconnected from everything. She only has 2 IVs left!!! We remain in the ICU because neurosurgery wants to keep a close eye on her mobility, but we should move to the regular floor tomorrow. I love our ICU room. They say it's the biggest room in the hospital! But I'm ready for have less stimulation for my girl. Parents also can't eat in the room while in ICU. They have a break room on the same floor, but not near where we are. So basically, I sneak snacks and don't eat meals if  no one is here to relieve me. I mean, how are you supposed to leave your scared 2 year old alone?! You can't.

The increased blood pressure did seem to help a bit with her mobility. She still doesn't move her forearm, wrist or fingers much.. but she is gaining strength in her shoulder, triceps and biceps. Little bit at a time. Her legs were "frog-legged" which is just the way gravity lets them fall, but isn't how she should be holding them, so we are working on getting them into a normal placement. However, it just takes time as well since she is so tight.

She was placed in her back brace. Because she had such a large surgery and she is so young with soft bones, she is at a very high risk for spinal instability. This would be corrected by placing hardware in her spine. No, thank you!!! So, this back brace is supposed to help with that. She will have to wear it constantly for 3-6 months. She will be reevaluated frequently to see if it's working. She may still need surgery, but I will make sure I do everything I can to avoid it.

We will be here for... awhile. Next Monday, the plan is for us to go to inpatient rehab here. We will be there for a few weeks. She has a lot to do to get mobility back. I knew it would be like this going into it, but.. it doesn't make it any easier. It's hard explaining her "baseline" before surgery vs. now. It's tough to swallow. I asked the neurosurgeon if Vivian will walk again. He said "I don't have a reason why not..". Nothing happened during surgery that would explain her not regaining her strength and mobility. I just hope she participates. The steroids.. situation.. it's all making her a totally different kid. She is so frustrated, grumpy and says "uh uh!!!" or "no" to 95% of what we ask. It's really depressing.

Today she worked with PT and OT for the first time. Just a couple little movements. Then, they sat her up with me in the chair. I got to hold my baby!!! I know she was happy and felt very calm, but wasn't my typical snuggly, loving baby,

My Bryn is still in Tennessee loving life with her cousins, Aunt Heather and Uncle Jud. She is being spoiled rotten!! Bryn, her cousin Deacon and Aunt Heather went to the zoo today. How stinking fun!! She will be home Sunday and I can't wait to squeeze her!!!! Aubrey has been staying with my parents. I'm obsessed with the pictures and videos I keep getting. She is such a good baby. Once we are out of ICU, my babies can visit. Not that I'm thinking they will be at the hospital often while she is here medically, but it'll be nice in rehab to have my babies together.

We are slowly getting there. It's been a roller coaster of emotions so far. I know we have bad days ahead of us and good days.

Tough Day

Well, it's been quite the hellacious 24 hours.

Yesterday afternoon, we took Vivian off of Precedex because her heart rhythm became irregular, which is a common side effect. After being off it for awhile, she started to become her normal sweet, playful self intermittently.

They advanced her diet and she was able to eat anything so I was helping her with her very first meal since surgery. I was placing everything in her mouth, then I realized I wasn't doing her any favors by doing everything for her.. so I wanted to make her do some of it herself. I began handing her goldfish to her left hand and she would immediately, gracefully, put them in her mouth. Whoo! Strength AND coordination! After awhile, I realized she wasn't even trying with her right hand.. so I started asking her to move it. She couldn't. It was completely flaccid. I let the nurse know.. and that's when all hell broke loose.

Since she had been on Precedex, it was hard to really assess her neuro function.. but I SWORE she had moved that arm. I had no specific memory of it, but I thought I had to hold it down. Also, during surgery, they monitored her neuro status and the neurosurgeon said everything was still intact at the end of surgery and she wouldn't have any damage.

So her lack of mobility and reflex was a big red flag. They ordered a STAT MRI. This was a process because she normally needs anesthesia for it, but couldn't because she had just eaten. So they had to restart her Precedex, give her a ton of fentanyl and ketamine to keep her still. It was also dicey because right next to us a baby wasn't doing well (and our nurse was the nurse of that patient as well). Jake and I were an emotional wreck.

We finally got her to MRI. They were concerned something was pressing on her spinal cord causing the lack of mobility. If so, they were planning of emergency surgery. No stress, right?

However, the MRI showed no changes. So they brought her back to us and decided to try to medically manage it. The woul her on EPI to increase her blood flow to her spinal cord. They also put her on a stronger steroid. If these medications didn't work, she would have an "exploratory" surgery to see what is going on. That.. sounds.. awful. I don't need someone opening up my kid's spine to "explore" it. No, thank you!!!!!!

Because the epi is hard on her little veins, they started a central line in her groin. And to closely monitor her BP, they RESTARTED her arterial line. Mind you, this is all at 1am. It was awful being in there and hearing her intermittently saying "Mamaaa". I wanted to vomit, but it was super sterile in there so I kept it together. Just kidding, I lost my mind and Jake had to cuddle me like a baby.

Finally, she was settled around 3am. Then, at 5am neurosurgery came in to reassess. Things seemed about the same.

It was pretty touch and go all day. We checked her right hand a million times. They really want her fingers to move because if the furthest part of the extremity works, the rest will.

Around 230pm, we saw a little bit of movement. When I lift her arm and dropped it gently, she was able to hold it against gravity slightly. About 1/10 times I could see the slightest bit of movement, but not purposeful and not when I asked.

Around 430pm, neurosurgery came in and asked her to move her fingers. She is. Slightly, but she did.. and on command. He was happy with that. We are going to continue the same treatment and monitor her closely. She will continue to stay in the ICU.

Pain wise, she is super controlled. She never complains! It's great. The hardest part is seeing how scared she is. She is just terrified of everything and is so on edge. She has periods of being sweet and fun.. but they are few and far between.

I'm trying to be patient, but it's hard. I just want my kid to be normal.. and dance and play whatever sport she wants.. and have no limits.

Tomorrow, she will be able to sit up. She has a god awful back brace to wear for 3-6 months, but if it prevents any further surgery.. BRING. IT. ON.

I'm hoping to catch some sleep tonight. I was an emotional wreck all day. Being away from 2/3 kids on Mother's Day.. one kid possibly being rushed off for surgery.. no sleep.. (PMSing)... I mean, I was a mess. They actually asked if I needed to speak with a chaplain. Lordy.

Tomorrow will be better. Physical therapy and occupational therapy are coming to work with her a bit. She won't participate, I'm sure. She hates these people and won't do anything for anyone. Stubborn lil thing. I'm just hoping they show us how to help her and us work with her like crazy. I thought inpatient rehab MIGHT have been off the table.. but it's not.

We will make it. My daily devotional reads "When you face unexpected demands, there is no need to panic. Remember that I am with you. Talk with Me, and listen while I talk you through each challenging situation."

I'm all ears, God.

Once again, the "weird" case..

Today is Post OP day 2. Vivian is progressing, slowly. She remains flat until tomorrow at 6pm. She cries when you touch her, move her or even look at her sometimes. However, it's getting better. Obviously, she has significant pain (Hellooo.. 16 level laminectomy).. but she also has significant fear. Her cry is about the same whether she is being turned or looked at funny by a doctor. I hate that she has fear. I hate that she has pain.

She continue to move her arms and legs, HELL YESS! She also has sensation. If you lift the blanket off her leg, she is aware. WHOOO!! She's very hesitant to turn her head. She does very small movements with it. We played some music today and she did the smallest, cutest head bobble ever. I love that baby and her love for music. When I began to sing she said "Not you.. me!". She says most things in a whisper, I can tell her throat is bothering her. 

MRI confirmed.. NO MORE TUMOR! I like the way Jake's cousin put it "Go back to hell where you came from!". Small blood pooling, but very little and as expected. I love me some good news!

However, the news that.. is good? bad? weird? Weird.. yes. We don't know what this tumor is. It had  necrotizing granuloma cells in it.. which indicates an inflammatory response to infection. So, now we have Infectious Disease back on trying to figure it out. We are once again the "Weird" case. Great. In fact they used the words "baffled". Awesome. They have done blood cultures, a TB test, tons of blood work and continue to run the biopsies through testing. All of these tests take days to a week to come back. Nothing that's going on with her is cookie cutter anything. They aren't leaning towards TB, but are testing it anyway. If they REALLY though it was, they would put is in isolation.. and we are not. Everyone is stumped. Um.. cool. Whatever infection it is, is a tough one. Any treatment is going to be hard on my girl. Months of medications that are rough on her organs, weird side effects and have frequent blood work.

The good news is.. it is 100% NOT Cancer..

When I asked, "is this better than Cancer?".. they said, yes. About anything Infectious Disease is better than cancer. Alright, I can handle that.

We need to find the origin of whatever this is, because it almost never starts in the spine. We are looking at her liver and spleen today because that is the most typical. Since we don't know where it came from.. we don't know if it'll come back yet..

Everyone is dying to know what it is. They said Vivian is a very "popular" case. Ohhhh, fun! I'm sure I would love it if I was the nurse.. but not so much as the mom. 

You guys, they are testing her for "Cat Scratch Disease". Like.. she's super abnormal. Haha! God love her!

At this point, we are just going to get her healed from her surgery and worry about the rest later. 

Her foley was discontinued and her output is great. They decreased her IV fluids and today they will discontinue them because she has adequate oral intake. They are lowering her sedation (ya know, from the max dose haha!). They are taking out her arterial line. Whoo! Get all of this off my baby! 

She'll be measured for her back brace Monday, likely, since it's the weekend now. We will be in the ICU until at least Sunday at 6pm (72 hours), but they don't typically move kids out at night to the regular floor so they may wait until Monday. 

Overall, we are doing well. She has intermittently spiked fevers, but nothing too concerning. I can't wait for them to find out exactly what's going on in my kid.. but until then, I'm happy with her progress. Jake and I are doing great. My dad got us a hotel 0.4 miles away so last night I went and got some sleep since I was up for about 48 hours straight lol! Jake is there now napping. I'm not sure if we will utilize it tonight or not. I might since Jake will go back to work Monday and then I will be on duty 5 nights straight. I feel much more capable today. 

Vivian's face is frozen in a frown. I did get one smile from her this morning, but for the most part.. she looks miserable. But she didn't smile at all yesterday, so.. improvement!

We can handle this!!! Pray for good results. Pray for an easy treatment. Pray for it not to come back. Pray for comfort for my baby.

Surgery Day

This was the big day. The day Dr. Mangano (neurosurgeon) would fix my girl.

The night before was... Rough. Lots of visitors, which I welcomed. The last thing Jake and I needed was to be looking at each other sad. My sister-in-law, Heather, and my one year old nephew, Deacon, were spending the night. We figured this would be easier on everyone. Bryn and Aubrey would wake up in their own house. And we could get some rest in our own bed before we went to fix my babe.

Boy oh boy were we silly. It was the most chaotic night I've had in a long time. Vivi was up crying for milk but couldn't have any because of her surgery. Aubrey was up ready to rave. Deacon was up because the wind and Vivi screaming woke him. Vivi ended up in our bed but is super restless so both Jake and I were wide awake. Lordy. I didn't go to bed until 330am. My alarm was set for 420am....

Or so I thought. At 545am Jake woke me up. We were supposed to be at surgery at 6am. As you can imagine, I was so  stressed. We made it in the car by 555am and were on our way. Phew! Everyone was very understanding. I was so concerned they would cancel her surgery. I would have just died. But they never rushed anything and were so sweet to us.

I was going to go for the "I'm losing my mind but I look really put together" look.. but... I didn't quite pull it off in those few chaotic minutes in the morning! I pretty much just LOOKED like someone losing her mind while actually losing my mind!

When Vivi had her MRI, they gave her versed (a form of valium) and it made her giggly and care free. She waved goodbye to us heading back to get her IV. We expected the same this time. They were planning on putting her lines in back in the OR to be very sterile so they gave her versed. Jake carried our little girl as far as we could go (they let us carry her back, which I thought was sweet). But.. she screamed being handed off. And it was awful. I broke down, Jake was super strong. Later, Jake told me he was getting ready to break down, but as soon as I did he knew he had to be strong. We can't both crash at the same time. We have been alternating this whole process. God, I love that guy. 

We knew we had a couple hours of prep ahead before actual surgery. They took her back around 745am. At 10am, they still hadn't made an incision because after they put her lines in, they flipped her to her belly for surgery and her central line moved. They couldn't reposition it to get it in the right spot. The surgeon said "buckle up for a long day" at this point. They ended up deciding to put a large IV in instead of try the central line again (infection risk) or start a PICC line. The surgeon and nurse updated us at this point. 

The first incision was at 1135am. Much later than expected. Every 90-120 minutes they would update us. It was great. The first update, the nurse called from the OR. "Hey everything is going great! She's great!" So, they didn't even need to talk to us in person, cool!!! 

The second update was called by the nurse to the secretary and written down for us "Things are going fantastic". For some people, they would need more. I needed nothing. No news is good news. They were so sharp and quick to update us on the central line complication, that I knew if anything was going slightly wrong, they would tell us. Nope, everything was fantastic. At that point, I walked to Chipotle with my mom and dad. I walked a LOT yesterday. I don't sit well. 

The third update was a written message, and it brings tears to my eyes "The tumor is out and we are stitching her up." 

THE TUMOR IS OUT. Oh my god. I danced, in front of God and everyone. Jake is super jealous of my dance moves so he had to announce I wasn't having a seizure, just dancing. Jealousy is so ugly. Haha!!!

2 hours later, the surgeon was talking to us. He thinks he got it all. He looked with some type of high magnitude ultrasound device and didn't see any tumor left. She will have an MRI today to double check. He said "I don't expect any surprises." And he's not a super warm and fuzzy, gonna make you feel good kinda guy. When he says something, I know he means it. He said everything went really smooth. She never lost function of any of her limbs!!!! (Baseline, her right side is weaker than her left. Who cares.) She will likely have some sensation issues temporarily. 

He said the "odd" part is the tumor. The pathologist at the bedside seems to think it is either a low grade tumor (if it's grade 1, no chemo.. if it's grade 2.. maybe). OR a inflammatory tumor. Which puzzles him as well. I googled, and honestly.. didn't see much. I asked if that is better or worse and he said "I mean, it's not bad". We won't know any real results for a week. I don't like to speculate and get my hopes up. But.. it's a really good sign at the got it all. We were afraid he would have to leave a "rind" of tumor and treat it with chemo. She would have a very high chance of it returning if he had to leave part of it. 

To be totally honestly, my girl being able to MOVE was my biggest hurdle for the day. I just don't know how I would go through life with a baby who couldn't move. And I don't have to find out. 

When we saw her, she looked like.. our girl. They said she would look very swollen. And she is a little, but I prepared myself for way worse. She is sedated and lying flat. She will have to lay flat for 3 days, so she will have to be on sedation for 3 days. While she is on Precedex, the drug to help sedate her, she will stay in the ICU. 

So, I guess my girl fought anesthesia hard in surgery. She was "hard to keep down" and she is on the maximum dose of precedex in the ICU. Our little fighter. She kicks and hits and hates being hooked up to all these things. I apologize to the nurses, but... I'm just so happy my girl is still there. THAT is my girl. She doesn't put up with anything she doesn't want to. 

Like her nasal cannula providing the oxygen.. She yelled "I don't like it!!!!" and ripped it off. These nurses will never see "Sweet Vivian" because she hates this place. I don't blame ya, girl. Let's not get used to it. 

She told me my hair was pretty. And she requested milk constantly. I finally was able to give her some water and she tolerated it really well. Her bowel sounds are already active so they'll slowly progress her diet. 

Vivi is in pain, as expected. It's hard to watch, but it was my least concern in all of this surgery. It's nice to be able to just focus on getting my girl comfortable instead of a grim future. They have her on scheduled IV tylenol (which is almost similar to morphine, weirdly enough) and robaxin (muscle relaxer). They put her on a pain pump with continuous fentanyl and a button I can push when she is in pain. She also gets valium around the clock because she can't sit up and wants to. 

Overall, gosh.. it was a hard but great day. The surgery was shorter than I anticipated. The outcome was better than anticipated. And while this is still a huge surgery with a lot of recovery, it had the potential to be the worst day of my life. It's not. 

Thank you for the prayers. We are so fortunate to have the best people in our lives. I can't even begin to imagine how many people were lifting my girl up in prayer. She deserves it. 

We Rise By Lifting Others

Thank you to everyone who has lifted us with prayers, positivity, distractions, comfort food (guess my summer bod will have to wait til next summer haha!), medical funds and all the fun stuff for my girls.

We have been overwhelmed with gratitude and I swear we will come out of this better people. Jake and I have never been selfish people but.. we have been very busy over the past few years and have overlooked simple things that we could've done along the way to help people. I'm amazed at the outpouring of love for my Vivian and my family. We are in awe. It has changed my life and my outlook. People ARE generally good. I had forgotten.

This is continuing to be a tough week. Many, many meltdowns. It's hard to mentally prepare for what's about to come. For awhile, it was easy to ignore. Now I'm physically having to pack up my Bryn to go to Tennessee for a week. I'm having to pack "to-go" bags for Aubrey and make my house make sense for not just me, but anyone who may be coming in to help with my dogs or Aubrey over the next week. I'm packing up my stuff to sit in a hospital room for a week, but not before enduring the most anxiety ridden day of my life Thursday.

I'm dreading it. It's sickening that I have to put my poor girl through this surgery. She is literally perfect right now. Her symptoms compared to what's about to happen.. it just doesn't seem right. It's disgusting. I feel helpless. I have prayed and prayed and prayed.. and at times I feel peace. But other times, I lose my damn mind.


Yesterday we prayed over facetime with a Columbian man who has a stole associated with miracles (very long but amazing story). We had blessed oil that I basically took a bath in and rubbed all over my girls and Vivian's neck and spine. Give me all the blessed oil. We went to Gratto at Bergamo and prayed (and prayed and prayed). So peaceful.

I likely will not update until after our ICU stay. Jake will be able to stay with us because our stay will fall over the weekend. I really only blog when he is not around because if he is around, I just vent to him. I don't need blog therapy if he is around. ;-)

Please keep my girl in your prayers. Specific prayers on Thursday : Steady hand, that the tumor is not intertwined with her spinal cord, that he can remove all of the tumor and no permanent damage. I want my girl running with her sisters next summer.

Today.. I wanted to puke..

I mean it. Today, I wanted to puke. There's been a few days like that. Where I just had a huge knot in my stomach and I swear the only thing that's going to relieve it is puking.

I had a phone consult with Anesthesiology about Vivian's surgery. I'm a nurse. This stuff should make sense to me. I should expect these things, see them coming. I should be preparing myself. I KNOW what she's going to look like when I see her in ICU. I SHOULD be able to visualize it now and the angst might be a little less when it happens. But... it makes me want to puke. I can't make myself think about it, not on my girl. Not on my baby.

Unless I'm forced to.. which I was.. today. I figured it out. My "good" days are the days I'm at home, with my babies.. with no outsiders. Just our normal days. It's not like I look at Vivian and am reminded of a tumor. She's running around, acting perfectly normal.

My bad days are the days when her upcoming surgery is shoved in my face and I have no choice but to face it.

Intubated.. prone postion.. art line.. IVs.. sedated.. trendelenburg.. needles all over monitoring her nerves (in her face.. her head.. My God..).. Opening her up C2 to L3.. Lord..

There are days I can.. and days I can't. Today I can't.

Nights are bad. Aubrey is still teething (but her amber necklace came today.. Cmoooon relief! And sleep!)

Vivi hasn't been doing well at night. I haven't been doing well at night. When she cries out, it's a constant reminder of what's going on in her teeny tiny body. This week, she started telling me there is a "bug" crawling over her. "Mom, look.. bug!" She points to her arms.. hands.. nothing is there. I assume it's tingling, Ugh.

I used to daydream traumatizing things would happen to me. I've never had trauma in my life. I've pretty much lived a very easy life. I've worked hard, played hard, and settled down. But I always had this gut feeling something bad was coming my way. I would find myself weeping in the car over something that hasn't even happened. That gut feeling.. ugh.


I need to hit the reset button. I need sleep, and then I can deal with all of this and be the strong woman I KNOW that I am. Today is just hard. It's the weather, right??



My Bryn is affected. I hate it. My pretty independent little girl is becoming super attached to me. Both Vivian and Bryn always want me to hold them and snuggle them.. which is obviously a blessing. But, it just hurts my heart because I know it's not just because it's a normal kid stage.. it's because they sense what's going on.

I'm trying to slowly explain to Bryn what's about to happen.. "Mommy and Vivian are going to spend the night at the doctor to find out what's going on.. and you are going to go play with Nanny, and Mammy. But FIRST, you're going to Tennessee to hang out with Addy and Ella!! Whoooo!!!" ....She wants no parts of it. I thought it would be like a big vacation for her.. all kinds of family and friends watching her.. FUN! But, she wants to be with her mommy. And little girl, I want to be with you.


On the healthcare side of things, my insurance thinks they can just deny Vivi's entire admission to Dayton's. Ya know.. the one where they found the spinal tumor... "medically unnecessary"..

I mean, it won't stand. I won't let it stand (mama roar). But.. just annoying. On top of everything else, can't we just stop having to take extra steps? We work. We pay our insurance. We never abuse the system. Just help us out.. grrrrr!!!!


Let me leave this on a positive note. After reading this over.. I need some positivity. One of my sisters comes home from college tomorrow, the other one is staying to practice for Nationals after she GRADUATES!!! My brother in law, nieces and nephew are coming in town. And my sanity saving sister (I'm looking at you Heather) is coming next week. All my peeps.

Goodness, super negative post.. but.. I'm "feeling all the feels".. or whatever that saying is.

Pray. Hard.

Tomorrow will be better.

Good News, finally!!!

Friday we had the day from hell. But somehow, my Vivian came out of it smiling and saying "Mommy, I laughing!" (Her new favorite line). She's amazing.

My dad decided to come with me for Vivian's appointments. I thought it was just because it was a long day, but now I'm realizing it was because he and my mom were afraid I would get bad news. Bad news after a long day and then driving home their sweet grandchild in rush hour traffic didn't sound like a good idea to them. Haha!

First, we had an ultrasound of Vivi's bladder and kidneys. She has a hard time laying flat, and she hates anything medical.. so this was the beginning of many breakdowns. Luckily, my kid recovers quick.

Then, we had a catheter placed in her urethra and rectum to measure the pressures, how much her bladder can hold and if she will empty her bladder when it's full.. and if she will empty it completely. Hell. She kept saying "mama.. mama.. mama!!" and crying. So I basically just laid my whole body over her upper body to shield her.. and to hide my tears. Her bladder held twice the amount they expected before she emptied. However, she was also screaming.. and has never had to urinate with a catheter in.. with people staring at her. In my book, she's normal. (The doctor agreed).

Then, we left in the catheter to go to xray. They filled her bladder with contrast, and then watched as she emptied it. Screaming. Again, body shield. This time she didn't empty completely. But the doctor said 1/2 of the tests is OK for him.

After all the tests, and a whole lot of waiting.. we met with the urologist. I really appreciated that after the testing, we were able to get the results right away. Nothing like a long day of tests, then having to go home and anticipate the call. He basically said.. she's good!! It's a good baseline. We will redo this day from hell 2-3 months after her procedure to see if there are any changes. But as of right now.. that stupid effing tumor isn't affecting my baby's bladder or bowel. Which means, it really isn't totally messing with her lower extremities.

Finally, good news. It had been a minute since the worst case scenario that I could imagine wasn't happening. Ah. Relief.. ish.


In true middle child form, Vivian hadn't been baptized. Bryn was baptized when she was about 3 months. Vivian is 2. It has been on my "to do" list for awhile. I even attended the class for her AND Aubrey to be baptized. Well, I can't have my girl go into surgery without being baptized.. so we put a rush on it and had her baptized Sunday. It was perfect. There are likely no pictures of my face because something got into me and I completely lost my mind during it. I couldn't control myself. So I covered my face with one of my kids and my thick mane the entire time. I swear I've been pretty darn strong, but that half hour wasn't one of those times.

Vivian was IN A MOOD. 'Roid rage is REAL!!!! Even her Pa (my father in law) got a look. That's unheard of. That girl loves her Pa. Luckily I am weaning her down off of them, so she is coming out of it. Those steroids turned my sweet one into a brat!!!!


My FMLA has been denied, because I took it with Aubrey back in October. So now I'm seeking out other alternatives. I carry our insurance and it doesn't make sense financially to switch to Jake's insurance. My manager has been amazing and has kept a lot of the stress of "Am I going to have a job?" away. The bummer is.. I had gotten a job in the float pool which was VERY exciting, and I would've been starting at the end of May. However, with all this happening, it is NOT the time to take a new job with new responsibilities so I had to turn it down. I would've been learning ER and ICU.. and also working with a new manager. With all the unknown, I just need a job where I am comfortable, know what I'm doing and have a manager who has my back. But, SOMEDAY! :-)

Vivian seems a little more comfortable this week and is waking up less at night. Phew! Aubrey is teething though, so I'm still up most of the night. But THAT I can handle. I can't handle my Vivi girl struggling. We have a physical tomorrow that's require for surgery. And as long as Vivi stays comfortable, I'm going to get a few days of work in over the next week to pay for our health insurance.

Today is a good day! Thank you for the continued prayers. I promise you, it's working!!! We are having WAY more good moments than bad. You all are so appreciated. Jake and I can't wait for this to be over so we can pay it forward!!!!! In the meantime, we are focused on getting our family through this small hurdle.