After Christmas Armageddon

Just... Wow. That's all I can say to describe our first Christmas with Callista. She had such a good time. Of course she had the most gifts out of everyone, being the spoiled little girl that she is. Her favorite gifts include a Dance and Learn puppy, a rain stick, and a giraffe with jingle bells on it. On Christmas Eve, she slept through most of the action, but woke up in time to play with Grandpa Lynch. I think her six cousins wear her out with all the action going on!

She was wide awake for the afternoon activities! Although she couldn't open her own presents, she enjoyed unwrapping in general, for herself and everyone else. Every time she would get a new present, she would look at her dad and if he smiled, so would she. 

We celebrated Christmas morning at home, and she slept through most of it too! Of course, I can't help myself but show off her adorable outfit. Apparently it was the only one Walmart/Sam's Club had because I saw a hundred other baby pictures in it as well LOL. 

We are back to normal life in just a few days, as my wonderful vacation is soon coming to an end. I'll be sad to leave her! We have myelo clinic on January 4th. I am praying for a good visit. She will have an MRI and a renal scan as well as our regular visits to neuro, ortho, and physical medicine. I feel like these visits too often focus on how far behind she is rather than how far she's come since the last visit. We are hoping her head control to be good enough for leg braces within the next 3-6 months! I'll update after our visit Friday :)

Have a great and healthy new year everyone!! <3<3<3

                                                                                        

Capitalizing on Tragedy

I always keep this blog about Callista and I think eventually my thoughts might blend together to fit with the theme. But I cannot ignore something so publicized, whether it be in the media or on facebook. My heart goes out to the families who lost their loved ones in such a horrible, senseless tragedy. I cannot imagine what it must be like to know your child (no matter how old) will not be coming home to you. Every day, we leave our children with sitters, family, the school, daycares. Never once do we walk away from leaving them thinking "I hope they're still there when I get back".

I've read/heard from many that they want to keep this about the victims, the people who were lost. And I agree, we shouldn't be focusing on the bastard that did this. But plastering the happy, smiling faces of these poor babies all over the place is unacceptable. The parents asked for privacy and this is how we as a community respect their wishes? I refuse to "like" those pages that are capitalizing on this tragedy. It is a given the nation as a whole is in mourning for the incident, but we must "prove it" by making sure everyone knows? The thought that someone was basically stalking those families to find pictures to throw together just disgusts me.

So instead of reposting those pictures and sharing those pages, do something! In your community, support your mental health agencies while voting. Be active in whatever religion you choose.Volunteer at your local children's hospital to hold the babies when parents cannot be there (by choice or by necessity). Raise your children right, teaching morals, high standards, and a tolerance of others. Love your family and make sure you spend time with them because every moment counts. Rather than focusing on where and how to place blame, work on making yourself a better person and influencing others to do so as well.

Things No One Tells You

When you are pregnant or have a new baby, there's always someone there to tell you the secrets of being a mom. You get hints on how to bathe her, feed her, change her, play with her, get her to sleep. But there are things people don't tell you, and you don't think about until they happen. Some things I didn't know:

• Apparently, when you become a mother, you now have this intrinsic love for babies, real or fake. And when one is in trouble (yes, the fake ones, specifically Renesme) your heart immediately goes into protection mode (hello, fake baby!!!). 
• Vomit/drool is nothing to be concerned about. Yeah, so what if I have a drool mark on my black shirt? I'll be wearing it to work anyway because who the hell has time to do laundry?
•  Your baby's poop is completely different than other babies' poo. Now I am definitely not saying ANY poop is awesome, but for some reason, hers isn't nearly as bad as someone else's dirty diaper.
• You make up things your kid "likes". Yup, Callista likes giraffes. Because I like giraffes. So obviously she does too. I'm sure she will have a complex later in life because I've forced these upon her. 
• No matter how bad of a day you have, one tiny little smile from your child can erase it. Seriously, just one.
• Babies make you do incredibly stupid things. Make squeaky noises with your teeth. Hang your tongue out the side of your mouth. Make ridiculous sounds with your nose. All of those things that everyone else would think look incredibly stupid, but you don't care because it makes her laugh. And then  you laugh. And she laughs harder. And then you all look like a bunch of ninnies anyway.
• Babies speak at highly inapprorpriate times. All the time. That moment of silence in church? Not for her! Sermon takes too long? We shall yell and tell him to wrap it up! Doctors are sharing information with mommy and daddy? Oh no, it's all about her, and she let's you know. 

I'm sure I have more to add, but right now, these are what come to mind. Callista's daddy and I went out to do something for ourselves last night for the first time in a long time. We saw Breaking Dawn (excellent!) and I was glad we got some time away. But darn was I glad to be home to see Callie after a long day away. Of course, mommy is having a strange allergic reaction to something since Saturday and at any random time during the day I look like I've gotten a bad dose of botox in my face and my arms and legs are a beautiful shade of pink/red. Total hotness.

After that super cute description, I'll end on a positive note. My baby girl is ten months old! *GASP* I am not sure how this happened. I am not sure why I am now pinning a million and one "first birthday" themed items on Pinterest. Where did the time go? We aren't reaching our milestones on time, but make progress everyday. Our new therapy goals are to have Callie sitting assisted by her first birthday and first bracing by 18 months. Our other goal is to have her eating some by mouth by her first birthday (everyone loves cake!). Wish us luck in meeting these goals and making progress!!

Happy First Butt Day!

Yes, you read that right. Today is Callista's butt day. What is a butt day, you ask? It's the celebration of the first day that Callie's little bottom first entered the world. One year ago today we were in Tennessee at the wonderful Vanderbilt children's hospital prepping for surgery. One year ago today my baby girl was 22 weeks along and had her very first surgery. One year ago today this mommy was a huge mess but found the strength to go through with something that had the possibility of changing our lives for the best or for the worst. And I don't regret a moment of it.

I can't say it was easy. It was by far the scariest day of my life. But was it worth it? Hell yes it was! Our little girl has an L1 lesion with no normal spine anywhere below that. Should she be able to move her legs? Wiggle her toes? Probably not. But she does, and we are so thankful.

None of this would be possible without my amazing doctor, Dr. Mingeone. Without him, we'd have probably found out about fetal surgery on our own, but his encouragement really led to the decision to do it. His faith in Callista before she was even born was just astounding. The staff at his office were so supportive and I can't say anything but praise for the positive attitudes. I was so thankful to be able to come home after the surgery thanks to this awesome team being here to take care of us! I also want to thank Mary from Vanderbilt. She was so honest with us, and so informative even over the phone just talking us through the initial steps. She put up with my endless calls, endless questions, and endless breakdowns while on bed rest afterward even! Of course, everyone on the Vanderbilt fetal surgery team has my never ending gratefulness (if that's a word!) for doing such a fantastic job.

So happy butt day my darling daughter! You sure are loved!

Plague Monster

The plague monster has struck our house! Poor Callista has been so sick for about a week now. Her nose is stuffy, she is throwing everything up, and she just all around doesn't feel good. We took her to the ER Monday afternoon because her secretions were making her choke. Of course, in true ER style, they can't just look at the symptoms of her, everything is OBVIOUSLY caused by spina bifida. So we spent seven hours waiting on them to x-ray her shunt, MRI her brain, and ultimately get a head ultrasound. She wasn't having any of the MRI and held her breath. They decided to do a head ultrasound instead so that I could hold her. It turned out her ventricles are actually smaller than the last one, so we were pretty excited to hear that. After they sucked our insurance dry, they said the problem could be: 1) a cold. 2) a bad case of reflux. And then we went home with a script for a suction machine.

Thursday we took her to her regular pediatrician. It was supposed to be a well baby check but she obviously wasn't well. She still got her shots and growth charting done. She weighs 16 lb, 10 oz and is 26 inches long. She is in pretty low percentiles but the doctor says as long as she is on a curve, that's what matters. I supose SOMEONE has to be the 9th percentile, right? He said her bad reaction to the cold can be caused by her reflux because the cold causes her to gag, the gag causes her to reflux, and then the reflux causes the mucus from her cold to be thicker. Vicious cycle I guess. It's been about a week now and we see no end in sight for her yucky cold. What's worse is now Daddy has it too I think.

For now, we are just going to stay holed up in the house for the weekend with our humidifier, some zofran, her favorite blanket, and mommy cuddles. Here's hoping she kicks this thing soon!

Quick Update

During nap time I actually have a moment for a quick update. Callista is making great progress in her PT and OT treatments. At out last PT appointment, she held her head up for about ten minutes (with a few breaks, but still sitting up). She has to get splits for both of her thumbs since she still doesn't hold them out like she should. Of course, our little Houdini gets out of them in a matter of minutes. Her first one was soft and she was out of it and it was broken by the time we made it home from therapy. She was switched to a hard one the next appointment and she had her thumb out of the ribbon and behind the splint by the time we made it to the car.  So we are still working on that!

For once, we don't have anything much to update on and for that we are thankful!! We have officially been home for the longest we've ever been home and enjoying every minute of it. Since the vesicostomy, things have gone so well for Miss Callie. No more UTIs, woo hoo!! We are still dealing with severe reflux, but she is gaining weight and not aspirating so no one is concerned right now. What a great couple of months it's been :)

Diagnosis- One Year Later

I don't talk about the events of "the bad day" in detail very often, because even to this day my body tenses up and I feel like I relive it again. The feeling you get is unlike any other you've ever felt in your life. It's a feeling only a mother "senses", when the silence is just too long.

I remember every little thing about the day, before, during, and after the events. It's funny how little things stick with you when a major event like this happens. I remember exactly what happened at work that day. I remember I was wearing my purple print skirt and white cardigan. I should have gone to that appointment alone, my husband was working. But all day, people were asking me if i wanted them to come with me. I told everyone no, it was just routine. My husband was able to get someone to cover for him for a few hours so he could come to the ultrasound. I t was overall just a really bad day for me and truth be told, I'd already cried BEFORE we even went to the doctors... All the signs were there that day that something was wrong.

We waited a long time for the ultrasound. It was about an hour late, and my husband thought he'd have to leave before we even got back there. We finally got to go back as the last appointment of the day. The tech asked us if we wanted to know the gender, but we already knew we were having a baby girl from our "fun" 3D ultrasound. She immediately confirmed it was a girl. She started telling us what she was looking at and after a few moments, she was absolutely silent. After what seemed like an eternity, she told me she was going to go get the doctor. I looked at my husband and told him that something was wrong. I could see it on his face as well.

When the doctor came in, she didn't say much, just started looking at things with the ultrasound. After only a few minutes, she informed us that there were some abnormalities and I needed to get dressed and come to her office. I was numb as we walked through the hallway, numb as we sat in the chairs, and numb as we first heard the words "Neural Tube Defect". Otherwise known as spina bifida. She threw out terms like "banana sign", "chiari", and "hydrocephalus". All I remember thinking was-- this can't be true, she moves all the time! She kicks all the time! Spina bifida means she is paralyzed and it's just not true. My OB had no information to share with us. She walked out of the room and just left us there, left us there to process on our own. After a short amount of time, we were handed a folder about Maternal Fetal Medicine and an appointment in Columbus, and we were basically pushed out of the office-- After all, it was closing time, what was a devastating blow to a family compared to wanting to lock up and go home?

What else does a girl do but call her mom to come get her? My husband had to go back to work after all this just to close out his patients with the new shift. So my mom took me home. And I Googled. And hated everything I saw. For being such a great research tool, the things you see when googling SB are SO outdated. Outdated as in false information. Outdated as in scary as hell. DO NOT GOOGLE. Plain and simple. It's hard to stop (said the girl who googles everything). But it's bad for you so just don't. I wish I hadn't. I wish I'd waited for Dr. Matt. I wish I'd waited for the wonderful nurses and doctors at Vanderbilt. Because I spent 24 hours thinking my baby would be paralyzed, would have brain damage, or maybe even wouldn't survive past birth.

This was literally the worst day of my life. Nothing else can compare to the pain and the grief over the loss of your normal pregnancy. It's weird moving into that area of unknown. Think about it: You get pregnant, you know how a baby is supposed to progress. Your friends have told you all the horror stories of labor. You've gotten all the hints from your mom and mother in law. And then you are dealt a new hand out of a blank deck of cards. No one can tell you what your baby will be like, no one can answer your questions with anything other than "we won't know until she's born". I've read several times throughout the last year where women like me have given other women the great advice to grieve over your "lost normal baby". It's natural to grieve because you lost the child you "knew" and are faced with uncertainty. For instance, October 4th, I wasn't thinking "I hope I get a surgery where they take my uterus out of my body, cut it open, and perform a second surgery on my 22 week gestation infant." (Yeah, dramatic, LOL). I wasn't thinking about the fact that my beautiful baby girl would endure six surgeries within 7 months of her life (or the fact that she may have to have more...).

If I knew what I know now, I'd still have worried. I'd still have cried. I'd still have asked God "Why me, why us?". But if I knew, maybe it would have been less worry, a few less tears, and instead of asking "Why", I'd ask for help through the rough parts instead. I know saying this now isn't going to help future SB mommies worry, cry, or ask less and give more. Each of you in turn will experience this epiphany on the birthday of your child and every day after. With every smile, the pain lessens. With every laugh, a bad moment is replaced with a good one. Every coo brings a little light to the dark spot. And I for one am looking forward to replacing this event on my list of important moments in my life with more important ones, like her first word, her first birthday, and yes, her first steps. All I can say to anyone in any crisis, not just SB, is HANG ON. I hit the jackpot for hanging on, for doing something not many people have to experience... This is my reward:

 

Celebrate Spina Bifida Awareness Month with us and spread the word that our babies are happy, awesome babies and deserve a chance to show the world :)

Appointments and Sit Ups

We had myelo clinic last week and all areas had good reports. Urology is happy with her vesicostomy. PT and OT all said she made improvements and commended our home PT and OT for doing great jobs. We didn't really get to talk to neuro but they checked her shunt and said all was well. Physical medicine was a bit concerned about her left leg, but ortho came to look at it and had no concerns. Her hips have always been under great scrutiny and she's had I don't know how many x-rays of them for everyone to decide her sockets are shallow. Her left leg always appears shorter than the other, mostly due to her muscles being so tight up the back of her leg. Once you do her stretches for PT, both legs are the same length. It just takes some effort and it's something we work on daily. We met another friend and her mommy, so happy to continue getting to know fellow SB mommies that are near to me!

In other happy news, Callista is working on her abs. Literally. She has been doing crunches lately, wanting to sit up so badly. We are happy to see such progress, but at the same time, I think it is making her reflux much worse. She had an upper GI study yesterday and they said everything is digesting fine but her reflux is so bad that once her stomach fills up, it basically shoots up her esophagus to her throat. We are doing slower feeds, and longer continuous feeds overnight to try and cut down on the amount she throws up. Weighing in at almost 16 lbs now, I don't think it has been hurting her growth!


My little brother and his new wife had their wedding reception last night and Callista got as much attention as the new married couple! We don't take her out much so when we do, everyone oohs and ahhs over her. She enjoyed the new faces and being held a lot. I do not know how, but she slept through the DJ, announcements, and constant stream of people. Then we get home and she doesn't sleep in silence. Perhaps the trick is to play really loud music? ;) All I can say is I have a REALLY good baby, and am so thankful for that!

A Bouncing Baby Girl

It's been one year since we saw the words "It's a GIRL!" flash across the screen at our Ultrasona gender determination appointment. I didn't know what would come ahead for us when we made that appointment. We made the appointment because I was impatient and wanted to know if we were having a boy or a girl, like, NOW. So yes, I paid $75 to know the gender a few weeks early. And I am so glad we did, because we had two weeks to completely and utterly enjoy our pregnancy. I had two weeks to buy girl clothes and think about how I was decorating the nursery. Two blissful, happy weeks. What a blessing for us, to have had that positive experience rather than having the fact that we were having a little girl be eclipsed by a piece of news we never in a million years expected to hear.

I didn't even know about Ultrasona until we ate at the Japanese Steakhouse and sat by a woman who had a new baby girl. She told us her and her husband did it to find out the sex before he left for Iraq. This woman was put in front of me for a reason, and looking back, I wish I could thank her over and over again for leading me to a few weeks of joy.

Now my baby girl is almost eight months old and growing like a weed. She's come a long way from looking like the alien baby we have in those 3D pictures! We are still learning how to be our own kind of normal and we're getting there. We learn something new almost every day and we're just as insanely in love with our little girl now as we were a year ago <3

A Sigh of Relief

Both surgeries were over and were successful. We can officially let out a sigh of relief. Her poor little belly is looking kind of funky at this point but it'll be completely worth it if it works.

Everything happened on schedule and as expected. About a half hour into the scheduled time, the anesthesiologist came out and told us they couldn't get an IV in so they had to put in a central line. We saw that coming because the poor kiddo just has horrible veins. Any she does have have been stuck so many times they're pretty much useless for IVs. About two hours later, the ever-awesome Dr. J came out to tell us it was complete and he was satisfied. He said her hernia was "pretty significant" in the left side, and the right side was very small but still a hernia. The vesicostomy is a little higher than I expected, but overall is pretty small. I can't wait until it heals up more though so it's not as yucky looking. It's pretty simple to take care of, we just stick a little blue thing (it kind of looks like a very small wine stopper) in twice a day to keep it open. It drains pee constantly though, so we are working on strategies to prevent all the leaking. She woke up soaked this morning, so double diaper it is tonight.
We are having some negative side effects right now though, but her doctor thinks it's just anesthesia  issues still. She hasn't been able to hold down much food today. She also hasn't gone #2 since yesterday afternoon. They were nice enough to call in a script for Zofran for her nausea and (eew) a suppository for her other unpleasant issue. I told my husband he had to do it because I wasn't cutting my nails! I really don't want to cut my nails, but truthfully I really don't want to be the one to give it to her more. Hopefully these little treatments will get her feeling better in no time!

We really hope this is the last surgery we have to go through in a very long time and that it keeps us out of the hospital. My little girl isn't so little anymore, she turned 7 months old last weekend and I feel like we've spent way too much time away from home! I am ready to get to our version of normal. 

If any of you have hints for how to keep the pee IN the diaper, please pretty please drop me a line. I want to order a belly band for her but the one place I know where to get one isn't taking orders until at least September 15th, and that's a long time.

As always, thanks to our awesome supporters who pray for us, think about us, and provide more help to us than we could ever imagine. We love you and I look forward to posting good news from here on out!

The Pain & The Stupidity

By pain, I mean a pain in my rear end, and by stupidity, I mean life in general.

We finally got released from the hospital again Wednesday. Of course they had to do it on a day my husband worked, forcing him to take another FMLA day. It's worth it to have our little one home, but it's annoying that we had Friday through Tuesday where one of us could have taken her home and they pick the one day we really couldn't. After getting the sleep study completed, we've learned two things... One is that her skin is soooo sensitve and now she has little tiny scabs where all the probes were. She looks like we commit some kind of cruel and unusual punishment.You can see all the tiny red marks in the picture. The other thing is, and this is the big one, she has.....(drum roll).......Breath holding spells. GASP!!! Oh wait, we knew that. And so did her pediatrician, and her neurosurgeon, and the PICU attending, and.... The list goes on and on. So you see where stupidity comes in to play. We wasted four and a half days waiting for a sleep study to show us this. Those results are just the sleep study side, we are waiting for neuro to look at the brain waves too, but I'm assuming since we haven't heard anything from them, there's no immediate danger.

It is unfortunate that we got the results back from the renal scan and it did show some scarring on her right kidney where her reflux is. We are already on a pretty rigorous cathing schedule, so the next step to protect her kidney is a vesicostomy. Obviously, I am not too thrilled about doing another surgery, nor do I want another ugly hole on my daughter, but her kidneys come first. This will create a hole near her pubic area that will allow urine to drain constantly, preventing anything from refluxing back into the kidney. We will no longer have to cath but will need to change her frequently and deal with pee being everywhere from what I read. Again, none to excited for this, but it has to happen.  Callie's hernia surgery is scheduled in a week, so we are hoping they can either do both surgeries that day or reschedule and do both surgeries another day.

In other news, we finally got Callista's nursing care put in place. We met the nurse who will be her primary yesterday and Callie seemed to get along with her well. She shared some smiles and even calmed down for her when she was crying. I am happy to know she is great friends with my brother's fiance as well. It's good to have some personal connections. While we are at work, we'll have someone at home caring for her, doing her cathing, wound site care, etc.

Perhaps now I'll have time to mow my lawn (sorry neighbors!). Most people have no idea how time consuming it is to have a kid in the hospital. It seems like maybe things should be less busy, since someone else is taking care of her, but the truth is, it just makes life more hectic. For us, I worked eight hours during the day, left work, drove to the hospital an hour and a half away, either spent the night or left late, drove an hour and a half back, rinse and repeat. Casey worked his twelve hour shifts and came to the hospital on every day he had off. One of us stayed with her at all times this stay, because we did not have a good experience nor much faith in the unit we were on. For example, one day I was there and they are supposed to be cathing her every four hours. She was due at 8a. I let her sleep a half hour more, and did it myself. No one came in to check on her, or to see if I did it until 9:45a. The poor kid was already admitted for a UTI but they'll let her sit there without getting cathed. Ugh.

Now I'm just hoping my little pumpkin is willing to take a nap today because I'm one exhausted mama!

Mommy Dragon

Mommy Dragon- That's me. I swear I have learned to shoot flames from my nose and mouth just like a dragon. Do you think there are pink dragons? Because that's what color I'd be.

We are back in the hospital again. Callista has ANOTHER urinary tract infection. Wednesday she developed a fever of 101 and Casey had to take her to the ER. It is the same bacteria from two UTI's ago. It bothers me that urology was not convinced we needed to change her prophylactic antibiotic, but to me this screams that we're not treating what we need to be treating. She was supposed to have a scan to check her kidneys on Friday but it didn't happen so now that is Monday.

Also while we are here, for some reason unbeknownst to me, her breath holding spells, which have never been an issue for the past six months, have now become a HUGE issue. Usually we can get someone to listen to us during hospital stays but this stay has been by far the worst. I believe they've already got an idea in their head and they refuse to let it go. And so begins the drama.... For the first time in Callista's life, a tracheostomy has been mentioned. More than once. With NO diagnosis that supports even getting one. This has been our worst fear out of everything. We got through the shunt, the decompression, the feeding tube, but a trach is where I draw the line.

Now don't get me wrong, if she was lacking oxygen all day, every day, it would be the thing to save her life. If she randomly stopped breathing and didn't give any warning signs, it would be the thing to save her life. But these breath holding spells happen only occasionally. It's when she is very pissed off and/or in pain. At home, we have them maybe once or twice a week. In the hospital she has them much more because she is: uncomfortable, unable to rest sufficiently, constantly being poked and prodded, and often without someone familiar to comfort her. Worse yet, she usually does not go into a breath holding spell if you pick her up and cuddle her. I've yet to see anyone here pick her up, let alone give her some lovin'. The concern for these just started a few days ago when the ENT came to scope and make sure everything in the back of her throat was still okay. They had a tube shoved down her nose and were moving it around. She got angry and cried. They continued. She held her breath and desated. And so begins the drama of the breath holding.

She now has to do a sleep study to check for central apnea (uh, she never does it in her sleep?). It was supposed to happen last night but did not. Now it's supposed to happen tonight but I won't hold my breath-no pun intended. The worst part of all this is that the doctors only want to jump immediately to talking trachs when we don't even have a diagnosis of anything! They've mentioned tracheomalacia, but that does not make complete sense either because she's had many scopes and a bronchoscopy and none of them showed any abnormalities. Also with thracheomalacia, many infants have random blue spells where they're calm and relaxed and still turn blue. Callie does not do this. You always know when it's coming. It is oreceded by banshee screams and is no surprise to anyone.

This morning started off on the wrong foot as well because an ENT that I am not familiar with came in and reiterated why we were doing the sleep study. I asked him politely what options were available if she does show apnea (her apnea monitor has not alarmed once since getting it two days ago). Immediately he says "trach trach trach trach trach". Or, that's all I heard anyway. I asked him why they would jump to such a drastic measure first and this is what angered me the most...."It will be easier to manage her airway if she ever has one of these spells and doesn't come out of it". Excuse me?! I may or may not have (ok, I did.....) raised my voice that I was not going to do something drastic and dangerous (respiratory infections are HUGELY possible with a trach) and life altering to my daughter for a "what-if".I wish I'd said this as well; If that were the case, every kid would have a trach because what if they stop breathing? And every kid needs to have a full body x-ray, full MRI, and blood work weekly because WHAT IF.... Get my point? After my little outburst he had the nerve to follow up with "It's just easier". Well buddy, we didn't ask for easy or convenient for YOU. We have to do what's best for HER. On top of all this, I really don't think her sleep study will show anything. But additional thoughts and prayers are always welcome and needed.

I'm going to try to keep my dragon reined in today, but with canceled/rescheduled tests and ignorant people, it's a hard task to manage. I really hate this place, it brings out the worst in me. I think you can guess which animal I relate to.

Freedom

What an exhausting week! Callista finally got her scope of her esophagus. It turns out her g-tube was too long and was blocking her pylorus, the opening to her intestines. The lining of the esophagus and stomach were raw and she had a tear in the bottom of her esophagus. Who would have guessed that after all this time it would be so easily fixed? They replaced her Mic-Key button with one that is a half centimeter shorter and upped her dose of Prilosec. Now we just have to give it time to heal. While we were there, we also got another swallow study and the speech therapist said it was okay to begin sampling pureed foods (yay!). It's still a no go for liquids, but at least we made some progress.

Again, I was NOT impressed by the PICU at all... What puts the icing on the cake is that somehow PICU shared with urology that Callie was uroseptic, meaning her urinary tract infection spread throughout her whole body (can we say deadly if not treated ASAP??!!). When the urology doctor came in the room, needless to say he was pleasantly surprised that he was looking at a happy, healthy baby.

We have to go back at the end of August for the hernia repair as well as a renal scan to make sure her kidneys aren't scarring from the reflux and pressure. It's just a precaution and I'm pretty sure it won't show anything since none of her infections have ever made it to the kidneys. Keep Callie in your thoughts as we hopefully get our last few issues out of the way!

I'd like to ask you to please think of our little friend Aiden, who also has spina bifida, as well. He will be going through his second decompression surgery Friday and would appreciate all your positive vibes his way! What a strong and handsome little boy. 

After all that, we ordered pizza. I'm eating and going to bed because this mama is exhausting!!

Zip, Nada, Zilch

***Update: We are in ICU now because she had an episode of bradycardia and is on a nasal cannula for now.

That's what we've accomplished since yesterday. We were supposed to have hernia surgery yesterday and instead we were forced to head to the emergency room at 5am. Callista started throwing up the brown vomit again at 3am and by 5am, it was every five to ten minutes or so. Believe it or not, they actually believed me when I said it wasn't the shunt and skipped the six hours of MRI and x-rays and went straight to GI. This is the third time we've been in for the same issue.

So of course we did not get to go through with the hernia surgery. I still feel like this is a huge coincidence that she was diagnosed with a hernia and then three days later vomits blood and they are unrelated. They assure me that while they can't rule it out, anatomically, it's next to impossible for that to be the cause. Today she was supposed to receive a short anesthesia for a scope to look at her esophagus and stomach but they postponed that since she was not back to baseline and they didn't feel comfortable putting her under.

To top off our awesome party, they informed us this morning that her urine culture grew something and she has another UTI. At this point, this is our fourth UTI in three months. I want to talk to urology. First, they told us it was because we weren't cathing enough, so we upped our cathing. Then she got another one and we were put on bactrim for prophylaxis. THEN we were told it's because of her kidney reflux and we were put on ditropan and cath every four hours. I am so excited to be enlightened as to why she has one now. 


And here I am, on my last week of summer break spending it in the hospital with Callista. She had to spend her half birthday (yes, six months old!!!! Gasp!) getting poked and prodded and miserable.

GI Visit

After a visit to the ER this week again for excessive vomiting, we finally got an appointment with a GI specialist. Of course we went through the "shunt" process: 3 x-rays, an MRI, and an unseen neuro consult. As always, a waste of time, even though I know it's to be on the safe side. The new doctor changed the way we feed her first to see if that helps. She also ordered a gastric emptying test to see whether it's just reflux, or if the stomach is the problem and reflux is the byproduct. They have to call us to schedule this. We are hoping something works because we'd like to avoid 24 hour feeds.

Wednesday is her hernia surgery. Although she has to have anesthesia, it should be a quick and easy procedure. As always, the anesthesia part makes me very nervous but it's something we have to do! I'll update after we're done. 

Time

"Time heals all wounds". But does it really? Does a mother completely heal after the loss of her child? Does a wife completely heal after the loss of her husband? Do parents like me ever completely heal after life doesn't turn out anywhere near what you thought it would? I don't think so. I think the wound is a giant scar whether hypothetical or real. It's healed, but it's there every day. You see it every time you look in the mirror, every time you get dressed in the morning, every time you see someone with "your ideal". I see it in my scar, I see it in my daughter's scar. The scars are not ugly, they are a sign of bravery, a sign of taking the path least taken, a sign of the long journey ahead of us. But it is a constant reminder that our lives are far from normal. I think to myself, am I ever going to get over what has happened to us? And sometimes I think yes. Then something happens to bring it all back. Sometimes it's something big, like a surgery or hospitalization. But sometimes it's something so small as seeing a teenager with a healthy, happy baby. Not that I think ANYONE deserves something to be wrong with their child, because in my world, all children would be leading perfect, full, healthy lives for a long, long time. But my selfish mind runs over and over, why does this person who isn't even grown up, isn't even ready for a child graced with such a "normal" baby, and here we are making trips to the doctors every week, staying in the hospital frequently, about to put our child through her fifth surgery, and we were in a good place, we were ready, we deserved happiness in my mind. So no, I don't think time heals any or all wounds, they just hide them underneath stronger skin and you hope and pray it never comes open again.

With that being said, my daughter has made me such a strong person, and she inspires me to be happy no matter what. And I am. When she smiles, the room and my world light up. Having her has also toughened me up in a good way. I no longer put up with people who don't have my or Callista's best interests in mind, whether it be doctors or otherwise. I am a little quicker to let my temper get the best of me, but at the same time, before Callie, I rarely lost my temper or had a confrontation. And I'll admit that a temper isn't something to be proud of, it does feel nice to say what you need to say instead of tiptoeing around. It's almost given me freedom I didn't have before to shed the facade and truly be me. It's nice to be able to stand up for my daughter, myself, my family.

I also take our situation as an opportunity to educate. I was asked by someone if it was okay to ask questions about Callie. YES! And in fact I encourage it. There is so much misinformation out there and parents of SB children have the responsibility to get the correct info out there. If I tell one person, hopefully they make a connection with another, and so on. Instead of misunderstanding what SB is, we can make sure everyone knows what our kids are really like.

I also like to advocate for fetal surgery. I take every chance I get to talk to medical professionals here to get the word out. It's a foreign concept to most here, or they feel they have an understanding of it, but in reality they do not. It's so interesting to see exactly how much people (nurses, doctors, etc) want to hear about it. It's a hard decision to make, and it's definitely not for everyone, but it was definitely the right choice for us. I was meant to be the person to enlighten.

I guess I was feeling sentimental today or something, but perhaps that's because the tiniest love of my life has been smiling all day even through her reflux issues. Again, teaching me to smile and be strong (although I can't scream whenever it doesn't work ;))

Home (3rd time's a charm!)

We are home! They surprised us Sunday afternoon by letting us bring Callista home and finish raising her feeds at home. We were so happy, but at the same time, it was so crazy because we had no power! It went out Friday night and she was in the hospital so we just stayed in the dark. But Sunday was a different story because apparently batteries on feeding pumps don't last forever! Lucky me my friend A- graciously allowed us to stay at her house. Yesterday afternoon it came back on so we headed home for real. She's still on her antibiotics for the UTI until Saturday night, and we started the ditropan for her bladder this morning. Let's pray we don't see the side effects of this drug. Today also begins cathing every four hours. So far, so good!

Now that I am home for summer break (spending time in the hospital is not really what I thought I'd be doing for my first week of vacation!) it's time to spend LOTS of time with my baby girl! I'm going to think of this as a late maternity leave since I got ripped off for my real one.

 It's also time to get crafty!! Please add my new craft blog to your list: Pinterest Princess Kimmy. I'll add my first pinterest project this afternoon!

Love you all and thanks again for your support during Callista's journey. We truly appreciate all the thoughts and prayers we receive in times of health and times of need <3

Back @ NCH

Annnnnnnnd we're back! We had a trip to the ER Saturday morning because Callista was throwing up what looked like old blood. I also got a call during this visit from urology saying she had another UTI and we got antibiotics for that. After a six hour visit, they sent us home saying it was not blood and they could not find anything wrong. At 1:00am Sunday we made another ER trip because every 10-20 minutes, she continued to throw up. After another six hour stay, they informed us it was blood (same stuff as before magically turns into blood? Or perhaps someone screwed up the first test!). We were admitted to the hospital Sunday around 7:00am. After numerous tests, they cannot find anything that would be causing the blood, and they basically blame everything on her UTI. I get that UTIs can cause vomiting, but this isn't her first one and it has never been a symptom of hers. I can't help feeling like we are missing something but since she is no longer puking the black stuff, they've dismissed it. They started her on small bits of pedialyte and she has not been able to handle more than 5ml per hour. They told us yesterday they would not rush into anything like a GJ tube, but this morning were seriously pressuring me. I talked them into starting formula instead of pedialyte because her formula is thicker and I'm hoping it's what she needs to keep everything down.

A GJ tube will go into her jejunum which is the top of her intestines. This would bypass her stomach but still allow her to get all the nutrition. The major down side to this is that she would be on her feeding pump 24 hours a day, 7 days a week. I can't make it clear enough how NOT interesting I am in that. So they've given her all day today to tolerate food and after that I'll be forced to choose a GJ tube. They act like it's no big deal, but it certainly is to me! We struggle with mobility already, so what's a tube attached to her all day every day going to do for her? Let's hope and pray really hard that when they start the formula she can handle it. I know she needs nutrition and I'll do what is best, but I do think she deserves a chance before we jump into this.

Of course they are also making a big deal about her breath holding spells as well. I realize they are scary, but she has done this since she was born. She gets mad, she holds her breath, she turns blue, she breaths again, and voila it is done. It looks frightening yes, and I was scared out of my mind the first few times it happened, but we've seen it enough now to not panic. But apparently the nurse on night shift did panic and a doctor ended up ordering an apnea monitor (she does not have apnea....). After speaking with the team today, I got them to disregard that monitor. From what I read on the internet, although it's not super common, other kids have these spells, so why does everyone act like this is some strange occurrence? Ugh. Of course this all has to happen the one night I do not spend the night with her.

Other than gagging on everything (and the occasional tantrum), she is in a very good mood and looks healthy. I hope everything gets figured out soon so we can go back home.

Urodynamics Test

The test today did not have the results we hoped for. We now have to cath every four hours when she is awake. I am glad she is on her prophylactic antibiotic because of her history with UTIs. Although it's going to take more time and put her through more nonsense than a poor thing should have to go through, one positive we can say is that hopefully it helps us qualify for the medicaid waiver since she has even more medical need for qualified care now. They are also starting her on Ditropan because of her bladder spasms. This medication is the reason for the increase in cathing. I understand that they want to protect her kidneys, those are pretty darn important, but the side effects really have me concerned. The first is a dry mouth, which I guess if it dries it up some, that wouldn't hurt since she drools SO much, but if it's too dry, that is very scary since she doesn't even drink anything by mouth right now. Overheating is another side effect, just in time for toasty summer. Of course there's also the side effect of her maybe not voiding anything on her own, which right now she can void her entire bladder on her own. Then there is the whole poop issue. We've never had the common SB issue of constipation, but this medication causes it in many of the children I've read about. It seems like we are solving one problem but creating several more.

To end on a happy note, Callista has realized she has a tongue. She spent most of today sticking out and wiggling her tongue at us! :)

Catch Up

Apparently work and having a baby really hinder the blogging process. Today was my last day of work and now we're on summer break until August. I'm looking forward to spending a whole lot of time with Callista and doing a mini blog about pinterest projects. I love crafting and have put it on hold for so long due to all of our hectic issues, and this is going to broaden my skills (hopefully?).

There's a lot going on lately. We still haven't had our OT evaluation yet but we did have our first PT session. Callie took it much better than I anticipated and there were no breath holding incidents. Tummy time was excellent for the first practice, but after the therapist rolled her over for a break, apparently Callie thought she was done. Much crying ensued for the next three repetitions.

She got her five month shots last week, and she did well. I guess it's one advantage to decreased sensation in her legs, poor thing doesn't have to suffer through the pain of shots. Her leg swelled up and so did the left side of her lady parts. Even after the swelling in the leg went down, the other piece still looked bad. We watched it over the weekend and thought it was getting better but Tuesday it appeared exactly the same as it did over the weekend. After a trip to our pediatrician, we were sent to Children's Hospital ER because he suspected Callista had a hernia. After a 6 hour ER trip, an ultrasound, and three different doctors saying the exact same thing (waste of time...) she does in fact have a hernia in her groin. It was just fluid and not an emergency surgery thing, so now we have an appointment with a surgeon to schedule an outpatient surgery for the hernia. This will be surgery #5 for our little girl, hopefully the last if we're lucky! Surprisingly, it hasn't been affecting her at all, she's all smiles and laughs lately. I'm getting excited for her first "words" now, because she has started mouthing things you say to her. She still hasn't gotten the hang of actually making any sounds with it though! She's got her diva attitude moments, but she's an excellent baby!

Her urodynamics test is coming up. Hopefully it shows good things. We are cathing twice a day currently, I'd hate to have to increase it. I don't want to teach other people how to do it for one thing. And for another, the poor kid already has such an abnormal amount of crap done to her, I really don't want to add anything else. I am hopeful because she does void on her own a lot. Just pray for sticking to twice a day!

In other news, we got a bill for $400,000 from Children's, because the insurance has had it stuck in "high claims review" for too long. Yeah, that one isn't getting paid. We're still waiting on the results of our medicaid waiver as well. We're definitely praying that goes through so Callie can have a nurse come to the house to care for her while we are working or gone. Especially if we have to increase cathing.

eight months?!

Such a short update, but...

I cannot believe it's been EIGHT months since we first heard the devastating words "Spina Bifida". Eight months seems like such a long time ago. I look back on those first few days, when we had no hope, and now I look at her and think "Boy was I wrong". The fetal surgery was such a blessing to us, as her PT evaluation was an overall positive one. I love hearing the words "movement" and "looks promising", it's not often we hear those positive aspects. I'm just in awe of how brilliant my little girl is and how at 4 months old she's already saying screw you SB, I'm not having any of this crap.

It'll be seven months on Saturday since we had that life changing surgery. For the few people in my life who apparently don't understand what my family went through, and is still going through, I don't care what you say or do to me, I'm so happy I did it. She is the most important thing in the world to me and I'll do anything to protect her and make her life better. Just know she is does, and always will, come first.

Eight months... we never thought we'd be in this good spot. New mommies and daddies who may be struggling right now with your diagnosis, hang in there. Because our little one has been the perfect addition to our family, perfect in all her imperfections. Seriously, hang on, it does get better <3

The Button!

We had an appointment with her GI surgeon today and I was successful in convincing him that we NEEDED to switch from the g-tube to the mic-key button. We've had it for less than a day and I love that thing! It's so much smaller than the g-tube and she can finally wear normal clothes again. In fact, she's wearing a onesie now! Of course we had kind of a long day so I've got a cranky baby girl right now. As soon as she is in a better mood, we're getting some TUMMY TIME! Yay!

Although we've been to the doctors at least once a week and even had a trip to the ER, everything is going smoothly. She's growing, 12 pounds 3 ounces today! I cannot wait for her to begin PT and OT, it's time to crack down on this and kick some SB butt. We always have scheduling conflicts (everyone thinks we don't need to work or something?) so it's hard to squeeze everything in, but we're trying hard!

I thought I had more than a second to write a post, but of course the princess decides she needs to be held now. LOL. More updates next week after SB clinic :)

Not really related

I just have to post this here because I know so many people have no clue this is out there. You earn SO much money back. It's especially great for things you already buy (diapers anyone?). Go sign up and use it! It's so easy. Instead of going directly to a website, you go through ebates and click there. Then you earn a percentage back from your purchase. It's nice to get a check back every three months :)

http://www.ebates.com/rf.do?referrerid=LecwM8MSy6WXNfqdpLeeWA%3D%3D

Appointment. Appointment. Appointment.

Tomorrow begins our long line of appointments. It's been a good few weeks being able to be home every now and then, but now we get into the seriousness of what spina bifida is. We have an appointment tomorrow afternoon at Starlight to get her evaluation done there so she can get PT and OT at home. On the 29th, we go in for her g-tube, and hopefully they'll switch it to a button. On the 5th, she has her first PT evaluation at COOR and on the 7th she has her OT evaluation at COOR. On the 8th we have a LONG day at Children's. Myelo clinic, MRI, ENT check up, and neonatal clinic. On the 15th she has her next set of shots. On the 21st she goes in for a urodynamics test. I have no doubt that more appointments will be squeezed in there somewhere. I'm hoping whoever does the evaluations has a positive outlook. Too many times everyone wants to tell us what she can't do, what she won't do, etc. Instead, tell me how you're going to help her and what we can do at home. That's all I ask, a little bit of optimism.

On the home front, some tough decisions have to be made. I've been put into a position I don't want to be in, and I am not allowed to talk about details. But please pray that I am guided to making the right choices. Throughout everything our family has been through, things just keep stacking up, even now. I have to make the choice that's right for my family, but right now I don't know what that is... I can do what is financially right, or I can do what is emotionally right. 

Overall, our two weeks home have been wonderful. It's so nice to wake up and grab my little girl out of her crib and take care of her. I'm not saying I enjoy those 3am feedings, but I enjoy her ;) I'll update soon after our evals and let everyone know the results. <3

Happy Mother's Day

Happy mother's day to all my mommy friends, and of course, my own mother and mother in law! This mother's day means so much to me not only because it's my very first, but because we worked so hard to get here and when I look at her, I know I was meant to be her mother. Someone posted this in a fetal surgery support group I am a part of, and I wanted to share. I don't necessarily believe God did this to my precious Callista, but this does bring a tear to your eye because of the truth that's in it.

Finally He passes a name to an angel and smiles. "Give her a disabled child".
The angel is curious. "Why this one God? She's so happy"
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."
"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness"
The angel gasps - "Selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side"
"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice" 

While our situation is not ideal, it has been ours,  and we will grow with it. 

Stupid feedings

I know babies have to eat. But feedings have been quite an obsession with Callie's doctors. She doesn't eat enough, doesn't gain enough, the calories get adjusted, the formula gets changed, etc. Now that she has the g tube, she's been putting on weight like crazy. They're still saying we need to go up on feeds. But with her reflux being as severe as it is, her poor little tummy just can't handle it. We tried going from 70ml to 75ml and all it did was make her throw up. And ever since then she hasn't been happy with feedings. We dropped her back down again, and she seemed better, but her stomach has been bothering her ever since. She had a GI doctor visit scheduled for Monday which I was anxious for, just to make sure everything was still in the right place and working okay, but they rescheduled it to the 29th. I think part of it is the prilosec not matching her new heavier weight, but we need to ask her pediatrician what we should be giving her. Poor little thing just doesn't feel as good as she should. She's gaining weight so leave her alone please...

I am counting down the days to summer break from work. I know I just got back, but I feel like I did not get that adjustment time that normal mommies get. They have six weeks or more home with their babies, and my weeks were spent driving to and from the hospital. So we had to jump right in to balancing work and baby, and it's been interesting. We love having her home though. I try not to be too paranoid at every little thing that happens, but it's hard. In the back of my mind, I always think about the fact that we could have to go back to the hospital. It's bad juju to think about it all the time, but sometimes it just creeps up on you. Lack of rest probably contributes to this too, I'd guess.

Not a very interesting post this week, but will have more updates as our appointments start bombarding us within the next few weeks. Ugh.

Home Again!

After two long months, we can finally say we are home again. We got to bring Miss Callie home on Wednesday afternoon. She has been keeping us pretty busy. Overall she's been a really pleasant child to have home. She is a happy baby and satisfied just to be cuddled and stare at your face. Every day we see a little bit of a new development for her. Yesterday she deliberately reached out to bat one of her toys which is huge progress for her. She has gotten so much better at tracking faces and objects. My favorite thing is in the middle of the night during her sleep, she will randomly burst out laughing. It's always a surprise and always makes us laugh (quietly of course). At her check up she weighed 11 pounds. Her newborn clothes are officially off limits now, the little chunker. I need to find the time to go through her clothes and find the things she actually can wear. The g-tube leaves us with very few options other than loose dresses or t-shirts and pants. We have a hundred onesies that I'm hoping she will still fit into when she gets her mic-key button. Her follow up appointment is next week so maybe they'll tell us when we can change during that visit.

The new Callie rule in the house is that Callie sleeps while you are awake but as soon as you are asleep, she is magically wide awake. The sleep deprivation is worth it just to have her home. And look at the bright side, I caught up on a lot of TV over the last few nights! Thank goodness I am still working part time, I'm basically a zombie. We were glad she got to come home earlier than expected but I do have to admit it would've been handy to have the nurse at night. We are still working on getting skilled nursing during the day through the waiver but I guess that can take a long time.

Other than that, we've been enjoying our time at home with Callista. This week starts the bombardment of everyone and their brother needing a piece of us. Wish us luck and sanity!

Doing Well

We've been back in the hospital for ten weeks now. Our little one turned three months old on the 25th. It's hard to believe we've been driving an hour and a half to and from the hospital every day for almost three months. When I think about it, I'm sad our little girl has spent 1/4 of her first year here in the hospital. But I think we are seeing a light at the end of the tunnel, they've been talking about sending us home a lot lately. One person told us we could be out as early as Friday. I am so hoping this is the case.

She's been doing so well that we may not have to wait on home nursing because she doesn't need it. We haven't been using wall suction since Wednesday and so far she hasn't needed it since then. They first told me she wouldn't go home with anything... I wasn't going home without a monitor for her oxygen level at night, so I bothered them until they agreed to it. Apparently you can get your way if you tell them you feel unsafe going home. Which I did feel unsafe. Once you see your child choke and turn blue for no apparent reason, that's enough to make you panic for the rest of your life. And since it was such a sudden onset there's no way they were sending me home without a monitor, or I'd have to become one of those super insomniacs that don't even miss sleeping because I'd have to watch her every minute of every day. We really want to come home but I think both of us are trying not to get our hopes up because every time we do, we get a setback.

In more good news, the ENT doctor came by and did another scope of her throat. He said she has obvious improvement in sensation and swallowing skills. She still has some numb spots but the muscles that help her to not choke are functioning and close when he touches them with the scope. Of course only time will tell exactly how far her recovery will go, but based on these results, she gets to try her first bottle on Monday. She hasn't had a bottle since February 26th... If it goes well, we will get to feed her anything she wants by mouth and put the rest through her g-tube.

The g-tube and I still have a love-hate relationship. It's helping her to come home, and definitely helping her gain the weight she needs (we're up to 10.5 pounds now!). But it's huge, and bulky, and yes it's still ugly. Our six week check up cannot come soon enough so hopefully we can switch to a button instead of the giant tube that just hangs there. I've been working on learning how to take care of it and it doesn't seem that hard. I've done the dressing changes the past couple of days on my own. I guess the only thing left to really learn about it is what do to if it comes out.

I go back to work tomorrow. Part of me is sad, because I will no longer get to spend all day with Callista and I'm going to miss OT and PT and for the most part the doctors every day. I'll have to get second hand information which isn't really the best route. Plus, I'll still be driving back and forth, I'll just be working before hand. I'm going to try VERY hard not to be a cranky person because of this (and hey, hopefully she will be coming home!). At least they did agree to let me come back part time. Once she is home and settled in I'll be going back full time, but this gives me some much needed time to be able to travel to the hospital and back and still keep half of my sanity. Part of me is glad to be going back to work. I'm tired of going without. I know that makes me sound like a spoiled brat, but that's not what I mean by it at all. I guess I'm just tired of having to plan out everything to the dollar so I can be sure we can pay our bills. I'm tired of not being able to go have drinks with the girls or whatever because I can't justify spending $6 on a drink. I also want to get back to doing my own job. I appreciate everyone trying to pitch in and keep it semi caught up, but wow I'll be glad to be back in control of my areas. I'm nervous about what kind of state it'll be in though lol. And I am nervous about going back because people will ask me questions... If I don't think about it, I can get through my days quite nicely, but talking about it is different. I'd like to pretend it's not there, but I guess I can't wear a sign around my neck that says "Please don't make me talk about it".

So here we go, trying to get back to a somewhat normal life. I tell myself this IS our normal now, and someday I think it will feel that way. We will fake it until we make it :)

Beautiful Disaster

Before my update on Callie, I'd like to ask everyone to keep a family in their prayers... Today my heart is broken for a friend of mine. We've never met. But her little girl has had more influence on me and many others in her short life than anyone else I know, and for that, we give thanks. This mommy and baby had the same surgery as we did, but her little one ended up being born at 25 weeks. She went against all the odds and fought so hard. She defied everything her doctors said. Again, this newborn little lady showed me that anything is possible. It was such sad news to hear this morning that she had given in to her respiratory complications and went to dance in heaven. So although I don't know her mommy personally, I love her and her family so much, and I know that I and all the other mothers and fathers on the fetal surgery facebook thank you for sharing such an awesome inspirational human being with us. Please know that you've got more prayers coming your way than ever before. Be at peace little angel.


Now...

I am a bad mom... Actually I know I'm a good mom, but I feel like a bad one today. Callista had her g-tube surgery today. And I hate it... It's ugly. It's much larger than the example they showed me. My baby's poor little belly has a gigantic tube sticking out of it. And they told me it was easily hidden under clothes. That's a lie unless something massive changes. I know, it's shallow, but this is my pretty baby.. And this is not pretty. It just makes me sad because she's been through more than enough already. After six weeks they'll consider putting a "button" in place of the tube. Maybe then I'll feel better about it, but right now I just don't even want to look at it. So yes, I feel like a bad mom.

The tube will be worth it though if we get to come home. It'll be eight weeks Sunday. And that's eight weeks too long. We've been told that as long as she's medically able, as soon as our medicaid waiver is in place and she handles the g-tube well, we will get to come home. The bad news about all this is that a medicaid waiver could take two weeks... or six weeks.. or however long it takes. So they've prepped us by the fact that she may be medically ready to go home long before she is actually allowed to go home. The medicaid waiver would give us a nurse to stay with her during the evening so we can sleep while they watch the monitor to make sure she doesn't need suctioned. Otherwise you know I'd be there staring at her, afraid to go to sleep.

One of these days I'll find the time or the energy or both to finish her room and give the upstairs a thorough cleaning. Until then, we just keep the door closed so I don't have to look at it! There is a crib in there, and it is painted, but wow it's a disaster. That is life, a beautiful disaster.  But we're making it.

Getting Somewhere and Nowhere

Every day we feel like we're making progress and like we are getting somewhere. But then when we talk to the doctors in charge of her case, we're not any closer to coming home. I was really hoping to have her home soon since I'm out of favors at work and out of money as well. My return to work date is now April 30th. It's going to kill me to go back, but there's no other options at this point. I'm going to request part time work if she's still in the hospital, hopefully God will grace me with that opportunity. It'd be even better if she were home with us by then, but it doesn't seem like that's going to happen.

Ever since the second UTI, she's had a slow recovery. She was extremely cranky this past weekend (we suspect it was due to her reflux combined with the UTI). Over the past few days she's become more of herself again. She was very happy yesterday and today, which makes me a happy mommy as well. This afternoon she had some pretty noisy breathing and they were concerned it was pneumonia so they did a chest x-ray and it came back clean. They did another urine and blood culture (I think this is the third one in a week?) because she had a low grade temp (99.4). Those have shown nothing ever since she was diagnosed with the UTI from the first one. Part of me is glad they're watching her closely, but part of me also thinks they're putting way to much weight onto something like a temperature that wouldn't be anything if we were home and not being watched 24 hours a day. And if it is something, then they need to look elsewhere besides blood and urine cultures because those obviously aren't yielding any information for them.

It's 7 weeks back in the hospital tomorrow. Please pray they get this figured out soon, because I can't take it there anymore. We're ready to have a healthy baby at home and get our lives as a family started.

Dreams

I'm already having a down day and my day hasn't even started. I had a dream that we got to take our little girl home and we loaded her up in the car and she was happy and healthy and holding her head up on her own. And then I realized it wasn't our baby and we had to give her back and go back to the hospital and be with our baby.

No one told me how hard it would be to see all the healthy babies, the normal pregnancies, and most recently, all the other babies who get to go home. The unit we're in is considered a step down unit. Most of the babies there get to go home pretty quickly. Every day I see people come in and every day I see some leave. They smile at us as they walk by and I smile back because I'm so happy for them. But at the same time I count the days, weeks, and now months that we've been there and I feel like that will never be me. That will never be us. And there are so many people around me having babies or are pregnant. I am so happy for them, I can't even tell you how happy. But again on the inside I'm so broken because of what happened to us. I'm so glad their babies are healthy because I never want anyone to feel the way I do. I just wish that could be me...

I'm getting ready to head to the hospital, again. My baby girl turned 11 weeks old yesterday. She's getting so big now. And even though I'm there every day, I feel like I am missing it. I'm missing everything.

Slowly But Surely

You know it's time for an update when I have to read my last update just to see what I've missed!

Callista has been doing extremely well after her decompression surgery. Overall she seems like she just feels better. We're still working on swallowing and of course that will lead to working on eating, but I think we're getting there. We were scared that we'd have a set back because she has ANOTHER freaking UTI. But she's handling it like a champ. She's been on antibiotics for a few days now. She's a little cranky but at least is hasn't put us back any further. The biggest news to report is that yesterday Callista actually sucked on her binkie repeatedly... This is the first time she's done it in about 6 weeks. And the best part is that she did it in front of the nurse so there's documented proof that it happened. My little one is famous for doing NOTHING for her therapists and then as soon as they walk out of the room, she does exactly what they wanted her to do.

They informed us about a week ago that they'd give her two weeks to eat on her own and then we'd revisit the G tube idea. We were okay with that since we certainly don't want to spend our whole lives in the NICU waiting on her to eat by mouth. Two weeks seemed like a good timeline. Then today they tried to tell us they were consulting the feeding specialists because her two weeks were up. Of course, I was like what the hell? We were told two weeks of therapy, not two weeks after surgery. So we vetoed that pretty quickly and now she has all of next week to get OT and improve. There's still a huge chance we end up with a G tube but I'm going to do everything I can for her before I agree to it, including giving the poor kid a chance! We feel very much pressured into just getting the tube, which I'm not to thrilled about. And I'm sure they are not too thrilled about the fact that I'm very assertive about my parental rights lol. The longer we spend in there, the less patience I have with them trying to tell me what THEY think.

Since she is handling her secretions well now (little to no suctioning, woo!!!) we've been trying to lay her on her back with her head midline and she wants none of that. Even after explaining to her that she will have a cone head, she still fights every minute of it ;) We've been trying to get tummy time in (hard to do at the hospital) and she seems to be enjoying it MUCH more now than when we tried at home. She's still not strong enough to hold up her heavy head but her neck muscles are getting stronger daily. Sometimes I feel down about the fact that we're not meeting milestones like a "normal" baby, but then I think about it and realize it's not that she won't meet them, it's just that she'll meet them on her own schedule. We've got a great PT and OT while she's hospitalized and I'm so thankful for that.

My work has also struck a deal with me that gets me a few more weeks of leave. I now have to go back on the 30th instead of the 16th which is a huge stress relief for me. I swear I was getting an ulcer just thinking about it. So for now that worry is on the back burner. I hope and pray we've got things figured out before then!!

And to end on an extremely positive note, Callie has really started to blossom personality-wise. She smiles more often and lets out the most adorable giggles, especially when she's sleeping. She's discovered that she LOVES Grandpa K's hat and finds it immensely entertaining to stare at. She has started feeling things and likes the texture of wash cloths. She has discovered that she can flail her arms and legs to deter you if she feels you're doing something to her she does not like (eg: dressing her, changing her diaper, or fixing her blanket).  And she's still got her attitude problem of holding her breath when she gets incredibly angry or hurt (IV team hates that!). That's about the only thing she does that is SO NOT CUTE. Everything else is just amazingly adorable ;)

Seriously?

Edit::::
Moments after posting this, I read some humbling, terrible news from a friend of mine whose daughter is struggling. Please say a prayer that this family finds comfort and a miracle in their time of need. My problems below are insignificant and this family has already been through so much. They deserve a piece of happiness.

Callista had her decompression surgery Tuesday afternoon. They did a bronchoscopy before the actual surgery while she was under to make sure there were no abnormalities. It was completely normal. The surgery was estimated to last around 4 hours but we were closer to six or seven by the time they completed. The neurosurgeon feels like he was successful in decompressing as much as he wanted to and is hopeful that it fixes her swallowing/sensation issues. He said it was pretty squished in there, so we're optimistic about the results. I was a nervous wreck of course and cried my eyes out when they took her away from me. But she was giggling and smiling the entire time before they took her, so I knew that was a sign we were doing the right thing.Right now she is still intubated and on pain meds but she was waking up a little this evening before we headed home. They are hoping to have her off the vent tomorrow.

Yesterday was a pretty miserable day for Casey and I. We had gotten so used to having a room with some light and privacy. We've now been moved to another NICU where there's no windows in sight and instead of rooms there are just curtains. You hear every beep, cry, and conversation in the entire unit. Our curtain doesn't even close all the way so there's absolutely no privacy for us. With her vent machine in there, there's barely any room for the two of us to be in there, let alone if someone comes to visit. My favorite part is that staff just randomly walk into your "room" and start chatting with each other as if you're not even there... I don't mind idle chatter but seriously, you have to squeeze into our little space to do it? So I was a little (okay, a LOT) grumpy yesterday just for being forced to sit in a tiny, dark space for hours on end listening to the baby next to us scream his head off the entire time. Since Callie was still pretty drugged up we decided to leave a bit early. On the way home, I asked Casey if he'd like to go see The Hunger Games with me since we haven't had a moment to ourselves in so long. We went to the movies and about a half hour into it the electricity went out. Once they got everything up and running again, our movie played for about 15 minutes with no sound at a pretty crucial part. Since I read the books I knew what was happening, but everyone who didn't was probably at a complete loss. They got the sound back on again but didn't skip back so we could see the part we missed (ugh!). They "made up for it" by handing out movie passes at the end of the movie (movie pass = ticket to movies that doesn't work for anything new/good/you want to see). We headed home and about five minutes down the road, my car breaks down. Just died. No warning. We had to get towed to my dad's garage and ended up getting home a little after midnight. Fun times...

I feel like everything is just kicking the crap out of me right now. If it's karma trying to teach me a lesson, fine. But at least let me know what the lesson is that I'm supposed to be learning. I think we deserve something good to happen to us now after everything we've been to but it just keeps piling on. Time is ticking for me now, only two more weeks left until I have to return to work and no sign of home in sight. Things need to turn around for us really fast now.

I'll update on how she does off the vent later (she was already quite ticked this afternoon about it all). Thanks for following our story,over 7000 hits now, it's crazy!!! We love you all and appreciate your prayers and support so much.

Terrified.

Terrified is what I am. Callista will be undergoing a decompression surgery tomorrow at noon. It's a fairly common procedure for children with spina bifida, but not usually on babies as young as Callie. I had a good talk with her neurosurgeon this morning and he's confident in the procedure, but I'm still a nervous wreck. I'd feel better if there were more parents who had to do this so young, but after posting in forums, I only found two other parents who had to go through this around the same age, and these posts were old.

I spent all day just cuddling with her. The irrational part of me spent the day crying, wondering if this would be one of the last times I'd hold her, the last time I'd see her smile, the last time I'd hear her laugh. I know this isn't the way I should be thinking, and I'm trying so hard not to. Again, this is not the first child to have this surgery nor will she be the last. I do have faith that things will turn out just fine, and I truly hope this will solve her breathing problems and we can head towards going home. But even though I know these thoughts are irrational, it won't stop me from freaking out tomorrow when they take her off to the OR...

Please remember us in your prayers tomorrow and following surgery for a speedy recovery. We appreciate it so much and they're very much needed.

One thing after another

Callista has been doing so well over the last week. She's been more awake and alert.  She still wasn't swallowing until yesterday. When I was holding her yesterday I actually heard her swallow twice. We really thought we were making progress. Until today of course, because every time we think we're going forward, we go backward. She had a swallow test today and while she did swallow, they told us her swallows did not align. She did not have any sucking reflex. They said they were not officially done with the study for another two days but their recommendations at this time were to continue OT with occupational therapy and to put in a gastric feeding tube.

I'm so frustrated right now. This is just one more thing to add to our long list of things. I've had it. How am I supposed to keep my sanity in all this? I think things are happening just to piss with me now. How about the fact that we got stuck at the hospital last night because of tornado warnings? Again, one more thing. And I was so frustrated today because the doctor in charge of the study brought up my folic acid intake not once but twice. The first time, I assumed it was just a question. He asked me if I was taking my folic acid before I got pregnant. I informed him I was on prenatal vitamins for years before I became pregnant. Not more than ten minutes later and he asked me again if I was taking ENOUGH folic acid before I got pregnant. Uh, did we not just discuss this? And then randomly after that he continued to go on about how he doesn't usually see spina bifida in children when the mom took her folic acid. Sorry buddy, let me introduce you to all the women I've met online who are in the same position I am. We took our folic acid and it still happened. I was also disappointed because this guy is supposed to be awesome and the only thing we've jumped to is a tube in her stomach.

I want to talk to our neurosurgeon first before we move forward with anything. I do not want her to go through this surgery as a temporary fix and then have to still do the decompression surgery to fix the actual problem. I just have a hard time thinking after how many weeks we had of swallowing just fine and then all the sudden we have no other option? I'd rather hear what neuro has to say.

Another frustration I have right now is that every new person who sees her wants to "diagnose" her with something new. Literally, every time... I've had things brought up about her eyes, her legs, her head movement, and her thumb placement. Seriously guys, we have enough to worry about, lay off. I will say I'm so happy to have been moved from the PICU to the NICU. They know a heck of a lot more about babies. And we've had some pretty great nurses the majority of the time. I do worry though that she's not getting held and cuddled when I'm not there because she is fed through a tube and not by bottle. Which leads me to the fact that the day I have to go back to work is looming so close to me and the thought of it is making me sick. The thought of having to go about my job and be productive and be myself is just sickening to me. I can't do it. I just don't know what to do. I didn't ask to have this happen to me and yet I feel like I'm getting punished in every which way possible.


As a disclaimer to any future SB mommy... These things don't happen to pretty much anyone else... I wouldn't trade my daughter for anything, but damn it's hard. Plus I came home to a cabinet full of little brown bugs last week and Mike died on Desperate Housewives. How much worse can it get?!

Beep. Beep.

Beeeeeeeep beeeeeeep beeeeeeep! Oh, wait, sorry. I guess I got caught up in all the ambiance here at the hospital. I swear I'm going to be hearing beeping for the rest of my life, even when we get home. One big difference between the NICU and the PICU is that NICU nurses stay close by and the beeps are silenced within a minute or less. PICU nurses disappear for hours on end, and the beeping is generally ignored. For instance, about 30 minutes ago I saw Callie's nurse for the first time in about three hours. She said "Oh her feeding pump is almost empty, I'll go get some milk ready... And now we're going on 10 minutes of the pump beeping profusely saying it's empty and there's no one in sight. So yeah, the beeping goes on, and on, and on, and on. Aren't I crazy enough as it is? No need to be driven there :) On top of that, I swear its a hundred degrees in here!

I told you in the last post I hoped for some good news to report, and we have some! Callista was taken off the ventilator Thursday afternoon and instead of going to the cPap, she did so well on her own that they switched her over to high flow oxygen instead. Once she had the tube out, the poor thing slept all day trying to recover. Friday she was an entirely different baby. She was opening her eyes more, chattering a little, and trying to cough on her own. She hasn't been swallowing or coughing up anything on her own since we got here. By Saturday they took her off high flow oxygen and now she's just on regular oxygen. So many steps in the right direction, it's kind of scary. Today she's been wide awake and "talking" to everyone. Grandpa K got to hold her today and she was in love! (I think Grandpa might be as well...) She stared and stared at him lol. So in a matter of a week we went from bad to worse to awesome. What the heck is going on here??

Our neurosurgeon is being very cautious right now, just waiting to see if we do in fact need to do a decompression surgery. At this point, she still doesn't swallow on her own and she does need oxygen to keep her stats up so we're still a far way away from coming home. And we're still in the realm of probably having to do the surgery. But the doctor knows what he's doing and we trust him. So we'll continue to wait and see.

We'll take this tiny pieces of good news as though they're mountains of good news because it's been so long since we've had something to be happy about. Every day it seems she is getting a little stronger (and chubbier, she's 7lbs 14oz now!). I am so thankful that it finally feels as though someone is listening to my prayers and the prayers of everyone who supports Callie. For awhile, my faith was shaken to the point of not having any. We truly needed this sign.

Take one step forward, two steps back

I remember in grade school, one of my favorite things was that our music teacher let us do the bunny hop at least once a week. It was amusing to know that you do all this movement and then you realize you didn't even make any progress around the circle. Back then, it was fun. Now, not so much. I feel like I'm stuck in the bunny hop but instead of making a stride forward every verse, we are taking two steps back.

My sweet baby is 6 weeks old today. And we've spent most of those weeks in the hospital. It doesn't look to be ending anytime soon either. We have a good day, where she's awake and chattering to us, we can hold her, and she can get food down her tube. Then we have two really rotten days where she sleeps the entire time, her heart rate drops, and sometimes she has apnea. Then back to a really good day after. Rinse, and repeat. We had two excellent days in a row Monday and Tuesday this week, which was exciting and uncommon for us. That is until they decided they needed a full MRI which required her to go under general anesthesia. My immediate argument to this was that I did NOT want her under general anesthesia because she already has issues breathing and I was afraid once they put her on the vent, she wouldn't be able to come off. My fears were dismissed and I was told it was no big deal and that they'd remove the tube within a few hours after her MRI. So we agreed to the MRI against my better judgement, it lasted for 3 hours and she returned to her room at 4:00pm yesterday. As of 3:00pm today, guess who is still on the ventilator... And guess who just came in to tell us they aren't going to try weaning her at all today? And.... guess who is one pissed off mommy? I'm sure you got all those answers correct.

The MRI showed that her Chiari malformation actually looks better than it did when she was born, which means it is attempting to move higher up into her head. The neuro team wants to wait and see if she improves even more before they do a decompression surgery. I understand they want to be careful because this is a big step and she is so young. However, the point I cannot seem to get across to anyone is that it does not matter where it's at, or if it continues to look better, because she had no symptoms when it looked worse and now she has symptoms. I am the last person who wants my infant to have surgery right next to her brain, but at the same time, how long do we have to sit here and look at her struggling to breath, or worse now with a tube down her throat that she clearly does not want (ex: attempting to yank it out herself at any given chance).  And it breaks my heart because when she wakes up, she has tears streaming out of her eyes now. Seeing her today in the condition she is in versus yesterday and what she looked like is just alarming. It just makes me so mad that she still has this tube when less than 24 hours ago she was functioning just fine without it and actually improving. Now I wish I was never pressured into the MRI and the anesthesia, because we wouldn't be in this situation. I let them lead me, and now I know better. My judgement will always come first from now on, because obviously they aren't doing what's in her best interest anymore.

In more bad news, my FMLA runs out on April 13th. I have to go to work April 16th or risk losing my job. Part of me says fine, whatever, because my child needs me more. But another part of me says there are no teaching jobs out there, and I like my job. I hope this all gets straightened up before I have to make the decision to leave my child or lose my job... I feel like that's one more thing to add to my plate (and right now my plate is already filled with disgusting food). For the sake of my sanity, I really need something to go right for me now. Because I don't know how much longer I can take this.

Everyone keeps telling me to take a break, get out of the hospital, do something normal. Right now this is my normal. It seems so easy to just leave and do something like go out to eat, stop at the mall, etc. It's easier said than done. And I won't be doing it any time soon. It's harder to leave her than it is to sit here with her and suffer beside her. Those "normal" things won't be pleasurable because I'll be thinking about her. Nothing I could do would take my mind off of it. I know people just search for things to say to try and make you feel better, but sometimes just knowing someone is there is enough.

I know I don't call or text my friends and family right now. I still love you all, but there's a reason. I don't want to talk about it. I don't want to relive every bad thing that happened throughout that day. I don't want people to ask me how things are going. I don't want to have a million questions thrown at me that I don't know the answer to. If I knew the answer to them, we wouldn't be in the place we are now. We'd be fixed and home and happy. But I don't, and we're not. And it just hurts too much to talk about it right now. It's just easier to write it once, get it out of my system, and keep to myself the rest of the time. I feel less like puking then.

I have to say, maybe not a less depressing post, but definitely a less angry post than the last. We appreciate all the support and thoughts everyone is sending our way. I hope eventually I have some better news to post!