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