Friday, December 30, 2011

31 Weeks!

We're making progress, 31 weeks today. Next week will be our 32 week mini goal, and then it's to 37 weeks and the arrival of our sweet little girl!

We received some pretty good news at our appointment on Wednesday. Her ventricles measured the same as last week which is three weeks in a row with no increase. Her head circumference also measured the same as last week. We're hoping to keep this stabilization for our remaining six weeks. Every week she has to pass her biophysical profile (movement tests) within 30 minutes. They watch each limb for movement, she has to practice breath for 30 seconds straight, and she has to make three large body movements. This week she decided she wasn't waking up or doing anything, no matter how much she was poked and prodded. She scrunched up one foot and then went back to sleep. So they used something called an acoustic stimulator. It's a tool that makes a buzzing noise and they put it next to her head. It startles the baby to get them to wake up. The poor thing woke up quickly after that! Her whole body jumped (hey, one large body movement lol). Then she got the hiccups and they didn't stop until we were finished! She did pass all her tests though, thank goodness!

We're so happy to be able to keep sharing these good little bits of news. It seemed for so long that nothing could go right for us so just having these few weeks has been a relief to my spirit. That and the Christmas celebrations. Having my family around really broke up the loneliness of being cooped up at home. I'm missing out on the whole nesting experience because I can't help paint the room, set up the furniture, I can't even wash the tiny little clothes.... So the fun and company was a breath of fresh air, even if it was exhausting :)

Keep those prayers coming that we can continue on this positive path of no increases! We love you all and are so thankful for your support. While our journey won't end with her birth, it certainly will take us on a new path with new struggles and surprises.

Friday, December 23, 2011

30 Weeks!

I can't tell if time is flying or crawling... When I'm sitting/laying here doing next to nothing, it feels like it's taking forever to get anywhere. When I get those head measurements every week, her birth can't come soon enough for me, I just want her out and to be okay. But then I look at the progress we've made with Callie, and it's flying by! I can't believe it's been 6 weeks since the surgery. And I can't believe it's only 7 more weeks until she arrives....

Our MFM appointment this week went well. The ultrasound tech still couldn't find the membrane in the ventricle that Dr. Fox used to measure from last week, so she measured from the same spot and came up with the same number as last week. Although I don't like her number, at least we know it didn't increase. My fluid is back to 10.5, so that made me happy. They did a growth measurement on her as well and wow! She is measuring at 32 weeks gestation (with the exception of her head), weighs 4 lbs 11oz give or take a pound, and has the chubbiest little cheeks you ever did see. I take comfort in these measurements because while they aren't entirely accurate, at least if she comes earlier than expected, she's ahead of schedule in some areas. She also has a lot of hair judging from her pictures, :). Will it be blonde or red???? I can't wait to find out!!!

I'm doing my best to behave myself at this busy time of year. I won't miss the hustle and bustle of going a million different places on Christmas Eve and Day, but I will be sad not seeing the family members I have to miss this year. It's just more important to us right now to keep this baby baking than it is to run to dinners and exchange gifts. So while I celebrate the holiday from my cozy corner of the couch, I wish everyone a Merry Christmas and a stress free couple of days (haha, right?).

Love you all, and thanks so much for your continued prayers, keep them coming!!

Saturday, December 17, 2011

29 Weeks- Baby shower day!

29 weeks yesterday: 3 more to go for our goal of 32, only 8 more for our goal of 37! (eek, I'm having a baby in eight weeks?!)

Thursday was our weekly MFM appointment. Our baby girl showed off nicely for us. She completed her practice breathing, moved each limb, and even wiggled her toes on her right foot. Her heart is still perfect and her tummy and kidneys still have fluid. And then they tried to scare us to death..... They measured her ventricles and informed us they were now at 37 (bad, very bad) which meant she had gained 10 within a week. I cried my little heart out at this. And about a half hour later, the doctor comes in and takes a look, and informs us they are not in fact 37, that the membrane they needed to measure from was hard to see with her position and her ventricles are 22. Although we'd love to see these smaller, we'll take anything lower than 37!!!! So my hormonal self cried again out of sheer relief. My fluid was down to 8.5 but they assured me this was completely normal for 29 weeks and to just keep drinking water and resting. I swear I just need my own ultrasound machine! I'm so happy with the results so far (the REAL results, lol). I can't help but think if I hadn't done the surgery, she may not be moving like this, especially with her lesion being so high... I'm so glad we decided to go for it. It's been a long road, but it almost feels like we're coming to the end, or at least a new beginning.

Today I went out for the first time other than a doctor's appointment. It was SO nice to be around civilization that's NOT in a hospital. I must say, I've got some amazing relatives and friends. My baby shower was wonderful. Everyone had a lot of fun and a lot of excellent food as well. A special thanks to my girls who put the whole thing on: the cooking, the decorating, the making of the goodies, everything! It's awesome to know so many great people care about us and baby Callie. She's going to have lots of fans when she finally arrives. We got so much pink pink pink that our kitchen looks like the color pink exploded all over it :) Which of course is what every baby princess wants and needs! I loved each and every gift and I know Callista will as well (especially her very own pink claw footed bathtub hehe). The homemade gifts were amazing as well, I had no idea all my friends and family were SERIOUSLY talented! I feel like an underachiever after the blankets, tutus, bows, and quilts! All of the gifts and well wishes were appreciated so much more than I could ever write on a thank you card, but those will have to do.

One gift touched me so deeply though, because of the meaning behind it.... It was a quilt with butterflies and a gorgeous butterfly framed picture. It's not the gift so much as the meaning of the gift that made me cry... Because if you've been following along for our entire journey, you know that Callista is my butterfly and the butterfly story is one that has truly changed my life. If you never got the chance to read it, I hope you'll take the time to back track and read it, because it's true not only for my family, but for anyone who's going through a struggle. So thank you so much for this gift of the butterfly, who is so much like my daughter.

After the longest day I've had in a very long while, I'm home and resting with my current baby girl (yes, my dog lol). Trying to avoid eating all the leftover cake right this instant... I didn't have gestational diabetes but I think if I eat all the cake, I might ;) As usual.... we love each and every one of you who support us through this and we appreciate your continued thoughts and prayers as we make this last leg of the journey... And OMG, did I mention we're having a baby in only eight weeks?! Ahhhhhhhh!!!

Tuesday, December 13, 2011

28 weeks, 3 days

We made it to our first goal of 28 weeks. Cheer us on to 32 weeks now!

I had a rather rough past couple of weeks....

Our MFM appointment didn't go as well as we hoped. We were inspired by our last ventricle measurements, but this past week, her ventricles increased again to more than they've ever measured. I cannot remember both measurments, but they were in the high 20's.... It was very disappointing news to hear. Although we're still happy with the fact that her little hands and feet (and legs, and elbows, and anything else she can poke me with) move like crazy. We're hoping the damage done wasn't far enough along to prevent her from ever walking. Of course, we've got a long way to go before we'll know...

I'm doing my best to behave myself and follow the rules of bed rest, but apparently my regular OB can disregard this as though it's no big deal. My first hurdle was the fact that they refused to do my one hour glucose test along with my regular four week appointment, which meant I had to make another trip out the next week, just to have that done. Then on Friday, they called me to let me know my glucose was 139 and their cut off is 135. So now I had to go in AGAIN for the third time in three weeks (all the while still making my trips to Riverside every week, which take about 5-6 hours total by the time they're complete.) As I researched, I found that most doctor's offices have a cut off of 140 and that's the general guideline, but instead I have to go take the three hour glucose test.

Yesterday, my mom took me bright and early to the lab and we were there from 7:30am to almost 12pm. Getting stuck four times and drinking the nasty sugar drink wasn't even the worst of it. It was FREEZING in the lobby where they expected me to sit for the entire four hours (again, can we say "BED REST"?). I actually had to ask for a blanket because I was shivering. Add in the nausea from drinking the yucky thing, the headache from not eating, and the back and hip ache from being on bed rest for 5 weeks now, I was not a happy camper. I was even more agitated when the woman doing my tests basically questioned as to why I was even doing it since the cut off they have is 140. GRRRR. As of now I'm still awaiting the results. Luckily, a friend of my mom's works there and came out to see us, and ended up getting us an exam room to wait in so I could lay down. It was seriously a mess....

I guess what's frustrating the most out of this is wondering what the heck could possibly go right in this pregnancy, because so far my enjoyable moments are outweighed by all of the crap we've had to go through. I try not to let it get to me, but at what point is enough considered enough? Of course, this leads me to my next dilemma...

My husband and I had the serious discussion awhile back that we will not be having any more biological children. It's been too hard of a journey and the numbers are just not in our favor. As much as I'd love to have a normal pregnancy to know what it's like, it's not a chance I'm willing to take. If I wasn't so good at statistics, we might think differently, but I can run the numbers:
  • 1 in 1500 babies have spina bifida (.06%)
  • My bloodwork showed a 1 in 465 chance of spina bifida (.21%)
  • The chances of having another child with spina bifida.... 4%
If I'm in those percentages that aren't even whole numbers, 4% seems huge to me.  Not a risk worth taking, especially with my possible complications as well due to the surgery. So we want to adopt. I know Callie isn't even here yet, and it seems silly to be thinking about, but I want her to have a sister to grow up with.... And adoptions can take a long time. I just don't want Callie to be too old to appreciate a little sister. It's the question of when do we get started on the adoption process, because one website even says it can take up to six years to complete an adoption... But our luck, we would apply and ours would happen so quick that we wouldn't be ready.  Ugh, nothing can be simple, can it?

    Sorry for the randomness of this post, too many things to think about when you've got all this time on your hands. Above is her profile and a 3D pic of her face, well, what she'll let us see.... And yeah, that's her hand AND her foot by her head lol.

    Thursday, December 1, 2011

    27 weeks (tomorrow anyway!)

    I had my weekly appointment at Riverside yesterday. I was lucky enough for an old high school friend to volunteer to take me. It was great reconnecting with her over the long trip, and her daughter is so cute and probably the most well behaved 2 1/2 year old I've ever met (although my friend assured me that wasn't normal, lol).

    The appointment ran late, as usual, but luckily we still missed the rush hour traffic coming back from Columbus.. I received nothing but good news yesterday, and today my heart and body just feel lighter if you can understand what I mean... She wiggled away in there for most of the ultrasound and was actually kind enough to hold still so Mary, our ultrasound tech could measure her ventricles. The reach of prayer is far and amazing... Last week she measured 21 (L) and 20 (R) and this week...... 20 (L) and 18 (R)!!!! For those of you unfamiliar with this, her spinal fluid was building up in her head because it had no where else to go thanks to the opening on her back. This decrease is giving us great hope that since the closure, her "plumbing" is now rerouting itself and moving that fluid to the places it belongs! We knew this could happen but were extremely hesitant to get our hopes up, just in case we were one of the ones who showed no changes. Granted, we still have a long way to go (normal ventricles can be up to 10-12mm) I was ecstatic with these results.

    Another little bit of good news.... My fluid looks amazing as well. Over two weeks, I've increased from 10 to 13 (yay!). This means a lot of things: a) I can FINALLY have a note from my doctor to work from home. We had a bit of a miscommunication last week between hospitals and they never sent the correct number so I couldn't get permission to work from home. b) The increase shows my incision on the back of my uterus is not leaking so far. c) This part is kind of gross, but it's how babies are made I suppose.... The increase shows that obviously Callie is producing and expelling urine. Yuck, but yay? LOL.

    And we only have to make it one more week to hit our first goal. It's pretty exciting to reach this first milestone for recovery. We still want her to stay in there till 37 weeks, but at least we're making some progress. After next week, we bump up our goal to 34 weeks. Today I get to quiz my regular OB about what she knows about my surgery and what her plan is. And I hope I'm gaining weight, because I continually get in trouble for that, even though I eat like crazy, and I'm certainly not doing anything to burn calories at this point!

    As always, thanks to everyone for the thoughts and prayers. It's quite obvious they are working wonders and we're so grateful for the support and love everyone has shown. <3

    Thursday, November 24, 2011

    26 Weeks!

    Wow, I cannot believe another week has gone by. Only two more weeks until our first mini goal of 28 weeks, and only 11 more weeks until our ultimate goal of 37! We're chugging right along, thank goodness!

    I want to wish everyone a happy thanksgiving. I know I for one have a whole lot to be thankful for. I'm going to list some things I'm thankful for, although I can tell you my blog doesn't have nearly enough space for them all!
    I'm thankful for.....
    • all of the people who support me through this entire situation.
    • the surgery going so well
    • my insurance covering the surgery
    • my amazing awesome family
    • the good report we received at the doctor's yesterday
    • online shopping (hey, a girl still has to Christmas shop!)
    • the fact that while money is tight, we can still survive while I'm off work
    • what great food we had today!
    • My parents, my little brother and his fiance, and my husband working so hard on my Christmas tree today just to make sure I had one :)
    • and of course, this little baby girl inside my belly, who currently refuses to let grandpa feel her kick (stubborn little thing!)
    Although my day was spent on the couch with all the action going on around me, it was such a good day. I'm back to feeling like 90% of myself, and constantly remind myself that just because I feel great doesn't mean I can get up. I'm sticking with it! And counting down the weeks until my strict bred rest is lifted and I can go see Breaking Dawn... Three more weeks girls!!!!

    An update on Miss Callie: Her ventricles are still increasing slightly by the week, but they warned us this would happen, since her fluid now needs to find somewhere else to go. Hopefully we start seeing this stabilize or decrease soon. She's measuring 2 lbs. 1 oz., which is in the 75th percentile. Since we know she's coming a bit early, I'm glad that she's on the big side already :) She's still moving those arms and legs and the sonographer got her to arch her back on the ultrasound. And my little one is just starting her practice breathing as well. I mentioned in the last post that where her closure is looks sparkly on the ultrasound... She is now afectionately known as "Bling Baby" at the doctor's office. They're so nice there, I'm exceptionally glad to have such great care. My amnio fluid is still measuring good, and the membranes are still in tact. So far so good!!!! I can't believe it's been two and a half weeks since surgery.... Now I just need these darn steri strips to finish coming off... UGH.

    As for me and Bling Baby now, it's time to get back to Christmas shopping. I want to be DONE by tomorrow night ;)

    Friday, November 18, 2011

    25 Weeks!

    We've made it to the 25 week mark. Only 12 more weeks of bed rest to go! (Seems like a lot when I put it that way.....) Only 3 more weeks until our first goal of 28 weeks!

    We're so excited that everything is still going well for little Callista. We had our first home doctor appointment Wednesday and she's still going strong. My fluid is still a 10 (anywhere between 8-20 is normal) and her heart rate stays in the high 140's. While she was being diagnosed, she refused to turn where her back was exposed. Now that it's fixed, the ultrasound techs no longer have any issues getting a picture of her back. It's quite extraordinary to see the difference between the two pictures of before and after. At some points, you can even see the mesh show up looking very glittery (maybe she's a Twilight vampire now?). I'm just amazed at what they've accomplished and my thoughts are at peace with our decision to go through with the surgery.

    We have a weekly appointment with our Maternal Fetal Medicine doctor from now until she's born. We love the people at that office almost as much as we love our doctors at Vanderbilt so it's not too hard to gear up for these appointments.We're waiting anxiously for the three or four week mark where the studies show that changes begin to show up. As for now, we just wait and see.

    Four weeks ago, I was in agony over our situation. At this point, I've come to appreciate what we've been given, no matter how hard it was, is, and will be on us. Not that "normal" moms don't appreciate these things, but every kick, punch, and hiccup means so much to us because of what has happened. When she's born, every movement, step, and dirty diaper will be an achievement for us, not just taken for granted. I still wish everything was "normal" and still don't understand the "why me?" aspect of all this, but at least we're starting to see the light to this darkness. She was kicking me so hard yesterday that my stomach was moving and while this prohibits any sort of sleep for me, these kicks make me the happiest mommy in the world.

     On a lighter note, we've scarred our cat, Castiel, for life now. We left for 8 days and you'd think it was the end of the world for him. Ever since we've been back, he's been Casey's shadow, never letting him out of his sight. He is constantly glued to Casey when he is sitting down, and I'm the next best thing if Casey is busy or gone. At night, he smothers me in my sleep by laying across my neck, as though to say "Now you won't leave me! I'll know if you get up!". He used to do those things as a kitten and has since reverted to his old behaviors upon our return. Just FYI, it's hard to sleep with a cat on your chest.... ;)

    Sunday, November 13, 2011

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

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

    Saturday, November 12, 2011

    Operation Complete!

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

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

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

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

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

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

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

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

    Friday, November 4, 2011

    So Here We Go!

    Our appointment at Vanderbilt was this week. It was quite a trip and I'm still crazy tired from it.

    We got several bits of news while we were there, some good and some bad. For starters, the defect starts about 4 places higher than originally suspected, although the skin lesion is still in the same position. We have been told she had severe hydrocephalus (fluid in her head), but at this appointment, they informed us she does not actually qualify for hydrocephalus just yet, as she is only a few millimeters above the normal limit. This is a good sign, although her fluid may build more throughout the rest of the pregnancy. We're hoping to be one of the lucky ones who end up not needing a shunt when she's born, but we're prepared either way. Everything else was great with her: We saw all of her little fingers and toes moving so we're hanging onto that as a sign of hope. Her heart was perfect, and all her pieces/parts were where they were supposed to be. She's an otherwise healthy, chunky baby girl (yeah, they said she was a chunker for her age!). As usual with any ultrasound, she was obstinate and wouldn't hold still long enough to get a good picture of her lesion (self conscious already? Or just rotten?)

    So long story short, the doctors think we're perfect candidates for the in utero surgery. They went over all the outcomes and possible risks of the surgery. I'm going to list some of each, so if you don't want to read them skip to the next section (You know who you are!).

    • Only 40% of children who had in utero surgery needed a shunt within the first year, versus 90% of the babies who had surgery after birth.
    • 36% of children who had prenatal surgery had less evidence of hindbrain herniation (downward displacement of the back of the brain) versus the 4% of those who had surgery after birth.
    • 42% of the children who had prenatal surgery were more likely to be walking independently versus 21% of those who had surgery after birth. Also, children who had prenatal surgery had better motor function than what would be expected based on the level of the opening of the back. 
    All of these things are enormous benefits, so just remember that as you read the next list...

    • Prematurity is a given with in utero surgery. The average weeks were 34 with in utero babies, versus 37-full term for babies who had surgery after birth. The effects of prematurity have nothing to do with SB and serious to any baby. Lung function, ability to eat, maintaining heat, etc. are all consequences of prematurity. 
    • The risk of pregnancy complications increases greatly. These can include a tear in the uterus, leaking of amnio fluid, and separation of membranes within the uterus. The risks also translate into any future pregnancies as well, always requiring close monitoring and Cesarian delivery. 
    • While function can be preserved more for children with in utero surgery, they tend to have to have more operations to fix a tethered spinal cord as they get older and bigger. 
    • Of course, this is a major surgery, and there's always the slight chance the baby will not make it, although in all the surgeries throughout the years, they've only lost 3 babies.... We're confident in this number. 
    So there we have it.... I'm going to be in a lot of pain, for a good while, but if it gives our little one a better chance to maintain function and be healthier, then we're ready to take this on! So wish me luck and send lots and lots of prayers and love our way! This will probably be my last update until I recover, but I promise to update (or have someone update) my status on facebook and/or my blog.

    We love you all!!! <3

    Thursday, October 27, 2011


    Every morning, I check my email and facebook as a "wake up, it's not so bad" kind of thing.... It's only 7:30am and I'm fuming and sad this morning.

    A mother of a baby boy with SB shared her heartbreaking story on the forum I visit daily.  Her doctors gave her the worst case scenario, told her he'd never live a full life, that he'd be severely mentally handicapped because of his hind-brain formation, and he'd always be in a wheel chair. It's devastating news to a scared mother. And doing what they thought was right, her husband and she decided to terminate the pregnancy. After hearing your child won't ever "grow up, be normal", who wants their child to live a life of misery and pain? She held him when they took him at 22 weeks, and realized what a perfect little body he had and realized what I think, and hope, all SB mommies and daddies realize: this is still a baby, he or she is still perfect to them, and they are "normal" children. But it was too late for her little one.

    And then she found the SB forum that so many mommies and daddies of children who have SB post on. You see pictures of smiling faces, stories of success, and lots and lots of REAL and TRUE information. I'm heartbroken and sad for her, finding the forum too late, because now every time she sees a healthy SB child who is functioning as well or better than a "normal" child, she's going to be forced to think about what might have been.

    And THIS is why we have to advocate to all these dimwitted doctors who give ONLY the worst case scenario to families. SB has come a long way since the 50's, when the majority of babies died and/or didn't receive the proper care. I've yet to meet a mother or father who has a SB baby that is "retarded" or leading a miserable life. Doctors need to be aware of things like this forum, support groups, and the new surgeries/options that are out there. I know from experience the ridiculous things they told my family when we visited children's hospital. For instance, SB children can't live on their own as adults. Or the fact that the neurosurgeon has no plan for what to do with babies who have in utero surgery. We know why the last family who had in utero chose a difference hospital to go to after their beautiful baby was born, because the doctors are, and remain ignorant on the subject of SB and need to get with the program!

    I for one will be advocating to my OB that she needs to be a little more tender with mothers who have an issue with an ultrasound, as well as sharing some information on children who lead full healthy lives with spina bifida, grow up, get married, and have super cute babies of their own. If I have the surgery, I also cannot wait to advocate to the neuro team at Children's that this is the new wave, families should have the option, and they should be informed of it by now. Get with the program, or be replaced by someone newer, younger, and more talented.

    So let's not waste this woman's experience, and when someone asks you about SB, give them the truth: They have a physical issue that will be repaired one way or the other, but they're just like any other little one... Cute, cuddly, and a blessing.

    Sunday, October 23, 2011

    Nothing New... Yet.

    There's really nothing new to write about, but it's been a week since I've updated so I figured a few lines would be nice.

    I'm getting excited and nervous at the same time about the fact that our evaluation is coming up quickly. Excited because I want to do what's best for our little one, and nervous because there are so many side effects and consequences that come with the surgery. I now know why being a mom is so hard, because I don't care what happens to me as long as I give her a chance to be as healthy as she can be. So I'm ready to be (hopefully) operated on just so they can get to her. <3

    Sunday, October 16, 2011

    A Normal Day

    I feel rejuvenated after today... Today was just a fun, normal day. I really felt like I was just a normal pregnant woman, and for that I'm thankful. It was just so nice to spend time with a bunch of lovely ladies and not have every single discussion turn to what's going on. It seems silly to avoid it, but it makes me feel so much better.

    Because Callie is still our baby, she's still going to be a smart, adorable, and most likely spoiled little one. There's no reason to not enjoy every little kick, prod, and poke I'm feeling. She's a rambunctious little thing in there. I'm always amazed at how a tiny little thing that weighs less than a pound is shoving herself underneath my ribcage. I love when her kicks make me jump, it's always a surprise. The thing to remember is that while she may need some extra help with some things, she's still going to be a normal kid, just as intelligent as any other baby.

    As always, thanks so much for all the support and care you've all shown us. You're so appreciated!

    Thursday, October 13, 2011

    Grumpy Day

    I'm very much in a foul mood today. I wasted an ENTIRE day at Children's Hospital because they wanted me to have consults there. By consult, they mean I pay for every single person I talk to, to answer "I don't know" to 99% of my questions. We got into our 11:30 appointment at almost 1:30 and were there from about 9:45 till 3:30. Needless to say, I'm cranky and bitter about the whole thing.

    To top it off, no one ever wants to talk to me about anything else but this, and it's frankly starting to wear me down. I'm already stressed out enough without a million questions, from a million people every day. Every conversation turns to it, and I'm just tired of acknowledging it right now. There is nothing we can do or say to fix it, and I'm just done. After the day I had, I wish I wasn't even having a baby.

    If one more person repeats the phrase "God gives special children to special parents" I'm going to hit them. GOD did not do this to me on purpose, this has nothing to do with God. And please, unless you've done this, unless you've gone through this same exact thing, do NOT tell me you know what I'm going through, or you understand what I'm feeling, because you DON'T. I realize you don't know what to say, and that's fine. Instead of saying everything will be okay or something of the like, just don't talk about it. I'd rather you ignore it than bring it up incessantly. 

    So not to offend anyone, but for the next two weeks, unless I bring it up or it's pertinent to the situation, I'm shutting down anyone who even talks about it. I'm tired and exhausted, and the last thing I want on my mind all the time is this, over and over again. It just sucks, and I'd like to go back to normal for a moment, rather than have to constantly think about whether my kid will walk, what she'll be able to feel, what she might or might not develop.

    Like I said, it's been one big fat grumpy day for me, and I do still appreciate all your thoughts and prayers, but I need a break.... And yes, this is probably my anger phase of grief.

    Monday, October 10, 2011


    So the appointment is official, and I am both excited and nervous at the same time. The doctor at Vanderbilt feels Callista and I are "prime candidates" for the surgery, so we're just assuming we're going to pass these tests and get the surgery. We meet with the neurosurgeon and nurses at Children's Hospital on Thursday to prepare for delivery. It's crazy that we have to think this far ahead. I told Casey today that with her due date being possibly pushed so far ahead, I feel like we don't even have time to prepare ourselves for a little one in our home! We're trying to squeeze in every ounce of prep work we can before the imminent span of bed rest arrives. We finished registering today, so Babies R Us, Target, and Walmart are defeated. Speaking of registering, just want to share my second most favorite item we registered for:

    Is this not the cutest little bathtub ever? Callie can have her own claw footed bathtub :) Of course, I registered for the pink one.

    With the eval and surgery being a few weeks away, I feel like I at least have enough time to get my work things in order and make sure everything is covered. Hopefully my boss agrees to let me work from home a little to help ease the burden on the poor people left at the office, as well as keep me busy (and give me at least a tiny paycheck).

    I'm looking forward to posting an update on Children's, as well as how our evaluation goes. Again, I love you all dearly, and we're so thankful to have people like you in our lives to pray for us, support us, and keep us in your thoughts. I'm a firm believer that we would have never gotten this far without every single one of you. Thank you, thank you, thank you, from the bottom of my heart.