Tuesday, December 29, 2015

tests, traveling and tinsel!



Where did December go?! Last I knew, it was Thanksgiving and now its practically New Year's.  Sorry the gap in updates but we've had a blur of a month.
 Christmas, starting therapies (more on that later) and a trip to Vandy were all in the mix. 

We were slated to take Eliza to Vanderbilt for her regular Spina Bifida Clinic in December. She is still doing really well and maxing out the visits to once every three months. At our last clinic day (in September), almost every specialist asked for a diagnostic test or some sort of imaging for the next visit. All together, this makes for a ton of tests and a ton of doctor's visits. Way more than even our gem of a clinic coordinator can make happen. And way more than any baby is going to deal well with. In the end, she set up all of our testing for December and our actual doctor's visits for January. 

So on the Sunday before Christmas, J.B., Eliza and I all totted ourselves up to Nashville. We felt like we were opening up the hospital Monday morning, since we arrived before they even had the lights turned on in the Diagnostic Imaging department. Eliza had an MRI to check her on the shunt in her brain first. I always wonder how well she'll take to this since they basically have to burrito her up to keep her from moving while she's in the tube. So far so good though, she was cooperative enough that they got their scans done on the first try! 

Next up was a hip ultrasound for her orthopedic surgeon. Often times, kiddos with SB are born with dislocation issues in their hips. This can mean surgery or casting to attempt to correct the issue, if possible. Everyone has said that Eliza's hips feel good to the touch, but the team wanted a scan to confirm. I'm proud to report that she was kicking the tech enough that it did take a bit longer to snag her images. 
Hey, around here, kicking the medical staff earns you big points!

Lastly, we headed up to the Urology floor. This was probably our most nervous point. When Eliza was born, she was put through the NICU's "Cath Plan". Basically, she needed to prove that she was going on her own and have a clear kidney ultrasound. She went through a cathing schedule over the course of several days and had a great kidney scan so the urologists decided to let things lie for a bit. Now that she's a few months old, they want to check in on those kidneys and her bladder once again. When the muscles and nerves in that area don't work correctly, there can be an assortment of issues, reflux or pressure in the bladder and kidneys being some of the most common and concerning. 
Eliza's first test was a urodynamics, which is a pretty uncomfortable, 45 minute procedure to look for these things.

Of course, my darling girl was a gem! And we had two great nurses that walked J.B. and I through the procedure so we could understand the issues they were looking for. Based on the information they gave us, we were thinking the test was going pretty well.  After the urodymanics test, Eliza also had an ultrasound on her kidneys to give them another once over. We felt like we were holding our breaths when Eliza's urologist came back in with all of the official news. Fantastic results! At this time, Eliza shows zero signs of any reflux or unusual pressure on her bladder or kidneys. She was doing just perfectly on her own! We knew poor result would have meant medication and new, rigorous cathing schedule at home, so we were over the moon with the news! 
The urology team will do these tests at least once a year to check on how things are going and reassess. Once she's old enough to attempt potty training, we'll find out what kind of function and control she really has and what the future might be there. It's a long road and an uphill battle in this department, but we definitely feel like we had a victory this time!

We won't get the results of brain MRI or hip ultrasound until we see all of her surgeons in January. I'm far more confident about positive results there though. Her shunt seems to be operating perfectly right now and we've gotten thumbs up across the board on those hips, so hopefully these will just be simple confirmations.

Overall, it was a great visit and a fantastic Christmas gift for J.B. and I. We are so proud of this gal and how wonderful she's doing! Can't wait for high fives all around from her team in January!
Thank you so much to all of you that have prayed for us during this visit! We're so happy to report good news!



Christmas 2015!

 

Friday, November 13, 2015

three months!


I can't believe this little bug is three months old! I've officially packed away quite a few of her first size of clothes - so sad! But I love that she's so happy and growing like a little weed.




Weight: 11 lbs
Height: 22 1/2 inches
Eats: She still nurses but mostly is fed with a bottle. Girlfriend eats about five times a day. We live and die by the schedule
Sleeps: In her crib now! She's taking on about a 11-12 hour stretch at night and take three 2 hour ish naps during the day. Again, that schedule is the best ever.
Favorite things: Talking! Okay so its baby gibberish. But Eliza loves to sit and talk to you for hours. She just wants someone sitting there to listen to her go on and on. Jake swears he knows what she's saying, but when all the translations ended up being "I love Jake!" and "I have the best big brother!", we got skeptical. :)
Still a huge fan of bath time and her time under her baby gym as well.
Hates: The car seat is still the devil. Though we've added a travel sound machine that seems to help a little.


We're also starting some new therapies this month. Because of her spina bifida diagnosis, Eliza automatically qualifies for physical therapy through a state program called Early Intervention. She'll also receive private PT through our insurance. I'm equal parts nervous and excited about this. I'm anxious to hear a professionals take on what she can do current and what we can work on. But its still so daunting! I'm sure I'll be back in a couple of days to report on how the first few PT appointments went!
Otherwise, we're still pretty much in "normal" baby mode. So on to the fun stuff! Here are a few of our current must-have with Eliza:




Fisher-Price Piano Gym - There are so many different types of play gyms. This one was a specific purchase because we thought Eliza might really take to kicking her feet against the keys - something we obviously want to encourage as much as possible. And holy moley, we were right! She loves this thing! And I love watching her play!

Boudreaux's Butt Paste - One of the not so lovely side effects of spina bifida is a constant pooplosion situation. It's manageable but if we aren't careful, Eliza will get a not so lovely diaper rash. Our first line of defense is Boudreaux's, which seems to keep any rashes at bay if used regularly.

4Moms Mamaroo Bouncer - This swing/bouncer combo was something I thought I'd never purchase based on the price. But with the suggestion of a few NICU nurses and some very generous gift cards from my baby shower, we elected to go ahead and get one for Eliza. Our thinking is that with her limited mobility, she might use it a bit longer. And if she doesn't, then the resale value on these is also great! So far she's loved it!
Ergobaby Baby Carrier - I am late to the baby wearing game. I'm not sure if its because I just didn't know any better with Jake or because now that I have two kids, I need all the help I can get. But now, I'm totally down. I have a quick sling wrap for fast trips, a DIY moby, and my favorite, an Ergo. The Ergo is so light and comfortable! It's perfect for carrying my sweet girl all over the place. She loves being wrapped up and snuggled.

Cloud B Gentle Giraffe - White noise machines are a present from God. I'm convinced of this. And we loved using this Gentle Giraffe inside Jake's crib at bedtime. Now Eliza has inherited this little gem.
 
FridaBaby Nasal Aspirator - I know, I know. You think its gross right? I thought so too. I was super anti-NoseFrida with Jake. I mean, just the thought of it is gross. But I promise there is a full filter system so nothing nasty gets anywhere near your mouth. I bought one of these on a whim. And I'm telling you, nothing works to clear out yucky noses and sinuses like this thing. It's amazing!

Honey Apple Baby Wash - You can't beat that yummy little baby smell! And this Johnson and Johnson wash is my very favorite!


So far, its been a pretty breezing three months with this little lady. She's an easy going little gem.
Happy three months, sweet gal!!

Friday, October 30, 2015

spina bifida awareness: q&a part two






Hi! Welcome back for part deaux of my spina bifida Q&A!
{go HERE for part one!}

In honor of October being Spina Bifida Awareness month, I'm answering a few of my most asked questions on the blog. So jump right in!


What does Eliza's care look like? 
Well, right now it looks the exact same as any two month old baby's care! Same dirty diapers. Same snoozing naps. Same tiny perfect little face. Same screaming in the car seat.  
Oh wait, that screaming isn't everyone? Well shucks...
But seriously, its a great thing! All of her specialists are very happy with her as is and she doesn't require any additional intervention at the moment. Our next spina bifida clinic is in January, so we'll have new orders then if they'd like anything to change. I do know that we're expecting to start her physical therapy soon. That is something that she'll likely do continually over the course of her life to help with strength and control.



Will Eliza have to have any more procedures during her lifetime?

 Oh, I'm sure. And the potential list is quite long. Boo.

There are a lot of spinal surgeries that are needed as kids with SB grow.
Plus, with her shunt, we're likely to see quite a few shunt revisions over the years (we were told that she likely won't make it to her first birthday before she has a shunt malfunction). The spine and her shunt are biggies, but they are also just two things on the long spina bifida list that will bum us out on occasion. There are a lot of other things that aren't even on our radar yet.
The main thing I've realized is that we really have very little control over any of it. Her shunt could fail tomorrow and we'll be in the hospital immediately. Or she might have a leg or spine or foot surgery that's planned months in advance. Who knows?
So we just take it one day at a time. 



How hard is it to be a SB mom? 

Well, I've only been at this for a few months now, but I feel like I can honestly answer that it's really no big deal. For every terrible-horrible-I-hate-spina-bifida day, there are so so many wonderful days of just being joyful over my sweet gal and all that she can do. Most of the time, I don't even think about her having spina bifida.
Probably because her cuteness is so stinking distracting!



Does Jake understand her SB? 

When we came home from the hospital, we were obviously very delicate with Eliza because she was still very much healing from both her shunt surgery and her back closure surgery. Jake didn't get to hold or even touch her much for awhile. He has also seen all the stitches and scars on her, which he refers to those as her "owies". But as she healed, he's gotten to play with her and hold her more and more. Nowadays, she's not physically different from any other baby so we don't treat her any differently. 
So does he get SB? Not one bit. He has no idea what spina bifida is and I seriously doubt we'll have that conversation with him any time soon. It's probably not too complicated for him considering the kid can explain the water cycle, an F5 tornado and why a beaver has orange teeth. But he also has a very tender heart. We don't want him to worry about her or feel like she's too different from other kids or babies. He's just too young for that.
Also, right now, its easier this way. Since Eliza is his first sibling and really the first baby that he's been around, the way everything has gone is totally normal to him. We joke that he truly thinks that everyone goes to the hospital for several weeks to bring home a baby.
He may or may not have told me to go back last week and bring him a baby boy too. Umm, no, child. 
And the fact that we go to Vanderbilt so often is also normal to him. Maybe when he's older and can formulate his own questions, we'll start to get into it.



I really hope that this October has taught you guys a little bit about spina bifida!
Thanks for your questions and thanks for hanging with me!



Thursday, October 15, 2015

spina bifida awareness: q&a part one




October is Spina Bifida Awareness month. Did ya know? Don't feel bad, it's my first time at this too. 

But hey, now I'm super aware of spina bifida. So I thought I'd do my part to win the special-needs-mom-of-the-year trophy by doing a quick overview of some of the questions I get asked the most about SB. Maybe what you might not want to ask me in person. Or the questions you think are dumb. Or rude. Or weird.


Let's get this awareness party started!


Q #1: Why does Eliza have spina bifida?
The answer to that is... no one knows. Most cases of spina bifida are completely random. Moms and dads haven't done anything wrong. It's just a birth disorder that happens very early in the pregnancy, often before mom even knows she's pregnant.
We found out about Eliza's spina bifida at 17 weeks. At 16 weeks I had elected to do the quad screen my OBGYN offered. It tests for chromosome disorders (down's syndrome or trisomy conditions) and also neural tube defects (like spina bifida). At 17 weeks the results came in with an elevated level of alpha fetoprotein, which is a marker for spina bifida. The next day we were sent to a high risk maternal fetal doctor who was able to confirm her spina bifida and hydrocephalus via ultrasound.
Lots of moms that don't do the quad screen find out during their 20 week anatomy scan. And a few even find out when their child is born (though that's less and less common with today's technology).



Q #2: Is there a cure for spina bifida?
Nope. No cure. Basically spina bifida folks are just managing the cards they've been dealt.
There are various types of spina bifida that have to be treated in different ways. Eliza has myelomeningocele spina bifida. It's both the most common form and the most severe.

Myelomeningocele Spina Bifida. 
Because ridiculous ways to remember how to pronounce things always stick!


 Sometimes folks get confused about "a cure" when people talk about closure surgeries with spina bifida. When a baby is born with myleomeningocele spina bifida, the opening/lesion in their spine needs to be surgically closed. The two current options are fetal closure and post-natal closure. Fetal closure is a high risk surgery done on mom and baby when mom is only around 20 weeks pregnant. The hopeful benefit is that by closing the back earlier, it could give the baby more mobility and prevent other side effects of spina bifida. We went through the fetal surgery evaluation with Eliza at Vanderbilt and you're welcome to read more about that HERE. Ultimately, it wasn't a great option for Eliza. The more common option is a post natal closure - meaning the surgery is done after the baby is born. Usually within 72 hours of birth. This was the route we elected to go with.

(Eliza's closure surgery was done the day after she was born. She had to lay on her belly for weeks afterwards to allow for her back to heal properly.)



Q #3: How does spina bifida effect Eliza? 

Well, that's the answer we'd all like to know right now. No two people with spina bifida are the same, so we'll only know Eliza's capabilities in real time as she shows them to us. 
Having said that, her spina bifida is somewhat severe. The spinal damage begins around the T11/T12 vertebrae in her back so pretty much anything south of her belly button can be effected. We were originally told that she would have zero movement or feeling from that point down, but she's already proven that diagnosis wrong. Currently, she has deliberate movement of both legs, down to her toes. It's a lot slower and weaker than you'd see from the average baby her age, but it's muscle movement none the less, which is great. Hopefully with therapies and perhaps some assistance with bracing or walkers, she might exhibit some limited mobility outside of a wheelchair.
We also have a few other concerns outside of her physical mobility. Her spina bifida caused a condition called hydrocephalus that keeps the fluid in her brain from draining properly. At 12 days old, she had surgery to insert a shunt in her brain that drains the fluid down into her abdomen. Her shunt is something that she'll deal with her entire life. Shunts get clogged, infected, and sometimes they even downright fail. We've been told its unlikely that she'll make it to her first birthday before needing a shunt revision. If the hydrocephalus went untreated, it could cause pressure on her brain that would eventually cause some very serious brain damage. So it's definitely not something to be taken lightly.
Another hurdle is her bowel/bladder control. This is one of the most common issues with spina bifida patients since the muscles/nerves around those areas are damaged even before any of the ones in the legs. Many folks use a catheter system or a bladder/bowel timed management program to help with this. At the moment, Eliza does great on her own and in a diaper. But her urologists are keeping a close watch on her to see if she needs any extra intervention. We'd love to avoid a diapers-for-life or full time catheter situation.

So the short answer, we really don't know. We expect to see delays in her physical milestones (things like holding her head up, sitting, crawling, etc). We expect always be watching her shunt and having scans to make sure it's working properly. And we expect take the bladder/bowel issues on over time as she gets older. But she grows and develops, we'll learn more and more. 



Q #3: My aunt's sister's cousin's brother has spina bifida and he plays college ball. So Eliza will have a perfectly normal, healthy life too, right?

I hate this comparison game. Like, soapbox worthy hate it.
Again, there are various forms of spina bifida. The mildest form is spina bifida occulta. 25% of the population has this! One in four!  Obviously most people have no idea unless some doctor sees the little spot on a scan while they were looking for something else. So yup, there are technically millions of people with a form of spina bifida that lead completely average lives. But I've already outlined some of our expectations so you know that's not really us...
And here's an analogy that might help: Think about cancer. We know there are all different forms. Someone can have a tiny spot of skin that needs to be removed. That's cancer. And then the next person could have pancreatic tumor and have a month to live. That's also cancer. Within the various forms, there are also different stages. Many have lost their lives to breast cancer, while others have gone into full remission and lead active, healthy lives now.
Like cancer, spina bifida has various forms of severity and within each form every single case is different. So when someone comes up to me and tells me that their long lost friend or relative has spina bifida and that "you'd never even know!" or "they live an active, healthy life!" I typically feel pretty crummy. I know they mean well. They want to encourage us. But it doesn't help. When those statements are made, its similar to walking into a cancer clinic, finding someone there getting horrible chemo treatment twice a week, and telling them you once had an aunt that got a mole removed so you totally know what its like and they'll be fine after they leave the clinic.
Nope, nope, nope.
Now obviously, spina bifida and cancer are super different. Eliza doesn't have a terminal disease. And we plan for her to live a full and beautiful life. But you get my point. It's not just some little box we check at the pediatrician's office and then don't think about it anymore. It's kind of a big deal. And while I don't want Eliza to feel defined by spina bifida, I also don't want people to shortchange how hard she's working or how far she will go.
So, secret's out. That's the big one that gets under my skin. 



Q #4: Geez, you're mean. How the heck can we even talk to you anyway?

I warned you it was my soapbox! But in all seriousness, I enjoy talking to people about Eliza's spina bifida and being open about things. I didn't know squat about it a year ago and I'd love for others to know more. Especially the people that will be a part of her life.

So how do you talk to us? Well, just be there. Ask the dumb questions. Ask what's new or what's next for us. Get excited with us over the awesome accomplishments (because Eliza is a rockstar and there will be many!) and pray with us when things are hard (because things will be). Be thoughtful.
 If nothing else, we can all go on for days about how cute she is (because reality!).




q&a number two coming up soon!




Monday, October 12, 2015

two months old!





Check out this little lady in all her two month glory!



Weight: almost 10 lbs
Height: 21 1/2 inches 
Eats: She both nurses and takes a bottle. Which is super awesome. I feel pretty fortunate to be able to breastfeed after she had a three week NICU stay with all bottles.
Sleeps: Well! She does a nice 7-8 hour stretch at night and naps throughout the day. We try to stick with an eat, play, sleep schedule. She's been approved to sleep in whatever position she wants so we're working now to get her onto her back full time and then into her crib full time.
Favorite things: She's started playing with us a lot more and loves to smile and coo at you, which is the sweetest ever. And she's still a pretty avid snuggler. Girlfriend loves to be held. Warm baths are also topping the favorites list.
Hates: Her car seat. Whomp whomp. Car rides are less than fun around here at the moment.


We also had Eliza's baby dedication at our church this month. Its a special moment for us as we pledge to raise Eliza in a Christian home and help guide her in whatever way God would use her.




Oh and Eliza took her first vacation this month with my family!
We loaded up (along with my parents and brother and sister-in-law) and headed to the Gulf for a little fun in the sun. Eliza spent most of her beach time in a little shade tent, but she had a great time napping in the shade to the sound of the waves. She seemed to enjoy the pool too!
... Just not the car ride...





Her pediatrician gave her two thumbs up at her regular appointment. I was thrilled to hear that he felt like she was holding her head up as well as any other two month old. Anything with trunk control is a bit of a question mark, so way to go Eliza!



(We probably shouldn't tell the doc about her donut obsession...)
 


All in all, I'm elated at how smoothly the last two months have gone. Before she was born, I'd have given my right arm to have a crystal ball that told me what I could expect. It's just a relief to see this sweet baby and watch her grow. I'm one lucky momma!



Wednesday, September 30, 2015

Our first Spina Bifida Clinic


Apparently having a newborn and a preschooler means that sometimes you slack on the posts for a couple weeks. Whoops! I'd promise that it won't happen again, but well, that probably isn't true... 

So the latest! Eliza had her very first spina bifida clinic two weeks ago at Vanderbilt. The concept is pretty genius because it means that the coordinators take all the different specialties that need to see your kiddo and book them on the same day. So instead of having to drive up there what would likely be several random days a month for various tests or appointments, our beloved coordinator Rose talks to all of our docs and whips them into shape (nicely, of course, because that's what beloved people do). So spina bifida clinic means we spend one or two consecutive days at Vanderbilt, once every three months.

 We arrive in the testing and imaging area first for whatever tests have been recommended. At best, that's just the always requested brain MRI for neurology to check on her shunt. At worst, every specialty has some fancy pants procedure. 

After all the different tests, we head upstairs to the actual spina bifida clinic floor. Much like any specialty's office, you wait to be called back, have your vitals taken and then are escorted to an exam room. On the door, they taps a sheet of paper with Eliza's name and all of her specialties listed. One by one, they all make their rounds. There's no timetable and no specific order that I can figure out. You just hang out in your tiny jail cell exam room until everyone has been by. On their way out, the doctors sign off on the page on the door. Next to their name they fill in when they need to see us next (6 weeks, 3 months, 6 months, ect) and what tests they want done before the next appointment. 

All in all, it's really efficient in the long term. One drive up. One or two days at the hospital. All the doctors and surgeons in one place, working together. But in the short term, it's the longest day(s) ever. 

This last visit was likely our shortest clinic ever. Since Eliza is so little still, we got to skip out on a couple of docs. And we had minimal resting beforehand. But even with a short day, J.B. and I decided that a hotel stay needs to be involved. Toss four hours in the car on top of all of this medical nonsense and you have three very cranky, overly exhausted people.

So how did it go?? Get to the good stuff already, right? 

We had a fabulous appointment day! Eliza got the happy nod of approval from every specialty on the list. The highlights were definitely:
a. looking at the "before" and "after" shunt surgery brain scans with neuro. It was amazing how well her shunt was working and the different it made on the pressure on her brain! 
And b. Meeting with her ortho doc for the first time. He first talked about how great her legs were, which was confusing to us. But he then went on to explain that a lot of SB kiddos are born with lower limb deformities like clubbed feet, dislocated hips, etc, that needed castings, braces and even surgeries to correct within the first year of life. Eliza has perfect little legs, just ready for wiggling. Which she was promptly doing during the exam and led him into a discussion about she was already performing on a much higher level than they would normally expect. Basically they'd have to toss the textbook put the window and just see what she could do over time. Sounds good to us! 

Overall, it was a day full of good news. Each specialty released us for the maximum amount of time (3 months)!  

That's right guys - no appointments for three months! If you're looking for the Wilders, we'll be the ones doing the happy dance until December - Eliza included!!



(Tuckered out after a day at the Botanical Gardens) 


Saturday, September 12, 2015

one month old!




A month old! What?! Someone explain to me how this is possible. I can only assume a Delorean and Doc Brown were involved because I have no other idea how quickly time has passed. 

So let's get down to it. 
Sweet Eliza is simply the best baby on planet Earth. She sleeps like a rock, eats like a champion, and snuggles like the coziest little butterball there ever was. 
{I could also add that she grunts like a goat, burps like a thirteen year old boy, and is by far the gassiest member of our family... but I guess I shouldn't mention those things for fear of ruining her ladylike reputation.}


She had her first spina bifida clinic day at Vanderbilt yesterday and left the building with positive reports from all of her specialists {more details to come on the SB Clinic}. The incisions from her closure surgery and shunt surgery all look great and she's finally taking a few naps on her back!

So the basics... 

Weight: 8.5 lbs
Height: 21 inches 
Eats: Just breastmilk, but like a boss. 
Sleeps: On four hour rotations, which isn't half bad at this age. Still on her belly for the most part. 
Favorite things: Snuggling! Girlfriend is as cozy as they come and would much rather nestle into you than her darn bed. A warm bath is a close second to being snuggled. And she also seems to really enjoy her Mamaroo swing. 
Hates: Clothing changes and being hungry. Those are basically the only things that have her crying, which is a rare act. 

All in all, Eliza's first month has most definitely been a roller coaster. But from weeks in the NICU to settling in at home, she's proven herself to be resilient, even-tempered and positively adorable.

What more could a mom ask for?? 



Wednesday, September 9, 2015

"Is she going to be okay?"



Between all the appointments and errands and visits, this is probably the question we hear the most. 
"Is she going to be okay?"
And its worth noting that we hear it in equal amounts from family/friends and from strangers. 


From the ones we know and love...
See, even though they've been there for us every step of the way, our friends and family aren't spina bifida experts. They haven't spent hours researching it or sitting in the doctor's offices listening to the specialists. Eliza might be the only person they know with spina bifida and hydrocephalus, so of course, it's not on their every day radar. 
But our friends really love us. And they're truly interested when they ask. They only know snippets of information that they catch from us and they hope all is well for Eliza. They offer smiles and hugs and food (all of which are lovely!). And they try to encourage you by telling you about some kid or acquaintance they know with spina bifida that plays little league or runs 5ks and "you'd never know they have it!" 
They mean well, they really really do. 


And the strangers...
They see me holding my precious, tiny little newborn in Target or at a restaurant. They're sweet and polite and comment about how beautiful she is (because YES!). And with a closer look to one side of her head, they see a misshapen area with a long protruding object under her skin (her shunt). They see stitches in several places and they are immediately confused about what this dear thing has been through. Sometimes they have spoken at all. They just eyeball her from across the way. Sometimes they try to politely pretend like it isn't there while diverting their eyes. Sometimes they just finally ask, "Oh goodness, what's that? Is she going going to be ok?" 
It's curiosity. I get it. They mean well, they really really do. 

Maybe I'm not the mom that should be writing this. In fact, I'm sure I'm not. My little gal isn't even a month old, what do I know about all this yet? She doesn't have her first leg braces or mini wheelchair. For probably the only time in her life, she's actually not behind on a single milestone. 
So maybe I don't know much yet, but I've definitely caught on enough to know that the stares and questions are a part of our new reality. 

Especially this one... Is she going to be okay? 

And I'll go ahead and claim that "new to being a special needs mom" card now and say that I'm not sure how to answer that. She has spina bifida. She has hydrocephalus. There is no cure for either, just management. She'll likely be wheelchair bound for much if not all of her life. She'll likely have dozens of more spine and brain surgeries to keep her healthy. There will be a lot of struggles and a lot of things she can't do. I don't want to downplay that. I don't want to pretend that she'll outgrow this in a few years, that it's comparable to some other newborn's jaundice or acid reflux. I don't want to dismiss spina bifida or hydrocephalus like they aren't really big freaking deals. They are total game changers. Life changers.

But will she be okay? Sure she will. She has an awesome family and support system that are already so smitten with her. She is a part of a nationally renowned spina bifida clinic that manages her care. She's pretty. And smart I'm sure because she gets it from her mama (braaaaag!). She's destined for a great, full life of amazing things! She's going to be more than okay, she'll be fantastic! 

But she'll be different. And maybe that's what I'm having to get used to. The difference. The comparison to other kids and the looks from other people. The questions and misunderstandings from those around us. It's different. 

Her spina bifida defines her. It makes her different. But it also makes her so dang special. And that's something I can get used to in a jiffy. 


Wednesday, September 2, 2015

settling in



A whole week at home already! 
It's been really wonderful settling in with all four of us and getting back into a routine. 

Jake is absolutely obsessed with his sister! He has to know where she is and what she's doing at all times. We're a little overly cautious of him being around her - partly because of all of her healing incisions and partly because he's just an excited three year old - but we do try to let 
him help as much as possible. 

It's definitely a blessing that he's a fan of her rather than wanting to give her back...




Eliza still seems to be healing up really well. We're still changing her dressings on the skin grafts and back closure every day, but those areas are looking amazing. I can't believe how fast sweet little babies heal!
Tomorrow she and I are headed back up to Vanderbilt to see her plastic surgeons. Hopefully they'll be as happy with her progress as we are!


She's even a rockstar at all the "normal" baby stuff. Girlfriend eats and sleeps like a champ.
This momma got 7 straight hours of sleep from her 3 week old last night! Love this sweet girl!



Saturday, August 29, 2015

Day 16 - HOME!


Home!! Oh my goodness!! 

After Eliza had her shunt surgery on Tuesday, our NICU team insinuated to us that we had quite a few more days for her to recover and for them to feel comfortable sending us home. They also wanted to double check a potential murmur that several doctors had heard. So an echo was ordered.

But then there was Eliza... 

After shunt surgery she required little to no pain medication. 
And she immediately went back to eat double what the NICU doctors wanted.
The murmur was debatable, even with the cardiologists. Odds are, it was nothing. But a simple follow up in a couple of weeks would be no big deal to rule it out.

So as it turns out, we didn't need to be hanging out in the NICU at all! Atta girl Eliza!! 

So after processing paperwork and getting a bajillion follow up appointments, by Thursday afternoon we got to take our girl to Alabama!!



Let me just say... There's no place like home!! 

Wednesday, August 26, 2015

Day 14 & 15



Tuesday, August 25th & Wednesday, August 26th 
Day 14 & 15


Surgery day!
Eliza's neurosurgeons felt that the ventricles in her brain still hadn't stablized and they were concerned about any added pressure to her brain (and damage that could cause). They decided they'd rather put in a shunt now instead of waiting until she was very symptomatic to a hydrocephalus issue.
In surgery, they would be putting in what's called a VP shunt. Basically the valve end is inserted into the soft spot of the brain and down thru to the ventricles to drain the excess cerebral spinal fluid. The other end of the shunt is a tube that is fed under the skin around the side of the skull, then down her body into the peritoneal cavity in the abdominal. We'd be able to feel (and actually see right now since her hair is minimal) a small lump on the top of her head where the shunt enters. Everything else is hidden below the skin enough that it's a little trickier to trace where it goes down and enters the abdomen. While it seems like a crazy procedure, it's pretty basic to these guys.
(Try telling a worried mom that!) 


So Eliza's shunt surgery went well on Tuesday afternoon! It took them about two hours and the surgeons were very happy with everything. 
Our only hiccup was that the NICU doctors didn't put in feeding orders or pain med orders until well after surgery so Eliza was starving for some chow and couldn't have any medications or food. This momma was about to get fierce for her little gal. But after exiting their meeting, her doctors finally swooped in to get her hooked up with everything she needed.

Last night she recovered well and picked back up towards the amount of food she'd been eating pre-surgery, which shocked everyone.
(Not me, I know this girl loves to eat!)   

This morning neurology saw her and said she looked perfect. They gave us the green light to be released from the neuro side. Then her neonatal doc gave us word that because she was tolerating her pain so well and eating so well, that he would be comfortable with discharging us tomorrow as long as she kept it up.
(DISCHARGING! Insert 7th grade girl scream!)

So we're crossing our fingers and toes and everything else to spring this joint in about 24 hours!


Monday, August 24, 2015

Day 12 & 13


Day 12 & 13
Sunday, August 23rd & Monday, August 24th 


Well, we've had a bit of a setback. 
(I guess it was bound to happen eventually.) 

We spent a lot Sunday preparing to go home. We'd be cleared by all specialities outside of neuro and we're just waiting on one last test Monday morning. Eliza flew through the car seat test and we started the check list to head home. 


(First time ever on her back! It was so great to see her whole little face! She was mesmerized with a new view of the world! And then promptly went back to sleep... ) 
 

Sunday night we were moved over to a "step-up" room in the NICU. That means that J.B. and I are rooming in with her in the hospital suite. It's a super nice room but... it's in the hospital. Which basically means that sleep is nonexistent. Oh how I miss sleep. 

But this morning when Eliza had her ultrasound, things took a bit of a turn. It looks like the ventricles in her brain still haven't stabilized and have continued to swell. She's not show any external signs of discomfort at this point but the neurosurgeons would like to stay ahead of the game. If her brain begins to swell before its treated, it could potential damage a lot of different (and important) areas. 
So this morning they've decided to move ahead with putting a shunt in. 

We basically knew this was coming at some point. 80% of spina bifida patients have a shunt within the first six months of life. It was a nice thought to be able to head home today and get a break from this exhausting hospital stay. But we totally agree with the surgeons thoughts to stay ahead of her symptons/pain/damage. 

The word in the halls is that her procedure will be done tomorrow, which is great news! Recovery is only a day or two so if all goes well with our sweet girl, we could still be home by the weekend. 

Be praying over her neurosurgeon (Dr. Bonfield) and for her recovery in the next couple of days!

Day 10 & 11


Day 10 & Day 11
Friday, August 21st & Saturday, August 22nd 



The light at the end of the tunnel!! 
We've gotten so much great news lately!

Eliza is eating and growing like a champ. She's surpassing every nutrition goal they try to give her and truly showing her Wilder spirit (we're good eaters, haha). 

Urology has give her the clear for now. She's showing great output and won't be sent home with any kind of cathing. Just a normal baby with normal baby diapers. Such a great thing! She'll definitely be followed by urology in the future to make sure this trend continues, but we are ecstatic about her bladder/bowel control at this point! 

Plastics is still thrilled with her healing and is signing off on us to heal at home. There's been some logistical debate about exactly how we'll get home with a baby that needs to stay off her back. And we're eager to find out what we can do for her as far as movement and the slow stages of changing her over to her back more often as she heals. But I guess that'll figure all that out... 

Physical therapy has been coming by every couple of days to show us stretches and excercises to do with her legs. The therapist was able to get her to move both legs even down to the toes!! I seriously could not believe it. We were told no movement from the belly button down would be normal so we are crazy thrilled.  

And neurology is our very last hurdle. Thus far, there's been no indication that Eliza needs a shunt in her brain yet (a total shock!). There are no external signs that her brain is under any pressure. On Monday she'll have one last official ultrasound of her brain to make sure that everything is still good, and if so, neuro signs off on us too! 

Which means we get to go home!! 

I can't tell you how ecstatic we are, and how surprised all of her doctors are. Each speciality just makes comment after comment about what a terrific baby she is and how she is surpassing any expectation they'd every have. J.B. And I have no doubt that this is simply God working to show us His goodness and His marvelous plan for our gal. 

Be praying for that Monday scan! 


“Taste and see that the Lord is good; blessed is the one who takes refuge in him.”
Psalm 34:8


Thursday, August 20, 2015

Day 9



So for those that read through the two posts below about Eliza's first week, you get a gold star!

Otherwise, here are the highlights today:

Plastics: Still wanting her to lay completely flat and heal. Her back incision looks good - we've got about 4-6 weeks on that. The skin grafts on her sides look fabulous but are extremely delicate - 4-6 weeks there too. And the graft donor site looks amazing. They'll probably take the dressing off that tomorrow and it'll just be treated with some lotion. 

Neuro: Still no signs of hydrocephalus! A major win at this point. Head circumference isn't growing at a fast rate and her fontanelle is soft, which all just indicates that there's no pressure on the brain. They'd like to do one more ultrasound on her brain on Monday to double check the exact size of the ventricles, but at this point, they're just monitoring us.

Urology: She's still being cathed every 12 hours as a precaution. But if this next one comes back good, they plan to stop. Her renal ultrasound looked perfect so we're cautiously optimistic right now. Fingers crossed that today goes well. I can't believe that we have a spina bifida baby that's doing any bladder/bowel control herself!


We still aren't sure about what her movement levels are. She's having to remain so still in order to heal that neuro and physical therapy really can't gauge a lot of her abilities. At this point, it seems like her hips are showing some signs of movement, but the lower legs are very questionable. 

She's still eating like a champ! We officially have the NICU's "big baby" since she isn't a premie. She's making all of these other punks look tiny! 





Eliza's first week {part two!}

{for part one, go here! or scroll down to the last post!}


Day 5 - Sunday, August 16th

On Sunday evening, Eliza had an ultrasound on her brain. Remember, the spina bifida issues in her back have tugged down on her brain and caused things to shift. The shifting creates an problem for the fluid in the brain to drain properly (a condition known as hydrocephalus). 
The neurosurgeons had done their baseline ultrasound before the surgery, and now they wanted to come back and see if there had been any changes since Thursday's procedure. It's expected that she would have retained a little extra fluid, but any extreme changes would indicate a problem. Essentially, if the fluid in her head ever starts to put pressure on her brain, they will want to put in a shunt to divert that fluid. On a daily basis, they are feeling her fontanelle (soft spot on her head) and measuring her head circumference. A swollen or swelling fontanelle indicates that the brain is under pressure. And a fast growing head also indicates a pressure on the plates of her skull. 
Her ultrasound came back with a slight increase in ventricle size (as expected), but her fontanelle and head circumference have remained perfect.  Neuro was happy so great news for us.



Day 6 & 7
Monday, August 17th & Tuesday, August 18th

Monday was a slow day. More healing. More of Eliza just laying on her belly. The NICU team also had Eliza to really start working on real feeding. She was taking to everything perfectly and they continued to double the amount of food she got!

Despite the "win" with the food, J.B. and I were really getting discouraged at this point. It seemed like both the plastics and neuro were completely vague about what the goals are and when we were going to get there. The time here was really weighing on us. I just wanted to snuggle my baby and take her home. I missed Jake. I missed my own bed and my own kitchen and my own life. The week after you have a baby isn't really the week you want to get up and get dressed each morning and go out to eat for every meal. It's not the week you want to live in a strange place and be away from most of the people that you love. And I was over it.

By Tuesday, Eliza was getting some of her dressings changed and they were checking on the skin grafts for the first time. Both grafts took 100%!! Great news!



Day 8 - Wednesday, August 19th 

The last of Eliza's dressings were changed today. They had this strange covering over the graft donor site and J.B. and I were super curious about what it looked like. The grafts were a bit scary so we were prepared for the worst. Turns out, her donor site on the back of her thigh looked amazing! If you didn't know what you were looking for, you might not even notice at this point.
Baby skin is unreal!!

Eliza also had a renal ultrasound today. Her caths have all been pretty good, and for urology to drop off the case, they wanted her to have one. Trouble is, you can't move her. Nor can you touch like 60% of her back. The ultrasound was a sight to be seen. The techs come bedside to the NICU, and it took two doctors, a nurse, and the tech to work together to get the images without touching any of the grafts or incision sites. J.B. and I just stood by holding our breaths and of course, Eliza slept through the whole thing.  Good news! The ultrasound came back perfect!

We also were able to nail down both neuro and plastics about some timing. Neuro was really well pleased. Eliza still wasn't showing any signs of actual hydrocephalus so far! No radical head growth and her fontanelle was still soft. They are waiting for a second brain ultra sound on Monday (a week out from the last one) to either officially clear us or give us some different results. But if that looks good, then they're done with us for now.
Plastics sound really similar. They're basically just waiting for some more healing at her graft sites. She's so delicately placed on her belly right now and they don't want to her moving around much at all. I think once those heal up for a few more days, they might be a little more flexible about letting us go.
Ultimately, it sounded like if everything goes well, we could be headed home within a week or so! Heck yes!


But the best news of the day?



Yup. I got to snuggle my sweet babe! She was finally approved to lay flat on my stomach. So I soaked up almost two good hours of that (and promised J.B. he could have his turn the next day).
Best. snuggles. ever. 


Tuesday, August 18, 2015

Eliza's first week {part one!}

Oh goodness, friends! My little love is a whole week old!
And we've been so busy in the last week that I've totally failed at keeping folks as up to date as I promised! It seems like we'd be sitting around bored all day in the hospital. And while there's a fair share of that, because we have a baby in the NICU, things are constantly changing and needing our attention.

So let's catch up:


Wednesday, August 12th

Our sweet Eliza was born on Wednesday, August 12th at 10:36 a.m. via c-section. This was always the intended plan with Vanderbilt so we dealt with zero surprises (like a crazy car ride or emergency surgery). A c-section was a better delivery option for her since it was the easiest way to protect the open spot on her back. 
 Delivery-wise, everything went well. J.B. and I were able to lay eyes on Eliza just as she was delivered, and before she went on her trek over to the NICU. J.B. headed off with her to make sure no baby swapping shenanigans went down and I headed off to recovery. One of the hardest things about this set up was knowing that Eliza and I would actually be in different hospitals. She was delivered (and I recovered) at Vanderbilt Hospital, but as soon as she was okayed in the delivery room, they headed off to the Vanderbilt Children's Hospital NICU. The two hospitals are side by side so you can technically take a long walk down some back hallways that will eventually get you from point A to point B, but the distance of around 2/3 of a mile isn't something to scoff at. Especially for a recovering mom. I knew this ahead of time and one of my biggest anxieties was wondering when I'd ever get to really see my baby. I tried to prepare myself mentally to not see her for a day or two (that wasn't going over well in my head...)

So I was super surprised when my room nurse bopped only six hours after I'd had her and asked if I'd like to go over to the NICU. 
Heck yes!
I spent several hours the day she was born sitting by her little layette in the NICU. Since the surgery on her back was intended for the next day, much of the afternoon and evening was spent running tests on her to make sure she was fit for the procedure. There was also an ultrasound done to check the ventricle levels in her brain. This would give the neurosurgeons an idea of what the baseline was for those ventricles.




And we just soaked her in. She's a chunky little thing, with fat rolls that Jake never had! We watched intently on her movement levels to see if or how she was moving her legs. The neurosurgeons felt like she was displaying definitive hip movement along with some movement in the lower legs. And her muscle tone looks wonderful all over, as if she's been squirming up a storm. What I loved doing was tickling the bottom of her feet, because when I did that, she jerked them away! Considering that she wasn't supposed to have any movement or feeling below her belly button, we were thrilled. 

All of this indicates some great promise, but the real question is if she'll retain that movement level after her back surgery.



Day 2 - Thursday, August 13th 
 
Thursday morning, she went into surgery bright and early. J.B. and I went with her through all of the prep work and met with each of the different surgeons that would work on her. The goal for the procedure was to close the opening on her back with as much precision as possible. The neurosurgeons basically rebuild the spinal column and nerves of the spine, then they pass the torch to plastics, who brings together all the muscle and tissue and skin along the back.
We've known all along that Eliza's spina bifida was severe and that the lesion on her back was large. The plastic surgeons prepared us for several different intense strategies of how they might work on her, not knowing exactly what the situation would be until they got into the operating room. 

It was a long surgery, about 5 hours. Not such a fun feeling when it's your little one.
As it turned out, the opening wasn't quite as bad as they thought.
Neuro was totally satisfied with their part, and plastics was able to do a little less evasive procedure than expected. Basically she has four sites of healing. First, a major incision along her spine. Second, two smaller, but still large, incisions on her sides. Those were created to able to properly close all the muscle and tissue at the spine. Then lastly, in order to cover those side incisions, they did a skin graft from the back of her thigh. That skin was grafted onto her sides to help close those two areas. 
So, major back incision, side incisions with skin grafts, and her graft site. 

She has to lay on her belly at all times to give each of these areas plenty of time to heal properly. No movement, no holding her, even diaper changes are tricky. Just flat on her belly in the bed. 

I was on day one of c-section recovery, which was less that fun. The distance between the two hospitals was incredibly taxing since I had to return to my own room for meals, pain medication, doctor's rounds, and rest. Major kudos to J.B. for wheeling me all over the place and just staying with Eliza by himself when I couldn't be there. 




Day 3 - Friday August 14th


Friday was a major day of healing. She was on some oxygen for awhile and pain meds to help her recover from the surgery. She still hadn't had a single thing to eat and was only on IV liquids for the most part. Since SB patients will typically have bladder/bowel issues, they started by cathing her once every three hours just to check for any volume in her bladder. She's had great diapers so far, but they'd much rather be safe than sorry.

As it turned out, she was controlling her bladder and bowel just fine so far. So the cathing was quickly moved up from every three hours to every six, every eight, and then every twelve hours. Fantastic news!





Day 4 - Saturday, August 15th

By Saturday, they started her on a very small amount of breast milk that she took through a tube marvelously. They they began to quickly double the amount she was drinking and within a few days we had gone from giving her 8 mL to 60 mL. The doctors couldn't believe how easily she was handling it all while laying on her belly.

Saturday was also the day that I was discharged from the hospital! Yay! While I wasn't feeling just amazing, I was glad to be done with the trips back and forth. I was super thankful for my OB with the Fetal Medicine Clinic at Vanderbilt. They saw us through every stage of pregnancy with Eliza and my favorite OB was the one to deliver her. She came by Saturday and was so kind and encouraging about our sweet girl. I might have cried. 
(let's blame it on the hormones...) 

J.B. and I were able to discharge from the hospital and immediately get a room at the Nashville Ronald McDonald House. That was such an answer to prayer. We'd been told that the RMH often had a long waiting list and took a few days to get into, so no wait was amazing! For a super low cost, the RMH provides a room for us to stay in just three blocks from the hospital.

And if that wasn't enough, on Saturday my parents also came up with Jake! Oh my goodness, four days without my first baby was hard and we were so excited to see him. My parents got to meet Eliza and dote on her while J.B. and I got to dote on Jake. He stayed with us our first night at the RMH and thought the place was just so cool.
Unfortunately, he's too young to visit Eliza in the NICU so he'll be meeting her when we get home. 


Whew! So much to type! Stay tuned for part two!

Sunday, August 16, 2015

She's here!!



Our perfect lady!! 

Eliza Grace Wilder was born Wednesday, August 12th at 6lbs, 15oz and 19 inches long.
And she's a squishy baby! Love her rolls! 

We are so happy that she's here and can get the absolute best care. Vanderbilt has done an amazing job thus far with her care. More on that to come.

For now, here's our sweet gal on her birthday: 





Thursday, July 23, 2015

36 week update

Our final Vanderbilt appointment! 
I can't believe we're done with the Fetal Clinic!

We had a great visit with all of the staff. The head nurse and the clinic coordinator always come to check in with us several times and catch up on the latest, especially while we're waiting in between appointments. They've become like family to us, which is such a special thing in healthcare!

So, the details!

Eliza was perfect for the ultrasound:
 - Her growth is fabulous - better than average and at 6 1/2 pounds right now! Girlfriend already has chubby cheeks!
 - Her ventricles seem to have stabilized at this point, which is great. (That's the area of the brain where the hydrocephalus originates). They've stayed about the same measurement for the last month. We hopefully won't see any changes until after she's born and has her back closure surgery. Then we'll see how they react again.
 - Her movement is still great! Still moving those legs in some capacity, which is encouraging, though we don't know exactly what it will mean. 
 - Her lung development looks awesome. She's already doing a fabulous job breathing. Last night J.B. and I could actually see her breathing when we settled in for the night, which was strangely bizarre. Today we could see her breaths in and out on the ultrasound, so neat! 


All in all, the fetal doctors were very pleased with her. I'm an exceptionally boring case to them, which is always great when you're talking to specialists, ha ha.


We also met with the chief of the neuro team today as well. Dr. Wellons reviewed all the updated information with us and we asked him no less than three thousand questions about the upcoming surgeries.
Her back closure surgery isn't actually scheduled yet since they want to wait until they know she's actually here (in case I go into labor early). But it will be completed within 72 hours of when she's arrived. The closure surgery/recovery should be the most evasive thing she'll deal with in the NICU. Because she has a larger spina bifida lesion, its likely they'll have to involve a plastic surgeon to make sure the nerves, muscles, and skin on the back are closed properly. This will also mean that the wound is more complicated and could take longer time in the NICU to heal. Baring any additional complications, we've been told to expect a stay of 2-3 weeks.
Dr. Wellons also reminded us that 80% of cases like Eliza do require some sort of shunt in the brain to help with the hydrocephalus, but we'll be waiting to see how she does her first few days here. There are so many unknowns about her closure surgery and potential shunt issues that they'll have to discover once we have a baby to actually look at on the outside! 


Ultimately, it was an informative and boring appointment - always what we hope for. 




And less than three weeks until we meet our lady!
J.B. and I are both equal parts nervous and excited about what's to come. It's a lot to take in. A lot. And we know how difficult those first few days will be as both Eliza and I recover and J.B. is back and forth between us. I'm sure that its only the first of many challenges that we'll be ready to face head on!

For now, I'm feeling pretty great. And we're settling back and enjoying our last few weeks as a family of three!