ER Update

Saturday night I went back to visit my least favorite place. The ER. If you refer to my previous post, you’ll see Faith was sick a week ago (on her birthday, no less!), and we suspected Zoe had came down with the same. But with her, there are a few additives that make it hard to determine sometimes what’s really going on. For one thing, Faith never had nausea/vomiting with her illness. Fever, clinginess, yes. But no puke. Zoe, however, threw up five times on Saturday evening. That’s a record for her. With her, there is always the possibility of an underlying shunt issue causing the vomiting, and the possibility of a kidney infection causing the high fever. The final straw came when John & I were out at dinner Saturday evening & my mom called to say Zoe was very feverish despite Tylenol, and very sleepy.

So off we went.

Thankfully, the worst part of that night was the sleep deprivation from being up so late. This time, there were no multiple IVs, multiple sticks for labs, or confusion like at our last ER visit. Of course, this time around, I made no bones about the fact that I was a nurse practitioner, that we do not routinely visit the ER for minor illnesses, and I was concerned. I also knew now from previous experience, to ask for labs to be obtained when starting the IV to eliminate multiple needle sticks, to request cultures because yes, her urine dipstick will look gunky because we do intermittent cathing. The ER doc could not understand why her dipstick would look positive for a UTI if she didn’t really have a UTI, but I just let it go & waited for the culture results. Whatever. I think the pediatric urology department needs to do some educating for the ER docs on treatment of kids who are intermittently cathed.

We got in quick (the words shunt, vomiting & lethargic really speed things up), and before too long we were back with Zoe getting a CT scan of her shunt, and a shunt series. The CT scan allows the physician to see the size of her ventricles; if they are swollen or increased in size when compared to previous scans, the suspician is raised for a shunt malfunction. A shunt series is basically a series of x-rays (head/neck, trunk & abdomen) to evaluate the position of the shunt. Is it in the proper place? Is it broken? Yes, these things as lifesaving as they are for kids with hydrocephalus are mechanical and can break & move out of position. It also helps to show if there is a blockage. Even excessive constipation can cause a shunt malfunction. I think shunt placement is more of an art than a science

Thankfully, all of Zoe’s images looked great and her ventricles were actually better than they’ve ever been. So no shunt concerns. I truly did not feel it was a shunt issue–not with the fever. Shunt infections are common within the first few months after their placement, but since her incisions have long healed up, there was no open entry route for infection to the shunt.

After labs, cultures, urine samples, & Zofran, we were sent home with antibiotics. Her WBC count was just barely elevated, indicating a bacterial infection. We ruled out ears, throat & chest as sources for infection as well. I still have no clue what she had. Her cultures–blood & urine, both were negative. She is doing much better now, and last night seemed back to her old self–with a lot more talking & interest in going places.  The fever is gone, the vomiting has ceased, so hopefully this bug, whatever it was, has run its course in our home and both the girls are on the mend.

Working in healthcare, I often see the ER get misused. People going in to ER for colds, allergies, flu, sinusitis. So part of me hesitated to make the drive to Vanderbilt when deep down I truly felt she had caught a bug from Faith. But ultimately, I decided, I didn’t really care because I would not live in regret if I just kept her home & chalked this up to a routine illness & missed a shunt malfunction or pyelonephritis. All I knew was my baby was NOT herself, had never been this ill, & I was going to throw my common sense healthcare knowledge out the window because I was first & foremost her momma, and sometimes mommas get a little irrational when their babies are sick.

I am very thankful today my girls are healthy.  And very tired.

On a good note, we have started several new things with Zoe’s therapy that I am excited about. She is progressing, slowly. So are we, I suppose. We have also started working on some new things with Faith too…more to come on all of this later.

For now, I am savoring the reprieve from doctor’s visits, clinic appts, & the dreaded ER.

April’s Update

April has found us busy birds around here. We kicked off the month with Easter, which meant John putting in extra hours at church to get all the media & set stuff ready for the big day. I found matching Easter dresses for the girls which were both cute AND functional (not into the frilly, lacy stuff! I like practicality!). Thankfully, I had plenty of baby legs (like baby leg warmers) to cover Zoe’s cast. We had a great day celebrating; in all the mad rush of Easter morning, I could not remember where in the world my camera was, and so the number of pictures I got of the girls this Easter was minimal

Fast forward a week and Zoe’s appt rolled around to get her cast off. We originally were planning to have it removed, and then she’d go back in a short-leg cast for another 2 weeks. We arrived for the visit, and immediately a child-life specialist (the person who helps prepare your kid for traumatic events like surgery) came in and told us she was there to support us & Zoe during the cast removal. WHAT?!? I could not figure why in the world I needed a support person for something as simple as a cast removal. After all, I have survived handing my baby over to various surgeons FOUR times now, twice in the last four months even. I can function as a mom, nurse, PT, OT, you name it. I wear many hats, surely to goodness a cast removal did not warrant sending in a support person for me.

Well, I changed my tune when ortho pulled out the saw and begin cutting into the cast. I glanced once at it, but did not look back when I realized it looked exactly like they were sawing into Zoe’s leg. OH MY. So she sat in my lap, screaming her head off, while my “support person” held up various toys for her as a distraction. Well, Zoe is not a fan of distractions, not to mention distractions don’t work well when the noise of the cast removal saw is so loud it drowns out all other noises.

But we got through it, and her foot is STRAIGHT. Perfectly straight. I could not believe my eyes. Ortho appeared to be very proud of himself (go figure ) and announced it was so good we didn’t need to cast for 2 more weeks. He decided to put her in her AFOs during waking hours and call it a day. That was the moment I felt relieved & knew for sure that having that heel cord release surgery was a success. The right decision. Thank you, Jesus.

We also accomplished another goal at that visit. KAFOs. For some time now, Zoe has been willing to pull herself to stand at furniture. In our living room, we have a cluster of ottomans that she loves to try to stand at and play with toys. But her knees are weak. She doesn’t lock them. We have waited, and worked, pushed & prayed, but her knees are just not getting it. So ortho made the decision to go to KAFOs. These are braces similar to her current ones, but will also come up a little higher above her knee to give her knee support. I am excited to get these fitted, and see how she does. Her gross motor progress has been slow, basically since she was born. We expected this, but it doesn’t make it any easier sometimes to deal with. She meets a goal, then plateaus off for what feels like forever. So we will see how she does with these new braces.

Things on the urology front are good. No changes, so we just keep trucking along until our follow-up in June when Zoe gets her urodynamics/ultrasound repeated, and we are also having a DMSA test done. This is a test that checks the kidneys to make sure there has been no damage from her recent UTI since she also had a fever with it. We don’t really expect anything, but our urologist is very proactive about this and so she’s just being aggressive. Fine by me.

Last weekend we celebrated Faith’s birthday. I was super excited about this one; the past two she’s really been too young to care what was going on. This year, she kept asking me about all her friends from church who were coming, helped me pick out her cake design (My Little Pony), and was just overall excited about the day. Well, the morning of her party, she wakes up with a headache. Ok, whatever. No big deal. Tylenol and be done with it. As the day wore on, the headache progressed to a bellyache, then a sore throat, and finally a fever at 4 pm, with the party scheduled to start at 5 pm. At that point, I was getting seriously irritated wondering WHY in the world can we not just have a break from the madness of the last few months? The one day out of the year that is just for Faith to celebrate, and she’s sick I debated on cancelling, but John was already at the church setting up, the cake had arrived, we were ready to go. So, we sent out a few text messages to warn parents to come at their own risk, and off we went.

She enjoyed herself the best she could, but as the night wore on, she felt worse and worse. Finally, around 7 pm, we called it a night and I took her home to bed. We saved her some birthday cake, left a few extra presents for her to open later, started her on some medicine, and moved on. What else can you do? The past few days she has been back to her old self, and so we’ve been enjoying all the new presents and waiting for the weather warm up so we can get outside and play with them

Lately friends have been asking what they can do for us, or how they can help. And honestly, most days John & I feel like we manage pretty well. After being married almost 10 years, we function pretty darn well as a team. We are proactive parents, and we try to stay on top of things, and at the end of the day we can function like a well-oiled machine. But I also realize everyone needs a little help, so I’d say what we need most is prayer. Here is what for:

-Pray for patience for John & I–to patiently wait for Zoe to progress; dealing with developmental delays is hard sometimes, and the more delayed you feel your child is, the harder it becomes. Pray for patience as we wait for Zoe to meet milestones, and for patience as we raise two toddlers and all their little opinions

-Pray for wisdom for us–making decisions about our children’s care is no longer cut & dry. Especially with spina bifida, there are often no clear cut answers. Pray that we would have wisdom to know the best way to proceed when we are faced with making those difficult decisions.

-Pray that John & I would be able to continually trust our children to the Lord. He knows them & loves them even more than we do, which sometimes is hard to imagine. Pray that we would not try to carry the heavy burdens of worrying for our girls ourselves; sometimes the weight of spina bifida alone can feel very heavy, and quite frankly, it can be exhausting. Pray that we would allow the Lord to carry this weight instead, and to trust him to carry out his perfect plan for our family.

That’s all for now!  I think that is plenty enough. Thanks to all of you for your support, prayers & encouragement on this journey. It means more than you could know!

The Craziness of March

Wow! Been a while since I’ve blogged. March was a very unexpected & crazy month for us. It started off great, with a long overdue weekend visiting great-grandparents, grandparents, etc. We came home, went back to work on a typical Monday, and thought we were settling in for a routine month.

We couldn’t have been more wrong.

That week began with a big change in Zoe’s appetite. We had no clue what was up, just that she didn’t really want to eat. Not herself. We attributed it to the three molars trying to cut through her gums. That seemed to be the reasonable explanation for a one-year old. The lack of appetite, however, continued to progress. At first she only wanted pureeds. Then she started gagging on the simplest of foods. Zoe has always had a sensitive gag reflex, but never to the point of vomiting. Our therapists (speech, OT) began working with her to de-sensitize her mouth. We thought perhaps she had some sort of sensory or texture issue to table foods.

Wrong again.

The night before our routine spina bifida clinic, Zoe began wanting to refuse liquids. I busted out some Pediasure, beginning to get concerned about potential weight loss. I knew something was up but not sure what. There were no other signs. The next morning, I woke up with a horrendous stomach bug (perfect timing!), but we pressed on to the appointment because she was definitely NOT herself.

Our first stop was her eye doctor, and thankfully, he deemed her eye surgery a complete success and clears her for 6 months. First time we’ve ever gone longer than 3 months seeing the eye doc.

Next stop–urology. Here is where we have our “ah ha!” moment, but at the same time, that “oh crap!” moment when you realize the spina bifida bogeyman has just jumped out of the proverbial closet.

Upon explaining the situation, I watched the urologist’s facial expression change. Immediately. He begins calling for a urinalysis. Then lots of talk about leukocytes, nitrites, hematuria, etc…terms I know from my clinical practice all too well.

Her first UTI.

I knew she’d just bought herself a round of antibiotics. I was floored when he tells us we need to begin cathing again. NOT what I’d expected. After reviewing her renal ultrasounds, her hydronephrosis (swelling around the kidneys) which has always been mild and alternated kidneys, is now on both. I knew we had walked the line of needing to cath vs. not cathing for some time. Just didn’t expect it that day.

Off we go with a brown sac loaded with catheters, lots of instructions, and a 2-week follow up visit. My mind was already churning. What has changed? She had been so stable with urologic stuff. Does this mean her tethered cord (something all people with spina bifida have–basically scar tissue that forms from her initial back surgery & adheres to the spinal cord) is actually becoming symptomatic? Why must we deal with yet ANOTHER issue? Can we please just catch a break for a while?

Up to meet with ortho next. Zoe has been doing fantastic recently wanting to pull to stand. Her knees are still weak, and I am almost at the point that I want to push ortho to order her some KAFOs. Her knees are holding her back. Ortho comes in, obviously not concerned about her knees. We hear yet again, she needs more time. Wait and see. Those famous three words that could sum up spina bifida in a nutshell.

He wants to fix her right foot. Another surgery. What? It was as if the spina bifida bogeyman had been storing up all of this and dumping it on us at once. Yes, I knew her right foot caused us a lot of trouble. Her achilles tendon is tight. Has been since she was born. We have stretched, and stretched, and braced to no avail. It’s time to fix it. So off we go again, with pre-op instructions, casting instructions,  and more waiting.

Thankfully, March is over. April has come and with it the arrival of spring and hopefully some new stuff. I don’t even care what new stuff at this point. Flowers, Easter, sunny days, and oh, hopefully a straight foot and a healthy urinary system. Through that in there too.

Cathing is not bad (especially for me, since I’ve done it for a living now for eight years!), and even my amazing babysitter & mother have learned. John’s a pro, too. I am very thankful. It’s quick, painless, and at least we have peace of mind now knowing she is healthy. We also got some peace of mind for now that her new UTI is not a result of a symptomatic tethered cord. After repeating her urodynamics study (a quick test to evaluate bladder function & kidney reflux), urology determined that while there were no major changes since her last test, and that while her abnormal results are “minor,’ it is enough that for now we remain with a cathing schedule and follow-up in three months. Fine by me.

The tendon release surgery was not bad. I actually ended up being excited about this. I want Zoe to have the option one day of pulling to stand WITHOUT braces–if she gets strong enough. By not having this tendon release, we were totally eliminating that as an option because her ankle just rolled and was unstable. Her cast is cute, she basically ignores it, and my biggest complaint is how heavy she is in it. And also the number of crazy looks I get taking her out in public by strangers who probably are wondering why in the world this child’s leg is in a cast & if I caused it or not.

That’s another post for another day though.

For now, we are settled, it is spring, so happy April 1st everyone (and no, this is no April Fool’s joke

What is a ZipZac? (and lots more!)

If you are friends with me on facebook, you might have seen me talking lately about Zoe’s latest addition to our “equipment collection.”

The ZipZac.

The older Zoe gets, the more specifically we are able to see just how spina bifida affects her. We, along with our best friend the physical therapist, are learning exactly which muscles Zoe has control over, and what areas she is weaker in. The good news is, she has shown function and control of almost every muscle in her lower extremities. Her glutes (i.e., her butt!), is one of her weaker areas. She can control her ankle movements somewhat, and can wiggle her toes just slightly. Her quads work, her hip extensors & flexors work, although of course, she still has to get stronger all around.

Our biggest dilemma lately, has been the fact that Zoe remains in our nursery at church. It’s not that big of a deal right now, as a lot of kids don’t normally move up to the toddler room until closer to age 2. The time will come, though, sooner than I’d like, that she may not yet be walking but she will still need to move up to her age-appropriate room. We are not ready to order a wheelchair because she is young, has a lot of growing and getting stronger to do, and we have no idea if she will need it yet. Her stander is too heavy to lug back & forth in public. She can’t crawl everywhere in public places. So what to do?

Enter the ZipZac.

I discovered this nifty little piece of equipment from another parent of a child w/ spina bifida. Thank goodness for the internet & some good networking! Anyway, the price tag is a hefty $1400, and of course, not something insurance will cover.

Enter the Spina Bifida Association of Kentucky.

The past couple years, many of you have so generously donated on behalf of Zoe to this organization. This time, they so generously gave back to her. They purchased a ZipZac for Zoe, and we agreed to return it to the SBAK once she’s finished with it so another child could benefit. It arrived today during naptime, and Faith was super excited. She kept asking when we could wake Zoe up so she could try it She’s the best big sister!

Trying it out for the first time…

She did great, although I am sure it will take a while before she learns to move it. This thing is a genius idea though! It is the perfect size, lightweight, & can’t tip over. While we still expect Zoe to walk, and we don’t have a reason to think she will need a wheel-chair full-time, the Zip Zac will at least let her learn to navigate new environments such as church classrooms safely, without getting run over by walking, running toddlers, give her some confidence in her abilities, and will allow her to move up to be with kids her own age eventually.

Speaking of walking, we actually made some progress today at PT. A few weeks ago, we had some knee splints made for Zoe to sleep in at night. These will allow her to keep her legs & muscles (particularly hamstrings) stretched and prevent contractures which would definitely inhibit any future walking.

Today our PT had an idea to try them out over her regular ankle braces to see how she’d do with some added support. Take a look for yourself…

She did fantastic! Actually, she even held my hands and attempted to take small steps forward with the PT supporting her at the waist. She told me today that she felt based on how well Zoe did today that she would be ready soon for a walker, although we might need to go a little higher on the bracing. It’s those darn glutes that are holding us back! Although I was discouraged to hear those words, “higher bracing,” I could not deny the fact that I was seeing Zoe do things right in front of me I had not seen before. She was trying to take steps, and standing by herself with only our PT’s hands at her waist. Our PT thinks we would be able to back down on her bracing, and even told me today she expects that eventually Zoe could graduate to using loftstand crutches. I can’t even let myself think that far ahead yet.

We go back to Vandy in March for clinic, so I will be armed with lots of photos & videos of what Zoe is trying to do, to see what our plan needs to be. We also have a consult set for Shriner’s in April, for a second ortho opinion. There is an ongoing debate of how high to brace kids with spina bifida, when to brace, and how long do you wait to see what they are capable of doing on their own.

Who knows? It has been a wild day. Standing, steps, ZipZac, and lots more. But now it’s way too late & I have to be at work in the am…so I will leave you with a pic of my two sweet ladies…sharing some love

Groundhog Day

Lately I feel like I am stuck in GroundHog Day. Doing the same things over and over. Not getting anywhere.

Most days I can handle having a child with spina bifida. I can multi-task. I can work an insurance company to get what my child needs. I am, yes, that pushy parent who probably drives our providers nuts with my questions & requests. I can handle lugging a 16-month old, a 2.5 year old, and all our gear to a therapy appointment.

Most days.

But lately, I want to get OUT of GroundHog Day. I want to see Zoe’s hard work pay off. And my hard work. And John’s hard work. We go through times where so much progress is made, and then we plateau off. For what seems like forever. And during those “forever” times, I start to wonder if we are aiming for impossible goals. That’s what I dislike about spina bifida. It’s all one big wait.and.see.

We’ve been patiently waiting, but I am ready for some SEEING

Last night I was just in one of those funks. The “Go away spina bifida” funk. Where I am tired of getting up every day, making my child push herself and work so hard while also trying to maintain some sense of balance in our family between “typical kid” things and “therapy things.” That fine line all the parents of special needs kids walk between being parent and therapist.

Honestly, it was a pity party for myself, but hey, I figured I deserved it for at least one night

I decided even though I was mad at the Lord last night for putting what seemed like such a heavy load on us to bear, I would read anyway. And of course, the way it always happens, I read the perfect verse. One I was not even familiar with…

Though the fig tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the pen and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Savior. (Habakkuk 3:17, 18 NIV)

 

This was NOT the verse I wanted to read. I wanted something to reassure me that yes, our hard work would pay off. That my child would walk eventually. That there would be fewer & fewer “Groundhog Days” and Zoe, who is the hardest working child I know, would finally start to reap her harvest of hard work.

 

But no, that’s not what I got nor what I should’ve expected. I know better. I am learning (as difficult as the lesson is), that I have no control over any of this, and I need to “…rejoice in the Lord, & be joyful in God my savior.” All of these “yet & though there are no” phrases in that scripture remind me again & again that I have to make the  choice again to serve a God I still do not understand nor can figure out…but even if.

 

I believe the Lord teaches us to live in faith & hope, even in the middle of some of our greatest challenges in life. Raising a child with a disability would probably have to be at the top of my list of “greatest challenges,” but also “sweetest blessings” simultaneously. I am currently reading an awesome book by the author Greg Lucas, called “Wrestling With An Angel: A Story of Love, Disability, & the Lessons of Grace.” It is a fantastic book that has deepened my perspective on so many things. He writes…

“True desperation is always the most fertile ground for God’s grace

 

to produce an abundant harvest of hope. And each time God

 

has shown us His greatest glory, He has always revealed

 

our greatest despair.”

 

So, for now, we just keep on. What else is there to do? I hold on to the hope & knowledge that my great God has plans for both of my children, more than I could ask or imagine. I pray that He blesses Zoe & allows her hard work to pay off, in one way or another.  His plan might not  probably won’t be my plan.

 

For now, I will cling to what I know is true, and hold on to these glimpses of future possibilities…

 

 

 

 

P.S.–Sorry the picture is so small. I am horrible at that stuff. I’m sure John is shaking his head about right now….;)

My Valentine’s Weekend

This past weekend was an all-around good one. John & I kicked it off on Friday night with date night We stayed at home, got a few needed home improvements completed, ordered take-out, made cookies & rented a movie. It was great & I am SO thankful for family who wants to spend an evening regularly with our girls so that we can have a much-appreciated break (thanks, Nana & Papaw!).

Saturday when the girls came home we got busy! This year is the first that Faith somewhat understands what Valentine’s Day is (although she calls it “Valentimes Day!”). I bought her some Dora the Explorer valentines & we set out to make them. I folded & labeled them, she stuck on her Dora stickers…(if you look closely you can see her Smurfs tattoo–the thing has seriously lasted like, forever now. It may just be permanent).

Zoe was still too young to really know what was going on. She did try to help with some folding though (in between bites of cheerios )

We ended Saturday by making a new recipe of homemade potato soup, and it was VERY yummy. Thanks to my good friend Adra for sharing her recipe–one of my new favorites!

Sunday began our trip to Cincinnati. Last spring, I had the opportunity to meet a nurse practitioner who works at Cincinnati Children’s Hospital in the urology department. Her specialty is bowel management for spina bifida patients (lucky us!). As it just so happens, that has been one of our biggest issues with Zoe. As she’s moved into the toddler stage, we decided to be a little more proactive about planning ahead in this area. So I called up this NP, scheduled a consult, and off we went.

We had been doing our research on the side prior to the visit, so we’d already started making some very successful changes to Zoe’s diet & medications. She had an abdominal x-ray completed today as they do on all their new patients, to evaluate just how significant her constipation was. Thankfully, she is pretty well controlled, and we got some pretty good news. The NP thinks things are going well, and Zoe just needed a few minor tweaks to her plan.  We are even hopeful she can potty-train typically now, with maybe just a little extra patience & guidance from their clinic.

It was a great visit, and I was very glad we went. Faith spent the morning with her aunt Jessica, making Valentines & cookies. Zoe was in a great mood–talking, laughing & playing peek-a-boo all the way there & back, with the exception of a short nap…

On our way home, we picked up Faith, and had lunch with both Jessica (John’s sister), and Tyler (my brother). We ate at Sonny’s BBQ, an old favorite of ours. Faith thought we were at Pizza Hut. Something about the way the outside of the building looked?

All in all, we had a great weekend. Date night, rest, good food, celebrating Valentine’s Day, seeing family and getting good news at the doctor’s office. But now…I’m exhausted again. Just in time for the work week

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Parenting Woes

Before John & I had Faith, I was that person who would see kids out with their parents at Wal-Mart, screaming, throwing tantrums, grabbing items off the shelf & throwing them in the buggy, & think to myself, “My kid will never act like that!”

I was that person who sat in a church service, or a meeting, or a theatre, listening to that newborn baby crying and disrupting whatever it is going on, and think, “I will never attempt to sit through this with a BABY!”

Well, once I had a baby, I did all those things I said I’d never do, & my child did all those things I said she’d never do.

I was nieve. I had preconceived ideas about how I’d parent & discipline my child. I also had preconceived ideas about how my child would respond to my parenting.

I have since learned, it is foolish for me to create these preconceived notions when I have absolutely no experience whatsoever about something.  So now I try to just keep my mouth shut

When Faith was an infant, I truly believed those times were the hardest, that it would get easier as she got older. Lesson learned there. Sleep deprivation, countless numbers of diaper & outfit changes, all the struggles of learning to nurse a baby are now replaced with temper tantrums, attitude, and a 2 year old trying to exert her small amount of independence & learn boundaries to her strong will.

I have also realized, it kinda stinks being the firstborn, because once the second comes around, mom & dad are a little more experienced with that one! With the first, we have to just figure it out as we go. And the problem with parenting I have realized, is that you never know if you totally got it wrong until your child is grown!

The older Faith gets, the more I realize how intentional John & I have to be about making sure each child gets individual time with both of us. Although our free time is few & far between, we try to occasionally block out an hour, or a couple hours, whatever, so that I get one girl & daddy gets the other.

Last Saturday, I decided (along with nana!) to take Faith to a “Mommy & Me” yoga class. She knows some yoga moves, and loves to dance, so I figured, hey, free class, good opportunity for Faith to get a little undivided time with mommy. We picked up nana, grabbed the yoga mats, and off we went.

At first, I thought it would be successful. Faith LOVED the yoga mats, she picked out hers, and we were good…

Then she discovered a new skill–yoga mat jumping. This worked for entertainment until the class was ready to start…

Once she realized this was actually a structured class, not just yoga mat jumping, things went downhill. Of course, there would be no other 2 yr olds in the class on the day we were there, so my child was the only one making a fuss. We made several trips out to the lobby to discuss appropriate behavior, bribe with a promise of a trip to ride the merry-go-round (Faith’s newest favorite thing!), whatever I could do to try to entice her to go back in there and actually DO yoga. Not jump the mats.

It didn’t work.

In classic 2 yr old fashion, she refused, but decided to stand at the glass door and watch. Whatever works. That lasted a few minutes. Nana came to hang out in the lobby, and we had some fun times hanging out just the three of us on a giant couch in the yoga lobby. Eventually, I totally scratched the idea that we’d participate in mommy & me yoga, so we loaded back up and hit the merry-go-round. Three times

Parenting gets harder at harder. I am not sure at what point it begins to get easier and easier. Maybe it doesn’t. I remind myself often of the best words of wisdom I’ve ever heard from a very wise mom, “The days are long, but the years are short.”

One day, my house will be quiet again. And clutter-free. There will be no more tucking kids into bed for the upteenth time, no more spilled sippy cups of milk on my clean floors. No more endless loads of baby girl laundry. Gone will be the days of excited trips to the grocery store just to pick up milk…and suckers.

But I will still be here, and I know I will miss these times. So as I count to 3 one more time to give a warning, clean up the milk, do the girls’ laundry (again!), and put crying babies to bed because they want to stay up later & “…play just a little longer,” I try to appreciate & be thankful for this day.

No matter how long it feels at the time

Surgery #3

During my nursing career,  I have sent lots of patients to surgery. Various types of surgeries–working as a nurse you get to see all types of surgeries, patients, recoveries, etc. I am no stranger to all that is involved in pre-op preparations of a patient. Working nightshift, I was often required to get patients ready for those early morning 6 am O.R. calls. Scrubs, skin preps, pre-op meds, none of it seemed that big of a deal to me. It was my job. And I loved it.

The worst part of it, the part that always tore at my heart a little, was seeing the patient off to surgery, and being present when they said their goodbyes to family. It seems there is always so much uncertainty, nervousness, fear, and worry in those goodbyes. Even when the patient & family were as well-prepared as possible, I would often find myself with a little lump in the back of my throat when they gave those last hugs as we wheeled off down the hallway.

I have since learned, those goodbyes are 100 times worse when it’s your child.

On Wednesday morning (at 6 am nonetheless!) we were at Vanderbilt in the pre-op department, waiting for Zoe’s eye surgery. For almost a year now, we’ve had her in glasses (super cute ones, at that!), hoping to avoid surgery. You see, surgery can work wonders, but I know all too well that it doesn’t always work, and sometimes you open up a whole other can of something you didn’t want to start with. So I try to avoid those operating rooms at all costs.

So, we’ve done glasses, and occupational therapy, to try to improve hand-eye coordination, and fine motor skills. Zoe has progressed leaps & bounds, but her eye crossing did not. The fear in continuing to prolong surgery was that eventually her brain would get tired of trying to make her eyes work together, and would shut off vision to one eye (ambylopia). So we had to weigh the risk of developing that (about 60% or so), with the risks of undergoing surgery to straighten her eyes. No, this surgery was not simply for cosmetic purposes (although we got some GREAT results!)

As we sat in the pre-op holding room, being visited by all the members of Zoe’s team that day-anesthesia, opthalmology, O.R. nurse, I decided I have a new respect for those who work in surgery at children’s hospitals. If I get choked up sending a willing ADULT patient off to surgery who is fully aware of the risks & benefits, how much worse would it be if I spent my day sending off newborns, babies, & toddlers to surgery, who have no clue what’s going on and just know they are not with momma or daddy?

Knowing that this procedure was very minor in the realm of surgeries, and considering what we’ve been through in the past, I choked back that huge lump in my throat and handed my baby over the surgeon, who promised “I’ll take good care of her.” We decided against pre-medicating with Versed to reduce separation anxiety, because she was handling it pretty well & I didn’t want anything to delay her waking up in PACU.

While she was in surgery, John camped out in the waiting room while I hurried downstairs to get us something to eat. Once my baby goes off to surgery, everything else in the world becomes minor in comparison and I sort of wander off into a haze not really caring about much else until she is back safe in my arms. I probably cut people off in the elevator line, in the cafeteria area I apparently did not box my order up correctly, because the checkout lady specifically pointed out to me that “…the strawberries need to be in a separate box so they can be weighed.” I am not an angry person, but at that point I wanted to grab her and give her a good shake & make sure she knew that MY baby was in surgery at that very moment, so I could care less how I box my strawberries because my mind is a million miles away.

Thankfully, I restrained myself, made it back upstairs to that awful 3rd floor waiting that I have seen now three times since Zoe’s birth. Her surgery was short-within 30 minutes or so they announced “Lovell Family,” & I bolted out of the waiting room as fast as possible.

Zoe was awake once we got to her, crying of course. She fell asleep pretty much the minute I got ahold of her, and from that point it seemed the nurses were all but pushing us out the door.  Zoe had very little pain afterward, her biggest issue was wanting to rub her eyes (understandably) and so we were given arm splints for her to wear if needed to keep from rubbing.

Since we’ve been home, we have noticed a major difference in her eyes already. They are straight for one thing, but it seems even her hand-eye coordination is more steady, focused, and accurate. She bounced back almost immediately–by the time we got home from Nashville she was talking in the backseat, doing her fake cough to get us to say “Oh my goodness!”, and playing with her arm splints. I was amazed.

I am thankful for surgeons who have an ability I don’t want & will never have–the ability to operate on children. I’m thankful for nurses who can choke back those lumps in their throats and take babies from their parents’ arms and place them on an O.R. table. I’m thankful that my baby was born today, and not 20 or 30 years ago when she wouldn’t have the opportunities she has now to grow up & be successful.

I’m thankful that the Lord gives us strength to hand our baby over to a surgeon, and that I’ve been able to do it three times now. I pray it is the last, although I also pray for the grace to accept what may come, and the wisdom to know what to do about it.

But for today, we are home, we are happy & healthy, and my baby’s eyes are straight

 

Goodbye, 2011

For some reason, I really love New Years’ Eve. It’s like closure. You say goodbye to the old year, whether good or bad, and ring in the new one with all the bells & whistles, and staying up late (too late!).  Every New Year’s Eve, I love to look back over our past year, and see where we’ve been & how far we’ve come. Although usually I keep it to myself, this year, I thought I’d share it with you!

January 2011–John & I get to start off each new year with our anniversary! This year, we celebrated #8. The girls stay with Nana & Papaw, & we headed out of town for the weekend. Zoe is 3 months old, Faith is 21 months old. Zoe is still sleeping in her pack-n-play at this point, Faith is in her crib.  I have just returned full-time to work from maternity leave. Aren’t they sweet? Two sisters just barely getting to know each other…

February 2011–Zoe gets her first pair of glasses!

They look so tiny compared to mine! I remember being devastated at first to learn that she needed them. I spent so much time wondering how in the world I’d manage to keep glasses on a 4 month old baby, and how would I answer all the questions & stares we were sure to get in public? Now, I love her glasses; they show off so much of her personality, and we’ve never once gotten a negative comment about them.

March 2011–spring is coming! Zoe is now almost five months old! Faith is 23 months & counting! We are all anxious to get out of the house (especially momma!), and we start bundling up and getting outdoors to play. My brother Tyler returns from a year-long deployment in Afganistan. He gets to meet Zoe for the first time; previously all we could do is communicate with facebook messages & occasional phone calls.

April 2011–my big girl turns 2!! We had her birthday bash at home, with just family this year. It was nice to be able to relax & celebrate. She LOVED her Dora cake, and & I remember being more emotional over the fact that she was 2 than I was when she turned 1.

Zoe got her first pair of AFOs to help keep her feet straight, which we were VERY excited about. This was the month we also moved Faith up to her toddler bed, and Zoe moved into the crib. We had a big month!!

May 2011–around this time was when John & I took Faith to the zoo for the first time. Lucky for us, it rained the entire time But we made the best of it, and had a great time! I think Faith’s favorite feature was the giraffes!

We also started working really hard on helping Zoe learn to sit independently this month. Little did I know, but it would take MANY months, LOTS of therapy, & a TON of prayers before she’d finally “get it.”  This was just the beginning…

June 2011–Faith is potty-trained!! Hallelujah! We finally got our nerve up & did it! She was so excited to be in “big-girl panties,” & it was much easier than I’d anticipated. Around this time is when the girls started really getting attached to each other, and we started seeing just how much they enjoyed playing together…

July 2011–to celebrate the 4th, mom & I decided to try our hand at cake decorating. We used fondant for the first time, and I think the results were pretty darn good & it was so much fun. We celebrated our first July 4th with both of the girls, and of course we had matching outfits for the occasion Faith is now 27 months, Zoe is 9 months.

August 2011–time for another spina bifida clinic! Zoe gets new AFOs; her old ones are too small. She’s becoming a pro at rolling to get places. Faith is also finally getting a decent amount of hair on her head! Took forever but she’s got some beautiful curls!

September 2011–Zoe gets new glasses! This time, we are not just accepting the glasses, we are going all out! She gets an awesome new pink pair she has become infamous for being seen in. Yes, we do have another pair of wire-frames, but that’s just for when she feels like dressing up & going out. A girl’s gotta accessorize, ya know She also got her stander this month, which was HUGE. She’s 11 months now, and is finally able to stand for extended periods of time in the new stander. The girls are getting more & more fun together, playing well, & my only concern at this point is that Zoe start sitting more independently. Looking back, I can totally see that she just hit a plateau in her progression, but at the time I remember so vividly worrying about all the what-if’s.

October 2011–this was a BIG month for us! We celebrated Zoe’s 1st birthday with family & an awesome baby farm animals cake. Faith turned 2 1/2! So close to three!! Faith started really taking off with her speech at this point, and it still amazes me how she speaks in FULL sentences, using nouns, pronouns, etc., appropriately. She is seriously a genius!

Zoe all of a sudden decided to become a pro at kneeling. She had PT on her birthday, and they could not believe all that she was doing. It was at this point her development started to pick up speed a little. She started bearing weight on her legs very briefly while standing at toy tables with our help. She also became famous making news in the local paper for spina bifida awareness month

Faith also got to go trick-or-treating for the first time, and she had a BLAST! The girls dressed as fairy princesses, and were super cute. John & I also got a little weekend getaway this month, heading off to Nashville to watch Wicked, which was FANTASTIC

November 2011-as the year went on, things just got better & better. Everyday Faith learns something new; songs, words, phrases. She is now interested (at 2.5 years old!) in telling time, constantly asking “what time is it?” She learns how to work fairly complex puzzles, how to get on & off the potty by herself…BIG stuff!

We traveled to eastern Kentucky for our annual Thanksgiving/Christmas with the grandparents. Zoe learned how to open presents, & Faith learned to love licking cookie dough off the beaters! Zoe progressed to using rolling & scooting as a means to get away from us & Faith got her huge dollhouse as a gift from Mamaw she’d been dying for! This month, Faith is now 31 months, Zoe is 13 months.

December 2011–We had the MOST fun this Christmas! The girls are at such an enjoyable age! My worries over Zoe are becoming fewer & farther in between the more she progresses. This month, she started getting VERY close to crawling, & another big milestone–pushing up to sitting from lying! Although, now that she can effectively transition from one to another, she no longer wants to be on her belly practicing her crawling moves. Her speech is making huge progress also–the past few weeks we’ve heard LOTS of new & unusual sounds & words…very fun! We’ve also seen a lot of improvement in her fine motor skills, and earlier this year we were able to reduce her OT to every other week instead of weekly. 

Faith has had a busy month…she was in her first ever Christmas play at church. Although she was not very excited about being on stage in front of everyone, we thought she did great up there! I still love hearing her sing “Happy Birthday Jesus.” She has become my big helper around the house–helping with Zoe, cleaning, folding laundry, so I am putting the girl to work She & I have also designated Thursdays as “Mommy & Faith Day.” This means I get up extra early (ugh!) to get us both ready, and we go get breakfast together, before heading off for work & play.  It seems to be a hit with her, and I love that at least we get a little time carved out for just the two of us.

We celebrated Christmas at home this year, with minimal traveling & outside commitments, and it was wonderful (although there was no snow ) We made lots of Christmas crafts & cookies. Faith loved to help & Zoe loved to eat them We attended our annual Christmas Eve service together, ate lots of yummy food, opened a TON of presents, and were just thankful overall to be home, happy & healthy. It was a great Christmas season.

Looking back, I am very thankful & have fond memories of 2011. It was hard in some ways; all of Zoe’s therapies kept us busy & feeling overbooked at times. We John had a run-in with the flu last winter that meant we had to quarantine the girls. We had bedtime issues with Faith. A couple shunt scares with Zoe. But when all is said and done, it was a great year. No major illness, no hospitalizations, no major accidents, mishaps, or otherwise unwelcomed issues. And for that I am thankful.

While we welcome 2012 and look forward to all it will bring-anniversaries, birthdays, new milestones & adventures, I try to remember that we will also have the unexpected creep in at times. And that’s okay. I try to enter the new year without preconceived notions, resolutions or expectations. 

Just the fact that our focus as a family has to be on the ONE who already wrote the end of the book. He has already gone ahead of us in this journey, prepared the way, and will walk beside us through it. 

Happy New Year!

I’m the Christmas Blog Slacker…

Wow! So it has been like, forever since I’ve updated the blog. It’s not that we’ve been extra busy, in fact, December has been quite the opposite. This year, John & I decided very intentionally that we would scale down our holiday commitments. Normally, our holiday season is jam-packed with Christmas parties, events, plays, family travels, etc., and at the end of the season we are left trying to just catch our breath and wonder, “wow, that flew by fast!”

We have, however, been busy bees around the house. All the decorations are ready, my Christmas shopping is DONE (first time EVER this early!), and my newfound addiction to Pinterest has led to a new craft with the girls each weekend.

Faith is super excited about the tree, the presents, all our holiday baking & crafting, and most of all so far….Christmas lights. She loves them. Every time we’re out & it’s dark, she begs  asks to go look at the Christmas lights. She loves them all, but her favorite ones are the “rainbow lights” (i.e., colored Christmas lights). We are planning a special weekend trip with her soon, hopefully to one of our larger surrounding cities to see lots of lights!

Zoe has been progressing leaps and bounds lately. She has discovered mobility! Mainly in the form of rolling to get herself where she needs & wants to go, but crawling is in the works. Over the past couple months, her sitting balance has steadily improved, and I am happy to report I can now sit her down in one spot, and odds are, she’ll stay there This is huge for us, as we have been working hard-core (no pun intended!) on her core muscles.

Just this week she’s started trying to get up on all fours & rock.

We still have a long road ahead of us, but she is an amazingly determined child & I am so excited to get a front row seat to all that she’s gonna do! Also, lately, the child has been a bottomless pit. Literally. Meats, pastas, fruits, cereals, you name it, she’s ate it. Everything she can get her tiny hands on is going straight to her mouth, and we’ve made several extra trips to the grocery lately because between both girls you’d think we were feeding a small army. I love it

This year has by far been my favorite holiday season. The girls are at such a fun age, and it seems they are learning, saying, & doing new things every day. Sometimes I just want to freeze time and hang on to these moments while I can…

Aren’t they sweet?