Thursday, July 20, 2017

Anniversary Updates


It is the one year anniversary of Aberdeen's second heart surgery - the BIG one, the scary one, the one that was a last ditch effort before having to talk transplant. I am happy to report that her most recent echocardiogram showed NO regrowth following her operation. Most of her heart is still very thick and may be problematic at some point, but the obstruction that was causing her major issues last year is still gone and her gradient is within normal limits. Feedback from the craniofacial team was also positive, and ophthalmology said that her optic nerves looked great (which means no more intracranial pressure - the shunt is doing its job. Woot). They did give us a prescription for glasses that we're going to get filled once we get to DC, but we're pretty well convinced that they are just going to take Aberdeen's cuteness factor to the next level. It felt so good to receive such positive reports as we get ready to pack our bags and move across the country again.

My tiny bookworm

Fiesta at Mission San Jose

Mother's Day trip to Dallas with Nana and Uncle Justin

Hiking with Auntie Jubie

Visiting with Grandma and Poppa

Father's Day fancy dinner

4th of July

Our first and last trips to Texas Children's Hospital

Overall, Abby is really doing well right now, and it has been so nice to have a quiet few months on the medical front.  She is hanging out at about 33in and 25lbs, and will be three in just a few short weeks! She is still all about Elmo, throwing balls, and reading books. She adores our two, big, dopey dogs and thinks that most people are generally hilarious. She recently acquired a few more consonants, which has already helped her make strides in her speech, and I feel like her motor skills have been really coming along. We are so proud of our goofy, adorable girl and can't believe that at this time last year things were so tenuous. She exudes so much joy, and I'm just so happy that things are going well for her right now. Kid deserves the break.

Trying on clothes that belonged to Mommy and Aunties

This outfit is Popsicle brand!

Things seem to be falling into place with the organization of Aberdeen's care in DC (knock on all the wood), we have secured housing on base, and hopefully everything with the move will go as smoothly as humanly possible (knock on wood more times). We're all excited about the prospect of having four seasons again and are optimistic that the DC area will be a good fit for our family. Aberdeen, the dogs, and I have never lived on base, so that experience should prove interesting, but I like the idea of being able to walk along the Potomac once weather permits! We will definitely miss a lot of things about Texas though. It has been great having a few family members reasonably close by and Abby's therapists and providers here have been wonderful. We are sad to say goodbye to our friends and our lovely home, and I, for one, will also miss the abundance of delicious Mexican food. 



Hanging with the dinos at the Witte Museum

In other news, my letter to my pregnant self was recently published on TheMighty.com!
https://themighty.com/2017/07/letter-to-self-child-born-with-noonan-syndrome/
I am in the process of querying literary agents with my picture book manuscripts and praying that someone will give my work a chance. I have been having a lot of fun getting plugged into the children's book community and look forward to making more connections after our move!


Friday, June 16, 2017

To Myself Three Years Ago:

Dear Very Pregnant Self,

I am writing to you from the years ahead because I have a few things that I need to say to you – a few things you need to hear. You may feel like this letter is shaking you by the shoulders, and that’s good, because Lord knows you won’t listen to anyone but yourself. In just a few short weeks, this seemingly endless period of your life will culminate in you bringing a beautiful baby girl into the world. Although, if I’m being honest, those weeks probably won’t seem very short to you either - sciatica, amiright?  Those doctors of yours have worked tirelessly to prepare you for what’s to come, but as it turns out, ultrasound is not a perfect science, and that baby is already throwing curveballs that no one will see coming. NO ONE can prepare you for what’s to come, including me, but what I am here to say is that YOU CAN DO THIS.  YOU WILL DO THIS.

When that baby comes out, with her head all dented in, and her heart failing (I did mention curveballs, didn’t I?) a very large part of you will want to shut down – you will want to shut off your brain from the immense hurt and shut off your heart from everything around you, including that sweet, broken baby. BUT. DON’T. YOU. DARE. Do you hear me? You will sing to that baby through ugly tears and you will hope against hope that she clears every hurdle she comes up against, because that is what she deserves, and she is counting on you for it.

Because, here’s the thing: I am looking at that baby right now, as we get ready to celebrate her third birthday. That’s right, she’s going to be three! THREE! And she is absolutely magnificent.  She has inherited your insatiable, obsessive love of books, has her Dad’s completely ridiculous, class-clowny personality, and she has somehow managed to develop the stubbornness of both of you combined. Best of luck with that. She is, simultaneously, completely her own person. She has a smile that lights up a room and a laugh that LIGHTS UP THE WORLD. There is no other sound like it, and if you want to hear that laugh, if you want to feel it fill you from the top of your head, all the way down through your toes, you must believe that you can get through this. 

I will not tell you that it won’t be hard.  It will be impossibly hard. Your resolve will be tested to its absolute limits, and you will feel yourself crumble to pieces over and over again. But you will stick those pieces back together as best you can, and you will make it through another day. And another day. And another. I will not tell you that it will get easier. Though some things WILL get easier, some things will actually get harder. Handing your baby girl off to brain and heart surgeons after two and a half years of getting to love her will be harder than when she’s three months old. I want you to know this though – listen, because this part is important: there will be more good days than there are bad, there will be more laughter than there are tears, and there will be more joy than there is sorrow. 

You will be transformed through this process. You will learn to stand up for that amazing little girl, and you will learn to stand up for yourself. Yes, you, who balks at the mere idea of confrontation, YOU will become a fierce advocate for your daughter. She will light a wildfire within you that even Smokey the Bear will stand back and admire. She will make you a more complete person.

One last bit of advice: You will need to take time for yourself.  You will need to breathe.  You will need to admit when things are too hard. As much as she needs you, you need her that much more.  As much as she will break you, she will also be the one that fixes all of the broken bits of you. But, Bethany, you CAN do this, and I repeat: YOU WILL DO THIS.


With much love and admiration,

Your Future Self

Sunday, April 23, 2017

When Dreams Evolve


First of all, Aberdeen is doing great. We are fully back into our normal routine, with three weekly therapy appointments and the occasional specialist appointment thrown in.  She's essentially back to where she was pre-op skills-wise, which is amazing, and we're working on getting her some new tools to help her progress even further.  Although signing has been an amazing communication builder for us as a family, most people don't understand the signs Aberdeen regularly uses.  To help her communication become more universal, we are in the process of getting her a picture-to-speech electronic device. She will be able to select the image of something she wants on the device, which will then translate the selection into spoken word.  She has to be able to scan through many images to make the selection she desires, so getting the hang of the device may take some time, but we're hopeful that this method will help eliminate the frustrations caused by others not necessarily understanding what she is signing.  Fingers crossed!  We're also going to have her new ankle-foot-orthoses (leg braces) adjusted a little, and are messing with the set-up of her gait trainer again to help her gain more confidence moving around.

We are still on track to see her specialists in Houston in the late June, early July timeframe.  Hopefully nothing will require an earlier trip out there. Her incision has healed well this time around, and though it has graduated to being a pretty angry looking scar, it is closed and moving in the right direction.  Thank goodness! Her hair is growing back in and her tantrums have decreased significantly.  Forward progress all around. The muscles around her left eye are definitely still in need of some time and healing, as they don't want to stay open much, but hopefully this will continue to improve.

Abby has been a lot of fun lately.  She's very into Elmo, loves her books, thinks being outside is super fun, and regularly requests that we have music playing.  Even without a communication device, her signing is becoming clearer and more direct, and she attempts to vocalize words more and more frequently.  She has started hiding her toys and making us find them (very much on purpose), engaging in pretend play, and getting into all sorts of mischief.  She got into her crayon stash and few weeks back and scooted all around the house scribbling on the walls.  I know this is not the sort of behavior that most parents find ideal, but she had never attempted anything like this before, and we were elated.  It was such a great inchstone, maybe even a milestone, that I left some of her scribbles up and have even considered framing them, lol.  We've made it out to a few of the San Antonio sites lately in preparation for the oppressive heat of summer kicking in, and have been having a grand old time.

Family trip to the bluebonnets

Enjoying the spring weather

Easter!



Checking out the deer at the park

Sea World Elmo experience was one for the books

She could not have been more excited...

Until she got to meet Elmo, which was altogether too overwhelming.

Thankfully the noisy sea lions fixed everything

Love my people

We're also gearing up for our big move to DC!  Working on getting housing lined up as well as a plan for Aberdeen's medical care.  I think we have a really good idea in the works right now, but we'll see if everything falls into place the way we hope it will over the next couple of months.  If it doesn't, there are luckily a lot of top-notch medical facilities in the DC area, so we have some backup options.     If you have contacted me about connections in the DC area, and I haven't gotten back to you yet, I apologize immensely (sometimes I am seriously the worst about responding to messages), and fully intend to participate in email debt forgiveness day on April 30, so you may be hearing from me soon. Better late than never, right?  Right?

In other news, I have thrown myself headfirst into an exciting new endeavor.  In the last few years, I've had to realize and accept that my dreams of performing are always going to have to take a backseat to Aberdeen's care. It just isn't something I can really do within our current life framework. While I sometimes mourn that part of my life, as it was and is something that I am truly passionate about, I am ready to let my love of creating take me in a new direction - a direction I can absolutely follow while providing Aberdeen the attention and care she needs. Since I was a child, writing has been something that I have cared deeply about and has been an important part of my life.  Whether it was jotting down little phrases that came to me during the day, chronicling our journey through this blog, or composing poetry, writing has long been close to my heart.  I was never sure that I really had it in me to pursue it in any sort of formal way though.  However, as she has changed many things about me, Aberdeen has given me the inspiration to actually give writing a chance.

In looking for books about medically complex kids, and kids with differing abilities, I've noticed a pretty large gap in the world of children's publishing. I've been gathering ideas for some time now, and have written a handful of manuscripts for picture books focused on this world that has become such a part of us, and I will be sending them out into the universe soon.  I'm hoping to provide a written voice for these amazing kids' stories that resembles the language and imagery that I've always treasured so much in children's literature.  I have no idea what will come of these in the long run.  I'm going to give the traditional publishing route my best effort, but if it doesn't seem to be a subject or style that the publishing world embraces, I am determined to still see them into existence in some manner.  I have a few networking opportunities coming up and am genuinely excited about where this part of our journey may take us.  I will let you know if anything big happens on this front, but since Twitter appears to be where a lot of the process happens these days, you can now find me there as well: @BethRLocklear


Monday, March 6, 2017

Reflections and Wildflowers

I can’t say that I always love the drive out to Houston. It’s a long, monochromatic trip, with very little redeeming scenery, which usually ends in bumper-to-bumper traffic. Whatever feelings of anxiety or frustration I was experiencing beforehand are typically magnified as we zero in on the medical center. However, during the early Spring, the drive to Houston takes on a different hue.  There are a number of things I’ve grown to really love about Texas. The food is fantastic. I could eat breakfast tacos every single solitary day and never achieve boredom. There are plenty of interesting cultural landmarks and traditions, and we have met some truly lovely people. Above all of these things, what I will forever cherish most about Texas are the wildflowers. With the exception of bluebonnets, I’m not confident that I could even tell you what any of them are, but the splashes of purples, oranges, pinks, and yellows along the highway at this time of year have an ability to undo the dread that I generally feel building as we make our way along I-10.  For whatever reason, the color helps me breathe. The variegated backdrop helps remind me that it might be ok – because if this kind of wild beauty can pop up along the unsightly roadway, then maybe, just maybe, Aberdeen can make it through whatever she’s about to endure with the same sort of grace.  I don’t know that it’s particularly logical, to attribute such symbolic weight to a collection of weeds that are destined to spring forth whether or not we’re there to appreciate them, but I am nevertheless thankful for their ability to draw me out of the darker recesses of my mind and bring me a sense of peace these past two Springs.

(not my picture, but an accurate representation of what we see on our trips)

___________________________________

I wanted to take a (rather lengthy) minute to reflect upon the last month.  There are lots of details that I haven’t put to paper yet because of the difficulties associated with writing on my phone, and I don’t want to forget these tidbits in the months to come. 

It has been a while since Jameson and I have truly felt out of our element with this whole medical parenting thing, but the events of the last few weeks have certainly put us to the test.  We spent more time in operating waiting rooms than we have since Aberdeen was about three months old, were introduced to equipment we’ve never seen before, much less had to contend with, and we weren’t able to draw upon any of the cardiac-related knowledge we have been accruing over the past two years.  While the necessity for an additional skull surgery has always been on the radar, Aberdeen’s heart and its function has been the primary concern for so long now, that we just weren’t devoting as much attention to the issue of her head.  In addition, because she wasn’t exhibiting ANY troubling symptoms, we didn’t have a reason for immediate concern. We never imagined that everything would have to move so quickly once her intracranial pressure rose to problematic levels.  So much changed regarding our perception of Aberdeen’s cranial status over the last month, that it has felt like we were playing catch-up. We knew going in that Aberdeen’s skull would need to be expanded due to multi-suture craniosynostosis, but knew nothing about the venous anomalies that would affect how that surgery was performed, or that they would ultimately require that Abby have a shunt placed. We were only moderately prepared for what February would put us up against – which just isn’t how we like to do things.

We now know that Aberdeen’s intracranial pressure rose to be as high as it was because of the dual issues of her skull restricting her brain growth as well as the fact that her veins and blood vessels weren’t moving cerebral spinal fluid out of her brain at the rate they should be. When the team opened her skull for the cranial vault expansion, they were encouraged by the appearance of her brain tissue and the lack of markers that would suggest that she’d been dealing with such high pressures for an extended period of time. Most likely, her pressures had been rising for a number of months, but slowly enough to not cause obvious damage, and hadn’t been at their peak for long before they were able to intervene. Though expanding her skull relieved a good bit of the pressure in her head, it just wasn’t enough in the long run because of the residual pressure left by her veins not operating effectively. There isn’t a thorough understanding of just how mildly-increased pressure affects the brain over time, but the consensus is that it isn’t good.  The only option to remedy this in Aberdeen’s case was to place a VP shunt. The shunt involves a valve and tubing that originate in Aberdeen’s brain ventricle and ultimately empty down into her peritoneal cavity (the space around the organs in your abdomen). The valve helps control the amount of CSF leaving the brain and allows for pressures to remain at the optimal level. The shunt will be a life-long device for Abby that may have to revised after a period of time if she starts to exhibit symptoms of increased ICP (although she didn’t exhibit symptoms this time around, so I don’t know how we’ll really know if there’s an issue other than catching it at a routine ophthalmology exam like we did this time).

The device that they were using to monitor her intracranial pressure prior to shunt placement was called an EVD or extra-ventricular drain.  It was a thin tube (think IV-sized) that was placed in the brain ventricle, but exited her scalp just behind the main incision (the entirety of the shunt is subcutaneous, though you can certainly see the outline of it - I'm lovingly referring to it as a dorsal fin at the moment). It was attached to a contraption set at a certain pressure level, so that any fluid in her brain that was produced above that level could drain out and be measured.  They initially had it set at 15, which would be considered fairly normal ICP, but she continued to produce too much CSF at that setting, and then at 20, and then at 25, which is when the decision was made to place the shunt.  The timing of the shunt placement got pushed up a bit when the EVD, which was sutured in, rather suddenly became dislodged.  This is not supposed to happen.  Our nurses kept telling us it COULDN’T happen.  Now looking back, this event could be considered a harbinger of things to come, as the reason it became dislodged was due to the considerable tension that had to be applied when suturing Abby’s scalp back together after her cranial expansion. The skin was stretched thinly enough that the EVD sutures tore right through her skin without any additional force.  When she came out of the OR with the EVD there was a complicated knot at the base of the tubing, touching her scalp, which a few days later I noticed had moved up the line at least an inch. Our nurse again assured us that it was probably fine, since those things can’t come out. But I was extremely concerned that something was amiss in its placement and proceeded to have a bit of a hospital room meltdown – not my first, possibly not my last. Thankfully, Abby’s neurosurgeon just happened to stop by in that moment, identified the problem (which was that the EVD had, in fact, been pulled out about an inch) and got to work removing the EVD the rest of the way and suturing up the open site. The tension of her incision suturing continued to plague us though, for almost as soon as Aberdeen was discharged from the hospital, we started to have issues with skin tearing around the sutures.

The complications with Aberdeen’s incision site were an experience altogether new to us as well.  She has had a fair few incisions in her 2.5 years, but we have never had any real issues with any of them, and as long as we followed the basic wound care instructions, everything healed up the way it was supposed to in a fairly short amount of time.  It was clear that this one was not going to proceed quite so smoothly.  There unfortunately wasn’t a way to avoid the amount of stretching and tension that had to be applied to the scalp in her case.  Because of those venous anomalies, they couldn’t do an additional surgery later on to expand her skull backwards, nor was she a good candidate for distractor surgery (an implanted device that slowly expands the skull and is later removed).  They had limited options to give her brain room to grow, and so it was a risk they had to take, and weren’t particularly surprised by when the skin started to tear. Unfortunate, surely, but not unexpected. Thankfully, when we returned to Houston this week, some of the incision had already healed and provided a little more slack with which to close the rest of the problematic areas. Hopefully, for good. It was explained to us this week that Abby’s venous abnormalities may have also contributed to the delayed healing we have witnessed with her main incision.  The craniofacial team was not able to utilize the incision from Aberdeen’s cranial surgery when she was five weeks old for this most recent operation.  It was placed too far back to address the bones around her eyes that they needed access to, so they had to make their new incision further forward. With the way that her veins developed around that previous incision, it’s possible that the scar tissue was interrupting some of the blood flow to the scalp at the new incision.  It isn’t clear that this is the case, and is still most likely simply due to tension issues, but I thought that it was an interesting piece of information. 

Thankfully, Aberdeen’s neurosurgeon seems optimistic that this is the last cranial expansion Abby will have to go through.  She explained that by this age, the brain is about 85% of its ultimate size.  She feels confident that they made Aberdeen’s skull large enough, that even if her cranial sutures fuse again (as it appears they are want to do), that there will still be enough room for her brain to finish growing without issue.  They didn’t experience the obstacles that her previous team did with excessive bleeding or the dura being fused to the skull, so we will hopefully see fewer post-op complications (the issues last time were the cause of her seizure activity), and her team also anticipates that she will eventually grow into her impressive new forehead, while her eyes will continue to enjoy a level of protection they haven’t previously had.  ;)

During all of this madness, I also celebrated my 31st birthday. My year as a 30-year-old was quite the rollercoaster. It began with Abby being admitted to the hospital here in San Antonio with a gastrointestinal virus we could no longer manage at home. I watched as my baby underwent another open heart surgery, and then skull surgery, and then brain surgery. I got a tattoo that I love and is meaningful to me. I finally found myself back at my pre-pregnancy size. Jameson and I celebrated our 9th anniversary, I saw my baby bird turn 2, and I watched our family strengthen and rely on each other and thrive. While 30 rivaled 28 for the title of Most Difficult Year, it was also a year of immense growth. I am grateful that I now have 31 to look forward to, and that I have the most magnificent people to share it with.

We’re praying that we are finally nearing the end of this difficult process and that the next few weeks will begin to bring healing, peace, and a sense of normalcy for our family (our own, totally abnormal normal, of course). We are incredibly thankful for all of the love and support we have received from far and wide over the past month.  This experience would have been even more difficult without the prayers, dog/house watching, notes, gifts, cross-country travels, dinners, and encouragement from all of you. Each of you have been a precious and beautiful wildflower on this journey, and we offer you a heartfelt: thank you, thank you, thank you!

And if you got through all of that, here’s your reward:











Wednesday, March 1, 2017

Out of Surgery


Aberdeen did great this morning. Not only is she out of surgery, but we're already back at the hotel letting her rest. They were able to clean out the wound and restitch the entire top of her incision. They used a totally different suture material and seem confident that the skin should hold this time. I'm thankful there is no longer an open wound on her head and that there was no sign of an infection already brewing. We will be staying close to the hospital overnight and checking back in with the surgeon briefly tomorrow before heading home. We'll follow up with them again in a couple weeks to  remove the new sutures and verify that all is healing well.

Her thoughts on today:


Tuesday, February 28, 2017

TCH Follow-ups, back to the OR


We arrived in Houston yesterday afternoon for a couple of days filled with with routine appointments and post-op follow-ups. Ironically, these are appointments we had scheduled over a month ago. Today, we met with ophthalmology, who told us that Aberdeen would need to be fitted for glasses at her next appointment, and this afternoon we'll follow up with cardiology, per usual. Tomorrow, we were supposed to be going to our routine follow-up with the craniofacial team and meeting with Abby's new neurosurgeon (the one she saw for the past 1.5 years retired last month). As it happens, we are now well acquainted with Abby's new neurosurgeon and no longer need to have the anticipated conversation about the timing of a cranial vault expansion. Ah, life. Instead, Aberdeen will be meeting the craniofacial team in the OR again tomorrow to remedy some major issues we've had with her incision over the last week and a half.

While areas of Aberdeen's main incision are healing well (and her shunt incision looks awesome), there are a couple of spots on the top of her head that have been a source of great concern. Unfortunately, her skin has not been able to accommodate the amount of tension required to secure her scalp after her skull was expanded, and it has been tearing away from the sutures. We've sent dozens of pictures to her team over the last week, and they were hopeful that it would start to heal on its own after a few days. While some of the spots have done just that, one of them has continued to open, leaving a large, gaping wound on the top of her head. We've done our best to keep it clean and deal with wound care and dressing changes as instructed, but I haven't felt confident in our ability to deal with the severity of the wound for a few days now. After the last batch of pictures we sent was received by the team, they decided it was time for surgical intervention so as to minimize the risk of infection - which is of especially high concern now that she has a shunt. Tomorrow they will clean out the wound and hopefully close and secure it as best they can. While I hate that she has to go through even more trauma this month, and I'm pretty sure cardiology is going to throw a fit when we tell them this afternoon, I don't know what else we can do at this point. 

So, back to the OR we go. They expect that this will merely be an outpatient procedure, but right now we're planning on staying in Houston an extra night, just to be safe. Thankfully, Abby has been in great spitrits and such a trooper through everything. Prayers this is the last step we have to take toward getting Aberdeen's head healed up and back to our usual routine. 





Tuesday, February 21, 2017

Adjusting to Home


Some things about being home are beautiful.  It's wonderful not to have people coming to bother your child at all hours of the day and night. It's great to be able to go on a walk outside when the fancy strikes.  It's nice to think that you might be able to actually get some sleep here and there.  Other things about being home are incredibly challenging: mainly, you don't have medical professionals at your beck and call whenever you think something might be wrong.

Things have admittedly been a little rocky since Aberdeen was discharged on Saturday morning.  She has started throwing some pretty epic tantrums again.  They don't necessarily last very long, but she can go from 0 to 100 at the drop of a hat.  With the tantrums come difficulties post-op that we haven't had to previously deal with.  Every time she starts screaming, her incision starts to bleed again.  I'm genuinely worried that she is going to seriously hurt herself during these episodes and I don't know what to do. Her incision runs from ear to ear over the top of her head like a wavy headband (plus the additional incision she has on the back of her head from her shunt placement).  Because they expanded her skull so much to give her brain room, they had to stretch the skin considerably to get it to fit back over her new skull shape.  The skin at the incision isn't healing as quickly as we'd like because of how thin it is stretched in certain areas, causing it to drain blood and fluid more easily than it might in other craniosynostosis cases. We've consulted with the craniofacial team over the phone and have sent them lots of pictures. They've assured us that the drainage we are seeing is still within the realm of normal, but it wasn't happening while we were in the hospital, and it really isn't fun to have new things pop up once you are three hours away from the people who can best help her.  Not to mention the fact that her skull is visibly shifting around. At certain points during the day, you can see the anterior portion of her skull moving independently of the posterior half.  Also expected, apparently, but pretty disconcerting to watch happening.  I feel like we're a little out of our depth right now. Everything happened so fast, and I'm worried that we aren't as equipped to deal with some of these bumps in the road as we have been in the past.

We're trying to stay optimistic and establish a sense of normalcy again, but it has not been easy with seemingly so much changing from day to day.  We're doing our best to keep Aberdeen calm and happy, but she's two and a half, and there's only so much that is in our control.  Thankfully, she is at least acting like herself the majority of the time (yes, even the tantrums), but we can't allow her to just do her own thing right now, she has to be closely monitored 100% of the time. I can't speak for Jameson, but I know that I am feeling pretty well maxed out.  My parents have been here and able to help, but the majority of the issue is just the accumulated stress from two jam-packed weeks of medical mayhem and the feeling that we're going to have to drop everything any second and race back to TCH.  I feel like we've experienced a year's worth of anxiety in just two short weeks.  I'm praying that some of her symptoms start to settle, so that our stress can abate and we can breathe a little.

We will be heading back to Houston in about a week for post-op follow ups and a cardiology visit as well.