There, I said it

Harper's seizures are back.
There, I said it.
It happened one night about 2 1/2 months ago. I was cutting grapes for the girls' dinner and for some reason, call it motherly instinct, I felt like I needed to look up at Harper. I saw her eyes jerk off to the left and her head bob ever so slightly. It was as subtle a movement as you would ever see, and I wouldn't have seen it if I hadn't been compelled to look, but deep down, I knew it was a seizure. My heart dropped into my stomach.
When Dave got home from work, I tried to play it cool, but within minutes I burst into tears and blurted out what I thought I had seen.
We decided that we couldn't be sure and made a deal not to freak out until we could have it confirmed on an EEG or saw something again. I would make an appointment with the neurologist the next day, we decided, and I tried to put it out of my mind.
The next day, I mentioned it to the nanny and told her to keep an eye out. About noon, she emailed me a video she had taken on her phone and it was even more obvious than the night before that Harper was definitely seizing. I forwarded the video to Dave. He replied with one word, "Fuck."
Yep, he said it.
And I was definitely thinking it.

************

A week later, we are sitting in the neurologist's office.
I am already near tears from the EEG we just endured. Harper *hates* having her head messed with ever since her surgery so attaching the leads for the EEG is like torture to her - lots of tears and screaming and she has to be pinned down.
But, really, I am just feeling utterly defeated to be back in this position again. We made the decision to remove half of her brain in the hopes that we could lick these seizures for good and now, here we are, 6 1/2 months later with no other surgical options. It's like we're back at square one. Except this time, we've already been through hell and back post-op and have come out the other side wiser, but worn down. We know exactly where these seizures could take us and it is a place I thought I would never visit again.

We come up with a treatment plan - we'll try increasing the dosage of her current medications and if that doesn't work in a couple weeks, we will switch to a new medication. I am skeptical. We tried at least 6 medications before surgery, none of which seemed to touch the seizures.
Then the doctor mentions one other thing - our final option - the great white hope - the Ketogenic Diet. We did discuss this before surgery and I remember it sounded like a huge pain in the ass at the time. It's a high fat diet, extreme Atkins if you will, that has improved or eliminated seizures in some children. It involves lots of customized meal preparations and I remember thinking it would be really hard to pull off with toddler twins. And that was before I had a newborn.

"I got the impression before surgery that you weren't sure this diet would help Harper," I say to the doctor.
"No, I always thought Harper would be a good candidate, but we were hoping for a home run with the surgery," he says.

I swallow back tears.

"Well, sometimes, you gotta hit and triple and a single," retorts Dave. "Tell us about the diet."

God, I love my husband.

************

I'm staring at a pile of vomit - tuna and mayo. Harper is screaming. I am trying to remain stoic, but I feel like laughing. It's just that gross and that ridiculous. I ponder the path that has brought me here, back to the Epilepsy Monitoring Unit at Dell Children's Hospital...again.

Poor baby!

It's been about 6 weeks since the seizures resurfaced. We've started a new medication, Depakote. Miraculously, it seems to have helped and I haven't seen a seizure in 5 days. But, we've decided to go ahead with the Ketogenic Diet in the hopes that if it works, we could wean Harper off the medications all together. So, we packed up the toys and books (I'm a pro at packing for the hospital now) and head back to Dell Children's Hospital where we are admitted to initiate the diet under the supervision of a neurologist and dietitian. It is a high fat diet, with almost no fruits and veggies allowed, which is a huge change from what Harper is used to eating. Now, she has to digest a lot of butter, heavy cream, oil and mayo. Understandably, her stomach is not happy. She started vomiting the second day and we are now into day 4 of the diet and she is still not tolerating it well. Suffice to say, I am trying to be patient, but I'm getting tired of having butter thrown up all over me. I want this to work for our family, but how much can I take before Harper and I reach a breaking point?

************

 We've been on the diet for about a month now. I knew it would be labor intensive and time consuming but even my assumptions were a complete under-estimation of the amount of stress it would place on me, and by extension the rest of Twingate Central.

Now, my bedtime is pretty regularly midnight to 1am.
It takes me between one and two hours a night to prepare food and bottles for Harper for the next day.
All her food has to be calculated into a computer program which ensures her caloric intake is appropriate and that her food fits into the 4:1 ratio required by the diet (4 parts fat to 1 part protein and carbohydrate combined).
All food has to be weighed to a tenth of a gram. I've had to buy a lot of different specialty products and supplements to comply with the diet guidelines.
Last week, I went through a quart of heavy cream and four sticks of butter.
All her supplements and anti seizure medications have to be ground into a powder, mixed with water and liquid stevia and given to her orally because she can't have the sugar present in standard liquid medications. Preparing the meds and supplements (she has six total) takes me about 30 minutes twice a day.
Oh yeah, and I have another toddler and a newborn who still doesn't sleep through the night.

This is freaking ridiculous.
There I said it.
 But, I won't stop.
That's right, you heard me.

We're seizure free again and it's worth every minute of lost sleep.

Harper has a gait trainer now which she stands in daily and we hope she will soon be using it to move around. She scoots around on her butt assisted by her right arm and leg. She's using her iPad to communicate choices and answer yes and no to basic questions. She's thriving. If she can keep up this pace, so can I.

Plus, there's this little dude who keeps me smiling.

Poor guy - everything he uses is pink!

Mr. Walter

And, of course my other sweet girl is doing wonderfully and is a joy.

Pool party!

Silly kiddo.

So, despite some set backs, there are many bright spots.
Keep 'em coming, Universe! That's what's keepin' me going.
Don't think I needed to say that, but, there, I did anyway...

Ten years ago today

I am staring at the date I just wrote on the bag of breast milk I'm about to put in the freezer.
6/5/12.
Ten years ago today my dad died.
So much has happened in the past decade. I think almost every day about what it would be like for my dad to be alive now. It breaks my heart that my kids will never know their grandfather.
But it occurred to me while staring at today's date, that had my dad not died in June 2002, I might not be standing here with this breast milk at all.

When my dad was diagnosed with terminal melanoma, my life spun out of control. His illness was brutal and it was heartbreaking to watch him wither away. I had already been drinking a lot but watching him die sent me into an alcoholic frenzy that increased in magnitude and scope once he passed away. I was fired from two different jobs. I had very little money and what I did have I spent on beer. My relationship with Dave, although we loved each other very much, was tenuous because of my emotional state and my alcoholism. In January 2004, a year and a half after my dad died, I hit rock bottom and entered an outpatient rehab program where I sobered up and started to get my shit together. What finally convinced me to get help? Aside from several embarrassing and dangerous drunken incidents, I finally realized that checking out of my life to deal with the fact that my dad had lost his was completely absurd and absolutely backward.

I truly believe if my dad hadn't died, I would have continued to drink, for much much longer. I think Dave probably would have left me (and I wouldn't blame him one bit considering how awful I was to be around while drinking). Even if he hadn't left me, I don't think I would have found the inner strength I needed to be a good wife or mother had I not been through the life altering experience of losing a parent and then the arduous task of introspectively rebuilding my life. And I sure as hell wouldn't have been equipped to handle what's gone down with my pregnancies and children in the last few years.

My dad taught me so much - creativity, empathy for others, humor, how to write and the importance of family, in addition to so much more. But, perhaps the greatest lesson he taught me was through his death, and it was the most important one of all. Grief and loss can be debilitating and seem never ending. But on the other side of those feelings there is a life to be lived, and you only get one shot, so you better show up for it.

I wish so badly that my dad was alive today to see my beautiful kids and continue to teach me what I want so badly to learn from him - parenting. But, would any of it be here for him to see? I'll never know. What I do know is that ten years later, he's still as much a part of me as he was the day he died. Guess he's already taught me what it means to be a good parent after all.

Tomorrow is the day!

Eliza (l) and Harper (r) came to see me in the hospital a couple of times

 For anyone who struggles with depression - full disclosure: I do - hospital bed rest is not the most conducive environment for achieving the best outlook on life. You're in a room alone for 75% of the day (if you're lucky enough to have visitors or a chatty nurse). You eat in your bed. You sleep as much as you want. You have unlimited re-runs of "Friends" available. You stare at the ceiling, running through every possible scenario related to your pregnancy, your children, your marriage, your life. You wonder what the house will look like when you get home and if your kids will recognize you.

Needless to say, after twelve days in the hospital, I was feeling pretty deflated. But, I had made it to 34 weeks in my pregnancy, my blood pressure was stable and my doctor agreed to let me go home. Hallelujah! 

I made it 48 hours before my blood pressure spiked and I had to come back to good old room 260. The nurses said nobody else even occupied the room while I was gone - it was that quick of a turn around. Apparently being home and not being in control really stressed me out!

Actually, being home was a wonderful break and it was worth every minute. It was so great to be around Harper, Eliza, Dave and my mom for a couple of days, to sleep in my own bed, to eat home cooked food and to not have to listen to the television through that little crackly ear piece they have at the hospital.

Harper is a rock star!

Plus, Harper waited until I was home to do the most awesome thing! She sat up from laying on her back all on her own! Now, I know this sounds small, but for Harper it's huge. In order to sit up, she has to roll to her good side and then use her good hand to push herself up to sitting. She's been getting stronger and making a lot of progress in her gross motor skills, but everything up to this point was small and incremental and you would only notice it if you knew her well and were able to pick up on subtle changes. But, walking into her room to get her from a nap and seeing her just sitting there, smiling, knowing what it took for her to get to that position was pure heaven! I mean, it brings tears to my eyes just thinking about it. I'm so thankful she gave me that memory to hold onto while I'm back in the hospital.

My final pregnant photo!

But, I'm about to have plenty of other memories because the doctor feels like given my long term blood pressure issues, it's time to deliver Tiny!!! My sweet little boy is scheduled to be delivered by c-section tomorrow at noon. I'll be 34 weeks and 3 days pregnant at that point and, although I would have loved to make it further, I'm feeling pretty good about where I am. At this point it seems like every day longer that I carry Tiny with this high blood pressure is like rolling the dice with regards to my own personal health - mental and physical - and it's not worth risking that any further.

The most difficult part about Tiny's delivery is the fact the he will have to be in the NICU for some period of time. That has really been one of the biggest driving forces of the last few weeks is to do everything I can to keep this pregnancy stable so he would be able to go home with me from the hospital. To say that I'm not disappointed it has come to this would be a lie. When I first found out I was pregnant, I was so excited about the possibility of a "normal" pregnancy. I spent a lot of time imagining what it would be like to be able to hold my son from the moment he was born and breast feed him right away, to have him in my lap as they wheeled me to the car to head home. However, I find myself adjusting my expectations again. You'd think after everything I've been through in the last two years, I would have learned my lesson, that I'd be better at even setting these expectations to begin with. But, what kind of life would I lead if I didn't imagine my ideal outcome and then challenge reality to live up to it? I'll never know because that's not how I roll...

 5-11-12 seems like as good a birthday as any. Can't wait to meet my son tomorrow!!



**I'm going to try to get Dave or my sister to post updates here tomorrow, but it might be Saturday, when I am lucid, before I get a picture here.  Facebook is a more likely possibility.

Benched

Emotional memory is a ruthless beast. It perches in your subconscious, lying in wait for something to trigger its attack. A smell, an experience or a time of year can send you back to a place you thought you had left behind, had recovered from, or at least didn't expect to visit again.

I was reminded of this as I left my twin toddlers in the car with my husband, drug my suitcase and pillows, 32 weeks pregnant, tears in my eyes, into the lobby to admit myself for hospital bed rest due to high blood pressure.

Damn. Here I am again.

This is the same point in my pregnancy, same time of year, same reason I was admitted two years ago and ultimately had to deliver my girls eight weeks early. Except this time I am leaving two adorable, needy toddlers behind while I sit in a drab room, thinking of what I would be doing at home, wishing my stupid body would just do something the "normal" way for once. It's absolutely infuriating.

And yet, the decision to leave what was no doubt a stressful environment at home - taking care of my twins, one who has special needs while watching my blood pressure rise - was an obvious choice. Emotional memory does serve a purpose. Anticipating another baby in the NICU was enough to send me crawling into the hospital bed, admitting that there was no way I could "take it easy" at home.

First I was upset. I spent all of Wednesday at my own personal pity party playing the "why me?" game. Then I woke up Thursday morning after the first uninterrupted night of sleep I've had in two years thinking, "I could get used to this!" and simultaneously praying my kids don't end up in therapy with abandonment issues.

I'll be here at St. David's North Austin Medical Center until Tiny enters the world or I reach 34 weeks, whichever comes first. I've received steroid shots to help Tiny's lungs mature and my doctor's feeling is that since 34 weeks is the point at which naturally occurring labor would not be stopped and there would be a slimmer chance of a NICU admittance, that's as good a time as any to send me home feeling comfortable that whatever happened next would be OK for me and Tiny (we do have a name, but I'm not ready to tell the entire blogosphere yet).

I'm currently 32 weeks, 4 days. That leaves 10 days and counting of trashy mags, horrible hospital food, quirky nurses, television *with* commercials (gasp! My DVR has spoiled me) and only brief glimpses of my family. Plus, I'll be able to update you, dear readers, on what's been happening at Twingate Central for the last few months (short version: A LOT).

Visitors, phone calls, emails, hilarious YouTube clips, and book or movie recommendations welcome.

Coming up for air: A recap of 2012 so far

Well, I told 2012 to bring it on.

I was reminding myself of that as I stripped vomit covered sheets off my bed at 3am on New Year's Eve. Midnight came and went unnoticed as we tried to calm Harper down. We walked her around, we fed her, we sang to her, we let her watch Dick Clark's New Year's Rockin' Eve, but still the crying, oh my god the crying. We were debating whether or not to take her to the ER when the vomiting started. At that point we were sure her shunt had malfunctioned so I covered Harper in bibs, packed her in the car and sent Dave off with her to the ER. Which is how I ended up stripping vomit covered sheets off my bed right as 2012, the year I had such high hopes for, rolled into town.

Turns out, after many tests and as many hours in the ER, it was determined that there was no shunt malfunction, but that Harper had ileus, or basically, really bad constipation. All the anesthesia and pain medication she had been given after two back to back surgeries had caused her bowels to come to a halt, causing a very painful backup. Sounds pretty straightforward, but she was in the hospital all of New Year's Day, came home, spent another night crying and then we took her back to the ER on January 2 and ended up spending two more nights in the hospital.

We emerged triumphant, many poopy diapers later, and returned home for good on January 4, almost exactly one month after Harper's first surgery.

In that month, we spent 16 days in the hospital, endured two surgeries and two long ER waits, moved to a new house, had family visit for the holidays, made it through the first trimester of a pregnancy and fixed up our old house to get it on the market. Without question, it was the most stressful month of my life thus far.

Reunited and it feels so good!

 I've spent the last two weeks regrouping and enjoying having my family all in one place.

Check out those cheeks.

Her hair is coming back!

Harper is doing tremendously well! All her therapies have started back up and I hope that with those pesky seizures out of the way, she will make lots of progress. Her incisions are healing nicely, especially the large one from her hemispherotomy. She has some huge chipmunk cheeks from all the steroids she's been taking, but she is happy and constantly smiling. Honestly, that's all a mother could hope for.

Eliza has learned how to smile for the camera

 Eliza is as feisty as always, toddling around, accumulating a larger vocabulary and generally being a big "helper" around the house.

I'm 18 weeks along now and we found out that we'll be adding a little boy to our family come June! Hmmmm...now that we're not just the Twingates, what should we call ourselves? Ideas?

If you've called or emailed me to say hi in the last month, I truly appreciate your support and I have started to play catch up on my phone and email communication. You'll hear from me soon! The prayers and kind words of many friends and family have meant so much during this time. I am disappointed that I have been unable to truly let people know how their love and kindness have lifted us up and helped us get through this experience.

Now that this month is behind us, we're coming up for air and oh how sweet the oxygen is!

I haven't given up on 2012, either. 17 days down, 348 to go. This time, I think the odds are in our favor.