On the other side

As Aunt Lenny said in her previous post, surgery went perfectly as planned and Harper is now recovering in the PICU.

I literally almost passed out when I saw her - she is so pale and has a huge scar along the right side of her head. It is hard to see your baby in obvious pain. She has woken up a few times crying and uncomfortable and the nurses have quickly given her morphine and then she drifts back into the beyond.  We expect her to be like that for about 24-48 hours.

Her scar is starting to swell a little bit and they said her right eye might swell shut.  She's on steroids to help with that.  She is moving her left leg a little and wiggling her left toes!  It's awesome that she's already doing that.  We knew there would be some left side weakness but weren't sure to what extent.  The fact that she has already started showing movement on the left side bodes well for her in terms of a starting place post-op.  Oh, and so far, no seizures!!!

Dave and I are exhausted.  I managed to grab a little nap once we got into the room, but I will sleep good tonight, I know it!  Dave is going to stay here at the hospital overnight and I'm going to head back home to be with Eliza.

More tomorrow....

Quick update: Harper's out of surgery

I will leave the details to her parents, but I just wanted to let everyone know that the surgery went smoothly and Harper the little trooper is sleeping off her sedation now. She looks peaceful in her little bed in the PICU, and an army of caring, knowledgeable Dell Children's staff are looking after her. (Natalie may need a nap before she gets a chance to post again.)

Waiting

It's quiet here in the waiting area. Now that the nurses have stopped asking questions and bustling about.  Now that they took my sweet baby away to fix her brain. Now, it's just me and my thoughts while I wait four hours to get the call that the surgeon is finished disconnecting half of Harper's brain.

We were up bright and early this morning. We had to be at the hospital at 5:30am.  Seriously?  But once we got here, things moved pretty quickly.  There was the anesthesiologist, a variety of nurses and we spoke to the neurosurgeon. I feel confident about the team of professionals working on Harper and it was comforting to meet all of them in person.

The moment I had to say goodbye to Harper was heart wrenching as I knew it would be.  I've been thinking a lot about what it would be like to kiss her little forehead for the last time and watch the nurses carry her away. It was, as you would expect, difficult.  I cried.  Then, I wiped away those tears, focused on a positive outcome, and came here to wait.

We are supposed to get a call every hour with an update on how the surgery is going.  I'll try to post here if we hear anything interesting. We expect the surgery to take about four hours and then Harper will be moved to the ICU and we will be able to see her immediately.

Thanks to everyone who has called, emailed, Facebooked, texted, prayed and sent positive energy our way. We would be lost and lonely without all of our wonderful friends and family around to support us.

Here's what Dave is up to:

I think I'll be joining him soon...

Preparations

Harper during a video EEG in September

We made the decision that Harper would have brain surgery in September. After months of tests, doctors appointments, medications and many many seizures, she's scheduled to have a right hemispherotomy on December 7.

I'm an impatient person. I prefer immediate results. The waiting, the testing, and the discussion leading up to this surgery has been excruciating.

We had our first video EEG in May to confirm that Harper was having seizures.  In the following months, we have been on a long list of medications including Trileptal, Keppra, Zonegran, Topamax and now Vimpat.  None have really made a dent in any of Harper's seizures.  She still has 25-30 a day. Her developmental progress has come to a virtual standstill.  All the therapies we participate in feel like running in quicksand.

In September, our neurologist suggested that because almost all of Harper's seizure activity seems to be coming from her right brain, that she could be a good candidate for brain surgery to reduce or eliminate the seizures.  The concept of surgery is that once the doctors can isolate exactly where in the brain her seizures are originating, they remove the offending tissue and hope that this stops the seizures in their tracks.  There are many different types of epilepsy surgery depending on what kind of seizures and where they are coming from.

We talked about it and Dave and I agreed that we could spend many more months cycling through tons of medications, hoping one would work, losing time during which she could be developing, or take the surgical approach, hopefully giving her some seizure relief and affording her the opportunity to reach her full potential.  It was a shitty decision to have to make - send your one year old child into brain surgery or watch her seize all day - but the choice seemed clear.

Mommy and Harper at the Birmingham airport

Of course, before we could schedule surgery, we had to perform more tests.  Another video EEG and another MRI in September showed seizure activity on the right but it wasn't as cut and dry as the doctors had originally thought.  Of course, we were sent for more tests, this time to Birmingham, AL for a magnetoencephalography. We had to wait a couple weeks for the insurance to approve the test and another several weeks after that to schedule it.  We ended up in Alabama on Halloween with Harper in the huge MEG machine, having her seizures recorded.

Harper and the MEG

We've been to Dallas to get a second opinion.  We've been to a Developmental Psychologist to have Harper's developmental progress assessed. We are going to see a Rehab Physician to determine what therapy Harper should have after surgery.  All the while, we've been keeping up with physical therapy, occupational therapy, speech therapy, orientation and mobility and vision instruction.

Finally, last week, a panel of neurosurgeons, neurologists, EEG technicians, neuropsychologists and other professionals met to discuss Harper's case, ultimately determining that a hemispherotomy was the best course of action given her situation. Basically, the right side of her brain is so malformed after her prenatal stroke, that it wouldn't be prudent to spend time picking and choosing what abnormal tissue to remove.  It makes more sense to disconnect the whole hemisphere and let the left side take over.

We know there is a long road ahead.  She will come out of surgery with hemiparesis (weakness) on her left side.  It will take her a couple of months to even get back to functioning at the level she is now.  She will never have fine motor control in her left hand.  She will lose all peripheral vision in her left eye. She will probably walk with a bit of a limp. Therapy will continue at an even more aggressive rate than we are currently maintaining.  There is a 50% chance that she will start to have seizures originating in her left brain.

But she could walk!
She could talk!
She has a 50% chance of being seizure free!

This is considered a pretty radical surgery.  To us, it isn't radical at all to hope that our little girl could come out of it with half of a brain but a whole seizure free life ahead of her.

Harper Jo, November 2011

I'll be posting more as the surgery nears and plan to update the blog with progress reports once we get into the hospital.  We will likely be there for a week.  Positive thoughts, prayers, and visitors are welcome!

Wordless Wednesday: Walking soon!!

Eliza showing off her standing skills.  Photo courtesy of Papa Jim.

Decisions, Decisions

Dave and I at our baby shower, after surgery but before we knew about Harper's stroke.

20 weeks.  That's how long I was able to enjoy my pregnancy before everything came crashing down.  20 weeks of excitement about having twins.  20 weeks of smiling and enjoying my growing belly.  20 weeks of being out in the world as a pregnant woman, proud of the babies growing inside me.

Then, the quiet ultrasound technician with a worried look.  The doctor telling us it was Twin to Twin Transfusion Syndrome, stage IV.  Packing for Houston.  The woman from Texas Children's Hospital telling me, "We can't make any promises, but we can give you hope."  The long, long night on the hard hotel bed, knowing it could be the last night with my babies.

The next morning, a flurry of ultrasounds, more doctors, surgeons and then, everything stopped for a moment while we made our decision.

The options, unthinkable:
- Terminate the entire pregnancy.
- Eliminate one twin (the sicker baby, which was Harper).  This would give Eliza an 80% chance of survival.
- Have a Placental Laser Ablation surgery, providing a 10% chance that both babies would survive.

Dave and I sit in a conference room looking at the floor, holding hands.  I know I should be thinking of what might happen, even if both babies survive.  The chances of heart problems from the hydrops or possible neurological issues for either of them.  But, my focus is singular:  keep both babies alive. 
"I just can't make the decision to eliminate a baby," I tell Dave.
"Then let's have the surgery," he says.

And that was it.  The moment that would change our lives forever. 

Of course we didn't know it at the time.  So much more would happen over the next two days.  The Chaplin came to pray with us before I went into surgery and it was then that I finally lost control and the tears came quick and fast.  It finally sunk in that the chances of my twins making it to their nursery was very, very small.  But, something about the way Harper had been moving and kicking me all day was impossible to ignore.  Was she suggesting I should have hope?  I decided yes and I held onto that hope through the surgery.  I was awake for the whole thing - a cruel necessity of the procedure - and I tried to remember Harper's message while they were separating my placenta.  In my hospital bed afterward, I could feel Harper moving all night, letting me know she was holding on.  The next morning, when the doctor arrived with the portable ultrasound machine to look for the babies' heartbeats, he only confirmed what I already knew - my girls were still there. Ten percent chance be damned!

The rest is history.  Both of my sweet girls made it through and are here with us today.  The pregnancy was long and every minute after that surgery was scary as hell.  Later came the NICU and the "routine" head CT that they "didn't expect to turn up anything."  But, turn up something it did - my biggest fear - a stroke during the Twin to Twin Transfusion Syndrome that had caused Harper's right brain to form abnormally.

...and the implications of our decision 15 weeks earlier came crashing down with the force of an anvil...

Which brings us to today - the therapists, the seizures, the visual impairment, the emotional outbursts, the strain on our marriage, the exhaustion.  My sweet, sweet Harper Jo and Eliza Scott.

Dave likes to consider what *might* have been, to wonder aloud if we made the right decision.  He is analytical in that way - turning things over in his head to see each side, shiny or dull.  He follows the decision tree down and over, through endless possibilities, examining our lives and offspring in each scenario.  It comforts him, I think.

I am the exact opposite.  It's just too emotional to let myself go there.  I force myself to stay in the present so as not to get carried away by the future or past.

But it wouldn't matter anyway.  Every time I do let myself think back to that day, reviewing the options we were given, I make the same choice, even knowing what I know now.  It was the only choice, really, because it never mattered what medical issues they may have.  In my eyes, they are perfect because they are here with me, against all odds, right where they should be.

Wordless Wednesday: Her Smile Returns!

Even if only briefly, it's great to see Harper smiling again...

Uncensored Truth

A picture never tells the whole story.

Things have been difficult here at Twingate Central.

Harper started having seizures a few months ago and things have spiraled out of control since then.  Her seizures are more like full body spasms.  They cause her left arm to flail up and her body to lurch forward.  Often she hits her head on whatever she is sitting behind.  It is very hard to watch.  Furthermore, we have been cycling through various medications to try and control her seizures.  They cause side effects which Harper cannot tell me about so she mostly whines and is upset all day.

Eliza is crawling.  I am so proud of her and, yet, it only serves as a reminder of all that Harper could be doing.

Eliza sleeps through the night.  Harper wakes up once or twice most nights, her sleep interrupted by a seizure.  I'm still exhausted.  I drink a lot of caffeine.

Eliza babbles all day and says several words, including "bear" and "daddy".  Harper screams.

Harper now has 5 therapists helping her with various areas of development.  There is a therapist at our house at least once, sometimes twice, a day.  I'm always in my pajamas.  Her seizures have halted her progress and the hours of therapy we endure feel like slogging through mud.  It's a full time job coordinating our therapy appointments and doctor visits.

It's too freaking hot to even think about going outside.  We are going stir crazy in the house.  Many days, I just load the girls in the car and drive up and down Shoal Creek for 45 minutes so I can have a few minutes to myself.  Sometimes I listen to NPR, but most of the time, the news just depresses me  more.

After the girls go to bed, I zonk out on the couch and watch TV for a couple of hours before I pass out.  We eat take-out more than I would like to admit.

I wonder what Harper will be like in 20 years.  I'm afraid I will never experience empty nest syndrome because she will be dependent on us forever.  It is extremely hard for me to admit this.

That, dear readers, is the uncensored truth.  I haven't posted lately because I have been finding it hard to be positive and I'm too frustrated to be hopeful.  I'm embarrassed about this.  I know Harper and Eliza need me to be upbeat and do everything I can to create an environment where they can be successful.  I truly feel like I am doing that.  But only through my actions.  My emotion is elsewhere.  In a dank, dark space, far from the exersaucer and play mat.

Parenting is a marathon, not a sprint.  I'm sure this is just a rocky time and we will pull out of it and move on to happier things.  But, until then, this is a tough place to be.

Wordless Wednesday: Fun in the Sun

Eliza at the pool!

Thoughts on being a mom after my first Mother's Day

Mother's Day 2011 - Harper (L), Eliza (R)

I was *almost* a mom last Mother's Day.  Only a couple weeks after Mother's Day 2010, Harper and Eliza made their entrance into the world.  Now, almost a year later, with a little mothering experience under my belt, I have collected a few thoughts and observations on being a mom to twins, a mom to a special needs child and just generally a mom...read on!

1) Being a mom is hard.
It doesn't matter if you are a mother to one child or six, if you have twins or quintuplets, if your kids are "normal" or have special needs, if you work or stay home.  Every mom has their own experience and it is hard for every single one of them.  One of the most common things people say to me when they see me with my girls or find out I have twins is, "I don't know how you do it!"  Well, I just do.  Just like every other mom.


2) It's tempting to judge other moms.
Before I had kids, I was the WORST at passing judgment on other moms.  I was pissed off that my friends who had kids weren't around anymore.  I was annoyed that it felt like the moms I worked with were always running off to deal with their sick kids. I was so sure that mom at the grocery store shouldn't have her kid out at 10pm or was yelling too much at her screaming child or was giving him too much junk food...and then I had my girls.  And, guess what?  I've been every single one of those moms and more, I'm sure.  It is impossible to know what any other mother is going through unless you are in her shoes.  Now, with Harper having a visual impairment and other special needs, I am super conscious of the fact that you just never know another mom's story and therefore, you shouldn't act like you know what's best for her or her child.


3) You can never prepare for how your life will change once you have a child.
Oh I thought I was ready for kids.  I thought my marriage was ready for kids.  Maybe it's because I had a complicated pregnancy or because I have twins or because one of my twins has special needs that adjusting to motherhood has been so hard.  But, I doubt it.  It seems like the shift to completely taking care of another human being is so profound that you just can't know what it's like until you do it.  The sleep deprivation hits you hard, you start to worry about lots of little things that you never thought you'd care about, you don't have time for the same things as you did before.  Underneath it all is a drive to give your kids the very best of yourself and of the world around them, but that doesn't make the drastic shift in priorities any less jarring.  On the other hand, you also can't know how your baby's smile will wilt your heart and fill you with joy until you see it!


4) Having preemies with special needs makes every milestone reached that much sweeter.
I still tear up when I think about the first time Harper rolled over.  It seemed to small, but yet I knew all the time in hospital, the hours in physical therapy and the determination it took for her to get from her stomach to her back.  Every milestone has been that way.  I can't wait until Eliza starts crawling (she is so close) because she has been building up to it for months  now!  I know it's exciting for all moms, but damn, it's exciting when I see a picture of my girls at 3lbs in the NICU and think of how far they have come.

5) Quitting my job was the right decision in so many ways.
Yeah, I miss getting dressed in heels and putting on makeup.  I miss seeing all my friends in the office and having a chance to talk about the latest happenings in the world with other adults.  I miss the sense of accomplishment that I felt at the end of a big event that I had spent months planning.  But every morning when I go into Harper and Eliza's bedroom to say good morning, their sweet smiles say it all: they need me at home right now.  I'm so grateful that I have the opportunity to be home with them and all Harper's therapies and doctor's appointments are basically a full time job.  Any doubt I had about this decision is all gone.


Mother's day was wonderful this year!  I'm sure I'll have even more thoughts next year...stay tuned!

Wordless Wednesday: Pep Talk

Favorite Things

We recently created a play area for the girls in our living room, complete with a ton of awesome toys and a Disney fairy play mat.

 But I'll be damned if Eliza's favorite toy isn't the remote control:

Those of you who know me, even just a little bit, know that I love me some television.  If you read the blog, you know that I recently started letting the girls watch some TV so I could get a few minutes to myself, but that I have been feeling a little guilty about it.  Well, I'll tell you what makes me feel insecure about my parenting skills - the fact that my 9 month old daughter seems to know exactly what to do with the remote control.  Yikes!  Guess I better ease up on the boob tube.

 

Meanwhile, Harper has had to start wearing an eye patch over her left eye for 30 minutes a day to help strengthen her right eye.

Luckily, she was already familiar with the concept, as it is prominently featured in her very favorite book, "That's Not My Pirate!"

And, I took the girls on a trip to Dallas to see some of my very favorite people and we spent a day at one of my very favorite Dallas places - the Arboretum.  Everything was in full bloom and we had an amazing time!

Eliza (l), Harper (r) at Dallas Blooms

From left: Harper, me, Eliza, My cousin Renee and her son Reilly who is the same age as the girls at the Arboretum

These are a few of our favorite things!

Bad mommy!

I've just started letting the girls watch a little TV in the mornings after they eat their solid food.

I'm not one of those people who declared I would never let my kids watch television so I don't feel as though I am breaking any kind of moral code I set forth for myself.  But, I hadn't anticipated I would start using the boob tube this early.  So, every time I set up the high chairs and put on Yo Gabba Gabba, I walk away feeling a little guilty and mutter under my breath, "bad mommy!"

There are other times too:

Forgot to change diapers and remember several hours later because I notice Eliza's crotch sagging - bad mommy!
Didn't do all of Harper's physical therapy exercises every day - bad mommy!
Heard Eliza crying in the baby monitor at 6:30am and let her cry for an extra ten minutes so I could snooze - bad mommy!
Pick the pacifier up off the floor, lick it to clean it off and give it right back to my daughter - bad mommy!
Don't change out the bath water between baths so one girl gets a luke warm wash in second hand water - bad mommy!

I'm not beating myself up over it, though.  It builds character.  And, those 15 minutes of quiet every morning are worth all the self deprecation in the world.

Harper (l), Eliza (r)

The R word? I don't think so.

Miss Harper Jo

We took Harper to the neurologist today for a check-in.  Dave asked the doctor if we should be concerned that Harper isn't really babbling yet.
"Does this indicate a pretty severe delay?" he asked.
"Sometimes, kids have delays that they can overcome and move on to function normally.  And, other times, 'delay' is a euphemism for mental retardation, and that seems like it could be the case with Harper," the doctor said.

Wait, WHAT?
I could feel the tears welling up in my eyes.  The "R word" was like a slap in the face.

Harper suffers from a condition called Lissencephaly, which is a migratory cell disorder, caused by a stroke that she suffered in utero.  This means that her brain is malformed and there is no way to predict what level she will be able to function at when she is older.  Her visual impairment is a product of the stroke and will, of course, be a hurdle as she grows and learns.  But, we have been told that Harper will have a normal life span and, so far, she has overcome every challenge she's been given: learning to eat, rolling over, vocalizing, tracking toys, and she's close to sitting on her own.

I really like our doctor.  He's been encouraging, but honest from the beginning and has emphasized that only time will reveal whether Harper will be capable of living independently.  I don't think he's trying to set limits on her life, but I was not digging on his choice of words.

I was away from the girls for most of the day because I hired a nanny to watch the girls for a few hours a week so I can get out of the house (thank God!).  The appointment was weighing heavily on me while I was out.  When I got home and picked up Harper, she greeted me with a sweet little smile and it hit me why I was so upset.

Happy Harper

No matter what she is and isn't able to do now or later in life, I just don't think of her as retarded.  I'm not going to say that the word retarded will never have a place in Harper's life, perhaps it will.  I don't deny that she has a long road ahead.  I've come to terms with saying she has "special needs" and "developmental delays."

Will I keep pushing Harper to grow and learn and love her unconditionally?  Hell yes.
Will I continue to be honest with myself about her condition and set my expectations accordingly?  I'm sure gonna try.
Will I use the word retarded to describe her?  Nope.  I'm not ready to go there.

Loving Texas

Harper (L), Eliza (R)

The girls and I have been really enjoying the Texas "winter" lately.  There are some times in the summer when I am just so over the heat and ready to move anywhere cooler.  But, then spring, fall and winter come around and I remember why I stay.

Every time I talk to my sister in Boston, she is telling me about slogging through slushy snow and ice and how the high was in the 30s that day. I have to say, I am not envious!

It's been just perfect weather for walking.  I bundle the girls up in blankets and hats and I am fine in a t-shirt and jacket.  We have  been touring the neighborhood and it is so great to get out of the house and get some fresh air (even if it is polluted with cedar pollen).  Just what I need to reinvigorate after a rather trying couple of weeks.