Room Service

I pick up the hospital phone and dial the extension for the cafeteria to order Harper some food.

The voice on the other end answers, "Thank you for calling room service, how may I help you?"

I chortle to myself at the implication - that this hospital is in some way like a hotel which provides room service to its guests. The florescent lights, the vinyl pull out couches that are supposed to pass for beds, the plastic pillows with starched cases, the beeping machines, the bumpy tile floors, the pump of industrial anti-bacterial body wash in the shower and the complete lack of privacy are the antithesis of a hotel experience. There might as well be signs on every door that say "please disturb."

And disturb they do.

Harper is somehow fast asleep in her bed with the sheets that have no mentionable thread count. I'm pretty sure they gave her a rash during our last stay. She was starving and after keeping down some applesauce, I dared give her strawberries and peaches. She threw them up. All over her IV. There was much screaming and writhing as we cleaned her up then some morphine which finally allowed her to relax.

It hasn't even been two hours when the nurse comes back with Harper's steroid.
My child screams as the nurse fiddles with her IV then she falls back asleep.
An hour later, there is a temperature and blood pressure check.
More screaming and then she is asleep again.
Two hours later we wake her up to try to get her to keep some food down so she can take an oral pain medicine.
And the night goes on and on in this fashion.

Harper perfecting her pouty lip after being woken up all night

I lay down between each interruption and try to drift off. The thin walls betray "guests" in other rooms being disturbed as well. The child next door has been crying for hours. I might be irritated if that hadn't been Harper just a couple of weeks ago. I feel so bad for that kid and his parents, knowing they are doing everything they can to calm him. I have a white noise app on my iPhone. I turn it on and put it next to my head, waiting for our next "wake up call."

I come to and realize it has been at least a couple hours with no interruptions. What gives? I realize the nurse must have gotten savvy and been able to do her checks without waking Harper up. That or Harper was so tired and drugged up she stopped giving a crap. Oh well, either way, I welcome the uninterrupted sleep.

Soon, light is shining through the windows. The nurse is back with more meds, a thermometer and a blood pressure cuff.

The doctors start to make their morning rounds. We are told that Harper's CT scan looks good and she will likely be able to go home today. I glance over at her, noticing her puffy eyes and groggy stare. Not likely I think to myself. Maybe if she had been able to get a good night's sleep.

Sure enough, I feed her applesauce and a banana and she vomits it all right back up. I sigh. Back to square one.

We are moved to a room in another ward with a higher nurse to patient ratio where we will be disturbed less often. Harper is taken off the monitors and her vital sign checks are changed to every 4 hours. We are both able to drift off and even though sunlight is pouring through the windows, we both manage to sleep for about three hours straight. Glorious, glorious uninterrupted sleep!

Then, something amazing happens.
We wake up.
I look over and see this.

A perkier HJ

She eats handfuls of cheerios and drinks some apple juice. I dole them out over a period of a couple hours and she keeps them down!

I call for the Nurse Practitioner and tell her we are ready to go home.
"I think she should stay for another night," she tells me, her brow furrowed.
I insist that she let us go, knowing another night of torture will do us both in. The CT scan is clear, she's eating, she's alert and I'm a competent parent I tell her.

An hour later, we're out in the fresh air on our way home.
I breathe a sigh of relief.

.......

She's alseep in her crib now - has been for almost six hours without a peep.

I took a long, hot shower with my moisturizing body wash, walked across my carpeted floor, climbed into my Tempurpedic bed, slid down into my 1000 thread count sheets and laid my head on my down pillows. My own personal hotel.

Screw room service. I'll be happy to wake up to my girls crying from their beds tomorrow morning. The smiles I'll get when I walk into their room will be better than any food they could deliver me in the hospital. I'll make my own damn breakfast, thank you very much!

Broken record

I feel like a broken record.
Harper's surgery went smoothly.
She's been resting all afternoon on periodic doses of morphine.
She's refusing the bottle again.
She is screaming every time the nurses try to do anything to her.
I've been asked multiple times if this is her "normal level of fussiness?" Um, yes.
She scarfed down a bunch of fruit and then threw it all up.
I thought we were going to get out of here tomorrow, but I think that was a fantasy that I should file under "things that happen to children with normal levels of fussiness."
Eliza is with her Mimi and asking for "sissy" all day.

What's different this time?
Well, I just took a peek in the mirror and I'm pretty sure I have a few extra gray hairs.
The bags under my eyes are extra puffy.
Dave can't take off work because he already took a week of unpaid leave for the first surgery so I'm flyin' solo tonight and tomorrow.
I'm pretty fucking tired of being in the hospital. It's lonely, boring and even uglier than I remember.
Harper is no longer calmed by my recitations of "Goodnight Moon."

My mantra - still seizure free still seizure free still seizure free still seizure free.

Yep, I'm a broken record.

And we're back...in the hospital

I had high hopes for 2011.
After everything that happened in 2010 - my complicated pregnancy, the girl's NICU stay, and the discovery of Harper's brain injury -  I just knew 2011 was going to be our year. It started out wonderfully. I was happy to be home with the kids, Harper was  making good progress and we were settling into a routine. Then, came the seizures. I don't think I need to tell you the rest. Suffice to say, the year did not unfold how I expected. And, now, we have almost reached the end.

We've been home from the hospital for almost two weeks. During that time, there was lots of medicine.

Harper's bedtime regimen

We moved. And, wow, it was overwhelming with everything else going on. But, we are happy to be in a larger, nicer space.

Our living room, right before the move

Christmas happened. It was more subdued than usual, but the kids got into the spirit.

Eliza enjoying the holidays

 Harper has had a few good days and quite a few fussy ones.

HJ captured during a happy moment

 
She hasn't been sleeping very well since we came home and her irritability level has been pretty high, even for her. I have been back and forth with the Neurosurgeon's office about the irritability. We tried extending her steroids and pain medicine a little longer. That worked for a few days. Then, last night, Harper woke up about 8pm and cried for four hours straight. I finally got her to sleep and decided an ER trip was not necessary last night, but I called this morning and the doctors and I decided that it was worth heading into the hospital for a CT scan just to be sure nothing weird was going on.

The CT scan today showed some fluid accumulation in Harper's brain, indicating that her body is having a hard time draining the fluid and it is building up, which is likely causing her irritability. She was admitted to the hospital this evening and is scheduled to have a second surgery to install a shunt tomorrow afternoon. The shunt is essentially a valve that drains the fluid from her brain and reroutes it with a tube down her body and deposits it near her stomach. She will have it her whole life.

In terms of brain surgery, this procedure is considered pretty routine. But, it's still brain surgery, which carries similar risks to the first time around - infection and bleeding are the main culprits - and it will involve a couple more days in the hospital. More hospital food, more uncomfortable nights on the pull out couch, more monitors beeping and nurses coming in every couple of hours and more babysitters for Eliza.

I will be glad to get my Harper back though. This fussy, sleepless Harper that came home from the hospital is not the girl I sent in for surgery on December 7. I understood that a certain level of fussiness was expected since she just had half of her brain disconnected, but I was growing concerned that it wasn't abating. If this is what needs to happen to bring her back, so be it.

At least this is happening during the tail end of 2011.
I'm not giving up hope for next year. After all, Harper is still seizure free and that's no small accomplishment.
Bring it on 2012 - I'm ready for whatever you have in store!

Radio Silence

Apologies for the lack of posts.  We've had a few things going on here at Twingate, Inc.

Harper's home!  She's doing well.

We moved Twingate headquarters. We love the new house, but it's been a little crazy managing the move, Harper's surgery and the holidays.

Because of the move we've been without internet, hence the lack of blog posts.

Once we get up and running again, I'll be back with a full report!

Very Hungry Harper

This morning Harper woke up hungry. She ate through one cup diced strawberries, one can of peaches, four silver dollar pancakes with syrup, a dozen goldfish crackers & one cup of vanilla pudding. Whew! It's nice to see that she's getting her appetite back.

You are here

Here we are.

Since the day we found out we were pregnant with twins, it feels like we are following some kind of convoluted map, leading us on a journey of developmental milestones, medical diagnoses, therapy equipment, medications, surgeries and various emotional states.

Behind us is the twin to twin transfusion syndrome, discovering Harper's brain injury, anger at our situation then accepting our kids for who they are, excitement watching both girls make developmental progress, navigating the Early Childhood intervention program, then the seizures, the medication, and now surgery.

From reading other parenting blogs and talking with other moms, I can predict a bit of what lies ahead. Likely much much more therapy for Harper, braces for Harper's legs to help her walk, Eliza will start school and join sports or dance, we have a new baby on the way too so there will be even more navigating once it arrives.

I imagine a marker on the map at our current location, Dell Children's Medical Center, post-op that says, "You are here."

And, you know, where we are is really not too bad.

Harper is doing great! She has definitely exceeded my expectations for what I thought she would be doing at this point after surgery. She sits up on her own. She's started eating pretty much like she was before surgery. She is using her right hand to hold toys and manipulate her pacifier. She didn't have any complications from the surgery, like infection or hydrocephalus. She hasn't had anything even remotely resembling a seizure. I'm feeling pretty awesome about taking her home and getting her started on more therapy to get her left side working.

She's still not taking a bottle or drinking much fluid, but the speech therapist feels like that will come with time and it makes sense that liquids would be harder for her to coordinate after the kind of surgery she had.

I'm at the hospital waiting with baited breath to find out if the Neurosurgeon is going to let us leave today. Oh please, oh please, oh please! I think it's time for us to move to the next region on our map of life. I'll follow wherever it leads us, but I'm really hoping that today that is back to our house with my sweet Harper in tow.

Optimism Town

I was feeling pretty good after writing my last post. Even though Harper was making slow progress, I felt confident that she was on the right track, heading for an awesome recovery. Riding the high of my "special needs kids move at their own pace" empowerment, I kissed Harper and left the hospital Saturday night ready for a peaceful sleep.

But Sunday didn't dawn as I had expected. Hospital fatigue set in. Harper's irritability was at an all time high yesterday and she threw up all the applesauce I fed her. We had to give her anxiety medicine just to get her to sleep. Just like that, my attitude went from Optimism Town to Doomsville.

I miss Harper's smile. I wish she wasn't knocked out on pain meds all day. The hospital is tedious and boring. We finally moved out of PICU into the Intermediate Care area, but it still looks like we will be here for quite a few days to come. I miss sleeping next to my husband in our bed. Shit, I miss *seeing* my husband. Eliza is starting to get clingier and tired of the rotating cast of babysitters.

Honestly, I didn't post yesterday because I was embarrassed about my attitude shift and didn't need guests at my pity party.

Then, wouldn't you know, as I was dragging ass into the hospital this afternoon and my crappy attitude was reaching it's peak, there was this:

Eliza was excited to see "Sissy" and our whole family was in the same room together for an hour or so and it was awesome. Turned my frown upside down!

Plus, the Hemispherectomy Foundation sent us a sweet package with some toys, books and a wonderful fleece blanket. The Foundation was started by a family whose child had a hemispherectomy and they are a great place to connect with other families who have been there, done this. It really made me feel like we aren't alone. Plus Harper threw up all over her other blanket so we got the new one at a perfect time ;)

Harper enjoying her new flowery blanket

Overall, Harper is doing better. The doctors think her irritability is a combination of the steroids she's taking to keep the swelling down, the around the clock pain medication and possibly a little extra blood from surgery floating around in her head, irritating her brain. I add in my own hypothesis - she just had her freakin' head cut open, she can't move her left arm or leg and there are people poking her, squeezing her and shining lights in her face every hour. I mean, come on! Not to mention, Harper has always operated at a little, um, "higher frequency" than other kids so I'm not too surprised. I was just hoping surgery would make her *less* irritable. They've started her on an anti-seizure medication that doesn't help seizures, but seems to help kids sleep. Whatever works.

Other than the fussy factor, she's been eating a little more. We're stopping the 24 hour narcotic pain medicine cycle and going down to Tylenol so I hope once she's more alert, she'll be awake more to eat.

For both her Physical and Occupational Therapy sessions today, she got out of bed and sat while supported on the floor. She tried to play with a few toys, although she has a tremor in her right hand which is not permanent, so she wasn't too successful. But just seeing her out of bed was encouraging.

If she has a good night, we'll be moving into the regular care area of the hospital tomorrow and from there we would go home. I hope that is within a few days, but I'm not visiting Doomsville again if it doesn't happen as soon as I would like. Optimism Town has better restaurants, less traffic and still no seizures...

One step forward, two steps back.

When the girls were in the NICU, one of the nurses told me the very first day we were there, "Don't be discouraged if the kids have a bad day. Their stay in the NICU is a roller coaster and you have to be prepared for that from this day forward."

Not a day has gone by since my kids were born that I haven't thought how right she was. Never is that advice more apt than when you're dealing with a developmentally delayed, special needs child. I regularly tell myself, "This is a marathon, not a sprint." If I didn't remind myself, I would be spinning around in a bipolar haze, elated one day that my daughter reached a much anticipated milestone and then crushed the next when she encountered a set back. Special needs parenting is no place for sweeping dramatic generalizations. My kid is who she is and she will get where she needs to go when she's ready and not a second before. None of what she does is influenced by how much I stress out about it. Too bad, because if it was, she would be a baby Einstein by now!

Originally, the neurosurgeon told us we would be in PICU for one day, maybe two.  We're going on four days now. Thanks to that NICU nurse, I was prepared for this ride.

Harper's fever has abated but she still has the weird rash that keeps appearing and disappearing on different parts of her torso. The current thinking is that it is a heat rash, but no one is really sure. Her blood pressure was a little high and her heart rate a little low. So we had another head CT to make sure nothing weird was going on. It was normal. So nothing in particular is keeping us in PICU besides a general feeling that she needs some extra eyes on her and that's just fine with me.

 Then, there's the feeding issue. Sigh. Our good friend NG tube has returned. The doctors explained that by now they would want Harper eating close to the same amount that she would be at home. Well, she wasn't even close to that. So in went the tube. The good news is she seems much calmer and satisfied now that she has some food in her belly. And, she got so pissed off when they were putting in the tube that she lifted up her left arm twice to try to pull it out! Now I know what it's going to take to motivate her in therapy...

We'll try again with the bottle and baby food in the morning. The tube is only temporary...the tube is only temporary...the tube is only temporary...click click click...the roller coaster car climbs up the track.

In better news, the swelling in her scar has gone down and she's able to partially open her right eye. And no more seizures...wheeeee! Down the roller coaster we go.

Eventful Day

It's been a bit crazy here in PICU room 235 today.

Last night was pretty miserable.  Harper couldn't get comfortable. We tried several different pain medicines. She got a rash. She was itchy. We thought the rash was an allergic reaction to the medicine. She got benadryl. She got steroids. The medication cycle went on and on. She finally calmed down around 5am and just as she and I were starting to get some good REM sleep, the barrage of doctors, nurses and therapists started at 8am.

I try hard to advocate for my daughter without being too pushy or rude, but when operating on three hours sleep and trying to protect my girl from being woken up when she has finally gotten comfortable after major brain surgery, you better believe that I will be gritchy if I need to. Hell no you aren't about to do occupational therapy on her! Um, yes, you can wait a couple hours before trying to give her the bottle! And, I definitely don't think it's imperative that you change the trash and check the supplies in our room right this second!  Back off people!

Finally my nurse took pity on me and hung this on the door.  Thanks Steve - you rock!

After I shooed everyone away, Dave said the afternoon was pretty peaceful.

The doctors were threatening an NG tube (feeding tube in the nose) if Harper didn't eat anything today. I tried the bottle and yogurt with no success, but daddy swooped in to the rescue and got her to eat a jar of applesauce and about 3 ounces of milk. Whew! The NG tube has been taken off the table for now as long as she continues to eat. NG tubes are a huge part of feeding babies in the NICU and I will admit the thought of Harper having to get one again was just a little bit too reminiscent of that other traumatic time in her life.

Harper, L, Eliza, R, with their NG tubes in the NICU

She's been resting pretty well all day with minimal pain medicine and is starting to open her eyes and be a little more lucid. The rash she had is back, along with a fever this time. They aren't sure if it is an infection so they are testing her blood and urine and we should know in the next couple of days if that is the culprit. In the meantime, they are treating it with tylenol and benadryl. I really hope an infection is not in our future. But, I'm not going to start freaking out about that yet - just one thing at a time.

Thankfully, I'm headed home to sleep in my soft bed. Dave thinks our "nook" in the room is pretty cozy, but I definitely beg to differ.

Dave in the "relaxing nook"

I'll end again by saying no seizures - yipeee!

Holding Pattern

It's day 2 of Operation Seizure Free Harper.

Time passes at a strange pace when you're at the hospital.  At some points, it feels like the day is dragging, minutes passing at a snail's pace.  Other times, when the doctors are on rounds and the nurses are popping in and out for scheduled meds and vital checks, an hour or more will fly by in the blink of an eye.  That's pretty much how it's gone today - a few quick hours and a bunch of loooooong ones.

The swelling in Harper's head is much more dramatic this morning.  Her right eye is even swollen shut.  I've been reassured that's normal, but it is pretty grotesque. I already thought her scar had a Frankenstein quality to it and now with the swelling, my comparison isn't too far off.  But, of course, I love my little Frankenbaby!

She still seems to be in pain, although we've been able to spread out her morphine to every 2-4 hours instead of every hour like yesterday.  But, it's making her itchy. Of course, one drug begets another.  We've given her some benadryl and she seems more comfortable. Her pacifier has been a lifesaver too. She's able to suck it much better today and she has been grabbing it and putting it in her mouth all by herself.

Her hemoglobin had dropped this morning so she received a blood transfusion. They were worried that this could indicate a bleed in her head, but a CT indicated that everything is fine. The blood loss was probably just residual from surgery. Whew!

Overall, it's been a pretty mundane day, which is just fine with me. We had quite a few friends and family here yesterday, but today has been quiet in terms of visitors. I've enjoyed the time to rest and read, but I hope to see some friendly faces in the next few days.

Meanwhile, at home, Eliza has been hanging out with her Mimi, having a grand old time getting 24 hour one on one adult attention! She has been pointing at Harper's crib and high chair saying, "sissy?" As soon as Harper gets out of ICU and into a regular room, we'll bring Eliza up here so she can see what's going on.

I'm on the overnight shift tonight. It's like having a newborn all over again! ;)

Still no seizures!  Wahoo!

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.

Tired

I'm tired.
Tired of pumping my titties like a cow.
Tired of the never ending laundry.
Tired of the crying, the mutiny that occurs when it is time for a feeding or sleep.
Tired of never being able to just sleep until I wake up.  Without earplugs.
Tired of never being able to finish a cup of coffee or a meal while it is still hot.  Or even while sitting down.
Tired of hearing that damn purple toy elephant play that same damn song over and over.
Tired of doing Google searches for "twin sleep training" and "infant stroke"
Tired of reading books about what my babies should be doing and then wondering if I'm being a good parent.
Tired of being a bitch to my husband - I mean a huge bitch - even though I know I'm doing it, but the nuances of decent human interaction have escaped me.
Tired of never talking to my friends.  Never even wanting to call them back because all I really have to say is how tired I am.
Tired of washing bottles and breast pump parts and little tiny spoons and bowls.
Tired of feeling old when I have to hoist myself up off of the floor 20 times a day.
Tired of hearing one of my daughters take a huge dump through the baby monitor as I am drifting off to sleep, knowing it will be waiting for me when I wake up.
Tired of wearing this saggy nursing bra that barely holds up my giant boobs.
Tired of stubbing my toe on bouncy seats and swings and jumparoos because our house is too teeny tiny for two babies.

I AM SO FUCKING TIRED.

I know, it's such a cliche: a tired mother of infant twins!
Go ahead and judge, Universe.  I'm too exhausted to care.

...And we're back! Ten things that have happened since I last posted.

It's been a while since I posted...blah blah blah...have no time because of these babies...blah blah blah...new year's resolution is to post more...blah blah blah.

OK, now that I have dispensed with the apologies and promises, on to my post!

I read a lot of TV and music blogs and this is the time of year when all the critics are doing their Top 10 lists. So, I thought I would throw up one of my own to catch you up on the happenings in the Twingate household.

Here they are, in chronological order -

TEN THINGS THAT HAVE HAPPENED SINCE I LAST POSTED:

10. I quit my job.
Technically, this happened before my last post, but since I hadn't written about it. I think it counts. I miss my co-workers and it's been a bit of an adjustment, but overall, it was the right decision. Otherwise, I wouldn't be able to do this in my pajamas all day (I know, you're jealous):

9. Halloween!!

Eliza (L), Harper (R)

Yeah, I know, I'm working on my picture taking skills, but it was really all I could do to just get them to stop squirming long enough to get this picture. Oh my God - so cute!!

8. Raspberries!!!
Since they figured out how to make their new noise, the girls can't get enough of the raspberry.  Here's a video of Eliza during a very serious raspberry session:

7. Eliza and Harper rolled over.
Eliza mastered the tummy to back roll first, in early November, and Harper followed about a month later.
Here's Eliza in action:

They are working on the back to tummy roll and are really close to getting it.  I'm horrified that they are going to be mobile soon.

6. Thanksgiving.
For some unknown reason, I decided to host family here at our house!  Most of our family lives out of town and I thought it would be easier for them to come to us than for us to travel with the girls.  Well, that was sort of true.  We spent all day cooking and then Harper and Eliza got overstimulated with all of the people and, wouldn't you know, just as soon as we sat down to eat, they staged an all out mutiny and we ended up taking turns walking them around the block.  Oh well, we enjoyed the leftovers on Friday!
Luckily Dave's dad (Papa Jim) got some awesome shots of the girls.  Behold!

Eliza in her "Johnny Jump-up" for the first time

Eliza (l), Harper (r)

5. We found out Harper has a visual impairment.

Harper in her bumbo

We found out while she was in the NICU that Harper had a stroke before she was born.  I haven't written much about this here, but I plan to.  We noticed that Harper wasn't making as much eye contact as Eliza and we took her to the ophthalmologist where she was diagnosed with a cortical visual impairment.  The physical structure of her eyes is fine, but because of her stroke, her brain is having a hard time receiving the visual data.  She has 20/400 vision and some peripheral vision loss, which makes her legally blind, but she can see things that are close to her face.  This could improve with age, but we will have to wait and see.  She is happy and active and, now that she has been diagnosed, we can start to get her the help she needs.

4. Dave got a promotion.
He is now a Senior Software Engineer, promoted from Junior.  He works hard and he sure deserves the recognition.  Go Dave!

Dave and his "Mini Me" (Eliza)

3. Our first road trip with the girls.
The week before Christmas, we packed the girls and pretty much everything we own into the car and headed to Dallas to see our family and friends.  The drive went as you would expect.  We stopped quite a few times for feeding and crying and what not.  The visit was fun, but exhausting.  We made the rounds from my mom's place to Dave's dad's place and to see a couple other friends.  The girls did pretty well being passed from person to person.  I have to admit I was having some baby performance anxiety ahead of time.  Will they let other people hold them?  Will they scream the whole time?  What if they're not cute enough!!!???  But, my fears were unfounded.  Everyone had a great time hanging with us and the babies.

 

Aunt Gabrielle & Eliza

Mimi & Eliza

2. Harper and Eliza's first Christmas.

Harper is not amused.

It was just the four of us on Christmas Day and we spent the day lounging and playing with all of the new toys the girls got.  Obviously, they aren't old enough to understand what is going on, but that didn't stop us from dressing them up in outfits and taking pictures!!!  Here are a few for your enjoyment.

Harper (l), Eliza (r)

Mommy & Eliza

Eliza (l), Harper (r) in the outfits they got from Aunt Lenny

1. Still breastfeeding.
I guess this isn't something that happened so much as it is something that is still happening since I last posted.  People ask me a lot so I thought I would let you know, that, yes, it's true, I am still breastfeeding both girls at 7 1/2 months!  They have exclusively eaten breast milk since they were born.  We're venturing into solid foods starting tomorrow, but I plan to continue until they turn 1.  It's not the easiest thing in the world, but it sure is cheaper and it is the right choice for our family.  Plus, it's a good tool to have in my mommy arsenal.  As I always say, "That's a job for the Mighty Boob!"


Well, there you have it.  My top ten list.  Now you're all caught up.
Back to our regularly scheduled programming...