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.

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!