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...