Saturday, October 24, 2015

This Month's Crisis

Wednesday, October 7 started out as a normal day.  Both girls went to school in the morning, and I enjoyed my weekly massage at the chiropractor's office.  Keegan and I were anticipating a trip to California for a friend's wedding in just a couple days.  Annabelle came home from school on the bus, and I took her upstairs to put her down for her nap.  She felt warm, but I figured she was probably warm from the bus ride and I planned to check her temperature after her nap.  I put her in her crib and went downstairs to do some housework.

After less than an hour, I heard Annabelle coughing and crying on the monitor.  I was disappointed because I was hoping she would sleep longer.  I checked the monitor, and she was coughing and squirming, but I hoped she would fall back to sleep.  I continued to hear coughing and continued to check the monitor.  On my last check I saw something strange.  Annabelle looked like she was jerking rhythmically.  I thought I'd better go upstairs and check.  When I saw Annabelle in her crib, there was no doubt that something was wrong.  Her eyes were open but unseeing, her whole body was jerking, and she was gasping.  Her face was ashy gray, and there was a puddle of drool near her mouth.  I picked her up and carried her downstairs.  I took her temperature, which was 102.6, and then I called the doctor, who told me to call an ambulance.  I dialed 911 for the first time ever and tried to be calm and responsible.

The ambulance arrived quickly, along with a fire truck, and later a third vehicle.  The firemen/EMTs were so nice, competent, businesslike and calm.  They put Annabelle on a stretcher and loaded her into the ambulance, where they gave her a shot of Ativan to stop the seizure.  After what seemed like a long time to get situated, we headed off to the hospital with lights and sirens blazing.  Annabelle did not stop seizing after the first shot.  Her left arm continued to jerk.  The EMTs called the hospital for advice and then administered a second shot of Ativan.  This slowed Annabelle's breathing, so she started to receive oxygen.  When we arrived at the hospital there was a scary flurry of activity.  I didn't know that her breathing had been impacted, so it was very confusing and overwhelming to see so many serious people working on her tiny body.  During this time, Keegan arrived and we watched the chaos together.  Eventually, she stabilized, and we had a chest x-ray and CT scan done.  Both showed no major problems, but her arm did start twitching again during the CT, so more medications were administered.  We waited around for a while before being told that Annabelle would be taken by helicopter to VCU in Richmond where she could be seen by their pediatric neurology team and monitored in the Pediatric ICU.  Annabelle was born there and did her NICU stay there, so we knew we would get good care there.

I didn't want to leave Annabelle, so I volunteered to ride in the helicopter.  Keegan went home to see Sophie and collect some supplies for the hospital stay.  The helicopter ride ended up being right at sunset, and it was beautiful.  I told Keegan that we should start a helicopter tour company for the historical triangle area so that people could experience that ride without all the heartbreaking worry and anxiety that marred my trip.  I was in the front of the helicopter with the pilot, and two very competent and kind EMTs were in the back with Annabelle.  I could hear them talking on my headset, saying that Annabelle was awake, aware, and feisty, which was reassuring.

"Honey, why are you taking pictures at a time like this?"
Ok, so it is kind of a cool helicopter.
At VCU we got checked into the PICU and got Annabelle set up for an EEG to monitor her brain activity.  She was unhappy and fussy, but also very out of it from the seizures and the medications.  It was hard to see her like that.  I felt really worried and scared about both the seizures and the medications, and thoughts of lifelong distress and heartache plagued me.  I was glad when we could settle in for the night.  I fell asleep with Annabelle in her hospital crib and then took a chance to rest in a room down the hall that the Ronald McDonald House provided for families.  Keegan slept in the chair in Annabelle's room.
Snuggling helped her get to sleep.  The smiley face on her head wrap is that EEG tech's signature.

Annabelle had several more seizures overnight.  They were subclinical, meaning that they showed up in her brain activity on the EEG, but we couldn't see any symptoms in person or on the video recording.  She was put on more medications to make sure that all the seizures stopped.  The last one was recorded around 3 a.m. that first night.  We didn't see any more while she was in the hospital.  In the morning, the doctors decided to see if she would remain stable on just one medication, which turned out to be the case.
On lots of meds and feeling wonky, but willing to show off her EEG leads.
The next two days were boring hospital days.  Annabelle continued to improve, slowly coming out of her fog and beginning to smile and act more like normal.  We had to cancel our long-anticipated vacation to California, which was so disappointing.  Our situation was brightened, though, by a visit from my best friend and seizure expert Laura and her daughter Isadora.  On Friday, they moved us out of the PICU, and we spent our last night on the regular children's floor.  On Saturday morning, we were discharged at last.

Looking at a card from Sophie.
Post-EEG hair:  nothing to scoff at.  The nurse said it made her day to give Annabelle a bath.
Going forward, we are not sure what this new chapter of our lives will be like.  Because Annabelle's brain is abnormal, it is likely that the seizures are due to her brain abnormality, and not simply a febrile seizure (a type of seizure caused by fever in young children and often outgrown).  Her seizure disorder will likely be a chronic condition.  We are very hopeful that her seizures will be controlled by the one drug she is currently on, and that the side effects will be manageable.  So far, we have been home for almost two weeks.  Annabelle is tired and has some tremors, especially at night before bedtime, when she is fatigued.  She has been happy and lively, though, and so far we are cautiously optimistic.  We will see her neurologist this coming Monday and hope to learn more then.

Sunday, August 24, 2014

What We Did This Summer

Tomorrow Annabelle will be sixteen months old, so stay tuned for some photos and an update later this week.  It has been a busy and exhausting summer, so I'm sorry that I haven't kept everyone up to date.  Here is a quick update on what we've done:

Ate dinner out for Sophie's birthday.

Ate decadent chocolate cupcakes at our dear friend and former babysitter Miss Jane's wedding.

Did lots of fun crafts at the library.

Read books together.

Visited Keegan's cousin and her family at Topsail Beach.

Took a trip to Busch Gardens with cousin Sammy.

Visited the doctor - but at least we had a smile while we were there!

Rode Sophie's birthday bike, complete with doll seat and chalk holder for making chalk trails.

Played at the neighborhood playground.  This is Sophie's impression of a summer snowman!

Picked blueberries (and did lots of other things) with Sophie's best friend Portia.

Watched TV together.

Took ballet for the first time.

Sunday, June 22, 2014

Happy Birthday, Sophie!

We had Sophie's fourth birthday party at the pool today. She shared her party with two other girls from her class at school. Portia's birthday is today, and Sianna's is two days after Sophie's. It was cool and overcast, but the rain and thunder stayed away. 

I had such a great time taking Anbabelle in the pool, chatting with my friends, and watching Sophie enjoy her friends and family. 

I can't believe little Sophie will be four in less than two weeks!

Thursday, June 19, 2014

New Skills

Look what Sophie can do!

She has been very resistant to going underwater, but a little peer pressure from her best friend did the trick. She was so thrilled and had so much fun looking at everyone's legs and feet underwater. 

Annabelle has also been enjoying the pool. 

She loves to ride in her float, to suck pool water off the float (gross!), and to be bounced in and out of the water. 

On Father's Day, she also tried out the swing,

the slide,

and Daddy's shoulders. 

We are so thrilled that she is enjoying life more this summer than last summer, which was the Summer of Reflux.

Also, I caught her this week pushing her wipes box off the changing table and swiping her lotion off the changing table, giggling with glee both times. We are in so much trouble. 

Thursday, May 29, 2014

Annabelle's Thirteen-month Update

Well, it hasn't been too long since my last Annabelle update, so this will be brief.  In the past two weeks, Annabelle has continued to hone her rolling and sitting skills.  At therapy last week, she was able to sit completely independently for thirteen seconds.  It doesn't sound like much, but it's a starting point.  I was also thrilled that during her thirteen-month photo session, she was able to sit for a short time propped up in the Boppy pillow, which she hasn't been able to do before.

Yay, Annabelle!
I think Annabelle's understanding of the world is improving.  Mom and I have both noticed that she is "helping" when we get her dressed now.  She straightens her arms to put them through her sleeves, Mom said she pulled a sleeve down yesterday, and I could have sworn she pulled her onesie down off her face this afternoon.  She shakes her head yes and no all the time, sometimes at appropriate times in the conversation, although that may be chance.  And tonight, before eating, Mom signed "eat" (putting your hand to your mouth), and Annabelle put her hand to her mouth in imitation!  Annabelle's first sign!  Also, she has been turning pages in her board books.  I get it started for her, and then when she is able to get her little fist under the page, she pushes it over to get to the next page.

Eating is still a struggle.  Anything with a texture lumpier than applesauce is highly suspect to Annabelle, and sucking things off the spoon is the preferred method of eating.  But she seems to enjoy eating a great deal and always smiles excitedly when we sign eat and show her the spoon.  I'm really hoping that some oral skills will click with her in the next couple months.

Thursday, May 22, 2014

My Girls the Movie Stars

The girls have been extra adorable lately, so I wanted to share some of their antics.

Annabelle is getting more and more engaged with her world, especially with her beloved birthday balloon.

She is also starting to understand that she can imitate (and maybe even communicate through?) gestures, which is so exciting I can barely stand it.

Not to be outdone, Sophie has been really into music lately.  She and her friend Portia treated us moms to a concert yesterday.

All this activity is exhausting!

Thursday, May 15, 2014

Annabelle's One-Year Update

Annabelle is a year old!  She continues to make great strides towards some big milestones.  She has been rolling with greater success, both from back to tummy and tummy to back.  Her supported sitting is improving by leaps and bounds, although if you take the support away, she immediately scoots her bottom out from under herself.  Our physical therapist hypothesizes that she may be a scooter rather than a crawler, but we shall see.  Actually, today was the first time that crawling was mentioned as a goal on the horizon, which is super exciting!

Annabelle's vision has noticeably improved recently.  She seems to be able to see and to be more interested in objects further away.  For example, when I hold her and other people come over to say hi, she will look at them.  Before, she would not focus on things outside of about a foot away from her face, so this is big progress.  Her hand-eye coordination has improved correspondingly.  She can now reach for a hanging toy with purpose and grab it.  She loves looking at books, and pats every page energetically and with laser-like focus.  Sometimes it even looks to me like she is trying to turn the page, although she is not able to do that yet unless I help her.  It must be close to a year ago that I was crying in the NICU thinking that Annabelle might be blind and never able to look at books.  Obviously, we are very glad that that NICU ophthalmologist was wrong!

We are making slow progress with solid foods.  We are still working on purees.  Anything with a slightly lumpier texture is unlikely to pass muster with Annabelle, although she does try almost anything.  We've been experimenting with pureeing chunky soups and rice and with fruit combinations, and she has been accepting most everything we try.  She is eating about twice as much at a sitting (up to two teaspoons!), and can deal with bigger spoonfuls (more than one molecule at a time!).  So I am encouraged, although it doesn't look like we will forego the feeding tube any time soon.

Another encouraging skill is that Annabelle is very responsive now to imitation games and will imitate some sounds and gestures.  She has learned to nod her head yes, with much concentration, and she loves to give kisses, which is about the cutest thing you'll ever see.  She has not started babbling yet, and I am a little afraid that she will not have the mouth control or coordination to speak.  But I am trying to be patient.  And she is certainly motivated to communicate - she makes all kinds of cooing sounds, clucks her tongue when she wants kisses, and kicks her legs delightedly when instructed to "run, run, run."

Annabelle's birthday was spent with a surprise visit to the hospital with a horrible chest cold, which turned out to be pneumonia.  She was a trooper and went home the next day after a full regimen of breathing treatments and antibiotics.

Cool as a cucumber in the hospital.
The day after her birthday we had an impromptu barbecue celebration, and we were able to get some birthday photos.

Annabelle's slinky party was moved back to this past weekend, and we had a wonderful time.  We are so lucky to have made such wonderful, supportive friends here.  Annabelle enjoyed her birthday balloons, her first taste of chocolate ice cream, and playing with Grandma while Mommy enjoyed chatting with her friends, Sophie ran amok with the other kids, and Daddy played cornhole outside with the guys.

More chocolate!  MORE!
So proud of her sitting!