The Day - Things to be Thankful for!

Past 24 hours.

Monday 7:30pm

Start convincing Jessica to go to sleep in prep for busy day today.

Monday 8pm

In bed, nearly asleep.

Monday 9pm

I look at my watch and say, "it would be really great to go up to sleep now, I would feel great tomorrow."

Monday 10:30pm

Time I actually get off couch.

Monday 10:31pm

Unfortunately wake up Alexis when trying to put her CPAP on.  She wakes up screaming, very unhappy about being awake.

Monday 11:15pm

Shut off TV upstairs, Alexis is falling back asleep but not fully asleep (not asleep enough for CPAP).

Text Matt and tell him he may have to CPAP Alexis because I'll be sleeping.

Monday 11:30pm

I'm asleep.

Tuesday 12:15am

Alexis asleep but snoring/apnea (she has sleep apnea - so I have to wake up enough to put on her CPAP).

Tuesday 2am

Matt returns home (see facebook page for pictures from the Patriots football game)

Tuesday 5:10am

I wake up in a panic.  I think the alarm clock says 6:10am.  I can not read my alarm clock numbers without my glasses on.  It was 5:10am, WONDERFUL.  I woke up 5 mins before my alarm clock.  I get up, eat breakfast (since I won't be able to eat in front of Jessica when she wakes up).

Tuesday 5:30am

Matt awake, to help Jessica up.  Jessica ready to go in super-fast time, she is wearing her pajamas to the hospital.

Tuesday 6:40am

We arrive in record speed at the hospital, less traffic than Monday since we left 30mins earlier.

Tuesday 8:30am

They call Jessica's name and we go back (note that we were told to arrive at 7:15am.... growl)

Tuesday 9:30am

Dr comes out to talk to me (Matt at home to get Alexis on the school bus and then to avoid traffic).  Dr very very uncomfortable with proceeding with catheterization because he isn't sure that it can fix what he sees on TEE (ultrasound that goes down her throat).  We call Matt and Dr talks to Matt.  We agree that we want Dr to try to fix the ASD with catheterization because it's the least impact on Jessica's health.

Tuesday 11am

Dr comes back out to talk.  I had just found out where Matt was, in the hospital lobby.  Send him quickly up to 6 South for Dr consult.  Dr goes through what he tried to do, but said he was not comfortable at all with leaving in a device - that it had the potential to cause the outside wall of her heart to rupture (at some point in the future, he was afraid) and that it would still leave a sizable hole in her heart which could deteriorate over time.  We agree that the only thing to be done next is to decide when to schedule open heart surgery.

Tuesday 12pm

We can go back to see Jessica in recovery.  Jessica reacts to versed / sedation drugs "uniquely".  We only know how Alexis reacts to meds and that is very peacefully.  Too peacefully.  Alexis on sedation drugs is sometimes a little too peacefully (she forgets to breathe, too relaxed).  Jessica is the flip side, too agitated.  It took both me and Matt to try to comfort her and keep her consoled.  Once she could have a popsicle she was much better :-)  Nothing convinces me or Jessica to be happier than some sweets :)

Tuesday 1pm 

Agitation gone, but Jessica wants to wiggle. Me and Matt are assigned to "no-wiggle" patrol.  We said "Jessica keep your legs still about 10,000 times" (EACH).  She was obviously feeling fine.

Tuesday 3pm

We can go for a walk.  We can go to the car.  We can leave the hospital.  Thankfully we didn't need to stay overnight because Jessica didn't have a device inserted :(  We would have liked to have a device inserted and not leave the hospital knowing that Jessica needs open heart surgery to repair her ASD.

But no matter what, Jessica did great with the surgery, she showed how brave she is, they named her the "Mayor" because she was talking to EVERYONE in the hospital.  We don't like the idea of open heart surgery, but who does?  We are in a great place (Boston), we are in great hands (Boston doctors) and we are going to do just fine trusting them with Jessica.

Thanks for all of your thoughts, prayers and concern over the past couple of days,

Catherine

Jessica getting ready.  So CUTE!

PS. The attached video is about ASD repairs via catheterization (what we tried to do today for Jessica): 

http://www.youtube.com/watch?v=kPfH-D2O9mA

Jessica's Day

Today was Pre-Op for Jessica's Cardiac Cath.

We were told to arrive at 7:30, we got there 7:35 (traffic on 93 South).  Then we were expected to be there between 6-8 hours depending on how things were moving along.

We were lucky because 

a) the cardiologist did not want to see us (he had just seen us in June for Alexis' follow-up appt)

b) the cardiologist did not want to do another echo (he had as much information as he could see from her echo in Sept 2010)

c) the people actually moved us along

Thankfully all of the people in the waiting room were entertained by singing, dancing, jumping, and other things - like washing down all of the chairs (she felt the urge to clean).  The cleaning urge does not come from me.  But I imagine the jumping around like a crazy animal might come from me.  Thankfully about the time we gave up and went for lunch, they decided they had "enough" and they called us back to tell us

Arrive 7:15am (that's really early... especially when we are 30miles away - sometimes 30mins or 2 hours)

Don't eat after 11:15pm (I'm not waking her up at 11:16 to see if she's hungry, because if she is, she can't have ANYTHING)

Don't drink after 5:15am (this one concerns me, do I let her drink something at 5:15 or just go to the hospital)

Yep.  That's our program.

Here is a picture of Jessica being a grump in front of the Xray machine.

4 yrs, 4 months

So, my husband asked if I had abandoned the blog. I haven't tried to, I just forget to post on it. I have been posting lots of pictures on Facebook, which means I forget to post photos and status here.


The title of this post.

Here's where we were when Alexis was 4yrs 4months and 14 days old.

That is a picture taken the day of her heart catheterization. She is focusing not to worry about why she is in the hospital. She's definitely the professional.


On Tuesday, Jessica will be 4years, 4months and 20 days old.

For our family, that means that Jessica will also be in surgery to repair her heart defect - an ASD.  It is a routine procedure that Children's does everyday (literally).  We are assured that Jessica will do fine.  We are using the same surgeon who did Alexis' surgery - Doff McElhinney. 
For Monday (pre-op) and Tuesday (surgery), I'm more concerned about her "willingness" to stay still when we're in the waiting / hospital time delays. She'll be asking tons of questions, but I think she'll be excited that people are asking her all of the questions and interested in her. 

We'll try to post here and facebook to let people know about our progress on Tuesday.

Catherine

Alexis Speech Sessions (#2-#3)

Here are 3 more videos showing Alexis interact with the speech output device at the CHARGE Conference.
#2

http://www.youtube.com/watch?v=Qtcpx33Qyxo
#3

http://www.youtube.com/watch?v=DZfo5eg-0hM

And then a video of Jessica pushing the happy birthday buttons and then saying Happy Birthday!
#4

http://www.youtube.com/watch?v=caTe2mtK8dY

Alexis Speech Session at CHARGE Conference (#1)

Here is a video of Alexis interacting with a speech output device (it is saying "want").
The theory is that when we all speak, we are making a motor movement in our mouth.
For Alexis, her hands are faster than her mouth in interacting.  And many kids like Alexis, that's why they can do sign language before speech - the hands are better movers than their mouths. (it helped Jessica).
For us though, Alexis is very interested in speech and we are hoping that giving her a voice output device will help her to request the things that she wants to do around the house and school - allowing her to interact with more people and communicate her needs.
Here is the first video - courtesy of John Halloran who is working with Alexis on the device.


http://www.youtube.com/watch?v=kqolvHkc5-Q

Family Vacation after CHARGE Conference

We've been busy :)
Does that summarize everyone's summers?  I know moms who have had their second babies and been better than I have about posting to their blogs..... :| 
No excuses.  We are recently back from CHARGE conference (will write another post about this one).  But we took some great pictures after the conference.
We went to Blizzard Beach - an awesome waterpark, but didn't take any photos with camera - too busy with the fun rides!
We went to Sea World, we had some time to take pictures because we were HOT of being outside.  We ate at the Shark exhibit (we didn't eat sharks, we just ate in the underwater viewing dining room).
I have a mouth full of drink, I'm not angry as Jessica says about this picture. Alexis enjoyed the air conditioning of this restaurant.

A gorgeous picture of Jessica!  My cutie pie is growing up so fast!

The view of the Shark exhibit from our seats.

 Alexis entertaining herself in the heat.  Jessica barely able to walk because of the heat.

 The killer whales show!  Fantastic!

 The next day we went to Aquatica, and we had a cabana.  That was wonderful, as you see my kids can lounge by the pool.  Alexis LOVED Roa's Rapids, a body rapids ride where you wear your life jacket and float down the river.  She and Matt did it 10 times.  A fun time!!!

Jessica and Matt in the wave pool.  They were having a great time as well!

How Alexis slept last night

It's been a fun night.


2:15 awake and crying

2:45 awake and not stopping crying, we came downstairs

3:45 better and ready back to crib

4:15 in crib laughing hysterically

5:15 still giggling and laughing in crib, so loud that Jessica awakes

5:20 matt pleaded by grumpy no sleep wife to take Jessica downstairs to play

6:15 jessica washes her face in yogurt while matt took shower

7:00 matt notices that alexis' poo'ed her bed, herself, everything

7:15 alexis clean, matt mad, wife re-awake, Jessica ready for school

7:25 writing this message