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There are several of these water tanks with air bubbles throughout Children’s Hospital Boston. It seems like the kids like them, which of course means, I like them.

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We stayed at the Fairmont Hotel Copley Plaza last weekend. It we pretty nice. I took some video of the ornate lobby, and even used my iphone and the Pano app to get a panorama photo.

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They have three of these newer Ms. Pacman / Galaga Cocktail Coin-Op machines in the family lounge area. Bonus is they’re free! I’ve only played once, but showed some younger kids how to play. I felt like Michael J. Fox in Back to the Future 2, in the Gunslinger scene. “Oh, that’s a baby’s toy.” Yeah, kid, yeah.

Today is the second day where Eve is kept sedated. She is on a breathing machine to take the strain off her lungs. This is basically a tube that goes down her nostril, and down her airway. She has a neckline that delivers drugs like Morphine and Versed to keep her asleep to keep her from waking up. Her other lines include a peripheral IVs in her hand and foot, a tube in her other nostril going to her stomach to suction any gas buildup, tubes coming from her chest to drain any blood or other fluids from her heart, a line into her atrium to test pressures, and a couple wires coming from her chest in case they need to use an external pacemaker.

It sounds like a lot of stuff, and it is. I have a few pictures, but have chosen not to post them. She’s a little swollen today, a bit more from yesterday. She looks pretty good, honestly I was expecting a lot worse. I guess looking at the big picture, it’s just a small bump in a long road for her. The first 24 hours are critical for her recovery, and the doctors and nurses say she’s doing great. I don’t know if they’ll wake her up today or wait until tomorrow. They needed to give her a paralytic drug last night because she started to move around quite a bit. It was a bit frightening to think that she was already trying to wake up. Our biggest fear is that she’ll be in pain. The docs have assured us that she’s on plenty of pain medication and the Versed is like a Lithium, so she’ll have no memory of this experience.

Annamarie and I stayed at the Devon Nicole House for heart families last night. There’s probably a little over a dozen shoebox sized rooms with a double bed, and sleeper chair. It’s very cozy. I used the chair combined with a blow-up mattress, and let Annamarie have the bed. Honestly, I think I got the better end of the deal. We woke up this morning, and walked right over to the hospital (making a quick pit stop for my coffee). We’re just spending time at Eve’s bedside.

So here’s the email my wife sent to Northwest Airlines commending a flight attendant:

We would like to commend the flight crew, particularly Cathy, on flight
1400 from Minneapolis to Boston (3:25 departure) on April 7.  We were
flying with our 3 month old daughter to Boston for open heart surgery.
We had alot of gear and required oxygen for her safe travel.  Cathy
checked in on us throughout the flight, helping get the O2 going and
adjusting the delivery mechanisms for a baby.  She even made sure we had
some extra snacks to tide us over as the evening commute from airport to
hospital was going to be hectic.  In an era of “on your own” this was a
nice treat.  It made our anxiety a little less during a crazy time.
Please pass along our gratitude.
Paul and Annamarie Saarinen (and baby Eve)

So here’s the email we get in response:

Thank you for sharing your concerns regarding the service provided while
traveling with us.  On behalf of everyone at Northwest Airlines, I
sincerely apologize for letting you down in so many ways.

I hope I have been able to resolve any concerns you have about our
service.  Your business is important to us and given the opportunity of
serving you in the future, I am confident Northwest will not only meet
but exceed your expectations.

We were like wha? Then we got this:

Thank you for contacting Northwest Airlines regarding your recent travel
to Boston, your feedback is greatly appreciated.

I apologize for my previous response to your email.

We appreciate your kind comments regarding the service received from our
flight attendant.  I was pleased to learn she was able and willing to
assist you and your son. We believe our employees are our most
important assets, and I am happy to learn that our flight attendant
exceeded your expectations.

Please know I will be sharing your comments with our Inflight leadership
team so that this employee receives appropriate recognition, on your
behalf.  Thank you for sharing your thoughtful remarks.

I want to thank you, again, for writing.  We appreciate your interest in
Northwest.  Your business is important to us and given the opportunity
of serving you in the future, I am confident Northwest will not only
meet but exceed your expectations.

Well, at least they tried. *shrug*

Eve chillin before her open heart surgery, originally uploaded by TaulPaul.

We had a good weekend. Yesterday we spent several hours at Isabella and Ron’s place, eating and talking. It was so nice that they drove to pick us up from our hotel, and allowed us to get out of the hotel room. The amount of kindness we’ve received is beyond expectations.

I knew today was going to be hard. I don’t think this type of thing is ever easy, or gets easier over time. We were up at 5:00 AM, packing and getting ready to leave. I was a bit crabby, lacking coffee and just my overall concern over getting to the hospital on time.

We went through registration once we arrived, and the anesthesia team came along with the nurses to give her some sedatives. We held her for around 5 minutes before they carried her off. I got a few small smiles from her this morning. I’m happy for that.

It’s hard to articulate my feelings, and probably impossible to put myself into Annamarie’s shoes. I was up last night thinking about how I might not be able to see her smile for a few days, as they may keep her under for awhile to let her heal a bit better. Annamarie is more concerned to see her with a breathing tube. That doesn’t bother me as much. I know I’ll feel better when I see that first smile again. Then I’ll know everything is OK.

Update:  They just make the first incision 9:15 AM ET

Update:  She’s been on bypass for around 45 minutes and everything is going well  10:45 AM ET

Update: They’re warming her up and ready to restart her heart, where they’ll take an echocardiogram to see how the repair went.  If the regurgitation is within acceptable levels, they’ll close her up, and take her off bypass.  If it’s not, they’ll go back in and try to reduce it more.  11:45 AM ET

Update: She’s off of bypass.  Dr. Del Nido will be coming out to talk to us shortly.  12:15 PM ET

Update: Talked to Dr. Del Nido.  She did great!  +4 leak now at +1.  Leaflets a little thick at the ends, may thin out on their own.  Headed to PICU to see her now. 12:45 PM ET

Eve Smiling, originally uploaded by TaulPaul.

Eve’s cath procedure was successful. Dr. Triedman was able to perform an ablation to get rid of the extra electrical pathway that was causing Eve’s SVT. This will help long term, of course, but short term this will allow for a better recovery from the mitral valve repair scheduled for Monday. We haven’t met Dr. Del Nido yet, but that should happen today. He’ll be performing the valve repair on Monday.

We’ll probably get discharged from the hospital today. We’re switching hotels, so I’ll be heading out to get our stuff, and check out of our hotel. Hopefully we’ll be able to get out a little this weekend.

Andre, Isabella, and Ron, originally uploaded by TaulPaul.

I forget to tell you all about this great family that has been helping us while we’re out here in Boston. Isabella, and Annamarie met on a Babycenter.com message board awhile back. Isabelle’s husband Ron, actually picked us up from the airport, and brought us to our hotel. (too kind) I showed Ron my GPS on my iPhone help navigate the chaos which is Boston. He’s an excellent driver BTW.

They came to visit us Thursday night, and brought their wonderful son Andre. You can follow them on Isabella’s blog: http://mom2andre.blogspot.com/

We had a snack down at Au Bon Pain. It was really nice to meet all of them, and hopefully see them again before we leave.

Eve and Annamarie waiting for cath procedure, originally uploaded by TaulPaul.

It’s so hard to see your child in a helpless position. This was Eve’s first invasive procedure. They’ll be placing two catheters in each groin artery that will go to into her heart. The procedure has two goals. One will be to get additional data like pressures in the chambers. The other will be to potential do an ablation to the extra node that is causing her SVT. Eve has Wolf Parkinson White syndrome, on top of her severe mitral valve regurgitation. The ablation procedure will hopefully stop any SVT (Supraventricular tachycardia) for good, and help her recover from the scheduled valve repair for Monday.

It was hard to let go this morning…very hard.

Update: We just got a call that they have the catheters in place, and successfully have taken the pressure readings. Now they’ll be looking for the errant pathway (node) that causes her SVT. It might be another hour or two.

Update: she’s out of surgery, they did the ablation, and got rid of the pathway. 90% chance for no more SVT.