Surgery Update: 11:30pm - No Improvement

Unfortunately, Evie did not respond well when she was taken off of the heart and lung machine, so they are going to move her to a modified machine called an ECMO machine, which does nearly the same thing, but will be connected to her through the neck, rather than to her vena cava and her open chest.

The docs are going to close her rib cage, but not sew up her sternum just yet, but they will close up her skin. She will be connected to the ECMO for "several days" while being heavily sedated so that her heart and lungs can rest and recover from the ordeal of the surgery. After a few days, a plan will be made to wean her off of the ECMO machine.

Right now we've been moved to the family waiting room in the PSHU while they close Evie up and make the connections for the ECMO in her neck, and bring her up to her room, so we will be able to see her tonight for little bit before we go home for the night.

So, this isn't the way we hoped the surgery would end, but hopefully there is a bright light at the end of the tunnel. Thanks again to everyone for their continued prayers and support.

Surgery Update: 10:00pm - Wait and See

The good news is that Evie did just fine during the procedure to replace her conduit/shunt with a larger one. Now we're back to where we started from a few hours ago: the docs are going to slowly wean her off of the heart and lung machine and hope that her lungs relax and that her body can pump enough oxygenated blood to her lungs with the help of this new, larger conduit tube. The nurse will talk to us again in an hour and hopefully will have good news for us.

Surgery Update: 8:30pm - Setbacks

Things aren't going as well as we had hoped. Evie was off the heart and lung machine for about an hour, but her oxygen levels did not return to normal, so she was put back on the machine. Her surgeon, Dr. Ilbawi, wants to replace the conduit/shunt he just put in place with a larger (wider) one to hopefully increase her blood flow.

So basically: they're starting over. This conduit isn't from a donor baby, but might be from an animal (the cardiac nurse thought maybe a cow? I'm sure Gavin will think that's cool someday). The bit of good news is that her heart was still beating strong. We'll get another update from the cardiac nurse about 10pm. Please keep praying for little Evie!

Surgery Update: 7:00pm - Going Well!

We just spoke with the cardiac nurse, and the bulk of the surgical procedure is done! The conduit was successfully attached to Evie's right atrium and then connected to her pulmonary artery. Evie heart was then restarted successfully and right now medications are being applied to try and re-regulate her natural pump and flow.

Her oxygen levels were a little low so they have not removed her from the heart and lung machine yet. When the machine was turned off, her oxygen levels dipped down to about 50, so it was started back up and right now the docs are adjusting the medications to try and help her body get back on track. These are all known side-effects/complications of using a heart and lung machine. One of these side effects affects the lungs and makes them "stiff," so meds are being applied to help them return to normal.

They are going to keep her on the machine for about another 15-20 minutes to see how the meds affect her and if her oxygen saturation levels improve. The nurse will be back out in an hour.

On a side note, I have a medical correction to post for the 3 or 4 pediatricians who read this blog. I previously called her shunt a "Sano" shunt. However, that is not technically correct because a Sano shunt doesn't have a valve in it, while Evie's does. Unfortunately, there isn't a "cool" name for her conduit so I'm just going to keep calling it a "Sano with valve" shunt. :)

I have also learned how the heart is stopped and started back up again (and it doesn't involve electric shocks like I thought!). A medicated solution is applied to the heart to help it slow down, and it's started back up by merely removing the solution that stopped it, and the heart usually starts pumping again on its own. If you want to see a baby's heart start back up, check out this video and go to the 7 minute mark.

Surgery Update: 5:00pm

Just spoke with one of the cardiac nurses who said that Evie is doing very well. They've already completed the unifocalization portion of the surgery (that involved detaching one of her remaining MAPCAs and connecting it to the shunts they put in last year) and they're getting ready to attach the Sano shunt to her pulmonary artery.

She has not been connected to the heart and lung machine yet because they haven't needed to stop her heart yet. However, her heart will have to be stopped to attach the Sano shunt and valve to her heart.

Here's a pretty good picture of what the completed work will look like. The white tube on the right, identified in the picture as a "RV-PA PTFE Shunt," is what they're attaching to Evie. We also learned that the conduit tube will not be artificial gortex, but is living tissue: it's part of the pulmonary artery of the donor baby, which has a valve inside it.

We're relieved that living tissue is used so that hopefully it will grow with Evie, and not have to be replaced with a bigger shunt in the future as she grows older. God bless the soul of this donor baby and his or her family, wherever they are, so that Evie can live.

While I've been Googling in the waiting room here, we stumbled upon several pediatric heart surgeries that are online. This one is a good example of what is happening to Evie right now. Amazing.

The cardiac nurse will update us again around 6:30pm.

Live Blogging Evie's 3rd Surgery

It's about 3:30PM as we're writing this and Evie has been in the OR for about an hour. The nurse just gave us an update and told us that all of her I-V lines have been put in (4 in total), and that after the first incision is made and they've opened up her chest, they are going to first clear away any scar tissue that may have formed from the last two surgeries she had before hooking her up to the heart and lung machine.

We were able to speak with Evie's surgeon, Dr. Ilbawi, before she was taken back and got a better explanation of the conduit that is going to be attached to her heart. The more common name for it is the Sano shunt (scroll down on that page a bit for a picture) and it is a relatively new technique with a very low mortality rate. It is an intermediary step towards our ultimate goal of not having her heart pump mixed blood anymore, i.e., pumping oxygenated and deoxygenated blood to her lungs and body.

Below are a few pictures from the morning. The complete set of photos can be viewed here. The nurse should be back out around 4:30 to give us an update.

Thank you to everyone for your kind notes, thoughts and prayers!

The "mirror" photo below is somewhat of a tradition for us now. We've taken one every time Evie has had a surgery. You can really see how much she's grown in these past two photos.



Evie had about an hour to kill so she explored and visited the other patients.



Making the rounds.



"Hmmmmmm...."



"I think I see a cavity in there, Daddy."



Evie is double texting all her girlfriends before her surgery.

Crackly water bottles never get old. She would end up taking that water bottle back into the OR with her.

Evie was given some "happy juice" (i.e., Versed) that made her very mellow. We were a bit apprehensive about her getting the Versed because it had the exact opposite effect on her brother, Gavin, when he received it a few months ago when he had his urinary tract procedure. It turned him into a feral baby. Luckily, Evie was just stoned.

"Hey Mom, let's get a cheeseburger!"

"Where's the next party?"

Here's Evie with her surgeon, Dr. Ilbawi. He's going to take very good care of her!

Surgery Day

Evie's surgery is scheduled for 2pm today. We really wished she could have been the first case of the day, but the cardiac nurse told me that, "belive it or not, the other babies ahead of her are more complex."

We are supposed to get there by 12:30, and we hope that she actually goes in at 2:00. You never know with the early surgeries; they could run longer than expected. Because of that, we probably won't have any updates til 4:00 or 5:oo pm.

Until then, enjoy this video of the twins playing their "keep-away hands" game!

"How do you stop a heart?"

Yesterday, Nana Cermak and I took Evie to her pre-op physical before her big surgery on Thursday. It didn't take very long (about 2 hours), but it was traumatic nonetheless. The nurse practitioner on the surgery team explained the surgery in depth, gave Evie a short physical checkup, and then drew 4 vials of blood (which she really hated).

Nana said it was one of the most traumatic things she had to watch happen to poor little Evie because she screamed so much, the poor little thing. To the nurses' credit though, they only had to prick Evie once and the whole thing was over in about 3 minutes.

The surgery will involve tying up a few more MAPCAs, but the main thing will be attaching a conduit from her heart to her natural (and underdeveloped) pulmonary artery. The medical term for this is a palliative Rastelli procedure with a valved conduit (or homograft).

The surgeon is going to take a heart valve donated from another baby and attach it to Evie's heart, which in turn will be connected to a long, conduit tube that will connect to Evie's pulmonary artery to hopefully increase blood flow to her lungs and also encourage growth of her natural pulmonary artery. The surgeon will have to stop her heart from beating to do this procedure, and Evie will be hooked up to a heart and lung machine.

I had to ask: "So... how do you stop a heart from beating?" Honestly, I don't think I can repeat the answer. I'll leave it up to the docs. After drawing the blood, Evie got two quick x-rays of her chest and we were on our way home. Here are some photos from the day.

In the photo below, Evie spots her shadow: 6 more weeks of winter! Seriously though, Evie tried to make a break for it and left the waiting room, but we roped her back in. And while she was still in the waiting room, she spotted the water bottle of an unsuspecting patient and tried to take off with it. Luckily, he thought Evie was cute! Evie is just as full of mischief as Gavin is.

Evie can't hide from the nurses behind that bench. For some reason she found great comfort in that Kleenex package; it would barely leave her grasp all day. I couldn't even take it out of her hand when it was time to put her coat on to go home later.

We go over the list of Evie's current meds and her immunizations.

Learning how to stop a heart from beating... you know, for future reference.

Evie was remarkably calm while she was examined:

Getting a snack of corn puffs before the dreaded drawing of the blood.

Calming Evie down after the ordeal.

Waiting in radiology with a good book.

More waiting in radiology with Nana Cermak. Evie enjoyed kicking this commercial display. On a side note, I must say: Really? A toy advertisement display in a kids hospital? How can they put enticing toys behind plexiglas and expect them to understand why they can't play with them? Anyway, Nana was a big help throughout the day, especially in helping calm Evie down after the blood letting.

Back at home and in jammies, getting ready to go to bed. Gavin missed his sister! He did not understand why Evie was getting ready to go somewhere in the morning, and he wasn't. Good thing Evie was back home by the time he woke up from his nap!

Pre-Op Physical

Today is Evie's pre-op physical. I have taken her to the previous ones, but this time I am staying home with Gavin while Francis and Nana Cermak take her. Wish her luck! She actually did great at the other ones. She just hates the part when they draw blood...but what baby wouldn't?

One of Evie and Gavin's new favorite things is to wear a "necklace" of extra links and alphabet letters strung together:


"Don't hate me because I'm beautiful!"


Evie gets a ride in the laundry basket:

The twins have been enjoying Francis' old Cookie Monster doll:

Here they are touching hands through the pack-n-play:

Monday Cuteness

Update on Grandma Cordes: her surgery last week went well, but she has 23 staples and is still only eating ice chips! Everything went well though, and she should be home one day this week. (Maybe Thursday, the day of Evie's surgery!) Here are some random cute pictures from the last couple of weeks:

What could be more fun than paper towels?



Diapers are more fun, of course!


Gavin was facsinated watching Francis change the batteries in the musical table:


Evie is so excited that she got the "mail" in their play house, she just doesn't know what to do!