I've been told to "under promise and over deliver"...you know who you are...ahem...so I won't say I'll catch up with blogging by tomorrow but ya never know... (how'd I do?!?) I purposefully waited to get behind on blogging details...it allows me and the entire family time to process the events of the day before gathering my thoughts to share with you. I apologize if it causes you grief. FYI: in full disclosure, I'm not actually sorry...just apologize if it irritates you...no wait, still not sorry for that...I apologize if your life comes to a halt while waiting for the update...hmmmm...I better move on... Love ya...mean it. :) In all seriousness, we have been moved to tears by the outpouring of love and prayers throughout this situation...so just ignore my sassiness...unless we share a sense of humor...then go ahead and read that back to yourself.
Getting back to Wednesday, the girls and I loved being with Zoe...ZO, as our older gentleman nurse called her...no, seriously...he really did. We shared some fun giggles, Zoe was ever so concerned about a baby who was simply distraught down the hall, and everybody got a good chuckle out of momma donning the surgical garb so I could take Zoe in the OR. They offered to give her some goo goo meds, but like I said, if it ain't broke, don't fix it. You may remember, our previous encounter with the gas mask was not a pleasant one. This time was a cake walk (or a piece of cake walk, if you ask my friend Amy! HAHA)! The dr had rubbed strawberry chapstick all over the inside for her and even let her play with it a bit beforehand. He also had a smily face drawn on the balloon he said she could blow up. I'm not sure what part of the combo was acceptable to her, but it was like night and day. No struggling, no screaming, hardly any panic...just drifted off to sleep...I was so grateful.
The girls and I headed back to the hotel to eat with the boys and gather our things. We truly felt a peace that passes understanding and were confident that many were praying on Zoe's behalf.
The surgeon's assistant, Tina, was so great about keeping us posted throughout the day. Although we'd arrived at the hospital at 6 am, got into the OR at 7:30 am, the surgery didn't get started until just before 10 am. These dudes are totally on Eva-time! Why don't we hang out more often?!? Surely they realize what a fun girl I am!!! (Zip it.)
They had gotten her on to the heart/lung bypass machine around 11 am and were finally starting the actual procedure around 11:30 am. Meanwhile, back at the ranch...better known as the PICU family lounge...we had successfully taken over, and everybody definitely knew our names. (Everybody sing it with me!) You should've been here...it was awesome...all that family togetherness in one room with every electronically device known to man.
Around 2 pm, we got word that the surgery had gone well, but unfortunately, the valve repair had not been successful. (I knew that obnoxious thing would cause me no less grief than a hole in the head...ugh.) This news flash meant Zoe would have to be put back on the bypass machine for further intervention. They tried...no bueno. They'd need to put in that mechanical valve we'd been told was option B in Valve Land. There were some complications with this option, but the size of this opening was so large that they hoped to use basically an adult size valve so she wouldn't outgrow it too soon. That was the only plus...except that she'd have a major problem taken care of. This new problem would add a couple hours to the process. Fantastic. Incidentally, the bilateral procedures she'd had done to "re-wire the plumbing" went very well and were looking good. Another good bonus was that she'd transitioned easily from the bypass several times...this had been a concern earlier.
6:00 pm...we received some good and not-so-good news. When the surgeon went in to replace the valve, he realized he could try one more thing to fix the original. They were elated that it did indeed WORK! What a relief that was...for a moment. Once the valve was repaired, it didn't take long for them to discern that they had yet another problem. When they transitioned her off bypass again, it became quickly apparent that her heart function was just not able to step up to get the job done. Her body had learned to function in its own "normal" which was a far cry from what would work for the rest of us. To this point, there wasn't a great deal of resistance pressure and/or blood flow. Now that the glens were rerouting the blood to the lungs, and the valve was not leaking profusely, the damaged and over-worked ventricle suddenly had to do the enormous task of supplying the blood to the rest of the body. Basically it went from a lifetime on the lazy river to a full-fledged, wedgie-giving body slide. Ms. Sassy Pants Ventricle was saying, "Uh...no...not gonna happen. Thanks for playing. Take a chill pill, man. WHO SWIPED MY INTERTUBE?!?" Not sure when I started having guest columnists, but Ty thinks I should add that it was also like running. You might be able to walk a couple miles, but you wouldn't necessarily be able to sprint a couple miles. When you're preparing for a marathon, it's going to take a lot of training. Without training, you would give out quickly. Bam. Zoe's heart. (There ya go, Ty...happy? So help me, you best like my water park analogy better...Ty's not getting paid the big bucks around here.)
The docs explained that the best thing they could do for Zoe at that point was to hook her to a fancy machine called ECMO...which was, in essence, another bypass machine...in layman's terms, life support. This machine was a great way for her heart to get some rest while getting the support it needed. They would also be able to turn the machine up and down as needed to test out the heart to check on its strength instead of going cold turkey again before she was ready. Of course, this also meant that they would have to leave her chest open for the time-being until they were able to get her back off ECMO. They would also naturally be keeping her sedated and paralyzed while on ECMO. You can imagine how overwhelming this was for each and every one of us...especially the kids. Lots of heaviness in the room. The docs took lots of time with us and answered questions...even drew some pictures to try and explain. Nothing seemed to softened the blow. The only lite-hearted moment was when one of our children fell off the back of the couch. Guess you take what you can get.
We spent the next couple hours talking to, and crying with, the family. Chris and I decided it would be best for the kids not to see Zoe that night, given the situation and although this did not make them happy, we knew it was for the best. Our friend, Michelle, came up to the U to drive the kids back home to Danville, so we shared some prayerful moments and said goodbye.
It was around 7:30 pm before we were told Zoe was finally headed back to her room. It was probably the toughest thing I've ever experienced to walk in that room and see her like that...wasn't pretty. We prayed over her, cried some tears, and just tried to soak in all that was happening.
Eventually, we headed over to the Ronald McDonald House to crash with Zane...hoping to wake up the next day to find our sweet little girl had proven everyone wrong.
That was not the case...except for the itty bitty thing that she's even alive. That, alone, was cause to rejoice.
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Hello, Eva! Followed a link from Clay Williams to your blog. As I read over your last link, my brain caught on "the surgeon's asst Tina"...and thought - the surgeon's asst at U of I is Tina, too. Then I looked to see you are from good ole Iowa, too! So I've been EXACTLY where you are, sweet Momma. Same waiting room, same feelings ... different doc, tho. Our Juliana had her first and second...and soon to be third open heart right there at U of I. Have you set up a Caring Bridge? would love to follow along! To see our Juls today, no one knows she has a really messed up heart ... hoping Zoe's outcome is a miracle just like Juls'!! Will be praying for you! Have half an inclination to pay you a visit! BTW we are from Clear Lake. Blessings to you!
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