Wednesday, May 29, 2013

Post-Op Day 2

It's Friday...Friday...gotta get out on Friday...HaHa!!!! I have no clue what the words are to that song, but it's random memory time!!! Can I get a witness...any one else have completely random things pop into your mind...then you blurt them out...and everyone around you just stares....Yea, that's every day of my life...but I tend to be my own audience anyway...so no one throws tomatoes...cause ick...that would be such a pain to clean up. No thanks.

We had another sweet surprise on Friday...our dear friends, Jeff and Melissa (Mimi!!!) came from Indiana. We said goodbye to the real Aunt Steph and said hello to the "fake relatives," according to Bryce.  Renee "Super Woman" Davis also stuck around another day...basically whenever the big wig's are telling us something, we say, "SURE...ok...." After they walk away, we simply turn to Renee, and she begins the medical interp that we're paying her the big bucks for! 


Side note: Bryce announced to Jeff a couple years ago, "You're not my real uncle...I'm going to call you Mr. Anderson from now on!" Jeff replied, "Well, good...now I don't have to buy you any more birthday presents!"  **Silent reflection** Bryce: "I love you, Uncle Jeff!" He ain't no dummy.


Anyway, we started early again with rounds and heard good news overall for Zoe. Her pressures looked good, the bleeding was under control, and she was getting minimal venting. Her pulse pressure was also remarkable...what her heart is doing on its own, separately from the ECMO machine. This led Dr. Turik to say, "I think we should try and wean her off ECMO today! She looks great!" Excuse me, what?!? Awesome!!! Besides the heparin issue with the bleeding/clotting, we have been dealing with the reality of the ECMO usage...use as needed but be sure not to need it for too long...it's only a temporary solution. Fan-flippin-tastic.


They finished their rounds and returned to get going around 10:15 am. They would unpack the wound, clamp off the machine, and then watch and wait for about an hour. If all her pressures looked good, and the blood work came back acceptable, they would disconnect the device...leaving some contraptions inside the heart in case something went south, and they needed to re-attach quickly. They would need to leave open her chest regardless for a couple days in order to relieve some of the pressure off the heart.


We waited outside her room, hoping to get some sense of how things were going. The room was jam-packed with 15 or so docs and nurses...all specialists. I kid you not, Chris jokingly said at one point, "How much is this little procedure going to cost with all those people in there?" He's lucky he still has his teeth.  Anyway, the short version is that it didn't work. Such high hopes...dashed. They could tell by the time they got to 50%, it was not going to work...but they went ahead and pulled back to zero in order to have some sort of measurement to compare with once they were ready to try again. Unfortunately, her pressures just dropped too severely and the heart function was very weak...so back to full support, they climbed.  Dr. Turik came out and said, "Well, we tried. She's just not ready. We're going to let her heart rest fully and we can try again next Tuesday." I was so bummed...Tuesday?!? This was especially concerning since one nurse said they prefer to get patients off ECMO by day 5...Tuesday would be day 6.   Regardless of my misgivings, that was still the best thing for her overworked heart. Later, we were updated that they spoke after we left and decided that they would attempt to dial back ECMO a little bit periodically over the weekend in preparation for  Tuesday's re-do trial.


We tried to regroup quickly and made some impromptu plans to head back into town to watch Landry's 8th grade graduation. I'm really grateful we didn't have to miss it...she even sang a solo with the choir...and sang beautifully, of course. She also got the Presidential Academic Award...so proud of how hard she works at school. So thankful for the aunts, real and fake...that made our attendance possible! :)

We'd driven home separately so I could get back as soon as possible with the girls while Daddy stayed home while the boys had their practices...then they drove back to the hospital  later that night.

We had quite an emotional night with the kids and Zoe.  I never let Zane all the way into Zoe's room...so he wouldn't get scared...but it was time to let the other kiddos spend a little time with her. They'd covered up her chest...baby steps...and the girls and I went in first. They actually handled it well...as good as anyone could. I just cannot convey in words what it's like to remember someone chasingyou around the house and then to see them like this...sedated, vented, and paralyzed. It's hard core stuff. So why do it? Because their imagination...much like their mother...is far worse than the reality. So we took some time with each one...going through every tube, wire, and gadget.  In the end, it was a wise move.  By taking out the mystery, we also took out the uncertainty and doubt that was consuming most of them. We are establishing our new "normal."


My favorite part...by far...was singing to Zoe with my girls. We sang some of Zoe's favorites...then we sang the song we've sung together at various occasions called, Joyfully, by Kari Jobe. Zoe liked it...I could tell. And it reminded me, yet again, that nothing is too big for the Ultimate Healer...and I've always got a reason to sing out praises to Him.


You lead me by the water still
You lay me down to rest upon your faithfulness 
My Shepherd, gently take my hand
Your song restores my soul
For Your name, it makes me whole

Joyfully, I lift my voice in praise to thee
With Heaven watching over me, I raise my hands up high
Your majesty, gently washes over me
Makes my heart begin to sing, joyfully

I will sing...from the mountain top
I will sing...I am overcome
I will sing...making melody
I will sing...from the valley low
I will sing...because of Your love
I will sing...You're my King...I will sing

Monday, May 27, 2013

Post-Op Day 1

Unfortunately, this day started at 11 pm the night before...with a phone call. We had just settled down at the Mac House when we realized my phone had just missed a call from the hospital...that vibrate feature continually causes me as much grief as the person who never SHUTS their phone off in CHURCH! (ahem...sorry for yelling...got carried away) Actually the worst phone grief is the next level of ignorance...the one who ANSWERS their phone after leaving it on in CHURCH! (I've never failed to say, "Are you serious?!?" every time) Moving on...for real.

Before I could hit a button on my phone, Chris' phone rang. 

Gulp.

"We just want you to know that Zoe's had quite a bit of excessive bleeding. We've called the surgeons back in to get it under control. It's going to be fine...this is normal...we just wanted you to know."

Talk about helpless. It was awful. We knew there was nothing we could do but to do exactly that seemed so wrong. We prayed together and laid back down. Somehow...in a way that only God could provide...sleep came quickly. 

We knew we needed to be back at the hospital by 8:30 rounds to get the full impact of her status. It was such a blessing to walk in and see Chris' sister, Stephanie, standing by Zoe's bedside with Renee. It's been so difficult to be walking down this path so far away from our families. In the absence of blood, our church family at Harmony has truly acting on their behalf...loving us, caring for us, putting our needs ahead of their own, praying for us continually...and on and on I could go. They really are our family. Yet in spite of feeling the love so deeply here, it really brought me to tears when I saw Steph standing there. We didn't ask...she just came. It was overwhelming...especially to see her standing by Renee who's given so much of her time and energy to get Zoe the care she needed...they truly made a very difficult day almost enjoyable.

Unfortunately, the euphoria didn't last for long. More bad news. We found out that the surgeon had also been called back at 5. The PICU docs had begun to wonder if the packing inside the incision was compressing the heart and, therefore, causing more bleeding and rising blood pressure. So, the surgeon had unpacked the wound to see if this would remedy the situation. We also found out that her kidneys had suffered an "acute injury" during her heart surgery...so they were putting her on a dialysis machine as well. Their hope was that this would not turn into a long term kidney problem.  More equipment...more wires, tubes, and bags...still more blood.

It was a pretty heavy morning as we continued to deal with a tremendous amount of issues...and a heck of a lot of waiting. The patience-mobile never seems to drive around my block...rude.

By early afternoon, multiple doctors and nurses were coming and going frequently with each one checking and showing concern for the site and its ridiculous amount of bleeding and the climbing pressures. Let's face it...when the medical professionals are concerned...and showing it...there's a problem.  They had already contacted the surgeon before lunch to suggest he come back in, but he was in surgery on another precious girl and was unavailable to return. 

As the clock continued to tick away, we were praying all the more and trusting the Healer with every ounce of our being.  At the height of the concern, the surgeon's assistant decided they could wait no longer. Zoe's entire chest was covered with blood (to the point of bulging), as was all the gauzing underneath the ECMO tubes, and her bedding was equally saturated. Although the surgeon was definitely coming to deal with the bleeding on a more permanent level, Tina decided she needed to relieve some of the pressure immediately. She removed a fairly large clot from the surface of her chest. It was a pretty thick, jelly-like clot. She seemed happy to know her body was able to clot but was still concerned about the out-of-control bleeding. The pressures immediately came down once the clot was removed. As we waited for the doc to arrive, Tina explained the precarious realm we were living in...in order for the ECMO machine to function properly, they had to give Zoe meds to keep her blood thin as to not develop any clots...but this exact medicine was the cause of the excessive bleeding...sigh...

I have to admit, my heart ached even further when I caught a glimpse of Dr. Turik that day. He had spent the entire previous day with our sweet princess, had returned twice to get control of her bleeding, and had now spent another long day in the O.R. with a 12 yr. old girl...now here he was again...headed back into Zoe's room to try and get to the bottom of the problem. He had huge bags under his eyes yet went straight in to give just a little more of himself. We truly have been so blessed at the U. Dr. T found, and removed, several clots and was able to get a really good look at the site. He said it actually looked really good, with the bleeding coming more from raw, surgical areas and not suture lines. Apparently this is good news. Of course, all I hear is "blah, blah, blah...bleeding is much better." Got it. We wished him well and sent him on his way to his 2 children and wife, who's 8 months pregnant.  More reminders of the sacrifices made by the people that God uses to care for the health of our loved ones. 

Once things calmed down, we prayed for a calm and boring evening...as if our life has ever been boring...but one can dream.

After chasing Zane all over the U, Renee and Steph were still gluttin' for punishment...they kicked the hubs and I out of the hospital to go get some food and try to decompress...they would remain on Zane-duty. Angels, I tell you. 

Longhorn was, in a word, amazing. I felt like I was in a coma, but I can't remember a more savory meal...another mega-grateful moment. We gathered our things from the Mac House and returned to move into the Rossi Guest House inside the hospital. From now on, we won't have to leave the hospital which will be super helpful. (In hindsight, I'm pretty sure this is why we've left campus to eat these last couple days...too much of a good thing and all...)

We got Zane settled into bed, and I walked back to the PICU to spend a little time decompressing in my favorite way these days...spending some time with my blog friends.  I sat beside Zoe and began to tell you all about her story...well, the next chapter of her story.  

God's had this one going long before we came into the picture. He brought us into the plot line WAY after He's already been working miracles for years...we're really more supporting actors...all of us. The Creator of all things...He's the star...the One we all keep coming back to see. Ticket sales are going to be huge for this trilogy...it's just too incredible to imagine.

 Hey...did I mention?!? I've got front row seats!!!

Saturday, May 25, 2013

Open Heart Surgery...whatever...

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.

Thursday, May 23, 2013

Cha Cha, Chick-Fil-A, and Jesus

If you live in Facebook-land like the majority of the world, you probably know everything I'm going to throw at you in this post...but for the 3 of my friends who continue to rebel (you know who you are), I just wanted to jot down a few notes before that short-term memory really kicks in. Yes, I'm only talking about 2 days ago...yes, that means I'm already pushing the memory capacity at this point. (Some of you better take back what you just said...you also know who you are...)

I briefly mentioned that Zoe and I were up at the U early Tuesday morning for her pre-op gunk. She did just fine and was mostly irritated that every human being that walked near  her wanted to "take a listen." She humored the first 100...then she started giving that "Are you kidding me?" attitude. We had to break out the graham crackers...remember, "TA DA!" Hahahahahaha...Renee's going to kill me for bringing that up again! Just remember...there are other things I've elected not to share...:)


The nurses decided to use numbing cream this time for her lab draw...yea...note to self: don't fix what ain't broke. She was screaming long before they stuck her from the tape-ripping-off ceremony. Nice. 


They also needed a urine sample. She's not potty-trained. You do the math. Let me just say, little miss soaks a diaper every hour or so at home. No joke...Ms. Diva stayed bone dry for over 4 hours with that contraption on...not gonna happen folks. The nurse and I even tried to catch some urine the old-fashioned way. "Comical" is the understatement of the year. We gave up on that...they finally gave up all together. Wise move, boys. 


The bonus pay-off was a trip to the reward trunk. She tossed around a bunch of junk until MaMa noticed the jackpot...a booklet of stickers...plethora is the word you're looking for. Initially, she covered herself...then she covered my arm...then the paper on her table...you get the idea. STICKERS. BIG DEAL for Ms. Z.


She was still a whopping 20 lbs. with sats at 90-ish. Nothing monumental. I've already mentioned that we met her new surgeon and spent some time getting the plan laid out for the surgery. That was the biggest chunk of our visit.


It was a long day...so we were more than grateful to leave the building, right along with Elvis, to go grab some lunch at good ol' Chick-Fil-A. This girl seriously likes her breaded chicken, and I've made a silent, yet understood, pact with CFA not to defile her taste buds with any wanna-be impostors. Parents mold young minds. I'm committed to the important things. Unfortunately, we've been tossing around the idea of trying some regular milk again...we'd been giving lactose-free an audition due to extreme diaper "issues" and some vomiting. I wasn't convinced it that was the actual issue...so I gave her some milk with her lunch. Yea. Wasted nuggets. That's a travesty. Good news: she politely did the deed into her CFA bag...and waffle fries were an immediate post-puke response. Atta girl.  Of course, I wouldn't want to make her sick or anything so I didn't give her any of my peach shake...because I care. I'm sweet like that. 


Since we ate lunch at the time the twins are usually waking up from their nap, we actually went to the truck, turned on the air, and closed our eyes. It was blissful. By the time we woke up and got back into the mall, it was almost time for the rest of the family to get there. I'm so glad that we were all able to spend that family time together...all but Bryce, who was away at the 6th grade campout. Lame. :) You all know how I feel about camping. Since we were alone though, while we waited for them to arrive, I thought it'd be a great time to give the carousel a try. She picked a bunny...which just irritated me to no end, of course...get on a horse, for Pete's sake!!! Bunny?!? C'mon. Seriously. Ugh. But you'd all be proud of me..."Sure...you can ride the bunny..." What was I saying?!? "Ride the bunny?!?" It's just wrong. Who's making these things these days?!?! Ah well...I acted like I don't struggle with OCD every second of my life and left her on the bunny...that was pink...with a saddle...sigh. Right now, all you laid back whacko parents are thinking, "Seriously?!?" I kid you not, this was a big step. In the past, the poor child would've gotten a lecture about how the history of the merry-go-round wouldn't jive with a saddled pink bunny. I simply compensated by taking a close-up picture...wouldn't want that picture to come back to haunt her if she turns out like her mother. She loved the ride...I loved watched her loving life...and struggled to retain my denial about what would happen the following day. 


We had a great dinner at Texas Roadhouse...which basically served to un-do all the table manners I'd introduced since I became their mother...but it was great. Zoe had her first lemonade...big hit. We hit the hotel and got the little ones settled with a bath and bed. Then the big kids and I went back to the mall to do some brief shopping. 


The plan was made for the girls and I to go bright and early to the hospital with Zoe, and the boys would remain at the hotel with Zane in order to gain some extra rest. We should've just stayed up all night...at least I should've. Sleep eluded me continually...the best I hoped for was rest. 5 am came quickly...very quickly. 


It really was a sweet time with the girls and I as we waited to be called back...I did get some quick pics, but will have to show them later...once they downloaded on the computer. Peyton and Zoe played store, and we watched Mickey Mouse...always a winner. We got in matching "jammies" and finally headed to the OR around 7 am.


I will share about day 1 of surgery next time...lots of up's and down's...heavy moments... and even some great moments of laughter with family and friends. I'm reminded continually of the amazing grace of our compassionate Father who's known Zoe's name since the beginning of time and has allowed us to take this journey together. May we be forever changed to look more like His Son because of it.


Wednesday, May 22, 2013

Playing Catch Up...Again

Tardy. Story of my life. It's May 22nd...we met with the surgeon on May 6th...the dash between is a blur.  BUT...I will claim I MEANT to do the late post because my procrastination prevented me from doing a daily blog post with the updates. No joke...the plan changed daily...for which my children blamed me...interesting.  I've evidently got some mad skills.

Chris and I headed up to Iowa City with the Z's, Renee, and her real twins, Isaac and Ally...their mission, which they chose to accept, was to occupy Wild Man while their mom did her medical interp duties. It was comical to see Zoe's face when Renee got in the truck...dread personified. HAHA! Every time we take a trip with Ne-Ne, things get ugly for Zoe. We decided, then and there, we better do something just for fun very soon, or Zoe is never going to trust Renee again! :)

To save yourself from boredom, I won't go into all the details like I normally do...see, another plus from procrastination! I'm a giver...what can I say? Suffice it to say, everybody in the hospital now calls Zane by name, Zoe avoided sedation for the day, and Chris endured his favorite hobby...pitching tents in doctor's waiting rooms. Just to be clear, when I say waiting, I mean WAITING. Our appointment was at 10. I'm pretty sure we didn't see the doc until after 2.  For reals. I just kept telling myself that we'd be grateful for his thoroughness once it was Zoe's turn in surgery. By 2, I was pretty much chanting that.

The visit was fairly uneventful...Dr. Davis just told us that he believed the "normal" procedure would work, although Zoe's condition is like nothing normal.  They aren't able to say the typical, "The last 1000 kids like this were repaired with 95% success rate!" There aren't any others like her. But it "should" work. Sigh.  He also talked about that pesky valve. There's no way to know what they'll do until they get in there. Best case scenario...they stitch up the valve to allow it to function properly. If it's damaged too much, they'll have to replace it with a mechanical valve...something provided by Wilbur, I believe.

We tentatively set the date for the following Wednesday, May 15th, then headed home. We'd already changed the date by the time we got back to Burlington, and it continued to change on a daily basis. Not a fan...again my children blamed me. Mom gets the shaft...period. Trying to coordinate all of our schedules was maddening...especially with Zoe's potential for a downward spiral at the spur of the moment...but life continues...even though we'd like to push the pause button for a little while. The most frustrating part was finding out about major conflicts with big events which would've swayed the surgery date had we known. We tried to roll with the punches...yours truly did not roll smoothly. My ride looked more like bumper cars, smacking into mac trucks, rolling down the bumpiest gravel road Iowa has to offer. Nevertheless, we decided to stick it out with the surgery being May 21st...and dug our heels in to prevent another change.

Then we got a phone call on Monday...Dr. Davis was no longer available for Zoe's surgery...he resigned last Friday. Ummm...

We were supposed to be at the hospital first thing Tuesday morning for pre-op tests. Therefore, we had to decide immediately whether we go with another doctor we've never met, postpone the surgery after having a visit with the doctor, or start the whole process over again at a different hospital. It was another high stress day, to say the least. In the end, we consulted Dr. Edens and said, "If you're comfortable, we're comfortable. I'm the least qualified person in the room to make heart defect decisions...so I defer." He was good...that makes me good. I'm a simple person...who's very complex...but wants simplicity.

Yesterday, I met the surgeon that God knew would be touching my sweet daughter's heart today. When you try to process that, it's beyond overwhelming. I just keep thinking, NONE of this is a surprise to my Father...not one schedule conflict, not one heart ache, not one...or a million...doubts.  He knew...He cares...He provides...He heals...and ultimately, He comforts so tenderly. 

And now...we wait...again.

Tuesday, May 7, 2013

May 1st...Another Big Day...Another Sighting of a Big God

As promised, we headed up to the U for Zoe's follow-up heart cath. We were fresh off a big birthday celebration that I'll be happy to share with you at a later date. Today's news revolves the long-awaited day we've been waiting so not-so-patiently for. In case you're wondering, that portion of the Spirit's fruit seems to be shoved down deep...covered over by the much-loved beauties, immediate gratification and self-absorbtion. Lame.

We were so grateful to have all the pre-op appointments scheduled the same day as the procedure. It all sounded good on paper...much better than the 3 day adventure we had the last time! Of course, I quickly began to rethink the benefit when we had to skip meds, skip breakfast, and head to the city very early that day...only to return very late that evening. Zoe threw up all over herself just as I pulled into the Hyvee parking lot to pick up Renee. Super. My Favorite thing. Once we got her cleaned up and settled, we arrived at the hospital just in time.

Our morning consisted of the same ol' stuff that I'd never heard of before a year ago. Oh don't be so appalled. Yes, I know I've known people that have had serious health conditions...I've even had a few of my own...but to be fair, I did warn you of the self-absorption. Happy ignorance. That basically covers it.

Zoe's sats were 88-90, and she weighed in at 19 lbs. The fasting made for a crankier toddler, but all-in-all, she was a champ. They gave us the same basic information but said to expect a much quicker turn-around...practically guaranteeing no PICU or sleepover at all. Bonus. The worse part of those pre-op moments was when I began to prep her for the procedure myself. As soon as I started to change her into her hospital gown, a lone tear escaped from her sad eyes...followed by another...then another.  But she made no sound. I would have much preferred she have been screaming! She knew. She 100% knew...and I couldn't comfort the moment away. I had to pull the trigger. I had to thrust the knife. I was the traitor...and she was the trusting victim. I may be overstating it to any innocent bystander, but that was the message those eyes were conveying. Then to add salt to the wound, I once again carried her into the procedure room so that my presence could "comfort" her...that's laughable. She let me hold the mask near her face...then a little closer...then once it began to cause her to drift, her brain sent the panic message. She looked straight into my eyes as they held the mask tighter and as tears streamed down her face, shook her head no at me over and over as she cried. Somehow I gathered the puddle formerly known as my body and left the room...it was that or get carried out. It seemed the better option.

I'll admit to my typical medical confusion when Dr. Divakar came back in and said, "The pressures look basically the same as last time...so we should be good for surgery." I thought the pressures weren't good enough last time for surgery...I thought that's what we were waiting for...I thought I was clueless, and I was right. Finally! HA! He said his bigger concern at this point was the stinkin' valve that won't keep its mouth shut. No matter what procedures they could hope to perform, that valve will still be crappy. (I mean the fish, mom...no potty mouth!) He added that he'd do the formal calculations and let us know the final number. Incidentally, we're talking paper and pencil, people...2013...no technology...old school all the way. (Yes...we asked if this was legit. No, I'm not ashamed to admit it.) We followed her tiny self on that enormous stretcher, along with her team of 3 doctors, to the recovery room where we waited for her wakeup call. You better believe she gave me the what-for when she did wake up...yea...not happy with the madre. She must not realize I'm used to that response from my offspring...she obviously thought I'd just pick her right up and make a break for it...I did all I could do, which was hold her head in my hand (while the nurse held down her "cath leg" like a vice) and tell her my favorite lie..."Just a minute...we can leave in just a minute." She didn't even want me to sing to her...knife blade returned. Out of nowhere, Renee produces this flavored sponge on a stick...I kid you not, that's what it was...and we were golden. Still not thrilled with her treacherous mother and her posse, she calmed down long enough to break out of that joint...only headed to another...remember that 6 hour-lay flat rule...yea.  But at least this time, we boycotted the PICU and got to hang with the common folk.

I braced myself for the strapping down ordeal we endured last time with me laying on the bed, Zoe on top on me, our legs straight-jacketed together. But no sooner had I laid down on the bed, and they transferred her over, she dried up the waterworks and went back to sucking on that dang sponge-on-a-stick. I gotta get me some of that. She seemed content to simply lay there beside me as we began the quarantine. We had wonderful nurses once again and even dvd delivery from the library...you guessed it...Barney to the rescue. All in all, it was a rather uneventful 6 hours! Mostly, we chatted with nurses that recalled the glory days of Dr. Davis and snacked on our fingers when necessary...Zoe got to have her beloved mashed potatoes instead. Sheesh...always the patient at the wrong hospital.  Oh...and I drank Dr. Pepper...lots and lots of Dr. Pepper.

The end result was an astonishing result that Dr. Divakar happily delivered. The pressures that started at 5, went down to 2.5, and had to be below 2...after all the calculating dust had settled...came in at 1.45.

Our God is an awesome God. He reigns with wisdom, power, and love. Our God is an awesome God.