Baby Steps

I say "baby steps" because that's the way I'm feeling after these last couple days...like an infant...too unsure to step lest my legs give way.  I forget way too quickly that my Daddy has me by the proverbial armpits...guiding and supporting every step...I won't fall if I let Him hold me, yet in my stubbornness, I'd rather not step at all than to step while holding on. I'm such a baby. 

I never claimed to be a spiritual giant...far from it...but I thought my faith was stronger...deeper...more substantial...than it has shown itself to be.  I'm a toddler taking her first steps...shaky and slow...at best...some days, I'm closer to a crawler. 

God has allowed these last couple days in the hospital with Zoe to, once again, shake me to my core and show my feeble heart at his weakest and most vulnerable. 

I thought God asked us to take a tremendous step of faith to rescue two of his children. I thought we were sacrificing to this degree to "get her the help she needs." I truly believed in my heart that God was bringing us together so that one day, after soaking in the truths of God's redemptive plan, that she might put her eternal life in His hands, just as her physical life has always been.

I never expected to hear, "We may just be able to make her as comfortable as possible while she lives out her last days."  But that's what I heard today.

Let me back up a little. 

We got word this week that Zoe's heart cath would be Thursday at 7:30 am, but that we'd have to be at the hospital for pre-op on Wednesday at 2.  Because we live 1.5 hrs away, that also meant we were staying the night in Iowa City. This posed a dilemma with what to do with our other kids, including Zane. After much discussion, we decided Zoe and I would come up with our friend, Renee, again...Chris would man the fort...and corral the troupes (did I mention Zane was included)...and prepare for Easter Sunday...somehow. This also meant that Mommy would not be there for Peyton's 11th birthday. Sigh. Tears were shed...on both our parts as birthdays are a big deal at the Carr Castle...but we also understood we had no other option.

Incidentally, our dear friend Jacqueline took it upon herself to gather all sorts of things to make Peyton still feel the love...in a big way...on her special day. I will be forever grateful for this special display of love for our Peanut. Daddy and Zane taking Peyton lunch at school was icing on the cake.  Daddy sent me pics of all her special things, but my favorite was her smile.  It has always lit up the room...it certainly did that today...even from a distance.  Thank you, Jacqueline, for making that possible. 

I'd been prepared by Chris that I would have to sign a consent form/waiver that this cath procedure could prove fatal, but no amount of forewarning could actual prep you for what we encountered. We met with more amazing staff members of the U...I could never begin to say enough about the quality of care we have already received. It's just another piece of the puzzle with God leading us to Iowa almost 18 months ago. 

Speaking of pieces of the puzzle, Zoe also came to us with a small abrasion of some sort on her right temple. I didn't think anything of it initially because it looked like nothing more than an old mosquito bite or something of that nature. Suffice it to say, it had grown much bigger and became infected somehow to the point that we had to drain and culture it yesterday during the pre-op workup. Bonus? Uh...not so much. They also put her on antibiotics...just in case.

We were prepped that her cath doc was very blunt...honest to the core. I just chuckled because every single doctor that's ever actually helped me throughout any of my own health situations has been just that. No hand holding, no hair stroking, no light music playing. I find it mildly amusing that I married the same personality...remember Mr. Bottom Line...but it definitely works for us...plus he's a big softie when he needs to be! :)  That's enough of that mushy stuff...getting back to Dr. Direct. I have to admit I was taken aback as he painted a fairly bleak picture of what I thought was a routine "investigation" into the heart situation. I knew they were getting the lay of the land...just didn't know those measurements would determine whether they could do anything or not...just thought it would determine what...not if. He thought it very unlikely that any finding would be good, and we were left to ponder the heavy implications.  Renee was quick to remind me that we knew nothing new or different than we knew the previous week with Dr. Edens...that was moderately helpful. On some level, I was shocked to hear the severity of her case...even though we knew it was life-threatening from day one. 

It was interesting to see them interacting with Zoe. At one point, the dr said, "I'm a little confused because on paper, I would say she is critical...but to look at her sitting there eating cookies and smiling, I would say she's not critical!" They also made it clear that there are no protocols for her condition. There are no textbook answers. Somebody will study her case someday and write some sort of paper over her diagnosis and care. That did little to comfort me.  I heard lots of scientific and medical explanations of the situation, but one in particular, I felt a need to oppose. He said, "Nature has been keeping her alive by these different problems working together." I let him finish his thought and said, "I have to tell you that we do not believe under any circumstance that this was 'nature'...God himself created her in such a way that He is sustaining her life through these 'problems'...this was no accident...and He also has us here in this place, at this time...He's in control." He humored me and shrugged his shoulders, but that's ok...I felt prompted by the Spirit and obeyed...maybe He will use my lame response one day in the hearts of those that heard. It felt very inadequate, but a theological debate wasn't on the table. 

Given the heaviness of the visit...which lasted for over 3 hours...Renee offered to stay the night with Zoe and I in the Ronald McDonald House. This was also after much discussion about whether Chris should come up or stay home with the kids. Considering Peyton's birthday, Zane's schedule, and the other kids activities, we agreed it was best for Chris to remain home. However, I'm so grateful to have not been alone as they even set up the possibility that her little body would adversely react to the cath and that she may not make it out of the procedure. Heavy stuff.  

So, of course, we went to Olive Garden. :) What else would we do?!? Everything going great...me and my alfredo sauce...until Zoe's apple juice created quite a stir. Sigh. Done with apple juice. For keeps. Those of you that know me well would've been proud. Throw the breadsticks out of the basket, catch the puke, wipe her down, order more bread. Put my big girl britches on for that one.  Just like the other two incidents, Zoe was perfectly fine afterwards. It's clearly not a stomach virus of any kind...more likely, it's compression on the stomach muscle from these various enlarged organs so that when the offending variable...apple juice...is introduced, the small gag reflex produces just the right amount of pressure or stress to cause the vomiting. That's my highly trained medical opinion. You can quote me.

We then went to Target to get forgotten items...me, of course...and crashed at McD's house. Lots of prayers...more tears...went to bed hanging on to a thread of hope that God would do great and mighty things with this little girl...and her baby of a mother.