Friday, February 6, 2015

the surgery before surgery

It's been a little over two weeks since Mary-Kate's dental surgery.  I find it ironic that by the time it was over, our family count was 26 lost teeth.   Just days before MK's surgery, our 19-year-old Abi had her four wisdom teeth removed.   A few days after her surgery, our 14-year-old poodle had his own surgery to remove a good number of his bedraggled canines, among others.

But, really, the day of Mary-Kate's surgery was way more traumatic than humorous, for us just as much as her.   A few days of healing have allowed us a lighter perspective and even a few jokes.  That Tuesday, though, we were anything but laughing.  Jon and I both felt an inexplicable angst watching Mary-Kate struggle through that day.  Maybe it's because we couldn't explain the why to her.  Maybe it's because we knew the bigger surgery was just a few short weeks away.  Maybe it's because she's just a baby, and it's hard to think about this happening to her on top of everything else she's been through.  Maybe it's just because she's OUR baby, and it's a miserable feeling to watch your baby go through a day like this.

Following our dental consult on January 12th and the news that Mary-Kate's heart surgery would have to be postponed, our baby girl was swiftly worked into the surgery schedule, and we found ourselves on  our way to Riley on the 20th at the unmerciful hour of 5:00 am.

We checked in, weighed in and waited.

We almost found ourselves rescheduled for this surgery when they found out she was being treated for an ear infection.  The anesthesiologist was hesitant to put a heart baby under if there was any chance at all she would have any respiratory issues.  At our insistence, he looked her over and determined that it wasn't worth postponing yet another surgery.

One of the hardest parts of any surgical procedure with a little one is keeping them from eating and drinking. I haven't shared much about this, but nights can be pretty rough with MK.  She hasn't "slept through the night" once since we've had her.  And we're over the 90-day mark.  We've had some exceptionally good sleepers in our family, and this baby has put our parental mettle to the test, for sure.  I'll share more later, but suffice it to say that every night she wakes up several times a night.  While we've had numerous night terrors, most of those times are comforted with an ounce or two from her bottle.  Whether it's a security or attachment issue or whether it's because she's a heart baby and never takes more than two or three ounces at a time anyway or whether it's a little bit of both, we give her what she needs. It's something we're just working through one night at a time.

See where I'm going with this?  By the time we got to the hospital, she'd abandoned words and was just looking at us and pointing to her mouth.  By the time we'd done all of our pre-op procedures, she was clearly convinced  we'd lost our minds. We were more than grateful when they finally brought her dose of Versed around 7:30 am and carried her back to surgery twenty minutes later.  We stumbled down the long hallway to the surgery waiting room where both the grandmas were waiting for us.  I could not compose a thought or even force a conversation.  Beyond my tired, I was just a mess, frustrated with myself because I was struggling to interact with the company for which I was so infinitely grateful.  I finally dozed off in my chair about an hour later, and shortly after the 90-minute mark, the nurse who makes the surgical update rounds informed us that Mary-Kate was in recovery and that the surgeon was ready to speak to us.  The outcome was more harsh than expected.  Our sweet baby girl lost a total of 10 of her 16 teeth, including all of her front teeth, top and bottom.  I couldn't help it.  The tears just overflowed.  It was hard.

x-rays taken during surgery
healthy teeth are solid white

Our very kind doctor explained to us that every one of those extracted teeth was soft all the way through the gum.  There was no way to save them.  We were very fortunate that her permanent teeth are now, at this point, protected from further decay.  But still.  My poor baby will have no front teeth until she's six or seven years old.  There is the possibility that they will be able to mount a pediatric partial once her two-year molars have come in.  If not, she will definitely struggle with speech. Wrap your mind around what all this baby has endured even before her two-year molars.

Shortly after, we were escorted to the open bay recovery.  While I've had experience with several oral surgeries with my older kids, I was wholly unprepared for what awaited us.  Mary-Kate was on her side with her face in a pool of blood.  The recovery nurse had waited for us to be present before waking our girl.  I am grateful for that because we were immediately able to comfort her.  If you've ever had a child come out of anesthesia, though, you know that comforting is a relative term.  We were able to hold her, but that also meant confining the bleeding.  And we were told that in order for the necessary clotting to occur, she couldn't have a bottle for the next 24 hours.  I'm really glad I hadn't thought that through because that would have just upped my anxiety level.  We made the attempt to offer her some Pedialyte straight from a cup, but that turned out to be a messy effort, to say the least.  She was expectedly miserable. And as she came out of the anesthesia, each crying fit resulted in her oxygen level tanking in the 40's and 50's, which meant a bit of supplemental oxygen.

We were eventually moved to a private recovery room.  I can't say enough about the nurses at Riley.  The right nurse really makes a difference in your experience.  And the ones we've encountered so far have all made every effort to meet our every need.  They made sure our baby girl was as pain-free as possible before we were sent home.  That extra effort in medicating her really made the difference in her state of agitation.  Once the bleeding was relatively under control - not an easy milestone with a heart baby on aspirin therapy - we were able to take her home.  She slept fairly solid all afternoon and evening while the anethesia worked itself out of her system.  The rest of the night wasn't so smooth.  Let's suffice it to say we went through a lot of clothes and towels, and we had a very unhappy baby without a bottle.  We were able to pacify her some with popsicles and pudding, but we also struggled with limiting her sucking on her beloved tan je.  It was a long, long night.  The wheels started to come off for me about 3:30 am.  I'd begun to lose all rationale and was ready to book a flight to Jamaica - ALONE - when Jon rescued us, scooped up his baby girl and sent me to bed - ALONE.  It was a blessed few hours of sleep.

Even the next day was rough, with continued bleeding and an out of sorts baby.  Can you imagine the thoughts running through her head?  Every day since then, though, she's been a little more her funny little self.  Nights continue to be her struggle and where her heart and mind continue to work through all that she's endured so far in life.  As frustrating as it can be, any irritation I feel melts away when her cries turn to the sound of a newborn, when her mouth takes the shape of tiny baby that only knows the instinctive desire of a mother's touch and comfort.  It's as if all those months of not receiving that have awakened a deep, deep need in this tiny little girl.  How can any need of my own come close to hers? 

If this alone were our battle, it would be one thing.  But our knowing what looms ahead gives me an entire new level of angst.  I cannot put to words how grateful I am for the peace I find in knowing our God goes before us, knowing that this is His plan.  Because in a few short days, we will place her in the arms of a nurse who will carry her to the skilled hands of a renowned surgeon.  We know to the depths of our souls, however, that we nurses, doctors and parents are all just vessels of HIS healing.  Ultimately, our Mary-Kate will be in the hands of the Great Healer.

*We spent the afternoon at Riley today for Mary-Kate's pre-op appointments, bloodwork and testing. She is cleared for surgery, and we are scheduled to arrive at 5:30 on Monday morning.  She should be taken back between 7:00 and 7:30 am, and the surgeon expects to be in surgery until at least mid-afternoon.  I will be updating general information on my personal Facebook page, but I will share more details on Mission: Mary-Kate's page.  We are so very thankful for all of you who will be lifting our baby girl up in prayer as we put our trust in Him.

Monday, January 19, 2015

in over my head

So much. 

So much to share.

So much I want to remember.

So very much to be grateful for.

So much that deserves to be part of this story.

Today was the day we were supposed to take Mary-Kate to Riley for open heart surgery. The day her congenital heart defect would be repaired.  The day that would truly be the beginning of her physical healing. Plans changed.  And, instead, today became the day I would begin to share in detail what has transpired since our arrival home from China with our baby girl.

I've written so many blog posts in my head that I could have written a book by now.  As much as I drag my feet in sharing the intimate details of this story, I know they are exactly why it needs to be told.  And, really, our God writes with purpose in every life. 

As for me and my story, this story, I'm in a little over my head.  And to do this moment in the story justice, I need to fast forward a little.  To the right now. I feel like I'm treading water, for sure.  And somebody throw me a floatie, would ya?  I mean, I'm really not a fan of deep water.  And by "not a fan", I mean it terrifies me.  I think I've shared before that I don't even like to get my hair wet.   Park me on the beach under a palm tree, okay?  I know I'm talking real water here, not figurative, but the irony is not lost on me.

You would have thought that even the notion of adopting another child at "my age" would have been the proverbial deep end, right?   That was the wading pool, folks. Somewhere along the way, as we resisted cultural norms, ignored financial obstacles and signed on for a "special needs" adoption, the venue changed.  We weren't just in shallow waters, we were leaving the shore.  

Late in 2013, Hillsong released an amazing song.  Oceans became wildly popular.  It's one of those songs you love to turn up loud in the car.  While I know it has a broader faith reference, I've often thought about how it so vividly describes this adoption experience. 

"Spirit, lead me where my trust is without borders."

"Wherever you may call me."

"Take me deeper than my feet could ever wander."

"My faith would be made stronger."

Good stuff.  I mean, this is what we hope to live out in this life, right?

Back to this week.  I'm sure you're waiting for me to get to the point. I'm getting there.

If you've followed along on MK's facebook page, you already know she has congenital heart disease and that she's in need of surgery to repair her heart.  We were told a few days after arriving home with her that it was time for her repair. That her shunt was working overtime to provide pulmonary flow.  In fact, there was considerable concern that her heart had been compensating with "collateral vessels" and that the pulmonary artery might not be adequate for a repair.  Some scary scenarios were discussed, but we   wouldn't know anything for sure until her heart cath.

Before we could get in for the cath, we found ourselves with a very sick baby with a very low oxygen saturation level.  On top of a pesky recurring ear infection, a mild case of viral pneumonia affected her sat level so significantly that she needed to be hospitalized and on monitored oxygen.  At one point, we were even introduced to the CICU team.  Thankfully, our girl is a tough little fighter.  She went from barely "sat-ing" in the 80s on three liters of pure oxygen to room air in the four days we were there.  We learned a lot about her baseline oxygen level, mostly that she functions amazingly well on what most of us would consider ridiculously low.

Her heart cath took place on December 18, and it was blessedly routine. In fact, we didn't even make it to the step-down unit but were sent straight home late in the day! We left, however, with the doctor's words ringing in our ears...that her shunt had seen its better days and that due to the virtually nonexistent flow through her pulmonary artery, should the shunt fail, she would die.  And that we should move her surgery up to the soonest possible date.  

We rescheduled with the cardiothoracic surgery team for January 19 and made an appointment with the dental clinic at Riley for the required clearance for open-heart surgery. Unfortunately, our dental appointment last Monday did not go as anticipated.  What we discovered was that our baby girl has a mouth full of decay, enough so that her heart surgery was pushed back once again to February.  Enough so that she will need to undergo general anesthesia for some pretty major dental work this week. Enough so that almost half of her baby teeth, including all four of her bottom front teeth, will need to be extracted and the other half will be crowned.  

One curious happy baby before the masks and blue gloves appeared.

Here's where, surprisingly, the water starts to get deep.  As I'm writing, I'm wondering why I didn't start to feel the ground disappearing under my feet.  This appointment was the one appointment I'd ventured to on my own, and I know now it was by His design.  I wrapped my baby girl up tightly in a blanket and stumbled back through the bitter cold to the van.  So many things were running through my head.


"I am a terrible mother.  Why wasn't I on this dental thing? How is this a surprise to me that she has so much decay in her mouth?  What if something happens to her before she gets her heart surgery? What kind of pain has this baby been in all this time? Her baby teeth.  Her sweet little baby teeth that we didn't get to celebrate.  No more toothy little smiles.  No bottom teeth till she's SIX."

As soon as I had her buckled up and climbed into my seat, I lost it.  I backed out with the tears rolling and sat in the long line to get out of the parking garage, annoyed with myself for being so emotional, distracting myself by scrolling through my Facebook feed.  

I rarely click on video links, especially while on the go, but it caught my eye.  As I paid my parking and pulled out onto the road, I tuned in to the lyrics of this song.  There are just times when you know God's waiting for you.  Waiting with exactly the words you need to hear.

It wasn't until I got to the last words of the song that I knew why I was listening and I knew why I was where I was with my emotions.  That part about being "beautifully in over my head".  I actually laughed out loud through my tears. There couldn't be a better way to describe how I'm feeling right now. 

The whole song, though.  

Being full but not satisfied.  
Being thirsty but not quenched.
Tearing down boxes I've put God in.
Losing control but feeling FREE.
Right where He wants me to be.

And this.

Whether I sink or whether I swim, I'm beautifully in over my head.

I just.  I thought I was as prepared as I could be for this heart surgery that was to occur today.  I knew that I knew that I knew that I was supposed to love THIS baby through THIS surgery.  That she is MY daughter.  That HE would cover it all.  And this dental appointment is what did me in??  What the what??

So what does all of this mean? It's taken me a few days to think it through.  Maybe I'm sinking a little, but I'll eventually swim. It's hard.  Hard to be in this place right now.  I really AM in over my head.  But please know that it isn't as much literally and physically being in over my head as emotionally and spiritually.  I haven't been more sure of where I'm supposed to be and what I'm supposed to be doing in YEARS.  Some days I'm treading in deep water - and some days my head definitely slips beneath the surface - but I'm just doing it one day at a time and doing it with my whole heart. 

Oh, but here's the best part about being in over my head.  Who's really the One throwing me the floatie? Only through Him am I staying afloat.  That truly free place of trusting Him to be the One in control.  And not just of what happens to Mary-Kate, but what happens in my heart.  

This loving orphans, whether we are able to be a family to them or not, it comes with an intangible price. We're wrecked on the inside, and we're never the same.  But the freedom from comes with the full abandonment of what this world tells us is right and acceptable and DO-ABLE.  True freedom is found in the tide the carries us out into the deep unknown, to the things that we can only do through the Father's strength and power.  

So here's to a little more swimming and a little less sinking.

Either way, I'll be okay out here, even if I am in over my head.

Here's the video. Five minutes you won't regret.