Friday, March 01, 2013


From the beginning of this journey with Claire, then Lola, we so hoped that the decisions we had to make for our daughters along the way would be nothing but CLEAR.  No doubts.  No second guesses.  No questions in our mind about whether we're doing the right thing or not.  It's hard enough having to make some of these choices in the first place.  It's one thing if you are deciding which team your kid is going to play for or which school to attend (which are still hugely important), but it's a whole 'nother deal if your choices for your child involve their health, well-being, and most of all, their survival.

Our most recent dilemma involved the possible placement of a g-tube (gastrostomy tube) for Lola, as we were noticing that the NG tube (nasogastric tube) was being used more and more.  It was a logical next step to consider a more permanent solution to this problem.  A solution which would allow us to not have to tape a tube to our child's face daily or worry about the NG tube slipping from the stomach to the lung before a feeding or one of us accidentally pulling it out at any point during the day.  In addition, placing a g-tube would partially take away the outward physical signs that so much was so very "wrong" with our daughter.  (As if the mouthful of teeth + the teensy body + mature face + the seizures + the super tiny head circumference which falls at fucking -16 S.D. below the norm -- don't EVEN get me started on this or I might cry -- wasn't indication enough something was "off."  I may or may not be delusional about how affected my daughter truly looks. Scott told me he loves me even more for that though, so at least I've got THAT goin' for me.  HA!)  Our oldest daughter, Claire, had a g-tube placed at 3.5 years of age, and it literally was a LIFESAVER for her, so we're not afraid to "go there," for the record.  But something has been different with Lola as compared to Claire.  Something hasn't felt quite right.  We now felt FEAR. We definitely questioned whether this was the right decision for Lola.

Flotation Neck Ring from WaterWayBabies  ~  Our girls LOVE it!
(And no, it doesn't choke them!)

So, we met with our GI doctor who also expressed concerns about putting Lola under anesthesia. The conversation went from us asking, "Can a local anesthetic be used?" to her asking, "Do you want me to do a full-on resuscitation should she go into cardiac arrest during surgery?"  Tears.  More questions.  But also a bit more clarity...  If even SHE was concerned & we trust her with our daughter's life, maybe our fears were justified?

Our GI doctor suggested meeting with an anesthesiologist to discuss our options further.  We had the privilege of meeting with a wonderful, caring, highly respected pediatric anesthesiologist a few days later. He asked us some questions about Lola, we shared our concerns about the g-tube/NG tube, and we asked his opinion about what he felt was best for our daughter.  In my head, I quickly prayed that this decision -- this possibly life-altering decision -- would be black & white.  No uncertainty.  CLEAR.

"I don't get nervous doing anesthesia.  Ever.  I do it all the time on sick kids.  All over the country at many children's hospitals. This is what I do.  I don't get nervous... 
...but I am EXTREMELY nervous about putting your daughter under anesthesia."

Our answers were clear.

We continued discussing Lola, the possibilities, the future, her condition, her health history, what recovery might look like for her.  And while it hurt beyond belief hearing that my daughter wouldn't just have to survive an initial surgery but also probably a good month+ after the surgery due to her condition/fragility, at least then we knew EXACTLY how to proceed with her.  Without question.  I would be lying if I didn't say that my heart broke into a billion, tiny shards hearing this from two doctors I respect & trust.  Two doctors who both feel that my daughter's life is on the line for this elective, "easy" surgery.  But it is crystal clear to us now that surgery is simply not an option for our sweet Lola.  And we are now trying our damnedest to be grateful for the NG tube -- in all it's hideous, asshole-ish glory -- for being our daughter's saving grace.  And we will lean on it in the future whenever the need arises because CLEARLY, that is what is best for our girl.

“You must read, you must persevere, you must sit up nights, you must inquire, and exert the utmost power of your mind. If one way does not lead to the desired meaning, take another; if obstacles arise, then still another; until, if your strength holds out, you will find that clear which at first looked dark.” ~Giovanni Boccaccio


Whimsey said...

So glad it was made crystal in peace sweet momma!! ❤ U sweet Lola!!

helicopter Mum of 6 ♡ said...

Love you Miss Lola! Your parents made the best (and well informed) decision for you! Proud of them, and proud of you! Keep on drinking those bottles well, little chugger!!! Xoxoxo

Stephanie ODea said...

Decision made.
you are wonderful, and I love you.

momsmom said...

Your quote at the end really just says it all. What IS clear here is that your heart is 100% full of love for all 3 of your kids. You weighed the outcome and made the best decision.

Michele said...

I'm late to the party but I love little Lola. I watch all of her videos and I would love nothing more but to hold her kiss her and love her. She is the cutest little girl. God bless her

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