At 1:45 p.m. Tuesday, August 21, I was
preparing trying to prepare for surgery #14, which was scheduled for the following day, Wednesday, August 22.
Yes, that is not a typo.
Fourteen surgeries since we brought Li’l Miss home and waited during her six-hour, open-heart surgery on September 30, 2008.
Tomorrow was to be the day of surgery #14.
Nine of the 13 already done were for our precious Li’l Miss, six of those related to her cleft lip and palate and three related to her heart defects.
Nine surgeries in a 35-month span. Makes me hurt for her but that is another post for another day.
Tomorrow though was supposed to be surgery #4 for our Li’l Dude since coming home (he had at least three in China) and surgery #14 since we embarked on this journey of adopting special needs children.
I am not gonna lie.
It doesn’t get easier. It gets harder.
To put on the game face. And pretend I’m not freaking out inside, so my kids won’t see me freaking out on the outside. To wonder why, why, why?
I mean, I know on the surface why. But really WHY? Do some kids have to endure so much? IT.IS.NOT.FAIR.
Li’l Dude was ready to go. He had his game face on. He was ready to face this head-on. At exactly 1:52, a little less than 24 hours until go time, my cell phone rang. I know the number well. It begins with 343 and it is always the same because the Children’s Hospital is like that. They have call blocking, and the number always shows the same 7 digits whether it is the cardiology office or the ENT’s office or the audiologist or the genetics doctor (he has called himself TWICE in the last two weeks since we saw him) or the cranio-facial surgeon’s office, which was the case today.
I heard the lady B say, “Hi, Leslie, it is B calling from Dr. K’s office. How are you doing?” I say, “Well, I was doing great, but now I’m not feeling so great, because I know you’re not calling with good news the day before a scheduled surgery. Because you never call the day before.” And she says, “Yeah, you’re right. Dr. K is really sick. Like a high fever, has never cancelled surgeries in the 13 years I’ve worked for him SICK.”
So, I gathered my thoughts. We chatted and visited way too long. I love this lady. She is my go-to person at this particular doctor’s office and she has helped us navigate some tough stuff, like successfully scheduling Li’l Dude for a lip revision with Dr. K and the BAHA post placement surgery with Dr. W on the SAME DAY.
She got us back on the schedule for September 26. I am just not feeling it though. Will the third time be the charm here?
This surgery was originally scheduled for May 16, but we rescheduled for a couple of reasons. Basically, a friend needed the spot and we were THRILLED to have a spot that worked perfectly for their “we’re about to go to China and adopt our fourth child” situation. On top of that, I had no peace about the surgery and a summer of no swimming had me wondering “what was I thinking?” when I scheduled it for May anyway.
But, now, here we were the day before the rescheduled August 22 surgery and the Dr. became ill and had to cancel. Not at all on my radar. And I’m left to wonder, what is going on here? Should this be taken at face value, a coincidence, or are we supposed to reevaluate this surgery? Like I said way back at the beginning of this rambling post that is helping me to process my feelings here (so if you’re still reading, thanks, but if not, well I can see why LOL!), surgeries don’t get easier because they become more familiar or dare I say routine.
Routine is probably a big leap. Nothing routine about waking your baby up for a trip to the hospital where you have to answer them honestly when they ask, “Momma, is this just for an appointment or do I have to go to sleep and stay?”
What six- or seven-year-old baby should have to even ask that question? Or know to ask it?
Makes my heart ACHE. I wish I could take it for them. But I can’t.
And it appears the stars perhaps are aligning for us to have two kids having major surgeries within weeks or possibly days of each other. Not sure how I feel about that. The thought has occurred to me that our Li’l Bit may be facing her open-heart, fontan surgery very close to the same date, albeit four years later, that her big sister faced that same surgery.
I gotta get another game face on speaking of our baby girl. We meet again with her cardiologist next week, on August 29, and I’m dreading the appointment. Mostly for what we’ll hear, what we already know. She needs major, open-heart surgery, and she isn’t getting any better.
There have been little things lately. She threw up for no apparent reason. And didn’t appear to be sick. On top of that, excessive burping, which is WAY out of character for her. She just hasn’t done this since we’ve had her for these last six months. And now, all of a sudden, excessive, very excessive gas. Her lips look a lot bluer to me. And the gasping while she goes up the stairs. I just can hardly stand it. But baby girl is so determined.
Lately though, she will walk a few feet and then stop and look up at me and hold her arms up to me and simply say “up, Momma.” The tears are flowng as I type this. She just has NO energy lately. I can’t put my finger on it. Momma’s intuition. I don’t know, but I feel the time for this surgery is NOW. Adding it all up just makes me feel an urgency. And yet, the Dr. doesn’t seem to see it the way I see it … or at least he didn’t back on June 15. However, he did say he wanted us back in August to see how she is doing, to discuss again the best possible time for the surgery and he said, “if her oxygen sats are not significantly better after I closed off that collateral today, we will definitely need to reevaluate and weigh pros (particularly allowing more time for weight gain) and cons (facing winter with a very weakened and sick heart) of waiting until spring vs. forging ahead with surgery this fall.
I love our children’s cardiologist, but if I need to question him pointedly I certainly will. I KNOW he has weighed the risks and the benefits as he promised us he would back on June 15, when we met with post-op of her cardiac MRI and cath procedure. He coiled (basically closed off) a VERY LARGE collateral vessel (the heart forms these in situations like our Li’l Bit ‘s heart to try and compensate and sent the oxygenated blood anyway it can get it there–amazing stuff but this collateral was no longer needed and it was sending a lot of RICH, oxygenated blood nowhere). And Dr. D. hoped coiling it would bring her O2 SATS up at least the the lower 80s … except they haven’t changed. Maybe even a little worse. Lower 70s, not even mid as they had been hovering. Lately I don’t even want to put the pulse oximeter on her little fingers. I want to cover my eyes and pretend like she is not going to have to undergo a major, risky, long and did I mention risky open-heart surgery with a 90% success rate overall. I’m not a percentages girl, but right about now I’m not liking the 90% figure. At all.
And I’m TERRIFIED with fall and then winter approaching. So, Momma’s getting her game face on and preparing for a … how shall I phrase it … meaty discussion and a demand to talk to the surgeon himself if need be. I HAVE TO HEAR him say waiting is for the best, that gaining more weight is that important … because Momma is just not convinced. Big sis weighed just 18 lbs. when she had this same surgery and Li’l Bit weighs a whopping 24.5 lbs. She has a power gut going on and … as much as I want to run from this heart surgery … I also feel like it is time.
And in all of it, I’m left to wander and ponder is God working out some details we can’t yet see? I’m not sure my heart or digestive system or the bathrooms nearby can handle two of our babies having surgery on the same day, but we almost did it once before. Wasn’t major, open-heart surgery though coupled with the most intensive surgery to-date for Li’l Dude since coming home. This one will involve the Dr. cutting open his side and removing cartilage from his rib cage to use in building up the left side of his nose, where there is essentially no cartilage and it is very flat. If it sounds painful, it is. I just don’t even like thinking about my baby boy having to go through this.
Thankfully, he didn’t know about the May 16 date, because we don’t tell our children until a day or two before. This is what works for us and our daughter, who shows major PTSD when talk of a looming surgery comes about. So, we wait and tell them last-minute and we had JUST told Li’l Dude about this latest surgery and he was pumped and ready. Poor little guy is so confused. And the worst part of it all is that he still has to face it. Just later. Not now. Not tomorrow. Or the next day. Or the next as he will say. Just later I told him. Later, buddy.
And so we press on. And wait. And hope. And repeat. And know that God will not bring us to face more than He can handle.
Oh goodness, I hope you get some answers from the cardiologist! And that those answers make your momma’s heart feel at peace 🙂 Go get ’em, girl!
Big hugs to you as you hang in there, I can’t imagine how tough it must be!!
Having gone through such a surgery with a child I can’t imagine the ups and downs of having to schedule and reschedule. It was enough just to get it through my head that this was gonna happen much less have it be on and off and on and off. Ack! Hang in there! In other news, I need an invite to your blog! Got room for me?