There and Back Again: The Last Stage

The evening before the biopsy we stayed at my brother's condo in downtown Atlanta. In all the years we have been traveling through Atlanta, we have never actually been downtown (except once when Mom and I got off on the wrong exit...Eek!...this was before Garmin's). His condo was right by the Georgia Aquarium, Centennial Olympic Park, and the World of Coca-Cola (we did not go to a single one of these). Since it was after Thanksgiving, the park was twinkling with Christmas decorations. It was breathtaking (so cliche right?) when seen from fourteen stories up. The skyline was beautiful and I couldn't resist taking pictures (just playing around) off of his balcony.

Since we had to be at the surgical center at 7:30 (and we still had to find something to eat before we arrived), we decided to get up around 4:30am and leave by 6 (at the latest). Our butts were dragging! First on the agenda: find the surgical center (check). Second: Find food! (Houston, we have a problem!) I was warned before hand that there was no cafe or anything at this surgical center; however, we could bring food with us. I thought finding something would be easy...boy was I wrong! Everything probably would have gone smoother if it wasn't for two itty-bitty problems...I am a stress eater and Jacob is a stress smoker (he is only allowed to smoke in his car). So, with Rae passed out in her car seat, I searched for fast food joints near the surgical center using "Around Me" (that was a nightmare...never again I tell ya! I'm sticking with Urban Spoon!) while Jacob listened to the Garmin.

Rae with Aunt Angie.

It took us forever to find a fast food place that was open for breakfast (oddly enough Arby's was open...didn't know they served breakfast). After much debate, gnashing of teeth, several exchanges of sharp words, we finally stumbled upon Einstein Bros Bagels! I was stoked and hopped out to get some much needed munchies. I skipped back to the van clutching a bag containing a sausage, egg & cheese bagel and a blueberry scone (later, I was sadly disappointed in the sammie...but found comfort in the tasty scone). Jacob didn't want anything (I bought him something anyway...just in case). Now we were prepared. We knew where we were going and I had stress relief in a bag...let's do this!

I'm not going to bore you with the check-in process (we've all been there). Just know, I paid my agreed upon price and went about my merry way (after making "arrangements" for the balance).

It always feels like time slows to a crawl whenever something stressful is happening. Every tick of the second hand loudly reverberates...Tick...Tick...Tick. We met the anesthesiologist (the one that had to get paid). We met a few nurses, watched a few cartoons, and I softly told Evie her favorite story (I Like Myself). She fell asleep in my arms. When they came to take her into the back and prep her for surgery (basically poke her with needles and knock her out), I didn't want to let her go. It was so hard to let her go. But, we had to...so we did. We watched the nurse carry her down the hall and out of our sight.

If I thought time moved slowly before they took her back it was nothing compared to its molasses like movement during the procedure. We were both restless. I almost immediately started eating my disappointing sandwich and Jacob dashed outside (he would not leave her). I played with Rae's iPad, flipped through a magazine, sent a few text messages, but nothing kept me occupied for long. Every time the double doors swung open I nearly leapt out of the chair from hope and fright (this continued for a couple of hours). The nurses kept us updated and when the procedure was over the surgeon came out to give us a stellar report. Everything went fine, but she's having some difficulty coming out of the anesthesia (not a surprise...that was a major concern for me). Eventually, the doors swung open and it was our baby girl, still asleep, breathing, bundled up, and wearing an oxygen mask.

Kisses from Daddy.

My nerves were still not assuaged. I wanted to crawl onto the bed with her. Cradle her. Hold her to my chest and feel her breathing. None of this was possible. The bed was too small and she was still hooked up to a couple of machines. The closest I could come to achieving my hearts desire (at that moment) was to sit on the end of the skinny hospital bed. I gladly did just that. I rubbed her feet. Spoke to her. Touched her hair. Inspected her new boo-boo's and waited (...more waiting...). It felt like decades had passed before her long lashes started to flutter. She was finally waking up! It was over! We made if over this hurdle! Now we do some more waiting...

Rae (post-op) and Xavier watching Mickey Mouse Clubhouse.
I dont' think he was thrilled that she confiscated his TV.

*This is the fourth and final installment of "There and Back Again." Click: One, Two, or Three to read the previous posts or to see the incision from her muscle biopsy click here. Even though we are still waiting to for the biopsy results, I feel that this is the best conclusion to our trip to Atlanta. The results will be their own story for a later time. Thank you for taking the time to read about our journey.

Good Intentions

As any parent will tell you the minute you have that "gut feeling" friends and family with good intentions come out of nowhere. They offer you advice, support, theories, best guesses, sympathy, and hopefully appropriate humor to help lighten your worries. Every once in awhile those good intentions are totally wrong. After my husband and I decided to postpone the MRI and give Rae a chance to "catch up," I was met with some harsh criticism from a friend with good (as they viewed it) intentions.

My friend is a member of the medical community, in the land of therapy, and naturally I turned to my friend for some support and maybe a little instruction on what we could be doing, therapy wise, to assist in Rae's gross motor skill development. While sitting at their home I shed tears of frustration over how the simplest task will be more difficult for our daughter. My friend showed me a few exercises we could do that would help strengthen her core and get her "rolling" in the right direction. Unfortunately, by going to there for assistance I was eventually offered some strong, abrasive, and hurtful opinions.

After Rae's initial visit with Dr. H. I updated my friend on our decision to hold off on the MRI and the doctors diagnosis of Hypotonia. My friend was appalled and couldn't understand why we would postpone the MRI which could help us learn, "what was wrong with Rae!" My friend railed against our decision for well over five minutes throwing out statements like, "maybe she could be given steroids;" "putting her under isn't a big deal they (the hospital) do it everyday;" and implying we weren't making good parenting decisions because it wasn't what they would do. The tone of voice was accusatory, abrasive, and critical of our decision as Rae's parents.

So, now let's discuss the "good intentions" and how they quickly took a turn for the worst kind of intentions.

First, no parent likes to hear the phrase, "What's wrong with him/her?" I hear this and have to stomp down the urge to bare my teeth and attack. Yes, I am new to motherhood. Yes, I am also new to the emotional roller coaster created by having to adjust my definition of what "normal" development means for Rae. Yes, this giant ocean of special needs is intimidating in comparison to my previous life in a tiny "normal" pond. Yes, this makes me more apt to be defensive quicker than some. But ask yourself, if it was you, how would the implication that something is "wrong" with your child make you feel?

Instead of asking a parent "what's wrong," maybe ask them how their child is doing. This offers them the choice of sharing or not sharing something that they may be struggling to come to terms with themselves. Keep in mind that every child develops at different rates. Yes, there are guidelines, but the span of time for a particular skill can be very broad i.e. rolling over should happen between 4 months and the end of 7 months (according to the American Academy of Pediatrics). Since Rae was only five months at the time of her initial visit with the Neurologist we were still within the acceptable/average range of development. Give it time, we don't regret offering her that opportunity.

Second, any time anyone undergoes anesthesia there are risks and side effects. Yes, some of them are  rare, but they still warrant consideration. Since Rae is an infant and unable to lay still for long periods of time she would have to be under anesthesia at a minimum of 45 minutes, depending on the MRI orders. Given the nature of her diagnosis (Hypotonia) the muscles that help control/regulate her breathing may become too relaxed. This creates a new complication and may result in the use of a breathing tube being inserted to regulate her breathing. As her parents, we had to take all of this in consideration and decided to give her a chance to reach her milestones without putting her through what we hoped would be an unnecessary procedures. A quick word of advice, try not to belittle any medical procedure that someone may have to undergo or consider. Any number of things can go wrong and while the benefits may out weigh the associated risks it can still be intimidating to envision your child with tubes and needles attached to their tiny arms or legs.

Thirdly, I have no problem with someone disagreeing with the decisions we make as parents. Everyone parents differently and the choices made by some of my friends/family wouldn't be the ones I would make for my child, but that doesn't, at ANY point, give me the right to bully them. I'm sure there are times some would say I have overstepped my boundaries, it happens, but I try my best to keep some opinions to myself or at least broach the subject in a manner that wouldn't set them immediately on the defensive. Our doctors supported our decision and if they gave us any inkling that the MRI needed be done sooner then we would have followed their professional opinion.

Sometimes it isn't the argument that creates a hostile friendship, it is how the argument is presented. Being bullied over the phone because we made a choice that differed from what my friend believed we should have done has caused irreparable damage to our friendship. I don't feel comfortable sharing intimate details about Rae's condition or our decisions about what course of action is in her best interest. As much as I would like to open up to my friend, especially since Rae has started physical therapy, I just don't trust that another attack won't be launched. I especially don't need to be patted on my head for finally making the "right" decision.

Below are some links about the use of anesthesia for infants undergoing MRI's or surgery:

Live Stong: Side Effects of Anesthesia - More of a layman's approach.
Sedation and Anesthesia Protocol - This one is riddled with medical terminology.
The Society for Pediatric Anesthesia - Q&A - Pretty basic Q&A format.