As soon as I signed off for Day 1 last night, shit wasn’t hitting the fan. And I say that because the girl got BACKED UP in the #2 department around midnight. Poor little thing was irritable into the wee hours trying to get out the ball that had built up all day from the gunky medicines. After heat packs, thermometers, 2 suppositories, an enema, and a lot of mama shhhhing we had relief. Well, looks simple enough in writing. But that was a 6 hour process. All you want to do as a mom is pick up your baby and comfort her only the way a mother can, but that wasn’t an option. Agonizing. No sleep for anyone. You should see these baggy eyes I’m sportin. Sexy.
After we had that poop puzzle figured out, she had a good sleep in the morning. I pardoned myself for a 2-hour nap at the hotel while Papa and Dad “babysat”. Of course she slept for them. But a 2-hour Mom nap never felt so refreshing. I was in such a good mood afterward, even the fact that the “conditioning” shampoo left my hair so knotted that my paddle brush got stuck mid-stroke in my attempt to unsnarl the rat’s nest couldn’t get me down. Most interesting bun I had ever formed.
Back through the hospital doors I went. I now understand the grand colorful entrance and a main lobby full of music-producing toy sculptures that captivate your senses…to distract you from the sad, red eyes that fill every parent’s face wandering through the halls with child in tow. These kids… it’s something else. All of a sudden your story isn’t such a bad one anymore when you take a look around. A father talking a foreign language so fast that I am sure he’s traveled days to get here, while pushing his smiling stiff teenager son around with cerebral palsy. A determined mom with her 8-month daughter propped on her hip, eyes as big as the Sun looking at the swarms of people buzzing around. Some people staring back at the baby’s golf ball sized tumor growing off of the chin on that angelic face. A little boy jumping off the cafeteria walls with all of the energy in the world, unbeknownst to him that many are questioning his old man appearance that Progeria gives off.
But I remember to smile back and wave at the innocent kids and proud parents. I remember because I hate it when we get the pity look. Strangers turn away, put their head down when they see Lyla is different. I remember that all kids deserve a smile and a wave to say “You’re awesome.”
And awesome Lyla was. I walk back to our Cardiac ICU room #9 tucked back in the left wing – 1 of 29 rooms filled to the brim with the teeniest of brand new babies, all the way to a couple of 6 year olds, fresh out of surgery. Here Lyla is out of bed!!! Papa is snuggling the rock star who got her O2 and another line taken out that unleashed her from the hospital crib. Freedom at last! Now give me my baby! It was a relieving feeling to hold my boo once again. My buddy was back. And boy did she ever appreciate the new recovery space of a warm body and snuggled arms that contoured her body just right. Out like a light she went.
30 minutes later around noon, I had the paperwork in front of me to leave the Cardiac ICU. Hells yeah! Step-down here we come. Enter the world of a more relaxed atmosphere. A TV, oversized comfy chair, space you can freely unhook your little patient from her wires to roam around the halls for an afternoon stroll, nurses that let you change the diapers, and no front gate guardsman to get past. Sure enough, Lyla was feeling like her old self. Alert, awake, and SMILING! There’s what I missed most.
She’s been eating great. Pain relief is down to Oxy and Tylenol. And naps are frequent to sleep away the memories of discomfort. Big day tomorrow full of post-op testing. Let’s hope Lyla aces these final exams!