Today I cuddled Kaylee for the first time since her surgery. It was fantastic. As the nurse handed her to me I set my jaw and said firmly to myself (repeatedly) "DO NOT CRY". I failed at this. It's not that I have anything against crying, it's just when you cry people try and comfort you and I wanted a bit of privacy with my girl. Thankfully, PICU being what it is, people did understand and keep their distance as I discretely wiped at my face with the back of my hand and sniffled into my baby's hair. She is taller now than six weeks ago and there is a solidarity to her form that wasn't there before (IN YOUR FACE over-enthusiastic-dietician-from-Launceston, I told you she didn't need calorie sup yet - HA!). This has the effect of her feeling more real to me, less ethereal in her form and more earth-bound. Her beauty is more of-this-world than it was.
She has a fondness for over-saturating now (which means there is sometimes TOO much blood going to her lungs) and so we are now balancing out her medications, upping some and weaning others, while her body works out how to drive itself with its new modifications. It's a tight rope act, but we are getting there. I know Kaylee is getting better because she sucks her dummy with relish and gets really ticked off when someone does something she doesn't like. If she has the energy to get annoyed, it's a good thing!
I feel a bit like a sentry on guard at the moment shouting "HALT! Who goes there?" at rabbits in the forest.
There are always little signs to watch for which could mean something or nothing. For instance, yesterday she has bubbles of snot going EVERYWHERE. This could mean (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot or (b) the highly irritating family who constantly filled up the family room this week with their snotty nosed, coughing children somehow managed to get their germs on me and I transferred them to her and she has a respiratory virus and everything is going to go pear shaped.
It turns out that the answer is (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot. The treatment for this exotic symptom is the use of a tissue.
And there's the feet. Her feet were cold so I started asking the nurse about meds and periphery circulation and shunt sizes and the possibility of another open heart surgery this week etc. Do you know what her profound suggestion was? Put booties on Kaylee. We did and now her feet are warm. Over 7 years of parenting, five babies, and I forgot that booties make the feet warm and cold feet don't always mean crack the baby's chest open.
I am not worrying so much as very alert and like the sentry on duty I am very aware that the next rustle in the bushes could well be the enemy rather than a fluffy bummed distraction.
But for now I had a cuddle. The weaning of the CPAP is going well and once we are off that we can talk about going back to the ward. I like the ward. On the ward we talk about things outside the magic golden triangle of heart beat, respiration and nutrition. We start to talk about Kaylee and make plans like we think that she will be here two weeks, two months, two years from now. That kind of rocks.
Because life with Kaylee is better.