The surgeon's assistant called Friday to tell me February was just around the corner (My birthday is Feb 3rd so I know this isn't true)and it was time to schedule Llewellyn's cleft surgery. It's scheduled for February 9th with pre-op on my birthday. Probably not the worst birthday I'll ever have but likely a far cry from the best. Thanks to the PRS network on yahoo (http://health.groups.yahoo.com/group/pierrerobin) Ive learned that essentially, the surgery is going to suck. She will be in immense pain for a while (at least a full day potentially several). Pain will be controlled with morphine and tylenol. We need to be aware she may have night terrors as a side effect of the anesthesia. We need to smell as much like us as possible and bring clothes that dont go over the head. The "no-no's." *sigh* The no-no's are the devices into which you strap the baby's arms so s/he can't stick their hands and fingers (and anything else) into their newly repaired mouth. Some doctors don't believe in using them because it requires a ton of strength to undo surgery. Some doctors say after the initial 48 hours the baby should be ok enough or back to normal and wont need them. Other doctors say 4 weeks. FOUR WEEKS. As in a month! I can't imagine. We may do what we did with the apnea monitor and perhaps remove them as she proves herself to not need them. In any event, I am worried and there is nothing anyone can do about it. And it turns out the surgeon's assistant was right, according to my countdown February really is right around the corner.
Ah yes, the apnea monitor. How I LOATHED the apnea monitor. My husband ADORED it. He felt it gave him peace of mind that nothing was wrong with the baby. We were always assured she was breathing. Meanwhile, as a stay at home mom I had to put up with turning it on and off and resetting it and hauling butt down the hall for a false alarm or leaping out of bed in the pre-dawn for a false alarm...and call it mother's intuition if you'd like but I knew there was nothing wrong with the baby or her breathing. Llewellyn was on it for 8 long and grueling weeks. This leads into things Im grateful for...
She never had a single episode of apnea. We were told she was the first PRS baby in the history of the hospital to NOT require oxygen at birth. Her heart and brain scans came out normal. Her chromosomal tests came back showing no abnormalities. Her amniotic band did not interfere with the growth of her hand or arm. She has not needed a tube for feeding or breathing. She has not yet needed the jaw distraction surgery (and Im hoping she never will). She continues to gain weight, albeit slowly. She has met and exceeded several milestones. She did not have colic! She can stick her tongue out ever so slightly. We didn't need the dreaded trach that so many PRS babies do.
She appears to be a happy baby. She laughs and smiles alot. Her reflux is under control with the help of prevacid (altho it stains her clothes!). She coos frequently. She loves her mommy and daddy. And we love her.
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