I'm been really discouraged lately, thinking about how much "catching up" Becca still has to do, even though we've hit the magic age by which all symptoms of prematurity should have magically disappeared. (That's the age of 3, mind you, and the general thinking is that preemies, if they are going to catch up developmentally, do it by age 2, though we give micropreemies like Becca another year because of the additional challenges they face.) I won't get into all the reasons I've been discouraged, but they are there, they are real, and I've got to own up to it. But then this evening, I was typing up a quick summary of the issues Becca and I faced in my pregnancy and the rocky road she had in the NICU, and I'm once again reminded that everything she does is a miracle. (And someday I really am going to write that post about my theological understanding of miracles, so for now please don't overanalyze my use of the term.) The lists are written for other preemie mamas, so some of you may not understand all of the terms, but don't worry about that. Here they are:
Pregnancy: 27.6 weeks, severe IUGR (370 grams), fatal prognosis @ 17 weeks, 1 week hospital bedrest, emergency c-section. Prematurity due to pre-e, HELLP, IUGR, Fetal Distress (including severe heart decelerations) and Reversed Blood Flow. In other words, my pregnancy was a clusterf&*^. But I have a cute kid now!
Becca: 27.6 weeks (I tend to think of her as a 28-weeker) - very severe IUGR, anemia, mild CLD, osteopenia (multiple fractures), jaundice (& hyperbilirubemia), transfusions (26), multiple infections, pulmonary hypertension, hypothyroidism, septo-optic dysplaysia, silent aspiration, double inguinal hernias (repaired surgically), feeding difficulties, FTT, g-tube (at age 2), multiple failed hearing tests (functionally deaf for 8 months, corrected with tubes), adenoids out, plagiocephaly and helmet therapy, severe sensory processing disorder resulting in feeding problems and g-tube dependence, gross and fine motor delays, growth hormone injections. 123 day NICU stay, 20 days inpatient since NICU discharge.
So, yeah, if you didn't know Becca and just read this list, there's no way that you'd guess that she took 4 ballet classes this week AND peed in the potty twice. That's my daughter.
Are you involved with TEIS (Tennessee Early Intervention)? They were a good resource for my daughter, Sarah. At 3 she was mentally like a 1 year old. I felt discouraged too. She is 15 now and is doing great!
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Crazy-awesome indeed! Becca's so smart, active, and funny (another sign of intelligence). Love to you all.
ReplyDeleteYour little girl AND you are amazing. Your story fills me with hope!
ReplyDeleteBallet and potty in the same week! I call that a great week!
ReplyDeleteAll this "catch up" talk has always bugged me. It is as if there is a magic age by which some corner will be turned and all will be as if nothing had happened. Eliza's neo always said that the catch up by 2 notion related primarily to later term preemies and was meant to reflect their physical size and gross motor skills. Dr. G. believed that for every month in the NICU you almost had to had a year to the magical "catch up" date but that even still, you would not have the full sense of what was a delay versus a disability until school age. I was glad he told me his opinion since it kind of eliminated some pressure and angst as Eliza's birthdays have passed and she still was/is experiencing delays.
As John said to me the other night, perhaps it's harder to tell when you see her all day every day - but when I came over the other day I thought Becca had done an AMAZING amount of growing up since I last saw her! In a mere two months, as far as it seemed to me, she had magically transformed from a toddler stringing together two-word phrases and sort of bumbling around the apartment to a little girl using her imagination to play pretend, speaking in full sentences and colloquialisms, using the potty, putting herself to bed... Maybe it was just a super-exceptional night, but even if maybe she's still smaller than her peers and a little later in doing some of these things, it seems to my untrained eyes that Becca's catching up very well. In any case, I sure had fun seeing her and you guys. Hugs!! - Emily, who doesn't have a blogger identity.
ReplyDeleteAw, she's so amazing, though. Don't get discouraged! *HUGS*
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