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Our little Elsa is now 4 months old! Hard to believe, as time has flown so very quickly. We love our little angel so much. She is doing very well, and the WHS community continues to be such an amazing support to us. Thank you all for your messages! Here are some updates, across a variety of areas:

Weight: Elsa was recently (this week) weighed by our lactation consultant at 8 pounds, 6 ounces. While this keeps her off the bell curve of her peers, she seems to be hanging in at the 50th percentile mark for WHS babies, which keeps us feeling somewhat on track! This past two weeks, she gained at a rate of just under .5 ounces a day. Not too shabby! We spoke with a nutritionist through Early Intervention, questioning if Elsa should get a G tube, but as she’s continued to gain week over week, and our nanny is doing a great job getting her to eat, we’re not seriously considering that right now.

Feeding: This little one still is breastfeeding pretty well! The lactation consultant weighed her before and after breastfeeding, and found that our estimate was right on — she’s getting about 1 ounce, when she breastfeeds. We follow this up with formula mixed to be 24 calories per ounce, and she’ll usually take between 1 and 1.5 ounces extra, for a total of 2 to 2.5 ounces per feeding. Lately, we’ve averaged 16 ounces a day, but we’re working to hit 17+. Excitingly, she’s begun opening her mouth for the bottle! Usually, Elsa only does that for breastfeeding. We do notice that she breathes much more heavily at the bottle than the breast, a sign which our E.I. feeding/speech therapist says points to higher stress during bottle feeding.

Speech: This is an area of much excitement for mommy and daddy! Elsa has now exercised all of the vowels in the alphabet. She’s accidentally said “uh-oh” a few times, and we get lots of sliding “oo’s” and “aa’s.” Sometimes, she really gets to telling us a story, full of fun inflection, which we listen to very intently! She also has begun munching a bit on her mouth toys (tri-chew and infant finger toothbrush), with E.I. tells us is a very good sign!

Development: Elsa still does well at tummy time and tracks objects at a distance, particularly people and a high-contrast black-and-white toy. She’ll grasp and hold onto toys, but we still haven’t seen her hone in on and grab for an object (actually, we’ve seen her do that once, so we know she can, but it’s never happened since…). Her eye contact has been excellent, and she will follow back and forth between people talking. And she smiles, a lot! Her orientation to midline is MUCH improved, thanks to awesome tips from our O.T. — swaddling arms at chest, applying gentle pressure when her hands are at midline, wearing her in a baby sling and infant massage twice a day. Mommy loves giving the massage, and Elsa is now able to give mom eye contact during most of it, though she does get squirrely on the arms. Things we’re working on, which remain a challenge for her, are arching/retracting and staring at the ceiling/off in space.

Seizure: We’re not sure, but we think Elsa had her first seizure this week. She was acting a little funny when we came home from work. Then her face got sort of stuck in a really extreme pout for a minute or two, and we’d never seen her do that before. During her bath, about 1 hour later, she got extremely red in the face. Even the whites of her eyeballs looked red. While this was happening, her mouth was drawing to the side in a way we’ve never seen. She didn’t shake but her face remained very red. We just held her hands, waiting for whatever was happening to pass. Even out of the bath, the left side of her face (and eye) remained red. There was almost a line separating the light side from the red side. The mouth drawing and strange facial movements continued, though less so. Eventually (about 15 minutes or so), the color faded, and she was mostly back to normal, but seemed really spent. Our pediatrician feels that it was an “event” of some kind, so we’re working to get into neurology asap, to learn more.