We’re excited to share an update on Nora!
A few days after Nora was born, we learned that she has an atrial septal defect (ASD) (a hole) in her heart. This is a common defect, one that usually doesn’t need to be corrected right at birth; in fact, sometimes they even correct themselves over time. A few weeks ago, we took Nora in for her first follow-up appointment, and the doctor did an EKG (electrocardiogram) and an echocardiogram (an ultrasound of the heart). Unfortunately, the hole didn’t fill itself in, and it is actually located a little lower than they originally thought, so they are now characterizing it as a primum ASD.
We don’t understand too much about it, but the cardiologist informed us that a primum ASD generally does not correct itself, and cannot be fixed with a catheter, which means Nora will probably need open-heart surgery when she’s two or three. We are scared about this, but luckily, a primum ASD surgery seems to be a fairly common, straightforward procedure: they basically just cover the hole with a patch. You can learn more about the procedure in this article: Repair of primum ASD with cleft mitral valve. We’ll take Nora in for a sedated echocardiogram in March to get a better look at things.
Nora’s new accessory
Nora was born with a flat spot (plagiocephaly) on her head behind her right ear. She was also born with torticollis (a tightening of some of the muscles in the neck), so she liked to turn her head to the right. Because of the flat spot and the torticollis, she always turned her head to the right when she slept, which made the flat spot worse. We worked so hard to help her with the torticollis, taking her to weekly physical therapy appointments and doing daily neck stretches with her. We even bought her a little sleeping hat, called a Tortle, to keep her head from turning to the right when she slept. But unfortunately, the flat spot never went away.
As a side note, the physical therapists think the torticollis is gone for the most part, but you may notice that Nora likes to tilt her head to the left and turn it to the right when she’s holding it up. They think this might be a muscle imbalance resulting from the torticollis, combined with her favoring her right eye (which has better vision than the left). We’re hoping that as she keeps building her neck strength it will even out (although we do think her head tilt is actually quite darling).
When her flat spot didn’t get any better, we took Nora to an orthotist, who evaluated her and suggested that she would benefit from a corrective helmet. She started wearing the helmet the last week in September, and will continue to wear it 23 hours a day for 3-6 months. We were a little nervous that she might be uncomfortable in the helmet, but it doesn’t seem to bother her one bit! Since she’s already wearing the helmet, we are hoping to kill two birds with one stone and get her in an early-start hockey comp league next week.
Nora has been doing really well with her physical development; the only thing she is behind in is her gross motor skills. But she is continually progressing, which is what we focus on! She is just recently mastering the art of sitting, and the helmet has been a great protection during her wobbly stage! In just the past few days she has also started standing on her own (using the couch for balance)! We put her toys on the couch and help her place her hands for balance, and she’ll stand there for a few minutes at a time, playing with her toys! She works so hard for each of her milestones, and she always gives us a beaming smile when she figures out how to do things.
Her neck strength has come a long way; she loves to hold her head up during tummy time. She has also learned how to roll over, and sometimes will keep rolling until she hits a wall. She reaches out for toys when she’s on her tummy, and has started pushing the ground with her legs to help her reach for them, which is a precursor to crawling!
When we took Nora to her first eye appointment a few months after she was born, the doctors dilated her pupils and looked through them to see the insides of her eyes. They told us that she has retinal colobomas in both eyes, and that the colooboma in her left eye is compromising more of her vision than the one in her right. We recently took her to a follow-up appointment, and they confirmed their findings from before.
To be honest, the eye doctors really can’t tell us much about her vision until she gets a little older. But we feel like she’s doing really well! She can find us when we call her name, she laughs when we make faces at her, and she loves reading books and playing with her toys. Sometimes we do little experiments to find out how far she can see; to me it seems like she can still see me when I’m standing about 10 feet away from her.
Nothing new here. We took her to some more auditory brainstem response (ABR) tests this summer, and they confirmed the findings from the first few ABRs. Her hearing loss is considered moderate, so she sports hearing aids. Recently she has become more interested in them, and sometimes she pulls them all the way out of her ears. So whenever she puts her hand to her ear, we say, “No no,” and she draws her hand back. Sometimes she laughs at us and reaches right for them again.
- Nora is starting to warm up to baby food. It has been a long process, but she’s getting the hang of it!
- She has finally overcome her fear of being in the bath tub. Up until recently, for the first few minutes of her tub she would be so terrified she would make the most heartbreaking whimper. But she’s got it down now and loves to kick and splash!
- She loves music, especially playing the guitar/ukulele with dad.
- She likes to feel and scratch different textures. It’s the cutest thing ever. She puts her hands palms-down on a surface, and repeatedly grasps at it (opening and closing her fists), to feel what is there.
- She loves to babble and say “Mama” and “Dada,” except for when we are around any medical personnel who are trying to observe her speech development. In that case, she won’t make a peep!
- She loves reading books!