First Weekly Annabelle Update

I know many readers are probably wondering what's new with Annabelle's health and all of her many doctor visits.  Things have quieted down a bit since she was being seen by a bazillion doctors in the NICU and since those first few months home.  But we are still seeing eight specialists, her regular pediatrician, and two therapists.  Yikes!  Seven of the eight specialists are in Richmond (about an hour away), with the other in Newport News (a half hour drive, if traffic isn't bad).  Thank goodness both therapists come to our house (a zero minute drive, hurrah!).

This week I took Annabelle to Richmond to see her neurologist.  He gave her a neurological exam, which she HATED, and referred us to the craniofacial clinic to have someone look at her flat head.  The neurological exam involved the doctor holding Annabelle in different positions to check her muscle strength, reflexes, and muscle control.  The doctor didn't see anything concerning this time.  It is clear that Annabelle is developmentally delayed, but we expected that, so it was no surprise.  She has good head control but needs more time on her tummy to learn rolling and strengthen the muscles needed for sitting.  Unfortunately, she still despises tummy time.  At our last neurology appointment in August, the doctor mentioned that Annabelle's head is flatter on the right side than on the left, a condition called plagiocephaly.  A lot of kids get this now that they recommend kids sleep on their backs.  The pressure from constantly laying on the skull combined with the softness and flexibility of baby skull bones causes a flat spot.  It can be corrected simply by reducing the amount of time that pressure is on the flat spot (we hope!) and also by wearing a special helmet (we hope not!) or, as a last resort, by surgery.  The neurologist said it was a good idea to visit the craniofacial clinic now before things got any worse so that we could hopefully get away with less intervention but still keep an eye on the problem.  I am not thrilled about having another doctor to visit in Richmond, but I grudgingly agree with the neurologist's thinking.

On Wednesday, Annabelle's speech therapist came to work with her on her feeding skills.  Annabelle drinks her bottle inefficiently and noisily.  Her guzzling noises are cute, but they indicate that she is not getting a good seal on the nipple and is therefore swallowing more air and working harder to get the milk.  This week Annabelle was asleep at her appointed time, so the therapist gave me some more mouth exercises to do to help Annabelle's tongue and jaw.  I was skeptical at first that these exercises would make much difference, but Annabelle is eating more efficiently and has been smiling so much more that now I think the exercises have really helped.  Wanna see?

So, three times a day I stretch and gently rub Annabelle's lips and gums and encourage her to chew on my finger.  I hope that she'll continue to get stronger and more coordinated because introducing solid food is not far off, and I want her to be ready!

The biggest issue with Annabelle this week was her eating.  She is currently on a super-fancy (and expensive) formula that is made up of simple amino acids and basically requires no digestion.  We mix that with harder-to-digest rice cereal in order to increase the number of calories she gets per ounce.  She needs extra calories both because she isn't able to drink as much volume as she should and because of her heart defect, which means that she requires extra energy to keep things running.  Getting the ideal proportion of rice cereal has been tricky.  Too little, and she's not gaining enough weight.  Too much, and her system gets backed up and she stops eating well.  In the middle of the week she wasn't eating well at all, and I was so worried.  I really don't want her to have to go back on a feeding tube, so it's very important that she continue to make progress with how much weight she's gaining and how much she can take from the bottle each day.  To have a few days of poor appetite is very, very stressful!  Fortunately, cutting back on the amount of rice cereal we mix into the formula has really seemed to help, and the past few days have been record-breakers for Annabelle!  I hope she'll show a good weight gain next week.

Tummy time is increasingly important, both for developing the ability to roll over and to give Annabelle a position that puts no pressure on her flat head.  I have been trying to get her to lie on her tummy, on top of the Boppy pillow for extra propping, for just two minutes a day.  She is not happy.

Tummy time is for the birds!

But today I discovered that if I let her look at Sophie's angel nightlight while she's on her tummy, she is at least quiet and interested.  She loves lights, so I'm glad that we can make use of her moth-like attraction.

This coming week is pretty quiet - just a visit from her speech therapist on Monday and the physical therapist (who works with Annabelle's vision and holds my hand a lot, too) on Thursday.  I will try to update again on all that next weekend.