9 Months Old

March 17, 2015 at 1:34 AM Leave a comment

It’s hard to believe that our little Super Millie is nine months old already. Time is flying by at an alarming rate.

Health-wise, Millie is doing really well all things considered. In February we took her in a few months early for her cardiology checkup because we have been worried about a barky cough she’s had since the hospital. Also, the cardiologist we had been seeing left so it seemed like a good time to get set up with the new one, who is actually the cardiologist that diagnosed her congenital heart defect (CHD) in utero.

Prior to her appointment we were asked to do a Holter Study, which is a test where Milllie wears a heart monitor for 24 hours and we make notes about her activities. It’s not easy keeping a very mobile, nearly 8 month old (at the time) from removing her own monitor leads. Fortunately, she only succeeded once on purpose and once by accident, so we got a good picture of her heart rhythms throughout a typical day. What we learned is that due to the location of her repair, Millie’s heart is still pacing from a different part of the heart than normal. As a result she has a very low heart rate. Her heart rate ranges from 54-126 beats per minute with an average of 82/min. I believe a normal infant heart rate ranges from 80-160/minute. This is something that may correct itself over time or may not. There is really no way to know. Her cardiologist said its nothing to worry about now, but I find it very unnerving. I find myself checking her breathing A LOT while she sleeps.

The rest of her cardiology checkup and tests went fine. Her repair looked good on the echocardiogram and seems to be growing with her. Her heart function also looked good on both the echo and EKG.

The cardiologist could find no cardiac reason for the cough so she sent us back to Millie’s ENT and arranged for us to see a pulmonologist. We saw the ENT about two weeks ago and he did another endoscopy to check Millie’s vocal cord paresis, which still looks nice and healed. So he gave Millie a two week trial prescription of Zantac to see if maybe reflux was causing the cough. Because her cough isn’t constant, it’s hard for me to say whether that made a difference.

We see the pulmonologist today to have Millie evaluated for primary ciliary dyskinesia. It’s a very rare condition that sometimes occurs in conjunction with the heterotaxy syndrome (her misplaced organs we sometimes refer to as situs ambiguous) Millie has in addition to her CHD.

I’m very nervous for this appointment because I don’t know what to expect. I know there will be blood work. But I’ve heard that there is also the chance of a fairly invasive lung biopsy to diagnose this. I’m worried. (Hence the late night blog post after months of nothing. Sorry about that, by the way.)

Developmentally, Super Millie really lives up to her name. Much like her older brother, this girl is a rock star. She’s been crawling for months now, has been pulling herself up and walking along furniture for close to two months and over the last few days has been standing up straight and balancing on her own. She is VERY close to taking those first steps. Which is alarming for me, because she already gets into enough trouble while crawling. She says Mama, Dada and her own version of Tucker. I think she tries to say dog sometimes when referring to Billy. She’s picked up some baby sign language and can ask for milk and tell me she’s “all done.” Her fine motor and problem solving skills are ridiculously good, which is why she is so very adept and getting into or at pretty much anything she wants. Trouble with a capital “T” for sure!

She plays “So Big,” peekaboo and hide and seek. She claps her hands. She really loves music – both making it herself and dancing to it. This girl’s got some serious rhythm. She “sings” herself to sleep when she’s tired.

Millie’s fifth tooth is coming in now. They’ve been coming in pretty fast and furious. Which for Millie means some general fussiness in the evenings for a day or so, then an hour or even less of pure anger and frustration, and suddenly there’s a new tooth. In addition to using them for eating, she also enjoys chewing on furniture and people’s feet (both her own and others’).

She is eating pretty well considering our rough start in that area. When it comes to baby food, she enjoys veggies over fruits and meats. We’ve just started some finger foods as well as letting her have tastes of some of our more easily chewable foods. She seems to be enjoying that. She did go through a period where she really liked taking bites of mine or Daddy’s M&M cookie ice cream sandwiches in the evenings, but she seems to be over that now. (We’re fine with that. More for us.)

Because we haven’t had to use Millie’s g-tube in months (yay!) we had hoped to get it removed after the cardiology visit if all went well. But with the possibility of more tests by these other docs and who knows what possible procedures, we held off. But boy am I excited to get that thing out soon! Although she hasn’t succeeded since the one time at the end of December, Millie is very persistent about wanting to remove it herself. I also worry constantly that with all her climbing and moving that she’s going to snag it on something and pull it out accidentally. Even though it’s not hard to take care of (I flush it once a day), her desire to tug at it is a constant source of stress for me.

She had her nine-month checkup with the pediatrician last week. It was mostly a non-event. She got a flew booster and the doctor pretty much used her as a teaching aid for a nurse practitioner student that was following him. It’s funny, with Tucker these well-child visits were a huge deal to me. With Millie, they almost seem pointless. The doctors don’t do much when compared to her other checkups and even when I do have questions, I usually forget to ask them.

But it is nice to get her growth stats, which were as follows:

Height: 27.5″

Weight: 17 lb. 4 oz.

Head: 18″

Basically, she’s just under average for height, relatively small as far as weight and has a pretty big head. About what we’d expect given her health issues and genes (Glenn and Tucker have big heads too).

She’s strong and smart, full of personality, and as far as we’re concerned, practically perfect in every way. (But a few prayers wouldn’t hurt as we head to see another new doctor today.)

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Once upon a dream. “So… When are you due?” Or “Oh… You’re just fat! Shit. Now what do I say?”

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