Dorrie had a busy day on Friday. We had our follow up appointment with the cardiologist we saw while we were in the PICU. For those who don’t remember, there was a suspicion back then that she had developed pulmonary hypertension due to her lung disease, and this had seemed confirmed by two echocardiagrams which showed increased pulmonary artery pressures.
Luckily, the cardiac cath back in March failed to confirm any such diagnosis, and Dorrie was released from the PICU on captopril (a blood pressure med) to help improve her heart muscle, which -did- show some signs of stiffness (hypertrophy).
Friday she had an echo to see how her heart was looking now, 6 months later, and it all looks good! Pressures appeared to be normal and there was nothing alarming revealed. We’re going to remain on the captopril for now, especially as we go into cold and flu season, as this will hopefully help to keep her inevitable illnesses slightly less severe.
Dorrie was quite tired all day, unusually falling asleep in the office waiting room, and then again in her car seat on the ride home. This may be explained by the fact that tooth #2 has joined its neighbor. She’s been a little fussy off and on for most of the weekend, so that may not be the last tooth we see.
The day before, Dr. Optimist came to the house for a visit and we were finally able to wean her vent settings! Her PS above PEEP is now 7, down from… 8. Not much of a step, but at least it is one.
Miss Dorrie will be 14 months old tomorrow. I notice I haven’t put up any pictures for a couple months; I’ll try to rectify that. But as my mom said, pictures of a baby in her diaper all tend to look kind of the same. It’s the clothes that help you differentiate between when they were taken. Fortunately, we’re moving back in to the time of year where having her dressed isn’t going to make her miserable. This is the ONLY good thing about the approach of winter, because otherwise I am absolutely terrified and will be until next April.
Though still far behind where she ought to be at 10.5 months, her motor skills are showing improvement: now, instead of allowing toys to fall immediately from her fingers, she will instead fling them up at her face and smack herself in the nose. Since this fails to achieve her desired goal (toy in the mouth), she will repeat the process, banging her nose over and over again until she finally drops the toy. She’s stubborn.
She’s still an amazingly happy baby, sometimes even when she hasn’t had enough sleep, and always when she has. She laughs and smiles and would, I am sure, be shrieking happily if she didn’t have that trach in to block her voice. Unfortunately we only ever get to hear her voice when she’s upset — mostly when we change the trach, but also when she’s just so annoyed that she can shove some air up past the cuff. When you’re sitting on the floor with her, even with all the noise in the room from the O2 concentrator and the vent, you can hear her if she starts to cry. It’s a sort of crackly noise.
Her head control is still an area of big difficulty. The tubes are really keeping her back; her legs and lower abdomen are getting very strong. On her tummy, she can lift her legs way up into the air, getting them and her pelvis clear of the floor. But because of the tubes she likes to put her arm straight out to the side, so she doesn’t think about using it to help push her head up.
Friday she has her follow up visit with the cardiologist. I’m hoping everything looks normal again and maybe we can get rid of a med. Her O2 saturation has been pretty stable, so if that’s any indication, the news ought to be okay.
We have a tooth!
On the bottom left, probably one of the front two.
It actually finally broke through last Thursday, but we had some webhost weirdness over the weekend and I didn’t want to mess with the blog until it seemed fixed.
No pictures yet; I still can’t see the dang thing, but I can definitely feel it. Dorrie thinks it’s a game when you try to look in her mouth — she sticks her tongue out.