Trips to the doctor take pretty much all day. I was prepared for this but unfortunately it meant that it was unlikely for me to get a nap. (Luckily, I was able to squeeze one in after Evan got home). Our appointment at the Cardiac Institute was at 12:30pm and I left the house around 11:40am to get there. It's amazing how much longer things take when towing a baby and baby gear.
While we were in the waiting area the cardiac surgeon who operated on Iris passed by and he stopped to say hello. He's done that several times when we've been in the hospital. Today we chatted about Iris's health, as always, and he asked whether the opthamologists had said anything more about her eyes. He also shared that his dad lives at home with him and therefore has learned how trying it can be to deal with oxygen tanks. That's true, but what's more trying is Iris's medication schedule.
Unfortunately there was no weaning from her numerous medications today. There was discussion of whether to take her off of Lasix (a diuretic) but no dice. So she remains on Digoxin (for SVT), Sildenafil (for pulmanory hypertension), Lasix (for pulmanory hypertension), Zantac (for reflux), Prevacid (for reflux), Simethicone (for gas), and (newly) Nystatin (for thrust).
Here's the good news: she gained weight since her Monday clinic visit. She tipped the scales at 4.49 kg (9lbs 14oz). This is essentially the same as at the pediatrician's on Thursday (yay for consistency) but more exciting is that this weights equates to a 21-gram daily gain since her last clinic visit. That falls within the "normal" range what babies are supposed to be gaining: 20-30 grams per day. The nutritionist told me not to change anything except that I can incorporate slightly more nursing as long as I make sure to keep up with the fortified breastmilk using formula. Honestly, it's a pain to have to pump every three hours so although I'm glad that she's gainig weight, I would love not to have to continue with the feeding/pumping regimen.
Lastly, we can now stop putting a bandage on her incision wound. It has healed well and can now stay open to air. So all in all, the visit was a success. We'll return in two weeks, at which time they'll discuss weaning off meds/oxygen depending on the results of tests (which tests? not sure). Next up: vaccinations, on which she is late.
Evan rode his bike to work today (50 minutes door-to-door) and I was able to get a bit of exercise in the morning and a nap early in the evening. As I write this the dishwasher is running and I keep thinking I am hearing Iris cry. She is asleep -- not crying.
Tomorrow's goals: go on a walk with Iris during the day, no vomit, start to get her on a better eating schedule, possibly catch up with some friends, read a book (?).
While we were in the waiting area the cardiac surgeon who operated on Iris passed by and he stopped to say hello. He's done that several times when we've been in the hospital. Today we chatted about Iris's health, as always, and he asked whether the opthamologists had said anything more about her eyes. He also shared that his dad lives at home with him and therefore has learned how trying it can be to deal with oxygen tanks. That's true, but what's more trying is Iris's medication schedule.
Unfortunately there was no weaning from her numerous medications today. There was discussion of whether to take her off of Lasix (a diuretic) but no dice. So she remains on Digoxin (for SVT), Sildenafil (for pulmanory hypertension), Lasix (for pulmanory hypertension), Zantac (for reflux), Prevacid (for reflux), Simethicone (for gas), and (newly) Nystatin (for thrust).
Here's the good news: she gained weight since her Monday clinic visit. She tipped the scales at 4.49 kg (9lbs 14oz). This is essentially the same as at the pediatrician's on Thursday (yay for consistency) but more exciting is that this weights equates to a 21-gram daily gain since her last clinic visit. That falls within the "normal" range what babies are supposed to be gaining: 20-30 grams per day. The nutritionist told me not to change anything except that I can incorporate slightly more nursing as long as I make sure to keep up with the fortified breastmilk using formula. Honestly, it's a pain to have to pump every three hours so although I'm glad that she's gainig weight, I would love not to have to continue with the feeding/pumping regimen.
Lastly, we can now stop putting a bandage on her incision wound. It has healed well and can now stay open to air. So all in all, the visit was a success. We'll return in two weeks, at which time they'll discuss weaning off meds/oxygen depending on the results of tests (which tests? not sure). Next up: vaccinations, on which she is late.
Evan rode his bike to work today (50 minutes door-to-door) and I was able to get a bit of exercise in the morning and a nap early in the evening. As I write this the dishwasher is running and I keep thinking I am hearing Iris cry. She is asleep -- not crying.
Tomorrow's goals: go on a walk with Iris during the day, no vomit, start to get her on a better eating schedule, possibly catch up with some friends, read a book (?).
Thanks for the long, informative blog, sweetie. You are now so trained and focused on hearing Iris cry that your brain finds that pattern in white noise. I think it's like, when I was younger and would drive long distances on the Interstate highways, I would see little red, white, and blue Interstate signs floating in my vision as I drifted off to sleep. It's just a sign of the amazing adaptivity of our brains.
ReplyDeleteIt's so good to hear of Iris's continued progress. Hang in there, all of you!
Love,
Dad
thanks for the update, Sarah! Keep up the fantastic work, you are in all seriousness my hero. Teresa
ReplyDelete