I usually update this blog while I am pumping before bed. Lately, I have been too tired to write. I’ve actually been nodding off while pumping! I guess it helps that nothing earth shattering has been happening either.
Since the last post, we had a feeding specialist appointment, which went well – there was no crying, but it did not show any improvement, nor any regression, so I guess it wasn’t terrible. This week I’m really going to focus on this – even if it is just mouth swipes with tastes of food, just to stimulate her tongue and mouth. We go back to see the feeding specialist on Wednesday.
Hana also had bloodwork on Friday. This always makes me nervous – not the actual blood drawl, but the results. The actual blood drawl wasn’t so bad and we ran into some neighbors while we were waiting. They have a dog, which is how we met them – at the dog park. They also have a boy who is three months older than Hana. Anyway, her BNP result came back in a few hours. That’s the test that I get nervous about because it is used as an indication for heart failure and Hana’s results have been consistently climbing. This time, her result was only five points higher than 11 days ago, which is much better than the 150-200 climb that we have been seeing. The rest of the results were posted online the next day. Her Magnesium, CO2, Chloride, and Sodium were all out of range, but they didn’t seem to be too much out of range. But what do I know? Maybe what looks slightly out of range is actually a lot.
The one number that didn’t seem to change much was her BUN. It was 13 eleven days ago, which is a normal number for a healthy baby. This time it was 15 and they would really like to see it at around 30. This is kind of a measure of how dehydrated she is and they would like her dehydrated so she has less fluid the heart has to work with. They increased her Lasix so I don’t know if she is supposed to have a higher BUN number because of that or how all that works. Hopefully we will get more answers today. But it does make me nervous that she could be holding extra fluid even with the Lasix increase.
Hana’s vomiting is about the same – once or twice a day. Sunday she didn’t vomit at all! The volume she vomits is not nearly as much as it used to be. She seems to be triggered by coughing or gagging. We’ve been trying to run her feeds when she is awake and not while she is sleeping, with the exception of her continuous, overnight feed. This is hard because there are only two hours between when one feed ends and another begins and her naptime sometimes runs into this. Her naptime is not on a strict schedule. I wish it were but with all the appointments, its hard to get on a really regular napping schedule. I don’t often have a lot of choice with appointment times either. I have noticed that Hana’s vomiting seems to be less when she naps well. I mentioned this to the feeding specialist and she confirmed my suspicion, saying that some recent research has been finding the same thing. We need rest to digest.
This week we’ve had the least amount of help, by far, since coming back home. It has been both good and hard. The amount of things to do is manageable, if I don’t have to cook, clean, shop or pay bills! We ate dinner after 9pm every night, except when we went out for my birthday! Luckily, we have a lot of frozen meals that we’ve started dipping in to. Paul has been doing most or all of the cooking. He’s pretty excellent at making pizza. This week we did have to make time to start shopping for a car, which is probably a sigh of relief for many people. Our car is a 1998 Honda Civic hatchback. It’s a manual transmission. It doesn’t have power steering and it only has two doors! It is a great city car if you don’t mind parallel parking on a hill with a clutch and no power steering. Actually, we drive with Hana so infrequently that it really hasn’t been an issue. But the time has come. The clutch badly needs to be replaced and we’d like something with more up-to-date safety features to drive Hana around in than a 17-year old car!
[I wrote this post two days ago and then never got a chance to post it!]