If there's one thing I have learned with spina bifida, it's that there are ups and downs and roller coaster loops, and you just really gotta keep rolling with the punches because you don't know what gonna happen, and you barely know what to expect.
After we realized on Friday that Mira has been wetting her own diapers a little bit, the doctors allowed us to go from cathing every three hours, to cathing every four. They call it Q4. After a couple days of this routine, she is still wetting diapers in between cathing. If she keeps this up we might be able to cut back even more to Q6, meaning cathing every six hours. I am really hoping for this! Every time a foreign object, such as a catheter, is introduced into the body, you are risking infection. On someone with incisions all over the place, infection is definitely something we want to avoid at all costs. However, cathing every four hours is also a hardship on Mira because she's on a three hour eating schedule. So we are feeding her every three hours, but cathing her every four hours. So with that off-putting schedule, she'll just get to sleep from one thing, and have to wake up for another. I'm glad we are cathing less, but I hate that she's not resting like she should because we have to constantly interrupt her.
Some might say to switch to feeding her every four hours, but that won't work either right now because for some reason, even though she's eating a really healthy amount, she is losing weight every day. She lost two ounces in just yesterday. We thought we were going to get discharged tomorrow, but if she doesn't start gaining weight, let alone stop losing weight, then there's no way that's going to happen! It might already be out of the question, and I'm just not aware of it yet. They weigh her each night, so I've been praying all day for tonight to be a good weigh-in.
If she does lose weight at tonight's weigh-in, then tomorrow the neonatal specialist and I will probably discuss fortifying my breast milk. This is where they add calories to it. I found out that no matter what you eat, your breast milk is still only going to have about 20 calories per ounce. So stuffing yourself with cheeseburgers isn't going to add fat content to your breast milk. But the nurses can fortify my breast milk and pretty much make it contain as many calories as they want. Joe and I agreed that if the neonatal specialist wants to do this, then we will. She would still be receiving the nutritional value of my breast milk, and we think she just may need some caloric help to bounce back after all the trauma her body has endured through the surgeries. She just needs a break, and she needs some help. If she loses weight tonight, I'll be prepared to have the breast milk conversation tomorrow. If she gains weight tonight, I'll be prepared to pack my bags! And if her weight stays the same, I'll be prepared to start the 48-hour watch with the nurses.
The nurse practitioner informed me today that if Mira doesn't start gaining weight, then she'll be put on a 48-hour watch before we can leave. However, that 48 hours won't start counting down until she gets weighed and it shows she gained. So if we weigh in at less than or equal to her weight from yesterday, we won't be leaving until 48 hours after a weigh-in where she gains. And she has to continue gaining, or else the 48-hour requirement will start all over.
Basically, pee and weigh-ins have never been on my mind so much in my life! I don't even own a scale at home because I've never been the type to weigh myself. Now, weight is almost all I can think about because so much is teetering on the topic! I want to get out of here, I want to take her home, and I'm ready to be responsible for her. But at the same time, I want to make sure she's as healthy as she should be before we leave, so until she gains some weight, it's gonna be on my mind! I'll update again as soon as I know the outcome of her weigh-in. Pray for fat, people! Pray for fat!
No comments:
Post a Comment