Monday #1

Well, this morning was the first time during this hospital stay that I've heard our night nurse say to our morning nurse that Haley had a good night! She is still very, very, very sick (as they do like to make sure we realize even when they are giving us little bits of good news), but at least we took some baby steps in the right direction. We will take what we can get and be very grateful for it! She managed to stay off her epinephrine and vasopressin all night long and really all day today so far and her blood pressure was pretty stable all night and this morning! After rounds this morning they decided to try to wean her of her dopamine too, and that wasn't quite as successful as now her blood pressure has been all over the place again this afternoon and early evening. They had her off it for a little while but I know they have started her back on it. She keeps having large fluctuations with minor changes so they are having a little trouble figuring out where she needs to be, but hopefully they will get there soon.

A little bit of her swelling has definitely gone down and her color is looking much better in my opinion! She still has a Buddha head, don't get me wrong, but now her nose is the most prominent feature on her face again and they can actually get her eyelids open to check her pupils. Her pupils are very constricted which means she's well sedated and makes me happy. This also means that they can't tell if they respond to light or not because they're already too small to see if they constrict farther. But at least they are not fixed and dilated which would definitely indicate blindness or brain damage to a certain area of the brain. Also, though she is so swollen her blood volume is actually low. When they did an echo to check on her heart today it actually showed that the heart is underfilling, because while she has a liter too much fluid in her body, most of it is in her tissues and not in her blood stream. This presents a bit of a conundrum because they want to optimize her blood volume but if they give her more fluids it will probably just go into her tissues too and make her swelling worse. So it is a thin line they walk, and they try to help by giving her something called albumin which is a fluid with lots of large 'particles' in it to help draw the fluid out of the tissues and into the blood stream to equilibrate the osmotic pressure. This is a protein you have in your body naturally and hers has been low, so it's hopefully killing two birds with one stone. We'll see!

On the note of having a liter too much fluid in Haley's body, the doctor said that they can't really ask babies to urinate out more than a couple hundred milliliters of fluid a day because it's just too stressful for them otherwise, so we can expect it to take at LEAST 5 more days for her to get rid of all this excess fluid. Getting rid of the fluid is really the crucial step. The fluid is what is making her lungs soaked and making her need the oscillator and then hopefully we will step down to the ventilator. It's also what is putting pressure on her brain. So we just pray that we will continue to make forward progress over the next 5 days, though the doctors and nurses did warn us that this is often a 2 steps forward, 1 step back process.

The doctors have told us to expect to be here for a long haul, which really I guess was pretty obvious but now they have confirmed my suspicions. I'm sure we will be here at least a month, and who knows if it will be that soon. But so long as we make it home with a happy, healthy, smiley Haley-bug eventually.

The neurologists never did come and talk to us today, surprise, surprise. After Haley's seizures last night they have decided to continue to monitor her with the EEG for longer, which makes me happy. She hasn't had any more seizures since being on the Keppra (*knock on wood*) but I'm glad they're watching for them. There is a new intensivist (ICU specialist) on for the week and he was really helpful to talk to this morning. He said there is certainly reason to hope that Haley-bug may make a full recovery and return to herself. Of course the other alternative is also equally possible, but he was encouraging and said that he is optimistic that she will recover. He did say that any time you have an arrest, there is usually at least a small amount of permanent brain damage, but it could be something so minor as to have her one hand be slightly weaker than the other. We can live with something like that! He also said that the EEG, and even an MRI or CT are really not good prognosticators in babies and that the really only thing we can do is wait and see once she wakes up. So at least that makes me quit being antsy for a CT or MRI because it doesn't seem like it will help us much anyway! I am gradually trying to make myself relax and get into this 'wait and see' mind set. They were supposed to do a brain ultrasound today, though that wouldn't rule out anything it could rule in something, but when we'd left the hospital at around 6 pm it hadn't happened so I suspect it won't today. They do want to look for the possibility of any ongoing bleeding because if there is then they won't start her on a blood thinner like they would like to otherwise.

We found out where in the hospital there is a large supply of Children's books, so we went and raided it and now have lots of reading material for Bug since I forgot her bag of books at home. Tomorrow I think we are going to make a CD recording of ourselves (a service they have at the hospital) to be played for her while we're not there. She does seem to do better with us there, so hopefully this will help when other wonderful, wonderful people are taking shifts (THANK YOU - Grandma, Grandpoppy, and Aunt Kelly!)

She is still our smoochable little Haley-Bug and those nurses are lucky the crib rails are just a bit too high or I might never stop kissing her...