Exhausted....

Today was hard. Very informative, though sometimes too much information isn't necessarily a good thing. Very quiet. Little Bird wasn't doing much of anything today. She didn't open her eyes. She barely squeezed my finger. She didn't kick her legs to respond to our voices. She wasn't fighting the vent. After a few hours, I actually asked her nurse if she'd been sedated before we got there. She wasn't. She is exhausted.


Her last dose of Indocin came at 4pm. From what they can tell, so far, so good. She won't have another echocardiogram until tomorrow afternoon, but Doc H. said her murmur isn't as loud as it was when he listens to her chest. And that is quite possibly a positive sign. She's tolerating the medication, and her platelets have been holding steady. Her blood pressure is lingering on the lower side but that's to be expected. She hasn't had a feeding since Friday morning and her fluids are turned down to nearly being shut off all together. Since the reintroduction of the vent, her blood gases have been coming back really good. Though, she did have an event while we were there. At one point, she stopped breathing and didn't catch it herself. She usually startles when she hears the machine alert, but not this time. Her nurse had to stimulate her breathing by rubbing her back and patting her. This was definitely something I would have preferred not to happen or see. Now I understand why MFH refused to record any video today. 


Her doc introduced an I.V. line in her scalp last night. She ran out of places for them to insert one. This is particularly bothersome to us. In early April, MFH woke me up one morning at five o' clock, telling me he had "the dream". With each of our kids, he'd dreamed of the sex well before the first ultrasound, and he was always accurate. Even dreaming of the twins being boys long before we discovered that we were expecting two. This time, he dreamed of a baby boy, with jade green eyes, named Jude. But this dream was much more vivid. And in it, this baby boy had an I.V. line just behind his right ear. Guess where Little Bird's is located? When MFH finished scrubbing in and got to her bedside, he nearly collapsed when he saw it.


We met with Doc H. to discuss everything. Upon arrival to their unit, Little Bird's first two blood gases were incredibly bad, indicating that she was struggling very hard to maintain the tiny amount of oxygen she was able to take in. This severely increases her risk of brain damage. We spoke more in depth about her PDA. It could have gone from either the right side of her heart, to the left. Or, left to right, which is the type she has. And because of this, more risks, mainly that it may not close. If it doesn't he will try another course of the medicine. We can even go as far as a third if we have to, though he strongly suggests surgery if a second series of doses doesn't help her. She also has pulmonary edema, caused by the PDA. 


We are concerned about the brain bleed. It is now classified as grade two, meaning that there has been further bleeding that has not been contained within the ventricles, and instead has pushed out into the area which produces spinal fluid. There is no way to tell whether or not this will affect her. There is no way to predict if it will heal on it's own or continue to deteriorate. All we can do is pray that it will dissipate. Pray that the damage is minimal. Pray that she makes it thru this. Just pray.


Though we know she can sense light, it's yet unknown if she has damage to her eyes. We won't know until the first week of August, when she is scheduled to have an exam. She can't even wear clothing of any kind right now. I can't buy her booties. I can't dress my daughter. Her body temperature is too unstable, and if she gets overheated it can cause further issues with her heart, lungs, and blood pressure. She isn't able to sweat yet. Maybe it doesn't seem that important. But I couldn't help but hope for some sense of normalcy in such an unnatural situation. 


Her doctor will no longer talk about odds or percentages. Numbers mean nothing anymore. Watch and wait. She'll tell us when she's ready, and what she's ready for. This seems impossible to me when I see babies all around her. Babies that are being rocked to sleep by their parents, or being bottle fed by their nurses. Babies that are in warming beds instead of an incubator. We can't foresee when that will come for us. We have to learn to trust this hospital, these strangers, for however long that may take. And it's the hardest thing we've ever, ever had to do. 






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