NICU day 3

Not much change to report. Daniela is still--as the nurses say--"snowed under" by the phenobarbitol. Keeping her on a high level keeps her sedate and lessens the severity of the seizures. We've been told to expect the number of seizures to increase now and for the next day or two before they begin to taper off.

The seizures occur because there is swelling (edema) of her brain from the stroke. As the swelling decreases, the seizures should too. They're running some coagulatory studies today (which involve taking a lot of blood, so much so that she may be depleted entirely and require a transfusion for which neither A or I can be donors) to see if a bleeding or clotting disorder may be the reason for the stroke. It's not entirely likely as there is no history of any such disorder in either mine or A's family but no stone unturned, you know?

She's still on the ventilator but breathing room air through it. She has a tendency at times to "ride the vent" or let it breathe for her. They tell us this is because of the phenobarb level being so high and also the fact that she goes apnic when she seizes so the vent then does the breathing for her. But she is breathing on her own a good portion of time despite the vent so that's good.

They're going to run an MRA (a more 'intense' version of the MRI that looks specifically at the arterial and venous structure of the brain--that's my understanding of it) tomorrow and that may indicate whether the stroke (or strokes--there is a possibility she had 2 close together) were hemorrhagic (bleeds) or hypoxic (lack of oxygen) in origin.

The neonatologist and the neurologist are both optimistic that Daniela can make a full recovery from the stroke(s). As they say, her prognosis is good. I hold onto that, a ray of bright in an otherwise dark situation.

While this news lightens my heart, it's so hard not being able to hold her as often as I would like to. Holding her can cause too much stimulation which, in turn, brings on seizures. I got to hold her for a little over an hour yesterday courtesy of our favorite NICU nurse. We adore her. Her counterpart after shift change, not so much. When we went back last night, looking forward to giving Daniela a bath as our favorite nurse had said we could do earlier in the day, mean counterpart nurse never even gave us the option, nor was I allowed to hold her. It about broke my heart. I started to cry and this got her to asking me "what's wrong Mama?"

What's wrong? WTF do you think is wrong? There's a long list of what's wrong--the shortened version: A) My daughter is in here, connected to so many damn wires and whatnot that I can't just touch her like I want and need to. B) This not how this was supposed to be. In a "perfect" world, she would have transitioned well after delivery, not had a stroke, and been able to come home with me, to meet her big sister and the rest of her family. C) Do you know how much I need to hold her, to love her, to let her know that I'm there (A has had a cold the past two weeks so he's opted not to hold her while she's in the NICU for fear of passing it along to her)? Do you know how hard it is for me when you tell me I can't touch her, that she needs to be left alone?

She said she preferred not to let me hold her because of the tenuous IV in her foot (they moved it from her hand yesterday to her foot). Funny thing is, when I held her for so long in the afternoon with nice nurse, the IV was in her foot--nice nurse was the one who inserted it there and she had no problem with me holding her despite the foot IV. It's not like I'm sitting there jiggling my girl around. No, it's more like I sit and hold her, talking softly to her, lightly caressing her hands with their long fingers or just holding one, softly stroking the headful of dark beautiful hair (so MUCH hair!), staring at her in wonder. Urging her to fight, to get better. To hurry up so she can come home with us.

I just want her to know that I'm there, that I'm her mother, that I would never leave her but that I'm not allowed to be there all the time due to hours and regulations. I'm worried that we didn't get to bond for very long after her birth. Will she know who I am? Will she know how much she is loved?

Several of our close friends want to come see her at the hospital. I'm not sure if I'm ready for that. I mean, I want them to see HER, not the machines and wires and things all connected to her. I want them to see how beautiful she is, how she resembles Juliana when she makes certain expressions or yawns, I want them to see her for her, not the her who is there on that bed, sick and letting machines function for her. Is that wrong of me? Selfish of me?

I feel like this is killing me, a little bit at a time, inside. Why me? Why us? (or for that matter, why ANY of us who've dealt with IF?) Haven't we been through enough on this journey?

I would gladly trade places with Daniela in an instant, if it just meant that she was healthy and home and that this entire thing was just a nightmare, one that I wake up from and it's over.

Sadly, that is not my reality right now but oh, how I wish it were.