I've been here since last Monday. Ella is doing ok. She will be getting another transfusion today. It takes 2 hours to get 6ccs. The ultrasound of her brain came back clear.
They took her off the bili lights.
They are going to try to take her off the dopamine throughout the day, and if that works they will start feeding her breast milk tomorrow. My milk is just now coming in. I'm getting a few teaspoonfuls at a time right now.

We will be staying up here tonight, at a place like RMH.

I feel completely helpless right now.

I have an appt with my therapist tomorrow, but I'm not sure we'll be able to make it.

And there is a support group for parents to preemies in the area. The hospital social worker is hunting down times for the meetings for us.

It will be nice to sleep in a regular bed tonight. And I am sure dh agrees. He's been sleeping in a pull out chair this whole week.

great news that her u/s was clear. I'm glad you're finding a preemie group, it will help with the helpless feeling.

I think it's important you keep your therapist appointment. This is a stressful time, many of us who have been near an NICU know how stressful it is. But part of taking care of you is seeing your therapist. So go.

Good luck. One of the only times I cried during the whole thing was when I left the hospital without my daughter. I just reminded myself that the whole thing was just a blip on the picture of her life, and she wouldn't remember any of it. You really do need to take care of yourself as best you can, including therapist appointments and getting some sleep.

Try to keep that appointment, Jenny, I bet you need it right now more than you even realize. It will help you be strong for Ella if you are taking the best possible care of yourself.

I bet you can't wait to see/touch/hug/kiss your little boy!!!

I agree with trying hard to make that therapy appt.

Thinking of you!!

The appointment's already been rescheduled. We wouldn't be able to make it in time tomorrow morning. Rounds begin at 9:30, and typically last 45 minutes. There just isn't enough time to get home.

I did reschedule for Monday afternoon. That will be easy.

We will be getting home tomorrow late afternoon, and returning on Friday morning, possibly with M in tow. He is very anxious to see his sister.

When we left her she had been flipped onto her belly again. She fights the leads and tubes so much less on her belly. And she had just peed on the brand new diaper, before the nurse had a chance to close it up. Better on the new diaper than on her bedding though.

Having your kids 75 miles apart is not a fun feeling. It's torture.

Is she still breathing well? Is she on the vent, or are they doing the CPAP? Is she opening her little eyes yet?

I'd bet my left arm they're happy her kidneys are functioning, no matter where it lands

Speaking of, how is Ella doing? You haven't mentioned a vent of CPAP -- so her pulse ox stats are good? What about risk of ROP?

THinking of you, jj.

She is still on the oscillating ventilator, and she is doing ok on it - but there is talk of switching her back to the conventional vent.
No discussion of CPAP yet, but I expect at any time there will be. Most preemies need it, and I know that so it's not so scary to me.

I was so tired I slept through my 5am alarm. Dh heard it about 30 minutes later. Soon enough I will get into the routine of the pumping and won't need the alarm.

I'm looking forward to picking M up. I'm looking forward to sharing the pics we have of Ella with him, and answering his questions. It will help me find a new perspective.
I'm looking forward to sleeping on my couch tonight.

And I adore this place we are at. Our entire situation fucking sucks, but this place makes it suck just a little bit less.

I am glad you like where you are. We set up a Carepage for my son and it is so helpful. www.carepage.com It updates everyone so you do not need to call people. It also lets you ost pictures. It is very handy.

Doh. typo. It is www.carepages.com