/ The RE's Muse: NICU day 5

The RE's Muse

After 4 years of infertility, 2 surgeries, 1 miscarriage, and 19 months of high risk pregnancies, hubby and I now have two little women in our lives--one a toddler, the other not far behind. Buckle your seatbelts, it's gonna be a wild ride.

Tuesday, February 06, 2007

NICU day 5

Daniela had her MRA earlier this morning (yeah, finally). Now we're simply waiting for the radiologist to read it and give the neuro the results...who in turn will tell us the findings. I love the trickle down process.

I'm so so happy to say that Daniela has not had any seizure activity that any of the nurses have noted for the past almost 24 hours now. In addition, she's slowly regulating her phenobarbitol levels, meaning she's sort of trying to come out from her haze as her body begins to self-regulate the level from the high 'loading' dose they started her on. Last night's nurse told us that she was trying to open her eyes and today's nurse told us that she's starting to pull at the vent tube...meaning she wants that thing out of there. Can't say I blame her.

The good nurses are the ones who let me change her and take her temperature. We've had a few of those so far, including today's. The great nurses (so far, only one) are the ones who let me hold her. I haven't gotten to do that since Saturday...torture. The mean nurses are the ones who won't let me touch her, change her, or do anything except sit and stare at her (so far, only one). I hate that my time with her is 'managed' by them but I understand why it's done.

The hematology tests start tonight and will continue on into tomorrow and possibly Thursday. There are 16 tests to be run altogether and it's very likely she'll ultimately need a transfusion since her tiny little body can't regenerate blood as quickly as an adult could. We'll see what happens. Those results will rule out any clotting or bleeding disorders as the reason for the stroke.

Like I said, though, we ultimately may never know what caused it.

Today the infection and viral cultures came back completely negative at 72 hours so the antibiotics and antiviral med have been discontinued.

The last good thing to happen today was that A and I met with the discharge planner. She stopped by to meet with us and go over a few key issues for discharge. Obviously, there is some time still to go before they even begin to think discharge, but she ran us through some basic questions and information on what we'll expect as far as consults before we're discharged (basic newborn hearing screen, developmental therapist, pediatric opthalmologist). We're thinking it'll be a week or two before they send her home...how I hope we're wrong.

So today was a good day. It was a rough morning but it got better once we went to visit Daniela. This is not exactly how I expected to spend my maternity leave. I float around the house like a ghost, pale, drawn, anxiety etched on my face, I'm sure. One wrong look at me and I break down crying. I'm trying to stop, I really am, but sometimes I just can't help it. The nights are the hardest...especially at bedtime. That's when doubts and such come creeping in, beckoning me with their negativity, scaring me with their ferocity.


At 7:50 PM, Blogger Mae Midwest said...

The discharge nurse did not visit with us until Av was a few days from going home. The fact that you were given all that info is a very good sign. They only do that when going home is near!

At 8:36 PM, Blogger Pam! said...

Today sounds like a 'good news' day! Hopefully you continue to have more days like this and Daniela is home soon.
Still praying,

At 8:47 PM, Blogger lagiulia said...

Oh Dee, I know what you mean about the night being the hardest. I'm so sorry you have to go through that hell. But, I am very glad that today was good, that the seizures have slowed, and that she is coming to. What a little fighter! I'll be waiting to hear about the MRA (when you have the chance to update, of course). Much, much love to you and your little sweetie. You are doing great, in a very difficult and unexpected situation. You really, really are.

At 9:40 PM, Blogger Cricket said...

Wow, it sounds like she is coming 'round. That is great news.

Hopefully soon your difficult nights will be merely with an crying infant at home.

At 9:57 PM, Blogger DeadBug said...

Oh, my dear, I am so sorry to read of Daniela's stroke but so glad that she seems to be coming through it so well. Thinking of you and hoping for all good things.

At 10:36 PM, Anonymous Menita said...

Hurray for a good day. May they continue to get better and better : )

At 10:53 PM, Anonymous sherry said...

Let's hear it for a good day, great nurses, and a speedy recovery so Miss Daniela can go home.

Dee, you're in our thoughts and prayers. We love you!!!!

At 12:53 AM, Blogger Chebbles' Mama said...

Oh Daniela, you rock, kid! I'm so proud of her as she rises above her crappy situation. Heck, I'm proud of both of you, working your way through what must be a very dark and scary time. The morning will come, I promise!

At 9:09 AM, Blogger Carol said...

I'm reliving all those emotions and different personalities of the nurses right along with you (my D was in Nicu for 11 days when she was born). And I can't wait to relive the joy with you when Daniela is released! You'll always remember the day and how unbelievably happy it made you.

At 10:11 AM, Blogger WriterGrrl said...

Make sure that you are getting enough sleep and food these days. It makes a huge difference in your emotional state. Even if you can't taste the food (I lost all sense of taste while D. was in the NICU), it's still important to eat. And drink a lot of water. And when anyone asks, is there anything I can do to help, say yes. Give them lists of everything that you need done. Grocery shopping, house cleaning, whatever. Your job is to be Daniela's cheerleader, sleep, and eat.

At 10:45 AM, Blogger Jessica said...

Hang in there, it sounds like Daniela is really doing better. A strong little one, just like her mama. It's great that you've won the husband lotto- hopefully you both have lots of good support right now. :)


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