/ The RE's Muse: NICU day 2

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.

Saturday, February 03, 2007

NICU day 2

We learned this morning that the MRI shows Daniela suffered a small stroke--either before, during or immediately after delivery and they're not exactly sure why. It's the reason she's now experiencing the seizures, which are still ongoing even though she's receiving a fairly high dose of phenobarbitol.

We spent about an hour and a half there last night around 1 a.m. or so and will go back this afternoon and again tonight. I'd stay there all day and night if I could. Leaving there without her is the hardest part for me; I just keep thinking that she's all alone with no one there to love her...but A assures me that those nurses love those babies or else they wouldn't be in the line of work that they are. True I imagine but just not the same, I'm sorry.

The neurologist did say that she expects her to make a full recovery from the stroke (though she said this followed by "G-d willing"). I spoke with our pediatrician this morning to give her the update as she hadn't spoken with the neurologist yet. She was wonderful and went out of her way to tell me about another patient in the practice who had suffered a similar stroke at birth or shortly thereafter and the only after effect he now has is a weaker right arm. Oh, how I hope that's the worst of our long-term effects.

They're now awaiting all of the culture results to see if either a bacterial or viral infection was the cause of the stroke. Monday will be 72 hours, which is the full course of time for the cultures to grow, so if they're negative then, infection is not the cause. They came back negative at 24 hours so far so we'll see. There is some possibility that the nuchal cord caused the stroke, or perhaps they may never exactly know why at all. It all comes down to putting the puzzle pieces together. They will repeat the MRI on Monday to see how her brain looks.

She's on the ventilator now so she's officially a level III patient (highest level of care). She stops breathing when she seizes which is the reason for the ventilator.

I am trying to be strong, I really am, but it's just so hard. I'm already an emotional person--regardless of pregnancy hormones but now that I imagine those are starting to crash, it's only getting worse. Last night--her first in the NICU while we were at home without her--was the worst, I was afraid to go to sleep. I'm afraid I'll miss something though I know I won't. The NICU will call if anything changes or any emergencies crop up. We've been told that this is not life-threatening so that was somewhat reassuring though my mind is all over the place and I can't help it when that "what if" thought comes up. I shove it off as quickly as possible but it's there, lurking in the shadows, waiting to grab me at my darkest moments.

I don't know how I can get through this. I continue to put one foot in front of the other and I know that I can and I will get through this but it's just so so emotionally draining. I can't stop crying. A is being so incredibly supportive. I apologized to him for the fact that I can't be strong right now, that he has to be the 'rock' of our relationship--even though I know he's hurting too and she's his daughter too and he's just as scared, and every other emotion you can think of, as I am.

Thank you, all of you, for your kind words and everything else. They help so much...more than you can imagine. I certainly need all the help I can get, now more than ever.

I just keep chanting in my head, please please please let her be okay. I've never wanted anymore else more than I want this....she just has to be okay. Please, just let her be okay.

20 Comments:

At 3:04 PM, Blogger lagiulia said...

Dee-
All the feelings you wrote are all the very same things I felt in our NICU and PICU experiences. It is the hardest thing I've ever gone through. You are right, all there is to do is to put one foot in front of the other and know that she is getting the very best of care. I know her being alright is the most you've ever wanted anything in your life before and that this is exhausting. You just do the best you can. Know that all the crying is normal, and that there are many families who have gone through what you are going through who are okay now. You and your girl will get through this, one step at a time.
Much, much love to you, my friend.

 
At 3:10 PM, Blogger Cat, Galloping said...

oh dee, i don't even know what to say. i am so so sorry that you are going through this and sending all good thoughts for daniela's health. (What a beautiful name, btw.)

 
At 3:55 PM, Blogger Cricket said...

I am so sorry for the diagnosis. I hope the prognosis is as good as they indicate. I am sure seeing your daughter this way is very difficult and you being emotional is so understandable.

 
At 5:02 PM, Blogger Stacy said...

Dee, I am so sorry things have not gone as planned. I will be prayign for a quick recovery for your little girl and that she is home with you all soon.

 
At 8:49 PM, Blogger WriterGrrl said...

Oh, Dee, I was offline for Shabbat and just logged back in, and I am so, so sorry for what you are going through. I will definitely be holding you in my thoughts. You said, "I don't know how I can get through this. I continue to put one foot in front of the other and I know that I can and I will get through this but it's just so so emotionally draining." I know that feeling exactly, but you are getting through it. You are putting one foot in front of the other. You are getting out of bed in the morning. And you have to acknowledge that and give yourself credit for it -- because it's a huge thing.

 
At 9:19 PM, Blogger BSumner said...

OH Dee.... I'm SO sorry that you're going through this. It feels as though we're going through it with you, you know? I just know she's going to pull thru this and please know that if you need ANYTHING at all, please don't hesitate to ask.

Love you!

Brenda

 
At 10:13 PM, Anonymous sherry said...

Dee,

I...I...I am at a loss for words. Completely. I'm so, so sorry for what you're going through. I can't imagine what it's like, and I won't pretend that I do. It sounds as if Daniela (gorgeous name) is getting the best care possible, and in my gut, I know she'll be OK.

Get in touch if you need anything...ANYTHING at all.

Much sanity and love and whatever it will take to make Daniela better...

xoxo,
Sherry

 
At 10:25 PM, Blogger Amanda said...

Hey, it's me. You know I am thinking of you. You have an incredible husband and a wonderful family for support. Use them now so you can focus on getting your little girl home.

Always in my thoughts!

 
At 12:49 AM, Blogger Heather said...

Oh Dee, I know there are no words for how hard this is for you. There is just nothing in the world worse than having to leave your precious baby behind in the NICU. You know she's in the best hands for the moment, but damn it, they're not YOUR hands, and that's what matters. Thinking of all of you, praying, and sending much love.

 
At 1:00 AM, Blogger Chebbles' Mama said...

Dee -- what a horrible, trying time for your family. I'm so, so sorry that you have to go through this, and am so glad you are safe and loved in A's arms during this terrible, unexpected time when you wanted to badly to have your new daughter home with you. I am thinking so much about you, and praying for your daughter's swift recovery. We are all thinking of you and rooting for you, with much love.

 
At 3:57 AM, Blogger Thalia said...

Dee, I'm hoping very hard for Danielle that she's on her way up from this stroke and that nothing else bad will happen. And thinking of you.

 
At 8:11 AM, Anonymous Menita said...

Oh Dee, I am so sorry you are going through this. I wish there were a way to convey exactly how sorry I am, and that my wishes for Daniela's speedy recovery could fly to be with you.
I am thinking of you constantly and praying for your family.

 
At 9:21 AM, Anonymous Meira (comments AT voirdire DOT org) said...

Came over via Menita-- just wanted to let you know that I'm pulling for Daniela's quick & full recovery . . .

 
At 9:57 AM, Anonymous lala said...

oh Dee...oh I'm so sorry this has happened. I'm thinking of you and A and the girls. I'm wishing you the best to get through this.

 
At 10:41 AM, Blogger Kris said...

I'll be keeping you and her in my thoughts. I'm so sorry.

 
At 11:23 AM, Anonymous Anonymous said...

Daniela, as well as your entire family, are in my prayers.

 
At 11:31 AM, Anonymous Jen said...

Oh, my dear, I am so very sorry that you all are going through this. Much, much love to you and your wee girl--you will all be in my prayers.

 
At 11:40 AM, Blogger Klynn said...

Came over via Cricket and Menita. Just wanted to let you know I'm sending positive thoughts and prayers your way. I've been in the NICU twice, each time with a preemie. It's never an easy place to be, though I'm sure she's getting the absolute best care possible. Wishing you and your husband strength and peace, and your baby a quick, complete recovery.

 
At 12:17 PM, Blogger brite69 said...

Came over via Cricket and just wanted to let you know that I'll be keeping you and your whole family in my thoughts. I wish you all strength.

 
At 2:51 PM, Blogger Mae Midwest said...

Dee I just saw your comment in my blog. I am so very sorry! I will send you an email.

 

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