/ The RE's Muse: NICU day 3

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.

Sunday, February 04, 2007

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.


At 2:33 PM, Blogger ladybug said...

hi dee,

you dont know me, but i read laguilia's post in your honour at blogpicchipacchi (sp?) and i think i got there from Bri's Unwellness.

anyway, i just wanted to tell you i will be praying for your new little one and all your family... this post made me ache so much. i cant imagine carrying a baby thru pregnancy and hurting so much to simply hold and cuddle her when you want to. but you know what... that little angel knows your love. i know she feels it...because i could feel it all the way thru typed words and computer screen. so even tho you may only get to hold her a small amount of time, i have no doubt she feels and absorbs ALL your love and care for her, and understands your urging her to keep fighting and be a strong girl!

god bless you and your family!
much love,

At 3:45 PM, Anonymous Jen said...

Oh, sweetie, I'm so sorry, especially for the horrid nurse. She shouldn't get so much power, you know?

As for knowing who you are, and knowing how much she is loved, I don't doubt for a second that Daniela knows. You're a great mom, and you're doing everything you can for her.

And if you don't feel comfortable with friends visiting (which is totally reasonable to me), perhaps you could (a) ask those friends for help watching Juliana while you & A visit the hospital; and/or (b) tell everyone that you'll have some sort of gathering or celebration when she comes home, for everyone to meet her.

My thoughts, love and prayers are with you all.

At 3:54 PM, Blogger Kether said...

My heart is with you. I cannot imagine the stress you are under or how it feels to look at your beautiful girl Daniela hooked up to all of that stuff.
I'm praying that she goes home soon and makes a full recovery.

At 4:05 PM, Blogger Cat, Galloping said...

dee, i'm here, i'm reading. wish there was something more i could do.

At 4:58 PM, Blogger BSumner said...

I have no doubt that she knows exactly who you are and how much you love her.

Can you mention kangarooing? It's suppose to be calming instead of stimulating and would really help both of you to bond easier. Even an hour or two here and there would be great for you both I think.

Hugs to you, sweetie.

At 5:04 PM, Blogger Pam! said...

Just wanted to let you know I'm following along and you're still in my thoughts & prayers. Daniela knows you're there and doing whatever you can. Focus on the words "full recovery" and make sure you get some rest.

At 5:14 PM, Blogger Melissa said...

I came to your blog from blogpicchipacchi. Sending you lots of hope for your family during this difficult time. It sounds like your daughter is getting so much love and care from you.

At 5:32 PM, Anonymous Julie said...

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 wish none of us had ever felt that way. I wish you weren't feeling it now. There's no sense in any of this, and I'm sorry it's all so hard right now.

At 6:23 PM, Anonymous amanda said...

I'm so very sorry, Dee. You guys are in my thoughts. I wish I could do more.

At 7:16 PM, Blogger ThreeBees said...

Oh sweetie. . . I'm just catching up on everything your family is going through. I'm so sorry my friend. . . please know your sweet little girl and all of your family are in my thoughts and prayers.

At 9:35 PM, Blogger lagiulia said...

Both my husband and I are still thinking of you and praying for your little one and your family. I know this is a really, really tough time for you all.

I am glad that your daughter is being well taken care of. It is very nice to know you have a nice nurse who can be of comfort to you. Mean nurses are one of the toughest things to handle in the NICU. Please know that it is okay for you to advocate for your little girl and make your needs known. Even if they can't always be met, it's okay to ask and to tell the staff how you are feeling as things go along. You are the mommy, after all.

I know that leaving your baby is the hardest thing ever. I think of those days and still feel how crushing that feeling was. Just try to remember she has so many people looking out for her 24/7 there. I too wondered how my boys would know I was there mama and felt sometimes that the nurses knew the boys better than I did. Ouch. But here we are now, and we couldn't be closer. She felt your love when she was inside you, and she can feel it now, too, even when you are just standing near her.

Now for the technical stuff. My boy had an MRA too (in addition to MRIs). It really does help them see things in good detail. The blood transfusion situation is difficult when you can't be the donor. However, if it makes you feel any better, Picchi's hematologist once told Uomo and me that it would be better to use blood from a blood bank for a transfusion because if he later, God forbid, developed some sort of childhood cancer and needed our blood specifically, he might have developed a resistance to it from the time we gave it to him for a transfusion. I am not completely clear on this, but it did make me feel better about the prospect of using blood bank blood. And it is so, so safe now.

Finally, I found it stressful to have NICU visitors, like my friends and even sometimes my family. I think it's okay to tell them "not now, it's too much to have visitors there" is good enough. You should not feel selfish for this. There's no such thing as selfish right now- only survival.

She will be home with you safe and warm at some point and you will love her in a very special way, knowing what you've both been through.

(((hugs))), sweetie.

At 12:02 PM, Blogger Tippy Toes said...

here via Menita...sending positive thoughts. Hold on to that ray of light. I hope they are all nice nurses from here on out.


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