Day of Life 12

Today was a terribly stressful day…  And very emotional.  I’m still very concerned about Nadia.  Eric spoke with the head of the NICU department today, the doctor who also happens to be the father of Eric’s closest friend.  Apparently it is who you know…  Anyway, his thoughts are this…  The grade 1 brain bleed as well as the other bleeds in her brain are clinically insignificant, meaning so small he doubts they will play a part in her development.  The concerning thing to him is the fact that there is damage from lack of oxygen, and from the looks of the MRI, in his opinion, the damage envolves her entire brain, not necessarily just a portion of it.  There is good news though…  She is a preemie, and since her brain isn’t finished developing, even compared to a full term baby, she has a much better opportunity for her brain to grow new pathways and ‘work around’ the damage so to speak.  Looking back, when we found out Nora had meningitis and I feared she would never lead a normal life, it was this doctor who told us she would be just fine.  Well, it’s his opinion again that Nadia is going to be just fine.  I mean, he can’t say 100%, no one can, but he really believes she is going to be okay.  All that said, I’m still terrified for her.  And I want to cry every time I think of the possibilities of what could be wrong with her.  The worst part is the not knowing, as my mind assumes worse case scenarios.  

So then today’s events…  Eric and I were able to see Nadia again today, and we each got to hold her for maybe ten minutes each.  They didn’t want her out of her warmer bed too long today, just as a precaution.  Side note, totally sucks she’s 12 days old and I’ve held her a total of less than 30 minutes.  Can you tell I’m a little bitter.  And terribly jealous of full term mommies right now.  But…  Here are a few pictures 🙂


Look at all that hair in the last picture of her from behind??  And for size reference, that’s a standard size (I think) wash cloth under her neck.

We called for an update tonight and the nurse said she’s doing really well.  The fear earlier today was for NEC, which I’d link to information, but I’m on my iPad right now, so too difficult.  In a nutshell, it’s an infection of the intestines that preemies get, can lead to portions of the intestines dying and needing to be removed.  Apparently it can be quite serious.  So the first X-ray today, the radiologist thought there was a small spot that appeared to be NEC, although the neonatologist wasn’t so convinced.  The X-ray was repeated tonight and they think it looks fine.  We are still waiting on blood and urine cultures though, so she will stay on 3 antibiotics until those results are back.  And she is still getting .5L of oxygen, so just a tiny bit, so she doesn’t have to work so hard.  The doctors thought that if she continued to have spells where she was forgetting to breath on her own they would do a lumbar puncture to check for infection in her spinal fluid, but so far she’s doing well and they decided against that for now.

So for tonight, she’s doing well.  Feeds are being held but hopefully tomorrow she will be allowed to start small amounts of breastmilk through her feeding tube again.  For the time being she is receiving nutrition through her PICC line.

I really can’t accurately describe how stressful a NICU stay can be…  If you’ve been through it, you know.  If your children have ever been seriously ill, you know.  It sucks.  Bad.  The ups and downs.  The calls in the middle of the night from the doctors.  Several times today I felt so darn defeated, like I just can’t do this.  But there is no other choice than to do this.  And then I got to hold her, and everything felt right with the world.  But as soon as I’m home, my mind again wanders to the terrible awful possibilities of her brain damage.  The bright side in all this, is that she is acting completely normal, as a preemie her gestation should.  I personally have to think that if she had a lot of brain damage we’d notice something.  The doctors are watching for sizures, but so far, they’ve seen none.  I know not every NICU in the country even does a brain ultrasound on preemies as standard procedure like our hospital does.  Since Nadia is showing no clinical signs of damage or issues, we’d never know…  Maybe that would be better…  Or at least easier for the time being.

So somehow I managed to get through another day.  Tomorrow is Eric’s father’s wake, and then Tuesday is the burial.  As much as I want and need to be there for Eric, the honest truth is, I’m dreading the next two days.  I miss Nadia, I’d rather be holding her, at least holding her hand and telling her she is going to be okay.  But… Being with Nadia the next two days is just not possible.  Being with Nora and Eric is where I will be, and hopefully Nora behaves so the days aren’t too stressful on top of all the sadness.  We were originally planning on staying overnight, as it’s roughly 90 miles from here, but I think that’s too difficult with Nora and our dog, so we’ll be driving back and forth.  And I assume in two cars so that Eric can get to the events early.  

I’m so tired.  The pumping every three hours round the clock is wearing me out.  Nora has been waking more frequently, I assume because she is getting more teeth, or maybe she just senses all the sadness and worry in the house.  Or the fact that I keep pushing her off onto other people.  My mom watched her today while Eric and I were visiting Nadia.  I feel guilty when I’m not with Nora.  I feel guilty when I’m not with Nadia.  The guilt is really getting to me…  The driving is getting to me as well, and not helping my exhaustion.  Seeing Nadia involves driving 90 miles as well, in the opposite direction we are headed tomorrow.  I’m sick of being in my vehicle!  I’m sick of eating junk on the run.  Oh, what will I feed Nora tomorrow and Tuesday??  She is hard enough to feed at home, much less out of town on the go…

Oh, I’m babbling as I feel my eyes starting to cross.  If you’re still reading, God bless you.  And please pray for our family.  This journey is difficult and long, and I pray our entire family is home together, healthy and happy very soon!

25 thoughts on “Day of Life 12

  1. Stef, I wish there was something I could say to make you feel better. Just please know there are so many people thinking and praying for your little miracle. Don’t EVER be afraid to ask anyone for help… We are all here for you!

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  2. thinking of nadia and praying everyday for her. you are an amazing woman to go through all of this (again!). i can’t begin to imagine the immense amount of stress you are all dealing with. one day at a time. just try and survive one day at a time. xox

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  3. Sending hugs, love and many prayers to your family. I’m so sorry for the loss of Eric’s father. Sending you all the strength and grace in the world as you navigate your way through the next few days. Praying for Nadia…I just know in my heart all will be ok. Sending you big mommy hugs. xoxo

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  4. Lots of prayers stef. Is it possible to stay a night in Iowa city after the wake and burial so you could see Nadia back to back? Can you take Nora to do something fun s you feel like you have a mommy Nora moment? Ps this is normal. When Nadia comes home and you breast feed or bottle feed you will still feel like you pass Nora off, it’s how I felt with Nolan for 8 months and he was 3. All you do is the best you can and love as much as possible and both of your kids will love you just the same. One may act like an ass but will love you just the same.lots of prayers for peace and health.

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  5. I can’t even begin to imagine what you are going through right now. I’m sorry things have to be so tough for you.

    Your post reminded me of what I was thinking earlier tonight. I’m having some major anxiety about baby boy arriving and how I’m going to manage two. It will be my first time away from M overnight and I don’t know how I’m going to do that. Being a parent isn’t always easy.

    Been thinking of you and I hope you’re able to find a way not to feel guilty. I know you’re doing the best you can and that’s what’s important.

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      1. I have no answers for you unfortunately. We’ll be navigating the unknown together. I’ve been up since 4am today bc of the anxiety I have with #2 coming 9 weeks from today, if not sooner.

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        1. Oh goodness girl, I’m sorry! Lack of sleep is the worst, and due to anxiety is even more horrible. Yes, hopefully we can both figure out how to manage two children. I see it this way, we are smart women, if other woman can do this, so can we! We can share tips and tricks! Or just vent to one another when we need to!

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          1. I totally agree! I know you’re just a fb message away! Any tips you figure out over the next 2 months please do share. I’ve been trying to be very open with my husband and let him know exactly how I’m feeling so he’s not blown away if I do start to stress out once baby arrives.

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  6. Don’t go.

    You are a newly postpartum mother of a baby in the NICU and a toddler who needs you. You need to focus all your energy on healing and pumping and being there for Nora and Nadia.

    Eric is a grown man and he has the rest of his family to support him during this time. It is ridiculous for you to be traveling away ftom your fragile baby for a funeral. I would be apalled if anyone actually expected you to be there. Your baby needs you. You need to heal and rest. STAY HOME. ❤ XOXO

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  7. Thinking of you girl!! I assume you have told the NICU staff about Eric’s dads death and why you can’t be there more? I want them to be sympathetic and understand why you can’t be there all day every day

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