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 🙂
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!