Maura - Our Difficult Child

She's so difficult! They weren't successful with the MRI. She moved too much. Everytime they'd put her in, she'd startle. On one hand, its Great that she's startling, but NOT in the MRI! sigh....

So today they tried again...but here is where it got complicated. They had to sedate her...and her respiration is short to begin with, so they had to intubate her. It's going to get scarier before it gets better. And while I haven't cried since Saturday, I cried today, and I know it's OK!



The good thing about this is that they promised they'd read the MRI within the hour and also do another spinal tap to get more fluid while she is under sedation, making it easier for them to get what they need.

They said these two tests should give us more information. I'm really hoping this is the case. I feel like I think I see a light at the end of the table, and then it's like an oasis...a trick...and it gets darker and more deep...

I'm so tired today!

Joe let me sleep the whole way home. I needed it so badly. Going back in there after they intubated her was really really hard. I knew what they were doing, but I wasn't quite mentally prepared for what I saw. I expected her to have a tube in her mouth, but not the way that I saw it. It's the first time I actually feel reserved about how much I want to share.


I think it was especially difficult because Joe's brother Mike came to visit today, and I went to eat lunch and give them some time, as she can only have 2 adults bedside at a time. They didn't kick one of us out, but we didn't want to push the rules. Anyway, the whole time I was gone, maybe 45 minutes, she was wide awake, looking for her binky, rooting around, being fussy. They weren't feeding her because she was going to be sedated. My girl was hungry!



When I got back, I was upset that I missed it, but it turned out that she was awake for me the entire time they went to eat lunch! Doing the same things! Girl could SMELL me, and all she wanted was milk. Imagine having your breastfeeding child rooting around and knowing full and well you can't feed her. IT was so hard to watch her like this and be helpless...it was in my nature.. just let her nurse, and I couldn't and it broke my heart!


Anyway, by the time the team of doctors (mind you,it's like 5-6 doctors, not just one!) came to start the intubation, I gave her a kiss and told her I loved her.


We waited for them to finish, and when I went back in, I cried a lot. We didn't stay for long. They suggested I freeze her milk since I'll bring fresh tomorrow when she can have it (I'm pumping now). I left about an ounce for them to do mouth care because I feel like her little tongue is going to get all dry on the tip and I really hope they do it often to prevent that from happening.




Hopefully she's in there around now getting the MRI and then the Spinal Tap. As soon as she starts coming off sedation and breathing again on her own, they'll take out the tube. They lower the levels gradually until she's doing it. So hopefully by noon tomorrow she might be intubation free...