The latest…

Cole is sick.  He has an infection – they say it is most likely the same MRSA his sister had.  But his is in his blood (hers was just urine).  Yesterday he had some pustules in his diaper area and belly.  Then his tummy was getting real distended.  They started him on a “cocktail” of 3 antibiotics.  When they identify the exact strain, they may take him off of 1 or 2 of the antibiotics.  Today his fever was 101 and he was awake the whole time I was there. He must be feeling pretty crummy.   Because of the distended tummy, he was having some trouble breathing, so they put him back on the ventilator.  I hope that lets him relax and fight this off.  Poor little guy, he can’t catch a break.  Where I wasn’t really worried about it with Lina, it seems as though this has hit Cole much harder, and I hope he’ll fight this off.  I just want to scoop him up and hold him tight to make him feel better.  But I can’t.

 The other news is that he had another head ultrasound today.  While the clot is beginning to dissipate, his ventricles are enlarged.  I guess because of the clot the fluid can’t drain well, and it builds up, causing pressure (I think that’s how they explained it. I need to have some of this stuff explained to me 3 or 4 times before I really get it).  They are having a neurologist look at him, and they may start doing spinal taps to drain some of the fluid and relieve the pressure. If that doesn’t seem to work, they may have to put a shunt in.  I don’t even really know what that is.  The doctor explained it to me, but honestly I can’t remember.

What bummed me out today was that the doctor said that the area affected was “significant” and we should be prepared for deficits. Again, she can’t say how major or minor they will be, but…we should be prepared.  This is a new doctor. The way it works at Columbia is that the attending physicians rotate every 3 weeks. This is a new one who started yesterday.  I like her and I trust her, but it will take some time to get to know her (and for her to get to know us and our babies).  She basically reiterated the prognosis, again being careful to present us with the “worst-case”. I don’t really know if this is based on the new information, or if she’s just giving us the overview, based on the level IV IVH.  What she said wasn’t that different from what we’ve already heard, but somehow I had been hanging my hopes on Cole’s strength (it seemed to me) and his active movements.   That and a few positive stories I’d been hearing.  I kind of felt like I might be fooling myself.  I feel like I did when I first heard about it.

So…another afternoon of tears and heartache.  This hurts more than I ever thought possible.


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About Me

I'm a grieving mom. I have one beautiful daughter, Annika, who's 3 years old now (born 12/28/04). I also had twins, Lina and Cole, on 10/04/07, born at just 26 weeks. We lost Cole after just 23 days due to complications related to his prematurity. Fiesty little Lina overcame so much and just when she was getting ready to come home with us, suddenly had a complication unrelated to her prematurity and passed away on January 11, 2008. This blog is about getting through it. More...

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