Then things got complicated…

They started off doing relatively well.  We heard Lina cry when they took her out.  Her APGAR scores were 8 and 9 (out of ten) at 1 and 5 minutes of life.  They had to work on Cole a little bit.  They whisked him away before we heard him cry, but he did start to breathe on his own.  His APGARs were 5 and 7 I think. 

 They were both on CPAP (as opposed to a ventilator) to start out with.  Saturday morning, things got complicated.  They called me and told me that Cole had been having some trouble breathing.  He had a pneumothorax (collapsed lung), so they had put him on a ventilator, and put a tube in his chest. They said he was doing much better.  On Sunday they started to worry because something in his bloodwork looked off (I think his hemoglobin was low?).  So they ordered a head ultrasound, because they suspected a bleed.

On Monday night (the day I came home from the hospital) we got a call from the attending physician.  She gave me the terrible news that Cole had a “very big” bleed (Interventricular Hemorrhage, or IVH) on the right side of his brain, and a “smaller” one on the left.  We spent so much time with the doctor over the next couple of days trying to understand what this means.  It turns out that the bleeds were a Grade IV (on the right) and Grade III (on the left).  Grade III is when the blood fills the ventrical and Grade IV is when it spills out into the brain tissue.  Grade IV is the worst. 

So what does this mean? The doctors can’t tell us.  Every child is different, and only time will tell what he’ll be able to do, they say. Will he walk? Talk? Play football?  Can’t say.  It’s incredibly scary not to know anything about what to expect.  The doctor has said we’re almost certain to have “issues”. But does that mean some slight weakness? Walking with a limp?  Something very serious?  We just don’t know.  It seems we just have to wait to see if he hits his milestones or he doesn’t. 

 Needless to say, we were devastated. We spent the week crying, trying to read up about IVH on the internet (what we found was very discouraging), talking with the doctor (who was wonderful, spent SO much time with us).   The doctor did tell us the “issues” are likely to be mobility-related rather than cognitive (though there are no guarantees, of course).  Somehow that made us feel a little better. 

Cole is a really active little guy. He moves around a lot – his arms and legs are always going.  He’ll hold your finger if you put it into his hand.  That makes us feel a little better, too. He seems strong.  The doctor said that clinically they don’t see anything wrong with him, and that if they didn’t have this head ultrasound they really wouldn’t suspect a bleed.  She did say once that this was “promising” (though she is always very careful not to say anything to ‘get our hopes up’ either).

Long story short: we are terrified but somehow getting used to it.  I guess you have to, because I don’t think it’s possible to continue to feel that kind of pain all the time. 


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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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