October 26th

The worst day of my life.

Well, I sent this website’s address out with my Christmas letter, and said I hoped to have it updated by the time anybody got it. I know I didn’t manage that, but here I go. My last update was October 23rd, when things were bad, but I was still holding out hope.

We spent so much time with the doctors that week. Words used to describe his prognosis were “dire”, “grim”. The size of the bleed and the fact that they weren’t able to drain it with a spinal tap was not good news. He developed hydrocephalus (hence the need for the shunt). The infection wasn’t helping anything. Whereas up until then, he had appeared so strong and his movements all appeared to be so normal, they started to look strange. Every couple of seconds he’s squinch up his face and close his eyes tight and pull his legs toward his body. He seemed to be in pain. It looked like he was having seizures, though the neurologist said he didn’t think it was seizures. He did seem to think it was related to the bleed though.

We spent so much time with all the doctors. They said with a Grade IV IVH in general, there was a 75-90% chance of some deficiency which could be on a very wide spectrum from muscle weakness or a slight limp to never walking, never walking, severe mental retardation… With that kind of information, it’s so hard to make any kind of decision. With the Grade III IVH on his left side too (which carries a 35% chance of impairment on its own), though, and from what they were seeing on the ultrasounds…the hydrocephalus, the movements… it seemed more and more clear that we were almost certain to have impairment, and that it would almost certainly be in the “severe” category.

Going in an out of the hospital (it’s a Children’s Hospital) we would see kids that were so, so sick. Kids that couldn’t even sit up by themselves in their wheelchairs…had no muscle control, couldn’t talk… That is not the kind of life we wanted for our baby boy. We did not want him to suffer. And he already seemed to be suffering. And honestly, we considered Annika’s life, and Lina’s. For all the resources (time, financial, emotional) that a very sick child would take, how fair would that be to them?

In the end, we made the heartbreaking decision to remove Cole from life-support. We met with the hospital’s “ethics committee”, and they agreed that this was a reasonable course to take under the circumstances. Still, it was the most difficult thing I’ve ever done, and I know that it will torment me for the rest of my life. Our doctor told us that it was possible he would continue to breathe after taking him off of the ventilator, and that the process could take a very long time (days).

We waited in a conference room while they got him ready. They took him off the ventilator and removed all the tubes and wires. They dressed him and wrapped him in a blanket and brought him to us. We held our sweet baby boy while he passed away in our arms at 3:00 on October 26th. It took less than an hour. I took this as another sign that he was really, really sick. He was ready to go. My poor, poor baby boy. How could this happen to him? To us?

How does a person get past the death of a child?


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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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