Scratch that.

Never mind the headline of the last post.  I’m back in my nightmare.

I went back to work this week.  Yesterday morning I went to the hospital before work to meet the second doctor at Greenwich Hospital (there are two neonatologists, and they alternate every other week.  We had met one on Friday when she was admitted and he was on over the weekend too).  He was very happy with her progress and shocked me by saying that ‘optimistically’ if all went well she could go home next week.  Well, I’m wasn’t so sure we’d make it for that, but I was thinking a couple weeks, tops.

I didn’t go to the NICU last night. I was exhausted and my eyes felt itchy. I thought the last thing I need is to run myself down and get sick, so I decided to try to get some sleep and go spend some time there this morning and be there for a feeding.

Well, at 6:30 am the phone rings, and my world changed.  It was the doctor who told us that her belly had become very distended again and she was having trouble breathing. He thought it was likely a recurrence of the NEC she’d had earlier and that her bowel may have ruptured.  Can’t remember if I’d mentioned this, but the night Cole died, we got a call that Lina had NEC (necrotizing enterocolitis).  It can be extremely serious, but it seems that they caught it early and it cleared up relatively quickly with the antibiotics (a cocktail of 3) that they put her on.  We felt lucky that she didn’t get too sick and especially that she didn’t need surgery.  When I was talking with the doc yesterday, I was running down the laundry list of our concerns and happened to ask him about NEC complications – could we expect recurrance, is she likely to have any long-term complications, etc… His response was that it was unlikely (though not impossible).   Yet it seemed here we were, staring it in the face again.

So I went right over and we went back down by ambulance to Columbia Presbyterian to be evaluated for surgery.  If the surgeons thought it was critical, they’d go in to see how much of the intestine had died due to the infection and take it the dead tissue.  If it was only a small portion, she would likely be OK once she recovered.  If it was a large portion, she could have serious issues with eating/nutrition for her whole life.  If it was all of it, well… I don’t even want to think about it.

The surgeons said “Yes, she needs surgery. She’ll be going in NOW”. So less than an hour later (much quicker than I expected) they were back.  It turns out that she doesn’t have NEC at all, which is good news I suppose, but what the problem actually is, isn’t much better.  It seems she has a rare condition called “volvulus”.  If I’ve understood correctly (and this might not be 100% right), the base of the bundle of blood vessels that supplies her intestine was very narrow.  Because of this, it made it easy for it to get twisted (think of how a balloon animal is made).   Basically sometime overnight the blood vessels twisted and cut off the blood supply to her bowel.  This caused a couple of things to happen. First, at least some of the intestine is damaged and/or dead.  Second, because there was no blood supply and no movement in the bowel, the bacteria built up and some escaped through the walls into her body, so she’s now septic.

They split her intestine and actually left it sticking out of her belly to let the air that’s built up inside get out.  For now they have left all the bowel inside, as it’s not clear how much of it is damaged.  They will operate again on Friday to see how much is damaged (and remove the damaged portion).  So from that standpoint there is nothing different from if she actually had NEC.

Lina is VERY, VERY sick right now.  The doctor said ‘this will be a very long night with her’.  If she pulls through this, we will have several more months in the NICU.  And just yesterday we thought we’d be taking her home in a week or two.

I am in utter shock.  Like I said, I’m back in my nightmare. I don’t know what to say. I cannot possibly lose two babies. Please give me the strength to get through this.


2 Responses to “Scratch that.”

  1. 1 Scott Erb October 3, 2008 at 11:36 pm

    This is months late, but oh man. What hell.

  2. 2 jessica November 6, 2008 at 5:06 am

    good morning,

    i’m so sorry to hear about all that is going on with you! My duaghter was a preemie who suffered thru NEC. However her doctors caught it late,by the time everything was said and done she had 15 surgeries in ten months,a colostomy,iliostomy (three times),a feeding tube,and many other problems. I’m happy to report she is now six years old with only slight complications. I would never claim to know how you feel! but I do know it is a long hard road! and i will think of you often,and pray for you! God Speed

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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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