Thursday, December 2, 2010

I miss my baby

I miss my baby. C was so engaging and awake the night before his surgery.  He played and babbled and generally was a riot to hang out with.  He didn't go to sleep until after midnight.  He didn't go to sleep until after midnight and slept all the way to the hospital and through check in.  He didn't fuss about not being fed and was sweet and funny and cuddly.  My last view of him was him peering at me over the nurse's shoulder as she carried him off to the OR.

Now he's still and quiet.  For the first time since he came out of NICU we can't hold him.  They keep him cool because of the JET and we don't get to see his beautiful blue eyes.  I've hardly left his side from the day he was born until they walked him to surgery and it wasn't enough time.  There isn't enough time to make this separation OK.  Statistically, we'll be reunited. So I feel guilty for missing my baby.

There are moms I've shared and loved with online who don't get to see their babies again.  There are families in the PICU here who get terrible news.  I feel guilty for missing my baby and being sad, I know I should be grateful for how comparatively well things are going, but it is still hard and scary and I can't help but miss him.

Medical Update

The bad stuff: C continues to experience JET rhythms that break through the pacer's current rate.  Most of the other issues he's experiencing relate back to the underlying JET.  His urine output dips, he has occasional perfusion issues, he has some blood pressure issues and the ventricles aren't functioning quite the way we'd like to see them.

The good stuff:  C is being weaned off of the Nitric Oxide and the paralytics.  He's also being fed breast milk via NG tube.  He's currently receiving 3ml per hour continuous feed.


  1. Prayers for your Charlie and you. It is so hard to go through this and I can only say to keep your outlook optimistic. Lots of thoughts going your way.

  2. Big Heart Hugs, I was in your exact shoes 6 weeks ago. It will get better although coming off the vent is the Hardest part by far. Hang in there.

  3. Don't feel bad. You will always find someone who is in a more difficult situation than you, but that doesn't diminish what you are going through. My daughter's surgeries are 7 years and 1 year behind us, but I still have moments of sadness and fear. You are allowed to mourn for what you're going through!

  4. This is such a traumatic experience so don't feel bad about it. You have every right to miss your little guy. My daughter was also externally paced after her surgery - I remember I took care of that box like it was a box full of treasuers. It was - it was saving my babies life. Her conduction system was damaged during surgery - so a week later she went in to implant the pacemaker. I am unfamiliar with JET so not sure if a permanent pacer would help. Just wanted to say I will be praying for Charlie.