Ebbs and Flows

Its been a really rough 24 hours but we are looking good right now. Maddie’s numbers have been holding steady for about 4 or 5 hours. No one has been poking her or prodding her and the doctors only give her a glance every so often to make sure things are ok.

I’m going to write the rest of this blog for two audiences – people who care about all of the medical details and people who don’t.

Mommy update
One of the other CDH moms expressed on her blog that the fear you live with when you are in the NICU is a primal fear that lives in your soul. Never knowing what and when and if something is going to set your child off. Learning to ignore nurses and doctors when they tell you AGAIN to prepare yourself for the worst and that your child is very fragile or tenuous or precarious and pray for a miracle.

Then the exhaustion once its over and shes stable again. Like you could sleep for a year if you could stand to be away from her beside for that long and didn’t have to pump every 4 hours. It’s a state of being that I hope I never experience again. The highs are so high and the lows are so low and training yourself to “keep to the middle ground”, or “take the long view” or “think of everything you have to be thankful for” all feel impossible. And we are only 12 days into a life of living with CDH.

Let me share some of the highs:
- Maddie is off of the paralytic. She is moving toes and fingers and has opened her eyes a few times. Sometimes she squeezes our fingers. Often she lets us know how much she hates being ventilated.
- I got to help change my first diaper today. Never have I been so happy to wipe a dirty little butt!
- I get to put lotion on her lips every few hours. She usually pokes the worlds most perfect little tongue out at me while I do it.


Medical update
Post op maddie looked really good for about 18 hours or so. Stable stats – her CO2 was a little high but nothing too concerning. She got a new roommate who needed to be put on ECMO. While the surgery team was in the bay working on Baby B, Maddie got agitated with all of the noise. They gave her some Versed, hoping to calm her down. Instead, her blood pressure completely dropped out. This started an 8 hour cycle of hand venting, adjusting meds and moving back to the oscillating vent.

Around 10 PM, Dr. Keller (a CDH genius and amazing woman – I’ll probably dedicated a whole blog to her one day) was consulted and recommended putting Maddie back on the conventional vent and letting her show us what settings she liked. That stabilized her until about 1 AM. They did an x-ray and saw that fluid was collecting around the right lung, putting so much pressure on it that it could neither oxygenate nor ventilate. They drained her chest cavity (remember her chest tube is designed to do this but is on the left side of her body) and immediately her stats went to normal. A few hours later she spiraled out of control again, did another drain and bam, back to normal. The decision was made to insert another chest tube, this time on the right side. So far we have collected about 60 cc of fluid on the left and well over 100 ccs of fluid on the right. To put this into context, Maddie’s lung volume is only about 10 ccs in her good lung so the pressure this fluid was causing is substantial.

Maddie also has an elevated white blood cell count, indicating some kind of infection. Nothing is growing in the cultures yet, but she is on 3 types of antibiotics for the next week or so and we’ll wait for the labs to come back and tell us more.

Slight reduction of the silo today. Hoping for a bit more over the coming days and closure by Tues or Weds. New artery line and new IVs today as well.