Let's Start at the Very Beginning...

On September 15th, Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a very serious condition in which a hole in the diaphragm allows abdominal organs to move into the chest restricting lung development. In Jacob's case, his liver is also squishing his heart and displacing other organs. CDH occurs in about 1 out of every 3,000 pregnancies and has a mortality rate of 50%. To make matters more complicated, Jacob has Right-Sided CDH which only occurs in about 10% of CDH cases and is typically more severe. They are so blessed to have found this out when they did, or Baby Jacob would have surely died at birth.

They will be delivering at UW Hospital in Seattle and later transferred to Seattle Children’s. Thank you to everyone who has already begun praying, and everyone who will now. Baby Jacob is blessed to have all of you thinking and praying for him.

The Need for More Air

Update from Andy and Katy:
Nov 8, 2011 -Tonight, our little fighter's health took a bit of turn for the worse.  It seems like it has been in the making. After a coughing episode and some struggling tonight, his breath and heart rates increased to worrisome rates. For the past few days, his blood gases showed unproductive results. He continues to have fluid on the lungs and is retaining fluid in general despite medication. Doctors are not sure what is causing his inability to show signs of improvement. Jacob had blood, sputum, and urine cultures done tonight. We'll be awaiting their results for the next 48 hours. In the meantime, he will be starting antibiotics. They are testing for possibilities of pneumonia, blood infection, or other factors.

The team discussed many avenues to go from here. One of which includes moving up to the oscillator ventilator, which as of 11:30 doctors decided it was the best move for Jacob. High frequency oscillatory ventilation (HFOV) simulates the effects of panting: small tidal volumes at a greatly increased rate. This serves to recruit lung tissue by never letting the alveoli completely collapse and it should dramatically improve CO2 removal by maintaining the exposed surface area of the alveoli. The ventilator itself has a piston in the centre of a cone that moves at very high speed to push and pull these tiny tidal volumes into and out of the lung. Now Jacob "wiggles" at the same speed, which is quite disconcerting to watch, but the farther down the body the wiggle goes, the more effective the strategy will be. His sedation level has been increased with morphine boluses and continuing with ativan. The new ventilator makes a continuous tick, tick, tick sound as it vibrates Jacob.  Hopefully, the machine will assist with Jacob's need to lower his high CO2 levels. We were hoping that he not need be put on the oscillator as it isn't very comfortable and will require greater sedation.

We ask for prayers of healing for Jacob and of course, as little time as possible on the oscillator.


  1. Andy and Katy,
    I am sorry to hear about this setback for Jacob, and yet thankful there are doctors who can help him. The NT group is keeping you in their prayers every minute. Stay strong and trust that one day soon he will be in his car seat heading home. Hugs

  2. Praying for Jacob. My Dakota spent her first 10 days of life on the oscillating ventilator (actually she was on ECMO for days 2-5 as well) and I remember well the noise and her little body vibrating. When she finally got switched to the conventional ventilator, I remember the room finally seeming so quiet. Many, many prayers for a good day today. For forward steps and for a short time on the oscillating vent.
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. So many prayers and love to you all from your CHERUBS family. Keep faith in your heart and remind Jacob everyday he has so many that believe in his strength.

  4. Yes, like Jennifer, I remember the vibrating and the noise of the oscillator, and the quietness of it being taken away. Samuel was on it for 10 days and it was a very good option to help him through a few rough days. The added sedation was heartbreaking too - and I know must be difficult when you've had him awake and in your arms.

    I trust all this it will be good for Jacob as it was for Samuel, although I know, surely know, how hard it is to watch. Sending strength to you.
    Mama to Samuel, lcdh survivor, Feb1/11

  5. We are thinking about you and your family. We are praying for Baby Jacob!

    MaryKay, Mark, Sean, Nick, Katie O'Brien