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.

Just Breathe

Extubation Day

Before
After











Nov 23, 2011 -Today we felt like Jacob was born all over again. As parents, we anticipated hearing and seeing the things one normally does at their baby's birth ~ his first breaths and hearing his first cry. We got to hold him without the worry of gagging him. We were able to put him up on our chests and smell, caress, and kiss his sweet head with our lips. I got to hold him skin to skin. And Jacob finally got to wear clothes! 

When it was extubation time, we were surrounded by happily anxious nurses, respiratory therapists, and a neonatologist. Medical staff that wasn't even on Jacob's care that day was rooting for Jacob to do well, as most of them have taken care of Jacob at some point. It felt good that Jacob has stolen a tiny piece of so many people's hearts! It was also an amazing circle of events that happened that day. Pete, the respiratory therapist, was the one who intubated Jacob at UW and transported him to Seattle Children's. Now he was the one extubating him 4 weeks later. Dr. Sarah Hedstrom was at UW watching Jacob be born and was the one to surgically place his umbilical line. She was now at Jacob's bedside overseeing the extubation. It is unusual for staff to be in both places at such important milestones in a baby's life. 

Pete preparing to take the tube out.
When they took the breathing tube out, Mommy and Daddy held their breath with their internal chant: breathe, breathe, breathe. Jacob kept his eyes closed but did not fuss. He did not struggle for air nor look like he was suffocating as he did before. He was calm.  His chest went up and down as it should, not retracting in effort to breathe. He seemed to do fine on room air but Nurse Patti held oxygen near his mouth and nose just to help him out. His pulse ox stayed at 100%. He finally mustered up few little squeeks. His voice was very hoarse and his throat quite sore, as you can imagine. As they day wore on, his cry turned into that of a mewing kitten. Hearing his cry took our breath away. It was more precious than any sound I've ever heard! 


Now Jacob's only job is to just breathe! Now we ALL can breathe!


Our prayers have been answered once again. Many babies on ventilators for extended periods of time have a strong oral aversion and do not do well with the mechanism of suck/swallow/breathe all at the same time. Shortly after being extubated, we found Jacob seems to have a great rooting reflex and loves his paci. These are great signs that he will do well when it comes to learning to breastfeed or at least take a bottle.

 
 

3 comments:

  1. Beautiful description of Jacob's big day, Katy. We're all so happy for Jacob. You and Andy have done a brilliant job of holding yourselves together through this ordeal. Mom

    ReplyDelete
  2. Wow! What an amazing journey this has been! So thankful you have kept up on the blog! What a great way to start my day to hear Jacobs triumphs! You both are such great parents and I know Jacob has flourished in part because of that! Love you! Gloria

    ReplyDelete
  3. Praise the Lord for those precious moments...

    Jacob is looking so hardy and healthy! What a blessing he is!! We are praying for continued progress. love...The Zenner family

    ReplyDelete