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.

He is risen! Happy Easter! (Jacob's Baptism)

My Cup Runneth Over!
Apr 17, 2012 -Every time I see this picture my heart (and sometimes my eyes) is overflowing with joy. Easter was a milestone day I had been waiting for. Almost half a year has gone by. I had been envisioning the day we would take Jacob to church for the first time for all to see. (We figured it would be an appropriate age and time of year to take him into a crowd seeing as flu season is about done and he is doing quite well.) Life has pulled us away from actually attending Mass and I have been yearning for it. Well, the day didn't quite go as planned. We arrived at church too late to find seats. In fact, we couldn't even get in the doors and returned home. I was so disappointed. I wanted to show off my own little miracle. Oh well, instead I got to enjoy his smile in the sunshine as my other little ones searched Nana and Papa's yard for Easter eggs. I soaked in God's glory in a different way with my beautiful family which I have been so blessed with.

Many have asked if Jacob was ever baptized. He was at UW shortly after being born. Sadly, I could not be there but Andy was. The lasting reminder I had was that Jacob smelling of the holy oils for a couple of weeks because he wasn't getting bathed at the time. It was like his own personal holy cologne reminding us that God's hand was on Jacob. I think that smell will always take me to a different place than most people. The priest didn't give a cut and dry version. He went through the whole ceremony which was strange considering Jacob's condition at the time. It was comforting to Andy that the nurses participated in the ceremony and someone (Andy thinks it was PJ, one of the transport nurses) kept there hand on Andy's shoulder the entire time.

Jacob has been doing so well. He was off his oxygen for a week but had to be put back on because he lost weight that week and the doctors are concerned it is because he is burning too many calories while working harder to breathe. The pulmonologist disagreed but Jacob does have an easier time eating when he's on the oxygen so I'm fine with him back on. (For Easter he was able to take a little break though.)

Today was his first day off the Sildenafil for pulmonary hypertension. If he continues to gain weight, we will take him off oxygen during the day only for about two weeks then do an oximetry study overnight to make sure he is oxygenating well enough during his sleep. If the results are favorable, he will then be taken off oxygen all together.

On Friday, Jacob will have a CAT scan of right lung and a bronchoscopy as well. These will be done under sedation. That's the part I am thankful for but also nervous about. Please keep Jacob in you prayers. I worry about him being scared and in pain. He has terrible separation anxiety as it is and I hate to think of him uncomfortable and feeling abandoned. We will also see his surgeon after the studies so hopefully we will have a better idea of what is going on before the weekend.


  1. That was beautiful and agonizing all at the same time. I wanted to see it again, glad you posted it, but it gave me such an anxiety attack I could barely breathe, even though I know the happy ending. Andy must have been thinking "please hurry."

    It was a very happy Easter this year, celebrating with miracle Jakey. mom

  2. I rejoice for your beautiful children and your family's blessings. The story you write, the baptism, and the most recent wonderful photo each bring tears of thankfulness when I see them. Thank you for sharing.