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.

Good News! Good News! Bad News?

Just chillin' like a pro in his tiny hospital gown!
Apr 20, 2012 -Jacob had the CAT scan of his lungs and bronchoscopy done today. First good news...he gained almost a whole pound in just two weeks! That's always a relief. Also,  he did awesome today! He was a happy trooper! I was able to carry him into the scanning room where I laid him down and they put a mask on putting him to sleep. He was very relaxed being that he had been asleep on my chest (one of my favorite things!) prior to laying him down. No fussing, a kiss just before he was out and then I left the room. About an hour later the pulmonologist came out and shared more good news. Jacob does NOT have a CCAM (a growth or malformation) which would have resulted in Jacob needing to have a lobe of his lung removed. We do know what is causing his abnormal lung x-rays though. His thymus is large (normal) and misplaced placing pressure on his lung. Is this really bad news? Well, I'm not exactly sure. He will not require surgery (a plus!), but because his lung is squished, his right upper lobe is full of secretions that inhibit proper oxygenation to some extent (although, overall Jacob is breathing almost perfectly.) The pulmonologist and Jacob's surgeon seem to have different takes on this new development. I'm not quite sure what to make of it. The pulmonologist was happy it wasn't the CCAM but concerned about the thymus pushing on the lung and the amount of secretions in there. Also, Jacob's anatomy was abnormal but that is understandable considering his liver was up in his chest cavity pushing things around. She said she had to talk more with the radiologist but Jacob may require an MRI to give us a better understanding of what's going on and what to do about it, if anything. She said the ct-scan provided a much clearer picture of what's going on with Jacob. Jacob's surgeon seemed to think we just ride this out for a while and keep an eye on it because Jacob is doing so well. He doesn't seem to think we have to do anything.

So what is the thymus?  The thymus gland is one the the seven major endocrine glands. Located in front of the heart beneath the breastbone, the thymus glad regulates the immune system. It is largley composed of lymphatic tissue. In our younger years, the thymus gland is quite large and active. It helps program our immune system to resist various infections by helping lymphocytes to mature and be programmed to attack specific microorganisms and invading irritants.

We head back to the pulmonologist in two weeks. At that time, I'm sure the doctors will have put their heads together, figured all this out, and made a plan. In the meantime, we are feeling very blessed with how great Jacob is doing. When talking with his surgeon today I asked if he ever was more worried about Jacob then he led on. He said he was sure Jacob was going to end up on ECMO and is amazed he didn't considering just how sick he was. We are so thankful! Although ECMO can be a wonderful thing providing rest for the heart and lungs allowing for development and growth, no one wants to see their baby on it nor subject their baby to the risks if they don't have to. Jacob is lucky he did not have to fight that fight as so many little warrior CDH babies do.

Jacob's plan now is to stay on daytime oxygen for the weekend since he had to be sedated today, and then be off during the day, on during the night. Jacob will then have an oximetry study during the night where they record his saturation levels while he sleeps. If he passes, he can be off oxygen altogether!

3 comments:

  1. Praise God!! Lots of great news here!!

    Love,
    Finley's mama - Liz

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  2. Oh Rondeau Family, your boy is just amazing. I can't believe all that he's gone through and he just keeps fighting!!! Oh man, I think God must have some great things in store for him!!!! Hugs to you!

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