i sent this : <3 to rylan in a text message one day,most people know it as a Heart. well, ry thought it was a sideways view of puckered lips.. he thought it was the best thing ever, and i thought that was the cutest thing ive ever heard.

Thursday, September 30, 2010

My Baby, Born with CDH. Congenital Diaphragmatic Hernia

sure has been a while since ive posted. last you heard about me was i was pregnant. well, we had our BEAUTIFUL baby boy on June 7th 2010, Our second anniversary. Couldn't ask for a better , present,experience or Day! He was born at 8:52 pm. 19 7/8 inches long, and we dont know his weight for sure, but the nurses guessed around 6.7 to 6.11.

He was born with a Congenital Diaphragmatic Hernia...CDH. it is when the Diaphragm doesnt form completely, causing the abdominal organs to go into the chest cavity and crowd the lungs. Since the lungs are the last thing to form, being crowded isn't a good thing. in some cases the babies dont have any lungs at all.. :( .. in our case, his right lung is a little smaller than it should be and the left lung is only 1/3 of the size.

we named him Case William. when we first layed eyes on him we cried and cried, he was beautiful, it was the most amazing experience of our lives.. he was quickly taken away to be stabilized without us being able to hold him, kiss him, touch him... we got to see him 2 hours later. sedated, with a breathing tube and wires and tubes... he had surgery at 4 days old and finally able to wake up around 5 days old. finally got to hold my baby at 9 days old and daddy got to hold him at 19 days old. didn't hear him cry until he was 17 days old...

they dont know why CDH occurs, it happens one in every 2500-5000 babies. 50% of babies make it, and when they do, sometimes they have other problems, chromesome disorders, can be deaf, blind.. heart problems.. its heartbreaking and really scary, because they cant tell you the extent of all the problems the baby might have until he is born.

Not until he had surgery at four days old did they know exactly what was going on in there. His speen, intestines, stomach were up in his chest. his liver was part up part down...this caused his right lung to be a little bit smaller than what it should be, and his left lung to be only 1/3 of the size it should be.

As i write this, we are home. Case is Four months old (tomorrow) and he is on 1/4 flow of oxygen.. he has a feeding tube down his nose but eats Most of his food by mouth.. we just need the tube to 'top him off' he is such a strong little man, handsome, just like his Daddy, and Such a happy baby considering all he has been through. We are so lucky to have him home with us, so blessed that he is doing so well.

Here he is the first time seeing him since he was born, 2 hours later. poor baby the minute he was brought into the world had to be put to sleep...for 5 days...
and here he is now...



1 comment:

  1. Thank you for your story! My little girl was just diagnosed with CDH. I am 24 weeks pregnant now and have been worried about the outcome of when she is born. Seeing a story like yours and pictures of how your son is doing helps me feel better about everything. Thank you once again and good luck with your little blessing!

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