Thank goodness for Pediatric Surgeons

Its been a little over three weeks since we found out about the challenges our little guy is facing. I feel like I've gone from knowing nothing about diaphragmatic hernias to being a total expert overnight. We've felt such an outpouring of love and support from our family and friends -- thank you SO much! All the phone calls, text messages, emails, and Facebook messages have meant so much to us as we've tried to wrap our minds around the situation. And, thank you for all your prayers -- I know the Lord hears and answers our prayers.

We've had the opportunity to talk with two pediatric surgeons in the past two weeks. The first surgeon was an old family friend, which really was comforting as I learned more about my little guy's diagnosis. Both surgeons told us pretty much the same things and cleared up many misconceptions that the previous doctor accidentally gave us. I'm not completely sure how to explain everything we've learned, so I'll just write it out in bullet form.

• There's no "average" or "norm" associated with diaphragmatic hernias. The stats don't really mean anything because every baby is so different and every situation is so different. So, there's no average time for stabilizing our little guy, surgery, or recovery. It could take anywhere from a few weeks to a few months. Some babies have this diagnosed in-utero, some have it diagnosed at birth, and some children don't even know they have it until years later... Yeah, every situation is completely different.The only stats that really matter, which both surgeons told us, is that 55%-60% of babies survive diaphragmatic hernias.
• The real concern isn't heart development, tho it can also be affected in rare situations, the real concern is lung tissue development. If there's little to no lung tissue when our little guy is born, then he'll have a much harder time being stabilized and making it through. Even with 100% oxygen being sent into his body, the oxygen can't be used if there's no lungs to send the oxygen to the rest of the body. Since the hernia is on the left and pushing the heart to the right, both lung spaces are being invaded. However, the good news is that in our last ultrasound three weeks ago the liver wasn't in the chest cavity, which means there is more space than could be otherwise. Let's keep hoping the liver stays low in the stomach! We have another ultrasound next Tuesday, so we'll know more by then. 
• No matter how amazing ultrasounds are, they can't really decipher how much lung tissue is developed -- especially since babies are so squished inside the womb.  It may look like there's lots of lung tissue and really there isn't, or it may look like there's little lung tissue and really there's much more than expected. There's no way to tell until our little guy in born and he takes his first breath. 
• Both pediatric surgeons told us that we're in EXCELLENT hands at Primary Children's Hospital. I'm so glad we're living close to such a great and well-known hospital. The doctors and surgeons at Primary Children's will do everything possible to help our little guy beat this trail in his already young life. And, despite the rarity of this disorder, the surgeons see many cases of diaphragmatic hernias every year, so they have lots of experience and knowledge.
• Contrary to what we were formally told, this kind of hernia isn't a genetic disorder. There's no gene linked to this disorder -- its just a random birth defect that affects about 1 in 2,500 babies each year. That being said, our future children do not have a higher chance of also being diagnosed with this disorder. One of the pediatric surgeons told us that he could basically guarantee that we'll never have a child diagnosed with this again. Also, along the same lines, having a diaphragmatic hernia doesn't also mean you have a higher chance of being diagnosed with a chromosomal disorder such as Down's Syndrome. Sometimes those with Down's Syndrome also have this sort of hernia, but having this hernia doesn't mean you'll have a chromosomal disorder. I hope that made sense. 
• Also, contrary to what we were formally told, there's not a 1 in 3 chance he won't make it out of surgery -- he has a 99% chance he'll make it out of surgery! He won't go into surgery until he's completely stabilized, which could take anywhere from a few days to a few weeks to even longer. So, he'll of course be on an oxygen tube during surgery, but he'll be stabilized and he able to breathe at least a little. Its just a matter of making sure he has enough lung tissue to make it to surgery. 
• The first 24-hours are like a "honeymoon" period -- things can being going really well and then flip or visa-versa could happen. However, the first 4-5 days are very telling of what's going to happen down the road. If he's doing pretty well then he'll continue to do pretty well, or if he's not doing too well he'll most likely continue down that same road. So, at least its comforting to know that if he's doing well for a couple of weeks, he won't suddenly take a turn for the worse.

Like I said in my last blog post, I really do believe in miracles. I know that miracles still happen every day and we're just hoping and praying that he'll be our miracle baby. I've heard many positive stories in the past few weeks of babies who were born with this disorder and who've gone on to live normal lives, which brings me so much peace and hope. I know our little guy is a fighter and he will do everything in his power to beat this trial.

On a happier note, I've started feeling him move more and more over the past few weeks. Its such a sweet experience to feel this little person wiggle around inside. Its almost like he's saying, "Its okay, Mom. I'm gonna make it!" He seems to move the most while I watch movies -- I think he's gonna be a movie buff :)

Thank you, again, for all your thoughts and prayers! We really appreciate your love and support. We feel so blessed to have such wonderful friends and family.