Why a Blog?

For those of you who know me well, I have never been a huge writer. For instance, I have scrapbooks from nearly 10 years ago that would be complete with only a little bit of journaling. It’s seldom that I even finish a To Do list (both writing and doing). So why would I want to start a blog? There is a lot of writing and commitment to writing. Well, the truth is this. After Jack was diagnosed with CDH, I was scared of the internet. I didn’t search for any information on the world wide web. When I was first given those three terrifying words, I waited until the following day for an appointment with a specialist to inform me of it’s meaning. And this lasted the remainder of my pregnancy; and beyond.

Team Jack and CDH Awareness bracelets

Matt and I found out about Jack’s diaphragm when we went in for our 20 week anatomy scan. We already cheated and had an ultrasound at week 16 to learn the gender. We were so excited to be going to the anatomy scan to confirm that we were in fact having a Jack. It never crossed our minds that we would be making high-risk OB visits beginning the following day.

Over the next two months, Matt joined me at all the OB appointments as we watched in worry at every ultrasound. We were meeting more nurses, doctors and specialists than I ever imagined we would meet. A team started to form around Jack even before there was a set plan of his arrival and things were starting to look a little brighter. Jack’s hernia wasn’t severely large and he was developing a good amount of lung on the right; not as much on the left but it was visible on MRI. Jack’s neonatal surgeon assured us that in Jack’s current condition, he would not require ECMO and his chances of survival could be 90%. Though I had previously thought that anything less than 100% was bad odds, I gladly accepted 90% at this point. Those odds fell very quickly.

On September 5, 2011, my water broke. It was Labor Day ironically enough but I was only at the beginning of week 29. I instantly fell apart. I would spend the next nine weeks on hospital bed rest with the only opportunity to leave my bed being to visit the bathroom or for a twice a week ultrasound schedule. Jack’s chances of survival were dependent on the duration of my bed rest and his weight gain. The doctors were quickly becoming more pessimistic about Jack’s outcome and it was becoming apparent. A repeat MRI showed that the herniation was increasing in size, allowing more organs to enter his little chest cavity and crushing his developing lungs. They were no longer visable on MRI. We were given all the options including comfort care, but Matt and I stayed the course. We continued to pray for Jack and leaned on each other to keep our spirits up. I still did not visit the internet for success stories of other CDH babies. I was too scared that I would stumble over the story where he or she didn’t make it. I couldn’t read those words. So I refused to read any words.

The day finally came that  Jack would enter into the world. I made it to 38 weeks on bed rest but Jack’s birthday would be the hardest day of the whole journey. Without my body to keep him safe and alive, we had to take a chance on Jack. It would be up to him and a lot of medical intervention if he were to survive. The story of Jack’s birth date will come soon enough, but from the premise of this blog, we all know Jack made it. He fought a hard fight and he won. We all won.

Four and a half LONG months followed. Jack did spend two weeks on ECMO, followed by surgeries numbering in the double digits. It was not until Jack was home with us that I started to search the internet for other success stories. I found support groups and research programs, assistance for parents with chronically ill children, and even t-shirts proclaiming our son’s strength by which he overcame a possibly fatal birth defect.

So, why a blog? Because I want Jack’s story to give another mom comfort, another dad confidence, and to add another inspiring story to this frightening sea of research, definitions and anecdotes.

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This entry was posted in CDH Support and tagged , , , by Kaytee. Bookmark the permalink.

About Kaytee

I am a food scientist by training and a mom by experiment. My beautiful son, Jack was born on November 7, 2011 with a birth defect called Left-Side Congenital Diaphragmatic Hernia (CDH). My goal is to reach out to other families dealing with the same or similar hardships as well as keep everyone updated on Jack's development.

2 thoughts on “Why a Blog?

  1. Dear Jack, thank you for being such a strong boy. Katie and Matt thank you for believing and taking such good care of Jack. Thanks to all the caring Dr’s and Nurses who took such good care with our sugar Jack. Love Mom and Grandma.

    To all the parents or parents to be going through the emotional ride of cdh, put your seat belts on it’s a bumpy road of up hills and down hills but it’s worth the ride.

  2. Wow! Thank you so much for sharing your story! it was nice to read a similar story to Ours although we have a few different struggles. my sons CDH was undiagnosed. He was on ECMO for 8 days before his repair, in the Nicu for almost 4 months, came home on 2L of oxygen, g tube and all the bells and whistles (literally). We just celebrated his first Birthday and are amazed with how far he has come. Our biggest struggle now is feeding he eats nothing by mouth, but we are working hard and are hopeful! Thanks again for sharing Jack’s story I’m so happy he is climbing those stairs! Looking forward to seeing Him grow!

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