Shellshocked and Scared

We left the appointment up in Madison shell-shocked. I am the analyzing kind (guess that's why I'm an analyst by trade) so I read all of the information the genetics counselor gave us on the way home. I had asked my boss to cover for me that night as I have to do after-hours website validation sometimes and I knew it was going to be a tough day. It didn't help that this was one of the busiest times I've ever had at work and I was working 80 hours a week and still not keeping up. Taking off of work wasn't an option, but that's probably for the best as my husband and I just spent every night staring at each other and trying in our ways to come to terms with the reality. My husband stayed distant, that's just his way of processing. He was unwavering in his conviction that Jonah was going to be fine though, he assured me morning, noon and night as I cried and cried and cried some more.

To add to the stress my husband lost his job between us makng the Madison appointment and going to it. They had been cutting 10-20 employees each month for a while and they're not a huge company, so we knew it was only so long before they decided they needed fewer IT staff, and my husband, newest employee in the department, was a natural choice. He was trying to volunteer wherever possible but his number just came up, poor timing and all. Luckily we had saved for the possibility and I carried our insurance, so we knew we'd be fine for a few months but he got started on the job hunt immediately. I can't imagine the strain he felt at home each day and going on interviews while we had this hanging over us. Luckily his boss wrote him a glowing recommendation and his boss's boss put out a few feelers for him.

I dealt with my feelings by devouring everything I could find online. I'm naturally someone who wants to know and understand everything so I read medical journals and hospital FAQ pages and blogs. I read so that I would know whether anything the doctor said was a good indication or a bad sign, so I would know where the best place to deliver was, to know what the darn percentages that I didn't want to know meant for us. I read a lot on the CHERUBs website, exclusively for Congenital Diaphragmatic support. What I quickly found though, was that most of the blogs and people who participated in CDH support groups were the ones that had lost children to CDH or had ongoing challenges. Which makes sense, you're much more likely to get involved when it's something you have lost a loved one to or are dealing with on a daily basis. But when a good friend told me to stop reading these and that I was driving myself crazy I made a concious effort to find a living CDH baby's blog to read. I found many, but the one I most religiously followed was Kaden's. He had been born and was still in the hospital when we received our diagnosis and seemed to have many similarities with Jonah so I felt very connected to their family, though I didn't contact them. I hope they will not mind me posting a link to their site, this is the first post I read when we received the diagnosis, then I went back and read everything before it and read it every day up until Jonah was born. I learned so much on what to expect in the NICU from them. Sadly Kaden got his angel wings a few days before Jonah was born, which made me sad yet again, was there NO good news in this awful birth defect?!? Was there nothing you could do, how helpless! We prayed a lot and held on to each other a lot, we buried ourselves in work and wandered around the house like zombies for 11 days. Then we contacted our best friends, who happen to live in Racine and also happen to be expecting, and asked them for a fun night out. Of course, we had no idea what we wanted to do, since I still couldn't eat any fat (due to the gallstones) and had a weight restriction of 10 pounds (due to the marginal placenta previa, which they couldn't seem to decide whether it had moved up or not). We didn't want to talk about the diagnosis, we didn't want to do anything good for us, we just needed to get out! So we made a date for that upcoming Saturday, April 25th...which also happens to be Jonah's birthday (yep, you know where this is headed).