I've avoided this app since labor and delivery 16 days ago. There were so many emotions and emergencies that we had to get through. But here goes...

I was scheduled for induction on Feb 5th 2018. My waters broke at 6am (ish) on Feb 2 2018. I was not having contractions but I went straight to the hospital because Jahira (yah-hear-a) has CDH. They confirmed my water's, admitted me and started me on pitocin. The dose increased every 15 minutes so it didn't take long for the pain to get serious. I decided to get an epidural early on (thankfully). Around 130p, after receiving the epidural, we noticed her heart rate dropping dangerously low (30s and 40s). The doctors tried repositioning me multiple times and they tried adding fluids to back into my uterus. Her heart rate came up but not enough so I was prepped for surgery. Being that my epidural was already working, I wasn't knocked out with a general anaesthesia. I was prepped and delivered within seven minutes. The room was so silent after the doctor said happy birthday to your baby girl. She didn't make a sound and the team became really quiet as well. One thing they never tell you about c sections is how long it takes to see you back up. She was whisked off to NICU and I waited as they finished then had to spend 2 hours in recovery. As I was transported to my room I asked why we had not heard anything from NICU. The nurse called and NICU informed me that they had to transport her from their level 3 facility to a level 4 facility. Previously we had been reassured that this facility could handle CDH. Later we found out that normal protocol is for all CDH to be sent to the level 4 facility that they transported her too. Luckily the NICU had a bed available and she was driven (almost flown by helicopter). I was stuck in a hospital 2 hours away for 2 days waiting for discharge while she was in the NICU in the new hospital. Originally she was doing well, the new hospital was very familiar with CDH so they knew how to stabilize her and they had her surgery date set to fix her diaphragm. Then one of the IV lines that the original facility had placed, started to leak into her lungs. (In newborns doctors like to use the umbilical veins as a source for catheters) (I think I used the right terminology). The original NICU placed the IVs but didn't xray or ultrsound to verify that they were in the correct place. Her organs are misplaced because of the CDH so it is imperative to verify where every IV is. This leak cause her so many issues and her surgery was cancelled and she had to be placed on ECMO. Which is a machine that pulls unoxygenayed blood from the body, oxygenates it, and puts it back into the body. The sight of this machine connected to our baby's neck felt like a scene from the worst horror movie. 7 days later and many complications including clots, acidic blood, bloody urine, and swelling, she was finally well enough to come off the machine. So here we are, 2 days off the ECMO and she's responding well with just a ventilator. Her surgery to repair her diaphragm has been rescheduled and we are praying that nothing else pops up. After surgery she will need the strength to recover, then she will need physical therapy because for those 7 days she was on a paralytic and blood thinners and had to keep her head in one spot. She will also need to be able to feed and she will need to be able to oxygenate and ventilate with minimal help.

That's the brief birth story of the last 16 days. CDH is still considered rare even though the level 4 NICU deals with so many of them each year. Out of the 44 NICU beds 5 babies currently are CDH babies. If you have questions I don't mind answering. I wish I had a better idea about CDH delivery and treatment before I had to experience it.

Update: 9 weeks in and it's going well. The process is slower than I imagined but she is doing so well! She is off all pain meds, extubated, gaining lots of weight, building muscle, breathing mostly without assistance and not refluxing.