On August 21st, at 26 weeks into my pregnancy, I started feeling slightly crampy but did not think anything of it. I was moving into the 3rd trimester and Braxton Hicks, etc., are totally normal. At midnight, I discovered an abnormal amount of blood and went into my pediatrician. They decided to do a test for amniotic fluid, and I tested positive. The doctor told me I was in labor and I would be delivering Emily that night. My local pediatrician was not equipped to handle a potential birth as early as I was, so I was flown via helicopter to San Antonio. Little did I know, this was only the beginning of my hospital journey that would ultimately last until November.

Summarizing my long hospital stay: Emily was healthy and happy the whole time, but it turns out I have cervical insufficiency, which was why my body was trying to deliver at 26 weeks. A couple of weeks into my hospital stay, my water broke, but I was able to hold on until 30 weeks. I went to delivery 3 times and fought it back, but the 4th time I had developed a massive infection and my placenta was detaching, so we had no choice but to deliver, and Emily was born on Sept 10th.

In October, Emily was diagnosed with 2 significant issues. First, a cleft in her soft palate, and second, a super rare syndrome (Bilateral Lambdoid and Posterior Sagittal Synostosis, named "Mercedes Benz Syndrome"), which has caused the bones of her skull to fuse early, putting pressure on her brain. Her neurosurgeon says it is so rare, there are only 79 known cases in the world! With these 2 findings, she will need a minimum of 2 surgeries. One at the end of January for her skull and one at 12 months of age for her soft palate, and she will have to wear a helmet 23 hours a day for 12 months to ensure her head grows and re-fuses properly.

The night before we brought Emily home from the NICU, a pipe burst in our kitchen. No one was home to catch it (except the dogs), and 3/4 of the house was soaked for 13 hours while we were at the hospital. Most of the house has been deemed unsalvageable, which required remediation and then a remodel.

And finally, the day after we left the NICU, in the midst of dealing with homeowners insurance, we got a call from the hospital billing department letting us know they do not accept our insurance (Cigna), and so they canceled all of Emily's future appointments, including her neurosurgery, OT, speech therapy, craniofacial surgery, feeding support, at-home support, and helmet consultation. After about a month of back and forth, the hospital walked back and said we could use Cigna as "out of network" coverage, which should be a 60/40 split after our deductible. Unfortunately, we are at the mercy of the insurance company in terms of what they deem "medically necessary," and we have already encountered quite a few things that they are refusing to cover at all. And of course, our deductible restarted with the new year.

We hoped to navigate this process on our own, but we are only a few months in and the bills are already piling up. Anything we receive will go directly to Emily's care and future. If we have anything left over from this process, we have an account for Emily that we plan for her to have a college fund.