” ‘Sometimes,’ said Pooh, ‘the smallest things take up the most room in your heart.’ “A.A. Milne
The big featured photo on the initial WELCOME blog post is the earliest picture I have of my baby. My very loved and VERY wanted baby. One day he may read this, so I will try not to be TOO embarrassing.
In June 2018 I began taking pre-natal vitamins. I was trying to get as healthy as possible because Jesse and I had been seriously talking about actively trying for children, and I wanted to make sure everything would go according to plan. I was working out 4-5 days a week, had lost about two dress sizes and about 20 pounds, and was feeling the healthiest I had in quite some time. I had weaned off my anxiety medication, and was using a Cognitive Behavioral Therapy to help alleviate some symptoms of the same, as I had dealt with Generalized Anxiety Disorder since my teenage years. I was eating cleaner, taking lots of vitamins, and eventually went off my birth control pills.
We began actively trying for a baby around September of 2018, which meant I had been on my vitamin regimen for about 4 months. The first few months brought negative results, but we hadn’t been too strict as far as marking ovulation days until a little later in, so I wasn’t concerned. The first week of December 2018 I got a positive pregnancy test, it was not one of those big romantic reveals like you see on TV. I had a late period, and just had a feeling, but my first few over the counter tests had come back negative. On a whim I decided to shell out the extra $2.50 and bought one of the fancy digital tests to see if that could give me an earlier or different result.
It was positive. I ran into my master bedroom with my jeans at my ankles waving a pee stick at my husband while exclaiming ” I NEED you to look at this, I think I am hallucinating!”
Then because I am a generally neurotic person, I took a few more. I couldn’t believe it. We wanted this baby so much, and I just had to keep convincing myself that they were real and really happening. I found out a little earlier than most people would, so I had to wait about three more weeks before I was far enough along that an OB would see me to do the initial scans and confirmation appointment. I took a test a week after that just to keep convincing myself it was happening. The first week of January I was able to go to my first OB appointment, my mother, younger sister, and husband all accompanied me
They did our initial sonogram, he was the size of a grain of rice, the ultrasound tech confirmed the pregnancy was real, and we all cried. My sister Katie affectionately called him “Rice Baby.” Rice Baby was the first grandchild on BOTH sides of our family, and the first baby to be born in our friend circle in quite some time. Everyone was thrilled! Other early nicknames included “McNugget” and “Earth Pig” which was an allusion to the Chinese new year. We were so happy, I spent most of the day crying, and looking at baby clothes on the internet. We knew we needed to wait to tell employers and the general public until closer to the end of my first tri-mester until we were out of the danger zone of miscarriages.
After that everything seemed normal for the most part, we discussed names and nursery ideas. my February appointment seemed very good, my blood work had seemed fine, strong heartbeat, I had even lost a little weight towards the beginning due to the morning sickness, but they did not scold me, and I was feeling overall pretty healthy. At 15 weeks we had been too impatient to wait and we went to an independent ultrasound company for a gender reveal appointment, we found out he was a boy. The first week of March I went in for my typical appointment, and they did some blood work, and an early Gestational Diabetes test. I was 16 weeks or so along. I was worried about the GD test, because I had struggled with my weight for a lot of my life, and while I was currently in a good place I was wracked with paranoia. I left to go home that day with my biggest fear being I would get a call the following monday that I had failed my glucose test.
On Monday I did get a call. I sighed when I saw the caller ID. I rolled my eyes and knew it was bad news, because if the results had been negative they would not have bothered to call. Moreso it was odd because the actual doctor was calling me and not the nurse or the front desk. I braced myself.
The doctor kindly informed me that, my blood panel had come back strange, and they wanted to refer me to get a high level ultrasound at a High Risk OB in Temple Terrace. She explained that the blood test was a screening and not a diagnostic, but my levels had indicated a chance for Neural Tube Defects, and I needed to go and do the diagnostic. Unfortunately the earliest appointment wasn’t for another three weeks, and so the earliest time I could see the specialist was March 27th.
March 27th. It’s so strange to type it out, because I can honestly say (so far) was the very worst day of my life. I remember it like a movie, a slow motion play by play of an out of body experience. I entered the specialists office with my husband and my father. My dad is a retired M.D., and so I wanted him there in case the news was bad. He would be able to explain things to me and be a clinical perspective on our side, which I really needed after the last month of me losing sleep, and researching every possible thing that could be the matter with our little one. The ultrasound started, our technician was very nice, and began by asking us innocent questions about the baby and our family, “Was this our first pregnancy?” “Did we know the sex?” etc, making small talk
That quickly stopped. she began to take notes and specialized photos, and I knew something was wrong. Statistics kept swimming in my brain, so many people I knew had done this same screening and things were FINE, the odds of it being something serious were SO low, etc. Trying to comfort myself even though I knew in my gut we were about to hear some bad news. The technician excused herself, which I knew was really the confirmation I needed, if it had been nothing she would have told us on the spot but instead she went to summon the actual doctor. He came into the room
The Doctor came in, and in a very kind but direct way told us that our baby had a form of Spina Bifida called Myelomeningocele. It was a neural tube defect that occurs during the first four weeks of pregnancy. MMC (for short) occurs during the replication of early fetal cells, and the spine does not close correctly. Our son had a lesion on his spine, that looked like a bubble, where his spinal cord and nerves were exposed to his amniotic fluid, which was causing damage to his nerves and would effect his mobility.
Even though my gut had earlier told me that something was wrong, I sat there sobbing. My dad had gone pale, he had been convinced we had dragged him along for nothing. Jesse was stunned, gripping my hand and staring into space. It was not a good day. The Doctor proceeded to perform an amniocentesis on me. For the laymen at home that is when they stick a needle into your pregnant belly and extract a few vials of amniotic fluid to test for chromosomal abnormalities.
We were testing those because we had been given a few options by the doctor to discuss. The first was termination, which legally they are required to tell everyone who comes into the office, but was heartbreaking to hear nonetheless, the second was a surgery that could be done post birth to the baby to close the legion, and the third was a little bit of a long shot, but would include an in utero treatment with a specialist in Philadelphia, that would close the legion while he was still developing, and while it wasnt a CURE, it would ensure no FURTHER damage would be done to the baby. The longer the baby was exposed to the amniotic fluid, and the longer the spine was pulling down on the baby’s cerebellum, the more damage that would be progressively done, with no way of closing the legion until after he made his appearance into the world.
So we took a deep breath, and we made some phone calls. And in a HUGE leap of faith we….. went to Philadelphia. To complete a diagnostic to see if we would be eligible to get our son some preemptive care.
And that is where I am in now. In Philly. But more on that later.