Home on the 4th of July with our perfect girl & first pediatrician appointment set up for 4 days later on July 8th. Because Sterling had torn his Achilles in June, he was off work for medical leave & his surgeon was kind enough to sign him off for a paternity leave, as well, which meant he could be with me for Izzy’s first appointment and first few weeks of life!
We headed to our first doctor’s visit ready to hear all the “awww’s” & “she’s so cute!” We did indeed hear those, but we also heard this — there seems to be an abnormal finding on her newborn screening which could imply an autoimmune disease.
What?
The hospital discharged us and told us everything was fine. Well, apparently these results hadn’t come in yet. I asked a couple questions while holding back tears, but we weren’t getting much information other than the ‘don’t stress out about it too much just yet’. I do remember asking what the disease was and the nurse practitioner told us it was something called TREC which she said meant that Izzy’s T cell count could be low and could mean her becoming sicker easier than other babies. When she left the room, Sterling looked TREC up on his phone and after he read a little bit, told me not to do the same. I knew that meant it was bad. But of course as I went to the worst place in my mind, Sterling held onto his positive attitude of ‘until we know anything further, I trust to believe that everything is okay’. God knew I needed him to balance me out. *Sidenote: It wasn’t until February 2022, due to a work training that Sterling took part in, that we finally learned that TREC isn’t actually the name of the disease, it’s the test used to screen for autoimmune disorders. The NP probably should have known that…
The pediatrician’s office decided they wanted to send us back to the hospital to get Izzy’s blood drawn again to repeat her newborn screening in hopes that the first one was an error, so we went to do that right away. Heel was pricked, blood was drawn, and we were headed back home praying for different results. (There may have been some tears, too.)
The following day, July 9th, I received a phone call from the pediatrician’s office and was informed that the repeat screening we went in for yesterday was done incorrectly. They were supposed to do three different tests to check her T cells & her bilirubin levels, but they only did one. This meant that we had to take our 1-week-old BACK to get her blood drawn AGAIN for the newborn screening a THIRD time due to hospital error. You have got to be kidding me.
So there we went – back to the hospital on July 10th, which was a Saturday. We were told to get there right when they opened, that they knew we were coming, and we didn’t need paperwork since we had just been in and the doctor’s office spoke directly to the lab. Sterling and I walk in with Izzy, I sign her in, and the confusion begins. Hospital says they can’t help us because we didn’t bring a new order, I tell them what the doctor’s office had specifically told me on the phone, hospital says they don’t have anyone there to do a newborn screening on Saturday mornings, I tell them we were strictly told to be here at this day and time. The registration lady is unsure what to do, I am ANGRY, Sterling is upset yet calm, we wait…. and wait… phone calls between staff are made, registration looks at me and says, “If I get this figured out today that’s going to be a miracle!” – she laughs, I don’t. Here we are, in a hospital waiting room, with our NEWBORN, the doctor’s office blaming the lab, the lab blaming the doctor’s office, no one on the same page. FINALLY we are told that they are bringing someone down from a different area who can do her screen. Jesus Christ. Thank you. (Although we *still* had to hold onto hope that this screening would go through because the lab had to “accept a note” from the tech saying the order was made without an actual order……….) This was the first experience of many where Sterling & I wondered to ourselves (and out loud), ‘Does anyone know how to do their job?’
The next day was Sunday, July 11th. With all of the chaos & frustration with her newborn screening(s), Sterling and I hadn’t even discussed another issue at-hand.
It all started from what seemed like a sensitive stomach & constipation. So we went through 3 different formulas and landed on pro-total comfort, but she was still gagging and throwing up constantly. Her little belly was so hard and so upset; she couldn’t poop and when she strained, she STRAINED. Too hard. This seemed to lead to her body shaking. But body shaking led to something more specific – one sided shaking, what I would refer to as trembles. And then it worsened and became more frequent. A couple times her whole body would stiffen. And then her eyes began to roll back. That’s when I knew. I tried snapping my fingers to get her attention. She couldn’t stop. She couldn’t focus.
This wasn’t just an immature nervous system like the nurses told me after she was born when I initially asked why she was jerking the way she was (though it seemed very logical at the time). And this wasn’t just “something weird” as the nurse explained her screaming to silence, throwing up, & turning white during her newborn hearing screen – to which they had no clue what to do & ended up bringing her back to our room. When they took her to try again, Sterling scooted right behind & didn’t leave her side. No, this wasn’t something to ignore.
My infant daughter was seizing.
And in hindsight, we believe she was from birth.
That Sunday as I held her on the couch & everything became more prominent, I began googling ‘infant seizures’ and turned to Sterling for confirmation. I didn’t want this to be true and I didn’t want to seem crazy. “Do you think she’s having seizures?” I asked him. His response – “I think that’s a possibility”. We began video recording all of them, shouting to each other wherever we were in the house, “She’s having one!”
Sterling called the pediatrician Monday morning as soon as they opened. He explained to them what was happening. They scheduled us to come in Tuesday, July 13th.
That morning before her appointment, I took all 3 kids to my favorite coffee shop (S/O Tremont!). We went through the drive-thru & drank our delicious drinks (don’t worry – no caffeine for them!). I was nervous that day, but I wanted normalcy. I’m so glad I did that & I’m so thankful for that memory.
The boys then went to Grandma & Pops’ house, and Sterling and I took Izzy back to the doctor. We explained everything again. Her throwing up, her constipation, her seizure-like movements. As they were confirming the findings on the newborn screen to be accurate & positive with an autoimmune disorder, Izzy laid on the table and in front of the pediatrician, had a seizure. In that moment, the doctor told us this was an emergency. She was far more concerned with the seizing than the newborn results. She stepped out and called Akron Children’s.
And so it began… our 18 day stay.