This morning, we got everyone finally loaded up and made the short trek to Peoria. If you’re wondering, Frozen is the exact length you need to get you from our door to my parents house. We pretty much drove in silence as I whispered prayers over and over.
We are so so thankful that my parents rearranged their schedules and took time off to watch Owen and Ellison. Not having to worry about them was wonderful. When we arrived, they rushed immediately to the basement where the toys are. :) I nursed Miles, grabbed some food, and William and I headed out to downtown Peoria. OSF Saint Francis Medical Center and the Children’s Hospital of Illinois is just about 15 minutes from my parent’s house.
We filled out paperwork and got in pretty quickly. A nurse took the standard length, weight, and head circumference measurements. I was thrilled to see that he was already up to 10lbs, 1oz.
We waited for awhile in a small exam room and then met the super nice Jen Tarpinian who is a genetic counselor. Here’s her staff picture more so I remember. :)
She started by asking a ton of questions about the pregnancy, birth, and our family history. All while making little genetic looking diagrams on her paper. :) When she paused and asked how Miles was doing, I said that he was great, I was the one who was a mess. She immediately put down her paper and said “while I still need to confer with Dr. Hoganson, the blood work I’ve seen looks fine.” And cue the Kleenex. We talked a bit more and she said she would be back in shortly after looking over the last round of blood work results with Dr. Hoganson.Then the long wait began. She popped her head back in to ask if we had gotten an urine sample and it was “pending” or we needed to do one today. I told her how we had done it a say later as the lab hadn’t realized they needed it. Then a bit later, she came back and said they were doing a large blood draw on a baby next door (hence the screaming we heard) and when it got quiet we could expect to be next.
Dr. George Hoganson came in with Jen and while quirky, he was very kind, knowledge, and easy to understand. He started by telling us a little more about the newborn screening. He said that because thousands of infants are screened in the state, there are bound to be cases that pick up borderline kids like Miles. His metabolism was definitely not all the way matured, as witnessed by his jaundice. This was likely why he had elevated C3 acylcarnitine. (don’t you like all these fancy new words I’m learning to use?) He said a lot more big word things too, but I basically tuned as I understood that he was almost “apologizing” for our trip. Miles was ok. I tried to hold it together.
I did quickly tune back in when he said that all of Mile's’ blood work had come back in normal ranges and they had tested his urine for ketones and it too, was fine. He had to do a physical exam while we were there. We mentioned the cleft palate so while Miles was screaming and giving us a good look, Dr. Hoganson checked it out. And guess what, more good news. He said he wouldn’t even classify what Miles has as a cleft palate as he thinks the entire palate is intact. He threw out a few other suggestions like maybe bifid uvula (although this doesn’t look anything like what I see) or just an indentation in the soft palate, but definitely wouldn’t call it a cleft palate. He said to follow up with our pediatrician and watch it as he grows. I’m pretty sure I told him that I wanted to hug him at that point. At that point, he said Miles looked great and he would be closing Miles’ file with the state. cue: more tissues.
I asked Jen to take a picture of us before we headed out. She did and then said she couldn’t be happier to close a file and never see us back here.
We packed everything up, hugged, called William’s parents and drove in silent happiness back to my folk’s house. I walked in and simply said “he’s fine” to my dad who burst into tears. Followed by more tears from my mom.Thank you Jesus. It was a good day.
Every baby at an Illinois hospital has a blood screening at 24 hours and before leaving the hospital. I saw both of Miles’ screenings being done. They use a heel warmer to get his blood flowing more easily and prick his heel. Then they squeeze his heel hard and fill in each one of circles with his blood. This card gets sent to the state where it is screened for all kinds of genetic disorders that may not “show up” with physical signs at birth.
The next day they called back to apologize that they had not completely read the orders to see that they needed an urine sample. So another trip to the doctor and we got a u-bag and I spent the morning nursing, checking, nursing, checking and finally getting a sample to take back in. And now we wait. We know nothing except that we will be meeting with Dr. Hoganson, a geneticists, and a dietician tomorrow.
Some of the people I know are asking how I’m doing. Honestly, I feel like I handled the birth and NICU stuff pretty well emotionally. And then this was the “straw that broke the camel’s back.” The first day I just cried and cried. Ellie kept saying “mommy sad?” which made it all the worse. I did just a little Google research just to find out a little more about it and prepare myself to ask questions tomorrow. I also tried to find real stories of any infant who has had this to see if nursing was possible (it wasn’t). As of today, I’m just crying when we have a sweet, quiet nursing time. Every time I get a chance, I just lay hands on him and pray that it was simply a false positive on the screening. I’m just choosing not to ‘go there’ yet until I have to tomorrow.
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