As I have mentioned in previous blogs, Archer had almost daily blood draws to see what his different ‘numbers’ looked like. He would have tests like CMP, CBC, ALT, AST, Ammonia, INR, PT, Albumin, and Bilirubin. On top of that, he had a neurology test, liver biopsy, heart scan, esophageal scope, and a PIC line placed.

Yes, we learned what each of these tests meant, why the numbers mattered, what the standard ranges were, and what would need to happen within his body for those to go into the ‘normal’ range. 

Archer’s blood tests would be sometime between 4 am – 6 am daily. We would then get all of the results before rounds, which typically started around 10 am, to our phones through My Chart. 

My Chart has been a blessing and a curse…

While we got to see every single result quickly and not have to wait for the doctors to come to tell us the results, we got every single result quickly and didn’t always have someone to explain the results.

When a test would be out of normal range, a little red exclamation point would pull up on the test.

Every time I saw that indicator, my stomach would drop. My mind would race. I became fearful for my child’s life, and there wasn’t a single thing we could do about it. And this occurred multiple times each day for six weeks. 

Since Archer’s passing, Theo and I have been exploring the options of IVF. Through that process, many tests must be completed for each of us. This is so the doctors can understand our fertility and anatomy to create a plan.

When we got the results of my blood tests, My Chart gave me a little notification. I opened the app and got to the ‘Test Results’ section. There it was, a little red exclamation point…

At that moment, I felt like I teleported back to that hospital room, watching Archer’s tiny body fail and being able to do nothing about it. My stomach dropped, my heart raced, and I became very anxious. 

Disclaimer: Nothing is wrong with me. I have low Vitamin D, so I should take supplements because research shows that Vitamin D helps with fetal health. 

The point isn’t that I had abnormal results. The way I felt seeing that indicator took me right back to the place of fearing for my child’s life. It was one of the most overwhelming feelings. It felt crippling. 

I know that taking care of myself, Theo, and my future children, we will go to the doctor, have tests, and not all of them will have ‘normal’ results. And it will be hard to see that dreaded indicator, but what will be more challenging is feeling like I am back in that hospital room, watching Archer’s body fail and unable to do a single thing about it.

I’m not sure if ever getting a My Chart result with that little red exclamation point will ever be easy or un-concerning again.