"From the Borderline"

I originally thought to name this blog something to do with the term "Borderline" because as we navigated a maze of inconclusive medical tests, my husband nicknamed Hailey our "borderline baby." (After some quick Googling, I realized it wouldn't be an adequate blog name because it is most closely associated with Borderline Personality Disorder).

I first brought Hailey to the children's hospital emergency room in October because she threw up a funny color: it was a neon yellowish green and mucousy. The first time she did it, I was concerned but she had been sounding congested and I figured throwing up was the only way a baby could pass mucous. When she threw up a second time within that hour, I called the pediatrician and they told me to get to the hospital immediately.

In the ER, they checked Hailey over, made sure her intestines hadn't twisted loose, checked on a few other things, and when she was able to keep some pedialyte down, they let us go home. But four hours later, I was bringing Hailey back to the hospital for the same continued symptoms, but this time she also had a fever. Thus began our journey through varying and evolving symptoms, slight improvements and then major setbacks.

I tried to keep my Facebook updates about Hailey top-line because most of all, I wanted to respect her medical privacy. I thought she would get better and I didn't want her to someday feel embarrassed about all I might have shared. I also didn't want to overwhelm people with medical jargon, depress them, or make their heads spin with the rapid ups and downs that are common in the NICU. But my husband and I decided we did want to share at least some of what was going on because we badly desired everyone's prayers. Knowing that so many people around the country and world were praying for Hailey is what helped carry us through some of our darkest moments. In times such as these, there are some family and friends you expect to hear from, and then there are other people who crawl out of the wood work to stand tall for you, and you are touched by the unexpectedness of it all.

I think the one major drawback to how we chose to update folks about Hailey is that in an effort to stay positive and respect her privacy, people perhaps didn't understand how dire her circumstances were and what kind of news my husband and I were getting inundated by at the hospital on a daily basis. Our closest family members knew more than most, and with all the ups and downs, wondered and worried if we were receiving the best medical care possible for Hailey.

Without going into too much detail, the doctors explained all of Hailey's testing with an analogy that first they look for ponies and if that fails, then they look for zebras. So despite our families' concerns, a long NICU stay is not uncommon with a newborn. After all, they have no way to communicate their symptoms and struggles, so it can all be an (educated) guessing game.

And Hailey passed all of the standard tests. For many of them, she was on the borderline of the "normal" range, but she was okay enough that the doctors weren't overtly concerned. Hence my husband's teasing with the nickname "borderline baby." A parade of doctors from every specialty in the hospital came to examine Hailey and they all felt that whatever was afflicting her was not within their realm. At first, I felt so relieved that they couldn't find anything. But then Hailey continued to worsen and we went from looking for horses to the more exotic zebras. With every examination and new test, I grew more and more anxious. It started to feel like a game of odds, and I feared eventually we were bound to lose.

Hailey turned out to be a zebra indeed. My beautiful, sweet zebra. Shortly before Thanksgiving, my husband, Hailey and I all had our blood drawn for genetic testing, which we were told could take three to four months to return results because of how complicated and time-intensive the process is.

Hailey was eventually diagnosed with an incredibly rare, multi-system and terminal genetic disorder. Over the duration of our hospital stay and as more symptoms revealed themselves, doctors were able to put the pieces together and presented us with their suspicions. However, we didn't formally receive confirmation of the diagnosis from the genetic testing until eight days after her death.

If my husband and I ever win the lottery, I will invest a large some of money into improving the timeliness of genetic testing. NO parent should EVER have to wait MONTHS to find out if their child will live or die.

In our case, Hailey revealed her path to us before the tests did. And in the between, she showed me so much more. She taught me patience and presence and the need to reach for a more sanguine outlook on life. She taught me how to live on the borderline when I'd always feared it. But that delves into what will have to be my next post. For now, I need to pack for a trip to house-hunt at our next duty station and attend my future sister-in-law's wedding shower. Never a dull moment, but in this moment of life, I appreciate the opportunity to stay busy. With love.