The SPINT2 mutation is a autosomal-recessive mutation. While our children had a high risk of having it, only Peter has it. That Kyle and I should find each other, both with this recessive gene mutation, was statistically unlikely. And here we are. I read today online that there is a high-risk of mortality. I guess I knew that without putting the words to it. Other infants have died. But not Peter. No, not my Peter who was saved. Because of his cleft (and many cases did not have clefts) we were already connected to UCSF. It is a strange feeling to feel that someone saved your child. My heart is open to them with this immense gratitude, especially one particular woman who I was on the phone with every week until she re-routed us from an ophthalmology appointment to the ER. There it all started.
I wanted to write the experience for so long. It felt surreal. How could I be in the ER with my child? How could things be this bad? But things were that bad, and I knew it. Two months and below birth weight.
Walking into the Pediatric ICU, I fell apart. It was like the movies. All that equipment and this little strange bassinet under a heat lamp. The equipment formed a wall. The couch was behind it by the window. There we sat. If Peter heard me, he cried. Mostly, he slept. I could do nothing for him. I felt useless, and helpless, and in a trance.
I cannot remember how many days we were in the ICU. I remember we moved to the 5th floor, and it was hard there. Hard to eat, hard to pump, with a baby who did not want to be put down. P visited me every day when my husband returned to work.
Eleven days. It is hard to imagine that was all. It felt so very long. How the days dragged on. And the tears came and came and came. Then the day I walked.
We were home just one week. And then we were back. To the 5th floor again, and blood work. Within 20 minutes we were back in the ICU. I gasped, “I didn’t know he was so bad…I would have taken him…I would have taken him…” I could not have known. He is asymptomatic when his sodium drops.
We stayed longer. We moved to the Transitional Care Unit (TCUP) when he was well enough. There we found our new home. The familiarity is good. The relationships are good. That my boy is alive…is good. We stayed five weeks.
We have been in and out ever since. I do not know when or if it will get better. We cannot know that. But what I do know, is that Peter sat up today. Somehow, he is thriving. Somehow, he is doing so well. And when we go home, he will move even faster. Life will continue to move forward. We will come back again. We will leave again.
“For I’se still goin’, honey,
I’se still climbin’,
And life for me ain’t been no crystal stair.” (Langston Hughes’ Mother to Son)