In the days and weeks after Felix’s diagnosis, I lost my desire to eat. Food just had no appeal. I remember thinking, Why bother eating. My life is over.
It’s been almost six months. We’ve come a long way.
To make note of our progress, Ben and I often remind each other of what horrors we’ve been through.
Remember when Felix used to projectile vomit after almost every feed? [Now he hasn’t thrown up a single time in months.]
Remember when he was hooked up to oxygen, an IV pump, and the monitor, so we could hardly hold him? How he used to lay in his hospital bed for hours and hours? [Now he’s just hooked up to a portable IV pump, which we can carry all over the room with us. He can roll around on the floor and sit in his Exersaucer . . . he can do all the things normal babies can do. Except leave the room.]
Remember when we tried tirelessly to feed him every three hours, day after day, and we could hardly get him to drink 1mL? And how we celebrated when he finally drank 20mL in one sitting? [Now he routinely drinks 100-120mL at every feed, and can go days without the feeding tube. He eagerly takes the bottle when he’s hungry.]
Remember when we were so worried because he wouldn’t look us in the eyes and still hadn’t smiled at almost four months? [Now he smiles almost every time we look at him. He’s a very smiley, interactive baby. He smiles the most at Lydia.]
Remember when we found out he had CMV and we thought he was going to die in the next couple of days? [Now his CMV levels are at 1% of what they were, and he is very much alive.]
We’ve come so very, very far. He’s growing and developing and bringing us so much joy.
We have a long way to go, but we do so much better when we glance backward at the awful place we’ve come from.
Turns out I still have lots to live for.
(Including this beauty:)