11/20/15

Medical milestones

Eloise just had her 6 month assessment with her occupational therapist, and she did not meet any of the goals we set 6 months ago. They were lofty goals, but did not seem unattainable, like she would orally eat 25% of her nutritional daily intake. Yeah, she is not even close to that one. She might put food in her mouth, and maybe swallow, but she usually gags on it, or the food gets lodged in her pouch and she coughs it out. Her esophagus is pretty lousy. She gets one initial swallow, then she has the big, floppy pouch, and then a whole lot of scar tissue, and then a narrow distill section tied into a Nissen fundoplication. Its a wonder anything gets to her stomach through it.

I work so hard with her every day. I try new ideas, new foods, old favorites, and clean up a lot of messes. Its hard not to become discouraged, especially because doctors and nurses in the NICU would casually say things like, "Don't worry - these babies pick it up quickly. 18-month-old so-and-so just had their G-tube taken out." Maybe babies who did not have a 4 vertebral body gap with their esophageal atresia, or babies whose repair did not dehyst, resulting in a life-threatening infection lasting weeks and weeks, and three chest tubes. Maybe the luckier kids.

I frequently have nightmares of Primary's, where Eloise has died or is still suffering, and I startle awake, panting in a cold sweat. Then I go upstairs and check on her, her Joey pump trickling food into her stomach via her G-tube, and she is still breathing.

I can't help reflecting on the decisions I made for her when she was born. It doesn't help to wonder about the path not taken, but its hard not to when I am responsible for this little child's quality of life. I wonder if I had chosen a spit fistula right after she was born, and a gastric imposition later, if she would be doing better now. If I could have avoided heartbreak, or if she possibly would not have laryngospasms now. I have had to resuscitate her more times than I can remember, and the worst things about those blue spells is that there just isn't much I can do. Her airway is shut tight. The best I can do is try to relax those muscles, and I've come up with lots of way to do it. It requires quick thinking and fast action, but it still makes adrenaline race through my body.

The worst part for me is that I don't feel like God has a plan for me anymore, or if he did, it was derailed somewhere. Because being in the NICU for nearly 8 months, and my child coming so close to death so many times, has changed me forever, and I'm not sure if its for the better. I mean, the experience has made me feel pretty fearless. I'm unfailingly patient and kind, and I'm giving everything to my children. But isn't it one of those promises that if you give yourself up to service, and 'lose' yourself, you're supposed to feel fulfilled?

I don't know. This is just another 6 month milestone for Eloise, and she is improving in other areas. She is speaking and communicating as well as any other 2-year-old, which is cool. She's a smart little girl. Gross and fine motor skills are coming along, but still slow going. Josephine, Amelia and Hazel are growing beautifully, learning so much, and I am seeing the kindness and goodness in their souls shine through everyday.

I needed to acknowledge this milestone and the goals not met, because its time to keep going. Let it go, have more patience, clean up more messes, and remember to love.

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