Figuring Out Fall

Last Sunday my husband got up around 3:00 AM to change Nathan’s diaper and realized that it had been dry for six hours. Over the last couple weeks, I noticed that he was retaining fluids for three hours at a time but that was by far the longest he had gone. Since the feeding pump had been putting milk in his tummy since 9:00 PM it was really strange that he still be completely dry. We sat up in bed and had a sleepy debate as to whether or not we should take him down to the ER.

Ten minutes later he wet his diaper and we went back to bed.

The whole experience made me realize even more how my schedule is not my own. This kid surprises us with every corner we turn. Though he’s been very stable for a month now, it suddenly hit me that something could happen that goes straight to the top of the priority list and everything else I was planning to do just gets wiped away.

Tuesday morning, following Labor Day, I began making phone calls to see if we could get in sooner to see urology and figure out what’s going on with his kidneys/bladder. I had to cancel one therapy appointment and move another one. Still, it was lots of juggling for someone who is fairly administratively adept.

We went to the urologist on Wednesday afternoon. They did another kidney ultrasound. Saw the doctor and talked at length only to realize it’s another case of “wait and see.”

Nathan has grade 5 reflux on one kidney (5 is the highest) and grade 4/5 on the other. The doctor is hopeful he’ll outgrow it. Boys sometimes do. Girls rarely do. Thirty percent of cases are genetic and can be found in siblings. He recommended doing an ultrasound on Mac even though he’s never had a UTI. I’m not sure that’s going to do much good because my gut says it’s just related to his syndrome and how slightly askew his little organ systems are. I’ve read these CDCS kids have kidney issues. The doctor didn’t know that. That makes me feel even more intimidated that I’m beginning to know more than the specialists but the NICU staff said that would happen.

Wednesday night around 2:30 AM (everything exciting tends to happen in the middle of the night) I woke up to find Nathan dead asleep but completely soaked. By soaked I mean his jammies, Swaddle Me, sheets, sleep positioner, everything sopped up with lots of liquid. I thought he had wet through his diaper – finally all the built up of urine broke through. When I undid all of his clothing I realized his diaper was bone dry again. Instead, we forgot to close the medicine port on the extension tube and nearly three ounces of milk (read: breast milk that I have been working so hard to produce) leaked everywhere. So yes, you really can cry over spilled milk. And the fact that your freezing cold baby had not eaten in six or so hours.

I’m glad we moved up the urology visit but I can’t say I don’t still obsessively check the strip on his diaper to see if turned blue a million times a day. Until December when, both boys, go in for their ultrasound we’ll just “wait and see.” I will once again try to follow the advice of my favorite NICU nurses to just live one day at a time. I still have no idea how my fall schedule will shape out even though I have lots of plans.

If I can stay in today then this will be a lot easier. Well…maybe not easier but a little less overwhelming.

“The mind of a man plans his way, But The Lord determines his steps.” – Proverbs 16:9

What a cute, little, innocent stinker!








Oh, and between this morning when I wrote this post and now, we’ve managed to leak another couple of ounces in the car because, in a hungry frenzy Nathan kicked off the connecting tube. Lovely. Just lovely.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

#kidneys

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