The Line is Blue

Older moms, did you know they now have disposable diapers with a line down the front that turns blue when the diaper’s wet; stays yellow when it’s dry? Pampers. Genius. Our cloth diapers tell me they’re wet when I notice there’s pee on my leg under Finn’s cushioned hiney.

Quick Finn Update:

Diapers have been getting wetter and wetter since Sunday.

Joey took off work yesterday, not feeling so well and to stay home with Finn. I came home to help while two clients canceled. We’ve been cathing him (draining his bladder via tiny tube) every three hours. Thus, my bloodshot eyes and bags underneath to compliment them. I haven’t been this tired since he was three weeks old.

Little man went to daycare today because we both had busy days we couldn’t rearrange. Joey went after staff meeting to cath him and I went during my lunch break. The ladies at daycare said he’s been as happy as ever. They told me a funny story about how he was in a chair opposite a crying newborn and every time the newborn would throw a fit, Finn would belly laugh hysterically. The newborn finally stopped. And when Joey went to pick him up after work, he found him in a crib a foot away from a screaming baby girl, eyes closed tightly, sucking hard on his paci, trying to block out the madness.

The urologist told us to only cath twice a day now that he is voiding more consistently. We want to leave him alone “down there.” So, thanks for your pee prayers. They are felt.

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Pee, Please

Challenges at work and Finn’s impending surgery kept me tossing and turning Thursday night. It was pitch dark when we left the house Friday morning, headed for the operating room at OU Children’s Hospital. When Finn was born, he was unable to stay on his back long enough to get circumcised due to his spinal closure surgery. Once you miss the three week window of time allotted to perform the “clip,” you have to wait until your son is 6-9 months old, and it becomes a slightly more invasive surgery. Spina Bifida also twisted Finn’s penis, so our urologist planned to correct this abnormality as well.

Though he hadn’t eaten since 8:00pm the night before, Finn was alert and happy as usual. Each nurse who made their rounds for surgery prep (and there were many) commented on his infectious joy and the “twinkle in his eye.” This kid is special.

He fell asleep on my lap while we waited; a mommy’s delight.

Our hearts wrenched as the man in scrubs took him away. The sound of ringing monitors and the pungent smell of antibacterial foam were all too familiar and sent us back in time seven months to the NICU. Not fond memories.

Two long hours later, Finn was sent to Recovery while he came out of anesthesia. All went as planned and Finn was “fantastic.” We could go one at a time to visit him. I was first. He was irritable (naturally) and hungry. I rocked him while he guzzled down some apple juice and he quieted while I sang our family songs. Such a brave little man.

Once we returned home, we noticed his diapers were bloody, but not wet. By 8:00pm his tummy was distended and he was in terrible pain. We finally broke down and catheterized him, thankful we had plenty of catheters on hand or we would have had to go to the ER. You can imagine this is not a pleasant procedure anyway but especially not on a raw wee-wee. Cathing continued every three hours through the night and continues presently. The on-call urologist said to give it 3-4 days and if he’s still not peeing on his own, we need to bring him in. Anesthesia can sometimes cause urine retention and with Finn’s already weak-pressure bladder, this is probably the case.

Pray for pee, please.

…Between typing this and publishing it, I gave Finn a bath and removed his bandages. Urine trickled as I toweled off his porcelain skin. He could squirt me in the face for all I care…just pee! Praise God for a wet diaper! Hoping this continues…

Give and Take

Today little man had three big doctor appointments. Cousin Everett from Boston sent him a balloon and flowers to cheer him up about it. He’s so thoughtful.

Here’s what we learned from each appointment:

Orthopedics

  • Feet flexibility has improved since his one month visit
  • Right leg is stronger than the left, including the quadriceps, which will cause muscle imbalance…would be much more encouraging if both were equally strong (Pray for left leg to get stronger!)

    Thunder spirit in the waiting room. You can do it, boys!

  • The doctor explained that Finn would most likely need a brace that extends above the knee on the left leg and an ankle brace on the right leg to begin learning to walk
  • Then he clarified “walking: ” ambling with a sway to and fro due to underdeveloped glute (butt) muscles and hip instability
  • He said most of his SB patients actually prefer a wheelchair even though they can “walk” simply because it attracts less attention. Pragmatically, it gets them from “here” to “there” much easier. Basically we’ll leave it up to Finn if he wants to walk or not and we’ll give him all the tools he needs either way. (Pray for patience and contentment for Joey and I)
  • This is tough for me because it’s not as easy as muscular rehab…I work in a business where if something’s weak, you train it to strengthen it. In Finn’s case, the permanent spinal nerve damage is the main cause of his impediments.
  • Still no foot casting necessary at this point. Sweet.

CT Scan

  • Linda strapped Finn down in a straight-jacket of sorts as the table moved into the machine
  • His eyes crossed as he watched the wheeling, moving parts scanning his brain. He was a champ…the bottle helped!

Neurosurgery

  • Head circumference is down from 99th percentile to 75th! Woohoo! This means the shunt is working. (Pray it continues.)
  • Went over CT scan results: much more fluffy brain matter than when he was born! Better to think with.

    Pic on left is today (more blue stuff=brain matter!) and pic on right is at birth. Wow. Praise God for the shunt.

  • Developmentally doing very well thus far, however…
  • He’s missing (in part or entirely, not clear) the portion of his brain called the corpus callosum. It connects the right and left hemispheres of the brain and facilitates communication between them. This is totally unrelated to Spina Bifida…just another “very rare” congenital birth defect. (Pray for a miracle that this part of his brain “reappears.”)
  • There is a wide spectrum of the effects of its absence. It can be as minor as poor eye/hand coordination, which we already think is an issue for him, or as severe as autism and chronic seizures. (Pray for minor to NO developmental delays and normal brain functioning. No seizures or autism, please.)

Feeling thankful because IT CAN ALWAYS BE WORSE, but also a little bummed out, we went to our favorite place for delicious carbohydrates: Prairie Thunder Baking Co. in Midtown OKC. I don’t even like biscuits and gravy, but these puppies make any bad news just a little bit better.

“He gives and takes away.”(Job 1:21)

For the longest time I saw this verse from one perspective: He gives good, he takes away good–which is bad. But perhaps he gives bad, and takes away bad–which is good. Or maybe he gives good and takes away bad—which are both good. Confused? I think God does all these things. Praying for him to give and take away in Finn’s life.

The Mighty Finn

Three hours behind schedule, the VP shunt surgery is finally finished. Finn has a valve implanted about an inch behind his little perfect ear and an incision next to his belly button where they redirected the brain fluid to his abdomen. It’ll take a few days to get him off pain meds and get to know the un-sedated Finn, but we’re on the road to recovery. The swelling in his head has even begun to slightly subside. He is breathing on his own and recovering like a champ. The neurosurgeon came to our room to give report and even brought us a bit of black “peach fuzz” from his head where they had to shave it. I think (hope) he’ll have black hair like daddy.

Seeing his shunt incision in the recovery room made this all very real. This was not a surgery to repair skin. This was major. Finn now has a permanent synthetic apparatus in his body. This is life-long. Mighty Finn reassured me everything will be okay though, as he squeezed my finger and wouldn’t let go. Melted my heart.

I am discharged tonight and we’ll begin visiting Finn throughout the days. Not sure when they’ll let him come home with us. Cannot wait.

THANK YOU for your prayers. We felt them. Please continue as Finn begins to heal.

To Be Held

Though he’s been poked and prodded and tested and scanned since the moment he was born, today was baby Finn’s first surgery: a major operation to close the lesion in his spine. The neurosurgeon, Dr. Gross, just stopped by our room to give us a report. Operation went smoothly; no surprises and Finn was a brave little man. His lesion was at the L4-L5 level, which means his legs, ankles, and urinary tract will be affected in some form. He’s been urinating on his own, however, so we pray that continues post-surgery. His hips are strong, but there is not much movement/mobility in his lower legs and ankles. Sedated, he’s currently in the recovery room.

The best part of today was just before surgery. Dr. Gross walked over to us and asked if we had held him yet. Pouting, we both responded, “no,” as the NICU will not allow us to hold him for fear that we irritate his spine. She responded by carefully swooping him up and handing him to me. My heart melted as I held my little peanut, kissed his cheek and smelled his sweet skin. He immediately became calm and even smiled. Then it was Joey’s turn. Finn became less of a little stranger and more of our son for those short minutes. What a beautiful gift to hold and be held.