Profile of a Handsome Boy – Part 3

And we’re back with our profile series. The anticipation is just as thrilling as waiting for the next Twilight. Sorry for the delay but we have been very busy with some fun updates coming up very soon. Stay tuned . . .

The Cord (Spine/Neck)

Life is a story and the events need to happen in a particular sequence to lead you down your true path . . .yada, yada, yada. You have heard me say this many times and I will continue saying it because it keeps proving to be right.

Quick reminder: At our Level II 20-week ultrasound the doctor saw a small hole at the base of the spine that was classified as Spina bifida. We prenatally met with the neurosurgeon specializing in Spina bifida where we discussed what that would mean for delivery and immediately after. It was during this meeting she told us JD would be monitored at Prentice until he was stable then transported to the NICU at Children’s Memorial . . . 3 miles north. Check out the post where we go into detail.

 

A few hours post delivery JD was transported to Children’s Memorial Hospital to spend two days preparing for Spina bifida surgery. Yet, when he arrived at Children’s the doctors started to question if he in fact actually had Spina bifidia (check out this post for more information).

It was through the multiple MRIs we received the good news JD did not have a hole in his spine rather a sacral dimple (just another sign and symptom of Wolf-Hirschhorn). This information was shared as I arrived at Children’s for the first time. I was tired, scared, lost in thought and had yet to see JD so it took awhile for the magnitude of this news to sink in. When I was pregnant reading up on Spina Bifida and WHS I would say to Nate “I wish he had Spina bifida OR WHS . . . but  WHS and Spina bifida together is going to be tough. And yet, on Day 3 of life we were once again rerouted onto a brighter path.

I woke up on Wednesday, April 4, 2012 with tears in my eyes scared that my son would be having spine surgery only to go to bed that night with tears in my eyes knowing he was resting comfortably without surgery. My belief in miracles grew a bit stronger that day.

However, the MRI did revealed JD has a misalignment in his cervical spine as well as a tethered cord.

C-Spine – From day 3 of life JD has had a soft collar to help keep his neck align as his bones formed. While it might not look like much the soft collar alone has shown astonishing improvement in a short period of time. 

X-Ray on the left (6 months), MRI in the middle (3 days old), CAT scan on the right (3 months) CAT scan - different views yet the same result outstanding improvement

On the first day I was discharged from the hospital I was able to hold JD in kangaroo skin to skin . . . and that was the last time that was allowed for the next 4 months

First and last skin to skin time while in the hospital - a very happy and tired mommy

In the beginning we started off having to hold JD on a pillow in a very specific alignment. No tummy-time, no skin to skin, no tight snuggles. The nurses would come over ever now and then adjusting his position making sure his collar was correct and his neck was aligned. 

 

Daddy with the pillow hold

After Day 3 it took two months before we truly had the chance to see his neck - the collar needed to be worn 24/7. The first time we took it off I fell in LOVE with his bulldog cheeks and they continue to win me over everyday.

 

First day with the collar (the red on his face is from the tape)

First picture without the collar - Hello Bulldog Cheeks

Same collar 12 months later

 Going from not being able to hold him close to my heart to now being able to throw him over my shoulder as he holds his own head up is my favorite part of watching him grow. His neck strength is inspiring and we have full confidence by Christmas he will be sitting up with little support. Given where he started this is an astounding achievement. 

One year later lookin' tough with bulldog cheeks and no collar

Neurosurgery continues to follow us and the likelihood of neck fusion surgery (fusing together the C1 and C2 vertebrae) continues to diminish. Fusion surgery still remains in the bullpen as a possibility but we are hoping with each therapy session and all of JD’s hard work we don’t have to go to the bullpen (especially if our bullpen is anything like the Cubs).

Tethered Cord – This was first mentioned in the A Delayed Happy Five Months post. A person’s spinal cord is supposed to end at L1/L2 vertebrae but JD’s goes all the way to L4. Technically your spinal cord should free float in your spine but JD’s is held down, or tethered if you will, which can cause restrictions.

Potentially a tethered cord can cause complications with movement of the extremities as well as other parts of the body controlled by the cord. Although, anyone who has seen JD in person knows he has nooooooo problems moving around. Cord surgery has been thrown into the mix of possible surgeries during surgery season for JD. Given his heart is the most important piece we will focus on cardiac surgery then more to the other specialist. Dr. Neurosurgery has once again been bumped from the top of the pyramid.

This brings me back to my original point . . .if that one doctor (the one who walked in the room and said “I guess I am the barer of bad news) had not mentioned the hole from the ultrasound JD would have stayed at Prentice in the NICU with many of his additional complications going unnoticed for the first few weeks. Nothing against the NICU at Northwestern but their job is to grow small babies, an oil change if you will. Yet, Children’s . . .well Children’s does the overall detailed diagnostic check scrubbing through every inch of the car not just changing the oil. Given JD’s complications he would have ended up at Children’s Memorial at some point. Yet, God gave us the clues to ensure we made it to the right place at the right time. While one of the hardest moments was to watch JD being wheeled away, I truly believe JD being transported to Children’s Memorial saved James Douglas’ life.

Tootsies(Clubfoot)

JD’s foot is correcting very nicely. He has no issues with his right foot, which is the clubfoot. But that is not the end of the story. The left foot, feeling left out (pun intended), has caused quite a few problems for JD.

Every classy woman knows when breaking in shoes she will suffer for looking fabulous. It’s natural and part of looking stunning. As JD was breaking in his shoes he too suffered for beauty getting a few blisters around his foot. Most healed yet a very stubborn one on the back of his heal continued to get worse. It finally created a hard callus and that was that.

Months later, JD became very moody while putting on the boots and while waking up in the morning. One night Nate noticed his heel was red and tender but I, being the great mother that I am, brushed it off. In my very flimsy defense, Nate hates the boots so I assumed he was looking for any reason to take them off. Mother knows best and I won that round.

The following morning I took off his boots and saw his heel was swollen, pink, white, and black all around his previous blister area. Please refrain from calling DCFS.  Off to the emergency room we went to ensure it was not infected. Infections cause fevers, fevers cause seizures and at this time he had not been diagnosed with seizures so we needed to stay on top of this one.

After 5 hours in the ER, 6 doctors, 4 nurses, and 1 orthotics guy they told me to go see our boot doctor. Perfect.

Dr. Boots recast his right foot for a few weeks to help the left foot heal. Once we put the boots back on he seemed fine again . . . until 3 days later when the moodiness started again. This time I was mother of the year and let him go without boots for two weeks (shhhhh, don’t tell) until we went back to the doctor.

Good news, his clubfoot is still very flexible so we did not lose ground. We now have a custom-made foot brace for his right foot at night so his left foot can stay free and clear. These don’t hold as well so they normally don’t like to use them but JD’s foot is correcting so nicely that Dr. Boots is okay with this for a few months. We actually think JD likes it more because he can move his feet independently.

For now, JD’s boots will sit on the sideline until we are ready for his next pair, which will be custom-made. Considering I could own two pairs of fabulous shoes with red soles, if ya know what I mean, for the price of these boots I might have to grab the red paint to spice up JD’s footwear. 

Look for wrap-up in Part 4 by the end of the weekend. Until then, enjoy the spring. . . especially our buddies in Minnesota who have enjoyed too much snow this year.

Just two classy boys

The goofball and the scholar