Scared the crap outta me. I knew they were necessary surgeries. I mean, Jackson had an opening along his spine for pete’s sake. I knew they had to go in and close it up, but to watch your two-day-old son being wheeled into surgery really does a number on you. I thought I was going to be okay with it, strong enough to make it through without crying because I was very confident in Dr. Silberstein. He is highly recommended. But the longer we waited for Jax to go in, the more I thought about it all. By the time they took him away, I was a blubbery mess. All I wanted to do was go back to my room (as I was still admitted) and cry. And I did.
Jackson’s lesion was in the L5 region.
When he was born he had to wear a “plastic baggie” around his lower half to protect from infection.
He was born on 5/25/11 at 6:30pm and had his lesion closure surgery the morning of 5/27/11. He made it through the surgery with no complications. They were able to make the repair and he recovered very well. They had warned us that he might still be ventilated when we saw him post-op, but by the time he was back in the NICU he was breathing on his own. Such a tough little guy!
Right before Jax went into surgery:
Post Surgery:
He had to sleep on his stomach until after the surgery and then he had to sleep on his side until he left the hospital. Has anyone ever tried to change a diaper with a little one on their side? Not easy. Then factor in all of the IVs and monitoring lines and the infamous “mud flap” and it’s REALLY not easy. What’s a “mud flap” you ask? Well, because Jackson’s lesion was so far down on his spine, it was really close to his little baby butt. Obviously, we don’t want anything from his little butt to get near his incision and cause an infection. Hence, the “mud flap” – essentially a piece of plastic taped between the incision and his butt to prevent anything from getting where it wasn’t supposed to be. Let me tell you….the “mud flap” was a pain in the butt! <-- clever, huh? I was so happy to see it go (several weeks later).
For his one-week birthday, the hospital gave us the best gift of all…discharge papers!!! We were able to take the little guy home after only one week of being in the hospital. We were told to expect 10 to 14 days, so we were very excited when we were able to spring him from baby jail (our affectionate term for the NICU) after only 7 days.
He did have to go back for a return “sentence” to have his shunt surgery, but I will save that for another post.
Another area of concern that we are keeping an eye on is his bladder/bowel function. As of right now, he doesn't need to be catheterized because he is able to drain his bladder. What we don't know yet is whether or not he will be able to control it when he gets older, so it's not something we really need to worry about until he's of potty-training age or if all of the sudden he's not draining his bladder. They saw a slight kidney reflux (urine going back up from the bladder into the kidneys) when he was born so he has been on a preventative antibiotic since he was discharged from the hospital. When he goes back to the urologist in October they will do another renal ultrasound and see if there is still any reflux. Luckily the stuff doesn't taste that bad and he doesn't give us any problems taking it, which is a good thing since he has to have it twice a day.
As of right now, his back is all healed up. He has great leg movement and some strong little thigh muscles. The doctors seem fairly confident that he will be able to walk, but mostly likely it will be with some assistance (braces, crutches, etc.). However, it's still a wait-and-see-thing to be entirely sure. He's getting OT and PT services to help with muscle stretching and strengthening as well as assistance with gross and fine motor development skills. He's slightly delayed with his neck control and tracking, but they aren't overly concerned at this point. He's has gone through two surgeries and was still recovering from the shunt surgery when he had his evaluation.
Our little guy is one tough dude! He's a great, happy baby and we are so lucky to have him in our lives. He is perfect! :)
