Baby Tuna's Medical Update

A few of you guys have asked about Zoey's medical situation. As most know, she was born with a sacral dimple and a tethered cord. There's a chance that the cord issue may be hereditary, possibly passed down from my side of the gene pool (as far as I know, I don't have it). You can read about her trip to the NICU here.

On Monday, the babe had her second MRI, in preparation for surgery next month. Because her first one was done while she was in the NICU, we were not involved. This one was kind of an awful experience. We weren't able to feed her for six hours before her 7:30am appointment. That meant we had to wake her up at 12:30am and make sure our sleepy babe downed a full bottle. In the end, she went about 10 hours without food... at three months old! Zoey was such a champ. She was chirpy and happy right up to the moment when they started sticking needles in her. 

First, they fed her a pink liquid to help her stay asleep during the MRI. Then, the very sweet nurse went on the hunt for a vein. Zoey's doctor needed a contrast MRI, which meant that some kind of dye needed to be injected. To do this, they had to set up a port, which was impossible because the kid was so dehydrated. She tried both feet and twice in one hand, leaving horrible bruises behind. And while the nurse (whose ass I was ready to beat by this point) was poking and prodding my baby girl, Zoey was screaming her face off while half asleep from the medication. I was bent down, with my face next to hers, humming You Are My Sunshine as the Hubs stroked her sweaty forehead. I'm not sure how either of us kept it together. It was total hell and it felt like it went on for an hour.

Next came the MRI, which is something I've been lucky enough to have never needed in my life. I laid Zoey down on the table and watched as they strapped my precious girl down (perhaps the source of her hatred of swaddling and restraints in the carseat?). The Hubs and I were allowed to sit in the room with her, and the nurse handed us each earplugs before she left. Now, I knew that these things were noisy, but I was not prepared for just how noisy it was. I have sensitive ears, something that's a bit if a joke in my family. Even with the earplugs, there were moments during the hour-long test that I was hurting. I'm still wondering if Zoey had some sort of ear protection...something to find out before the next one. You'd think, with all the technology happening in this world, someone could create a quieter MRI machine. Good lord!

When it was over, the babe slowly woke up and we were able to feed her, and all was right with our little world. Next we headed to the ultrasound lab to have one done of Zoey's hips. On top of everything else, there is also a small chance she could have hip dysplasia, which I didn't even know people could get. None of us really think she has it, but someone in the NICU did and now we have to follow up. We'll get the results on that during her 4 month check up with the pediatrician.

Finally we were done with St. Mary's for the day, but we still had one obstacle to overcome. During the MRI, a horrible gully-washer of a storm had hit. The rain was so heavy, we could hear it hitting the roof with our earplugs in! It hadn't let up by the time we were ready to get the hell out of there, so it made things a bit difficult. Something else that made things difficult, the Hubs had parked in a section of the lot that was at an angle, causing a flash flood under the front half of my car. He ran out in the deluge, climbed in the back and somehow got his 6'4" body into the drivers seat!

This poor kid was zonked after her MRI!

On Tuesday, we met with Zoey's neurosurgeon to review the MRI results. I won't lie, I was secretly hoping that the issue had corrected itself, sparing her from having spinal cord surgery. No such luck. In fact, the problem has grown and developed as Zoey has grown.

For those who are not familiar with a tethered cord, the short and simple explanation is this: the spinal cord extends farther down the spine than it is supposed to, and is abnormally attached to the tissue around the base of the spine. In Zoey's case, there's also a fatty mass that surrounds the base of the cord. Because of all this, the spinal cord can't move as Zoey grows, leading to nerve damage, bowel and bladder problems, and mobility issues. There is a chance that she could grow up and never experience a single problem. In fact, Olympic hurdler LoLo Jones found out that she had a tethered cord a few years ago when she started missing hurdles and later had difficulty walking. She had the surgery and went on to compete in the London games. She didn't medal, but the point is that she competed. And in my opinion, fourth place ain't that bad!

When Zoey has her surgery next month (we're still waiting for it to be scheduled), her pediatric neurosurgeon will also be working with a plastic surgeon. It will be his job to remove the sacral dimple above her butt crack (there really is no classy way of saying that) as he stitches her up, ensuring that she will be bikini ready for the end of summer. 

The prognosis is very good, Zoey's doctors are among the best in the field, and our baby girl is one tough cookie. Apparently, this is more common than I ever knew, as evidenced by the number of you who reached out to tell me that you knew someone whose child had gone through this. Of course, there's a chance that her cord will re-tether as she goes through growth spurts, but she will have periodic MRIs to check on it. We'll cross that bridge when we get to it. 

Don't let my optimism and matter-of-factness fool you...I'm terrified. We both are. But you can't live in the fear. I know that there are so many moms out there, some of you guys even, whose babes have issues that aren't fixable. Zoey's is. And provided that the surgery goes as planned, she will hit all of her milestones, ride a bike, kick a soccer ball, swim, and dance. We have total faith in the doctors and their teams, and in our baby girl, who is 100% healthy in spite of this little blip. (See how I play it down? Coping mechanism.) But even so, we ask that you say a prayer, light a candle, wish on a star, plant a tree, whatever it is you do in this kind of situation. And on my end, I'll keep you posted and promise to continue to bombard you with photos of the Baby Tuna every week, whether you like it or not!