The Difference a Year Makes

Last week marked the one year anniversary of Z's spinal cord surgery. (you can read more about that here) To celebrate, the neurologist ordered a follow-up MRI. We wore the kid out the day before and kept her up late, as requested by the nurse, and tried to feed her a bottle of milk around midnight, which she hilariously refused since all she wanted was to go back to sleep. 

swimsuit | pool float

So, bright and early and with an empty stomach for the bambino, we headed to St. Mary's for the big test.

Last year, our tiny three month old went through the second MRI of her little life (the first was the day after she was born and we, thankfully, we not a part of it) and it was a total effing nightmare. (read more on that here) This time was muuucchh better. Still not the best time I've ever had, but it went pretty well. This time we opted not to sit in the noisy darkened MRI room, and went back to the little exam room and watched the Today show. Time flew by. And when Z woke up from sedation (just in time for Sesame Street), she was right back to her old self, albeit a wee bit drunk. If she was already talking, she'd end up on You Tube, for sure..."Is this real life?" I so wish I had been allowed to have my cell phone so I could video how funny she was acting.

The doctor and nurses warned us that she'd be groggy for the next few hours, so we had planned to snuggle in and watch Frozen--something the Hubs and I were looking forward to since our nerves were shot. No such luck! By the time we got home from the hospital, Zoey was bouncing around-you would never had known what she had just been through.

Fast forward to yesterday--we met with Z's amazing neurologist. Actually, Zoey walked into the office. Kind of a big deal, considering. 

And although we both felt totally confident (I mean, have you seen this kid walk?!), seeing for ourselves that Z's spinal cord was doing as well as we hoped would definitely put our minds at ease. 

I am happy to report that Zoey is beyond awesome...something we all knew, obviously. Without getting all science-y on you guys... there are no signs that her spinal cord has re-tethered. The fatty mass that was hugging the base of her spinal cord (80ish% of which was removed during surgery) has gotten bigger, but only because she has gotten bigger, so no worries there either. And, her spinal cord, which had been stretched longer than normal due to the tethering, has ascended (which sounds bad but is actually really good) up a bit in her back, closer to the spot where it should be, though it will most likely never get to that spot. And that shouldn't be a big deal either as Z grows. 

black & white top - similar here

Looks like we'll have to endure the MRI adventures once a year for a while, just to check in with her growth and progress. The last big hurdle will be potty training, since the nerves that are involved with that whole nightmare process could have been affected. Thankfully, it'll be another year or so before we even have to worry about it. 

So, huge sigh of relief. 

We couldn't have been more pleased with how well Zoey recovered and hit all of her milestones. Not only is she a walking fool, but she dances, jumps, runs, climbs, and throws herself all over the place in typical toddler fashion. Not too shabby. In fact, as I type this post, Z is running back and forth, moving magnets from the kitchen to the family room. 

We are feeling especially blessed.

Seven Days at St. Mary's

It's hard to believe that a little more than two weeks ago, we were sitting in a too-warm waiting room under harsh fluorescent lights, watching daytime TV, and trying to forget that our babe was having spinal cord surgery. It seems like a hundred years ago. I've been trying to write this post for two weeks now, but it's so hard to put the experience into words. I'm not sure how much detail to go into, not even sure I can remember it all. It was a blur and super slo-mo all at the same time.

We spent seven days at St. Mary's Children's Hospital in West Palm, if you count the pre-op visit, which was a nightmare in itself. Z was weighed and measured, had her blood drawn, and was subject to a chest x-ray where she was put in a vertical tube-like contraption with her little arms over her head...our little angel who hates being restrained. It was awful, for her and for us. But at least we got to take her home right after.

Bright and early (maybe not so bright, but definitely early) the next morning, we made our way back down to the hospital for the big day. Super nervous, but trying to hide it for Z's sake. She was chirpy and cheerful, we were on the verge of nervous diarrhea. We were finally called back, and moved from one pre-op room to another, with different nurses in each. All were smitten with Baby Tuna. Obviously. Have you seen her lately? Seriously adorable!

A sign of total comfort. At home moments before heading to the hospital.
At least someone was relaxed!

When we got to the final stop before she was sent off to surgery, the Hubs and I were trying to keep it breezy as Z babbled and played in her little hospital gown. Doctors and nurses were buzzing about, and the energy in the room was very positive. In our little nook of the room, you could cut the tension with a knife. 

I should stop here and tell you that my husband is a major mush ball. He'll kill me for telling the world, but it's one of the things I love most about him. He's also a gold medal worrier. I knew going into this that I had to be the one that was gonna keep it together, and I did, except for the moment when a lovely nurse named MaryAnn carried Z off to surgery. We both lost it. Z looked back at me, not sure of what was happening, why we weren't coming with her, who was this blonde in the blue scrubs? She started with the lip (you know the "lip"...when that bottom lip does it's thing just before the waterworks begin) and I turned into a sobbing blob. A smiley male nurse (I'm guessing he was a nurse, but I'm not really sure, to be honest) rushed over and introduced himself. He was on the surgical team (was his name Kevin? Maybe Keith?) and would take special care of our sweet babe. He even gave each of us a hug. I felt better knowing that someone so kind would be in there with her.

Just before MaryAnn whisked her off to surgery.

We dried ourselves up and retreated to the waiting room to pick up my MIL, then off to the cafeteria to try to eat some breakfast as we waited for my parents to arrive. We eventually made our way to the surgical waiting room with the other families. The room was about 5 degrees too warm, just enough to make you feel a little uncomfortable, and had about 6 too many fluorescent light fixtures. Every so often, the telephone at one end of the room would ring and you could feel the whole room hold its breath. We waited and waited for it to ring for us. When it finally did, the nurse on the other end told us everything was going very well, and the doctors were pleased. Relief! It wasn't as good as seeing/holding my kid, but it would do.

A total of seven hours after MaryAnn walked away with my baby girl, we saw Dr. Patel (the pediatric neurosurgeon) and Dr. Navarro (the plastic surgeon) peek their heads into the room. Both were smiling. The surgery had gone better than expected. Patel and his team were able to remove 80-90% (apparently that's unheard of) of the fatty lipoma that was attached to the base of her spinal cord and Navarro had removed every single one of the hemangiomas (kind of like blood blisters, but not) that had made their home above Z's sacral dimple. And the dimple was gone, too. I could have kissed them both on the mouth! Even Kevin/Keith popped in with his smiley face to let us know what a champ our babe was. We even got another hug! 

I won't go into the minutiae of each day we spent in the hospital, mostly because there was just a lot of standing at the crib side. I can tell you that 6 of the 8 nurses that cared for the babe in PICU and "on the floor," as they call it, were sent from heaven. The other two can go pack sand...they had no business tending to babies, though they were decent nurses in general. For most of our stay in St. Mary's, Z had ten tubes/wires tethering her to machines, bags, and pouches: 3 respiration monitors on her chest and back, a foley catheter, two IV ports in her feet, a node monitoring heart rate and more on her thumb (that glowed like ET's finger), a blood pressure cuff, a drain in her back near the incision site, and an NG tube in her nose (I guess it's technically a feeding tube but it worked backwards to relieve the gas pressure (big shock there) in her belly).  It was a bit much, especially when coupled with the fact that she was stoned on baby doses of morphine, under sedation during her stay in the PICU, and swollen from all of the fluids. Our skinny little widget had some serious thunder thighs!

Once Dr. Patel felt it was OK to take her off sedation and switch from morphine to a Tylenol/Motrin regimen (I think it was at the end of Thursday), we made the move to the Peds floor. Life was a little tougher there because the babe was now awake during her wakeful hours, but with limited mobility, which frustrated her. But we could tell she was so much more comfortable when she started sleeping with her hands up by her ears and chewing on Sophie's face.

I was encouraged by Patel, but terrified, to hold her. At this point she was down to the NG tube, catheter, one IV port, the ET node which was now on her foot, and the drain in her back. And let's not forget the 4 inch incision sprouting out of her butt crack (I did learn that the classy way to say that would be "gluteal fold", but why start with the classiness this late in the game?!) Too many things to worry about. But by her second day in Peds, Patel felt it was important for her recovery, so he scooped her up out of the bed and handed her off. (It should be said here that he is the father of an 8 month old, so he knows what he's doing.) We were both being so careful with the wires, tubes and other whatnots, that we both forgot about the NG tube in her nose (which we both wanted to disappear) and as Patel picked her up out of the crib, it pulled out. Whoopsie! The doctor sheepishly said, "Well, I guess I better go explain that one to the nurse." I, for one, was so happy to have it gone, and had to laugh. Our meticulous neurosurgeon had just pulled a major oops.  It felt so awkward holding her, but so good. too!

Thanks to Instagram filters, you can't see how greasy my hair is!
Z's just happy not to have that tube up her nose anymore! 

After a few more long days and nights in the hospital, a longer than normal stretch without showering on my part (greasiest hair EVER!), and a diet of Frosted Mini Wheats and more Subway than most people eat in a month, we got word that we would be able to take Zoey home.

Waiting for discharge...with Bert and Ernie... and Woobie, too!

Patel came by early Sunday morning and gave the go ahead. All of the remaining monitors and tubes were removed, minus the drain. We had to wait for Navarro to remove that, but he wouldn't be by until after 6pm. That afternoon dragged on (but it gave me the opportunity to race home and finally shower!)! When he finally came, he removed the drain and showed us how to change the dressings. Once the nurse discharged Z, we were free!!!

Heading home!!!

It took some time for all of us to get back on our regular schedule, but I think Baby Tuna was more resilient than the rest of us. We've had excellent check ups with all of her doctors, and the dressings are getting less complicated as she heals. I'm looking forward to normal diaper changes, being able to take her in the pool, and give her a normal bath again. Since we can't submerge the wound in water, it's been sponge baths for two weeks, no fun for Z since she can't splash. Baby Tuna is back to her old self...bouncing in the jumperoo, playing with her feet, and drooling chatting up a storm. Her legs aren't as strong as they were before, but the doctor said they should get back to normal as she heals. (Actually, the nerve sensors that were on her feet during surgery showed that her little monkey feet got stronger once the lipoma was removed.)

A week after spinal cord surgery and this kid hasn't missed a beat!

The prognosis is very good. Z will get periodic check ups with Dr. Patel and MRI's throughout her childhood, and possibly longer. But, she should continue to reach all of her milestones. She's even perfected one since coming home from the hospital...rolling from back to belly! We are so grateful to Z's pediatrician for spotting the sacral dimple on the day she was born, to Dr. Patel for being the awesome doctor and human being that he is, and to Dr. Navarro for masterfully removing the hemangiomas and closing up the incision. We are also grateful to the nurses that cared for Z at St. Mary's, especially Michelle, the PICU night nurse, and Baby Tuna's favorite nurse on the Peds floor, Aja, who was so sweet and wonderful. We are so blessed!

Dr. Neil Patel, Z's neurosurgeon and our hero. The rays of light beaming from his head
are no special effect.. This man is the real deal!

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!