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!