Thursday, July 25, 2013

Month Five Update


The last month has been packed full of...experience, I guess I'll call it. So much that I'm a week late in posting this. And in spite off all the drama, Baby Tuna just insists on growing and changing every day. No pause button here.

This month, the little wiggleworm really made me work for the monthly chalkboard shot.  I took ten shots before I finally gave up. I made a total jackass out of myself just trying to get her to look at the camera. You can see how successful I was. If she wasn't trying to roll or play with her feet, then it was Scout walking around the room that was distracting her. I have a feeling that this is how it's gonna be from now on.



Normally, there wouldn't be any good stats at 5 months, but with all of the doctors appointments following her surgery (three in one week!), Z was weighed and measured many, many times. Each visit was a little different, but the averages were as follows:
Weight: 14 pounds (she actually dropped a few ounces after surgery, but is back up to 14 now)
Height: 24 3/4 inches, all in the legs!
Sizes: Would you believe this kid is still wearing size one diapers and some 3 month/0-3 month clothes?! She is also in some of the 3-6 month outfits, but I can't believe how much of her old stuff still fits! In fact, when people meet her for the first time, they always comment on how much smaller she is than they expected.


Loves:
Scratching her nails on different textures, especially the sofa cushions and pillows, when she's being burped.
Z loves putting EVERYTHING in her mouth, and when she's really getting into it, she does a kamikaze scream as she attacks. It's hysterical!


She also loves flying (being lifted over our heads like Super Baby), blowing raspberries (so much that she often gets a drool bubble beard), squealing and screeching, Sophie the giraffe, Abby Cadabby, and her puppy Scout.



Hates:
I'm afraid that Baby Tuna's future as the face of Baby Gap may never come to be because this kid hates getting dressed. Total meltdown every time. Until about a week ago, diaper changes were also a total nightmare, but that's only because of all that has to be done each time when it comes to the dressing on her incision. Now that she's almost 100% healed, and the dressing has gotten less complicated, diaper changes are almost back to normal.

Diet: After a string of super gassy nights, we switched formulas...again. Things have improved for now. I find it remarkable how such a tiny little person can be such a gas bag. We also started oatmeal about two weeks ago. I'm not sure how much is actually making it into the belly, but Z seems to love it. She "mm-mm-mms" and leans towards the spoon, even tries to grab at the spoon and bowl. And the mess is a-mazing! I'm weirdly excited to start her on purees, and I'm looking forward to making some of the baby food myself. But we're gonna give the oatmeal another week or two to really take before we start that adventure.

That was her first bite of oatmeal. Since then, Z's gotten a little more "enthusiastic" with her eating...

Yep. Blowing raspberries with a mouthful of oatmeal. Keepin' it classy.
Sleep: Before our beach vacay, Baby Tuna usually went down around 8, after her bottle and Goodnight Moon. She'd sleep until about 3:30am, drowsily eat about 4 oz, and seemed to settle right back to sleep. Notice I said "seemed." Right around the time I'd get myself comfortable and begin drifting off, the little booger would start moving around, grunting and groaning, trying to pass all the gas that had built up inside her. Sometimes she'd wake herself up, sometimes she'd just wake us up (she still sleeps in her pack n play in our room, but we're hoping to move her to her crib soon). So around 5:30am, after we'd had enough, I'd put her in bed with us and she'd sleep soundly until about 7:30.  Then we went on vacation and she slept like a champ. We weren't sure if it was the switch in formula, the oatmeal (everyone says it helps kiddos sleep through the night), or the fresh salt air, but all three of us got some good sleep...until we came home. Now she has given up on sleep (especially naps), but technically that was after she turned 5 months, so I'll just have to post about it then. Hopefully her new lack-of-sleep pattern will have fixed itself buy then.

Milestones:
Rolling, Rotating, and Scootching Backwards: Every time I put the babe down on her back, she immediately rolls onto her belly. Then she starts rotating like the hands on a clock. She grabs a fist-full of the rug or her play mat and starts turning. She also just started scootching herself backwards, which seems easier than moving forward. I think if I put her down on the tile, she could really get somewhere. If she has something to push off of, Baby Tuna will also army crawl herself forward. But without my leg or the coffee table to get her going, she gets so frustrated. It's like her mind knows it's possible, but she just can't get her body to cooperate.

Rolled herself under the dresser. 
Sitting Up Unassisted for Longer Periods: Z is this close to sitting up for real.



Responding to Her Name: This is a big one. She just started turning her head when you say her name. It's kind of awesome!

Eating Her Feet: Apparently they're delicious! The babe is ob-sessed with her feet these days. Even when I put her down to sleep, she's holding on to her toes.

Such fierce determination. 
There is so much info out there, and all of it says something different. Why not ask the real experts! So, as we get closer to feeding this hungry little hippo "people food", we thought we'd ask...Which fruit or vegetables did you feed your little ones first?


Monday, July 22, 2013

Vacay!!!!



This week, we took a much-needed (and rare) vacation. After all of the stress from the babe's surgery and work stress for the Hubs, we couldn't wait to spend a few days chillin' at the beach. So what if we live a mile or so from the beach...we seriously needed a change in venue. So, after dropping off the pup at the in-laws (and enjoying a sushi lunch with my BFF), we headed north to Crescent Beach.


Even though we arrived in the evening, we couldn't wait to throw Z in the baby bjorn and hit the beach.




She has always loved feeling the wind in her hair, and what better place for that than the beach?!


This was her very first beachy experience, and she still isn't 100% sold on the idea. Over the next few days, the Hubs and I kept bringing her down to the water, hoping she would suddenly L-O-V-E the water. Not yet. Maybe next time. Having grown up at the beach, I'm hoping she will become a beach baby, too.
That's my first visit to the beach...about 8 months old, I think.


 For now though, Z's still a little timid. And because we still can't submerge her back in water, we had to keep it to toes only. In fact, we spent most of our time on the beach chillin' in our super awesome beach tent, (find one here) enjoying the people-watching and salt air. 


Z and Sophie taking their afternoon nap on the beach.


Unfortunately, the weather was a little bit yuck, so we didn't get as much beach time as we had hoped, especially in the evenings, which is the BEST time to be on the beach this time of year. But that gave Zoey some time with her cousins, Graelyn (age 3) and Elcie (15 months) who were super cute with her. I'm totally kicking myself for not getting any pics of those cuties!

The Hubs and I have promised each other that we will do our best to spend more time beaching it when we're home. I'm determined to turn Z into a beach bunny.



Thursday, July 11, 2013

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!

Thursday, July 4, 2013

Happy Fourth of July!!!



Hope everyone is having a wonderful Fourth, celebrating with friends and family! BBQs, pool parties, a day out on the boat...whatever you do to wish the USA a happy birthday. I had all intentions of Pinterest-ing the crap outta this holiday, I didn't really put together how close after Z's surgery it fell. After a very long and stressful ten days, we are keeping it pretty simple this year.

With this being one of the Hubs's busiest days at work, Zo, Scout, and I have been chillin' at home waiting for the big guy to get here. Instead of getting in some beach time, I've been watching Real Housewives of New Jersey on the DVR while Baby Tuna naps. (That's right! I DVR it! Don't judge...you know you love it, too!) But, you better believe we will be heading to the little bridge around the corner later tonite to watch the rich folks launch fireworks out over the river!! Fireworks are a must on the Fourth!

It's hard to believe that last 4th of July we were sharing some pretty big news with our families...



and now we have this little cutie!!



Last year we sat on the bridge, watching the fireworks, talking about bringing our babe to see them next year. And tonite, we will cross our fingers that it doesn't rain, brave the mosquitoes and that lovely Florida humidity, and take our new little family to see the show. What a difference a year makes!

Happy Fourth of July!!!


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