About 1.5 weeks ago my little bitty baby who’s not really so little bitty anymore.. but she really is because she’s my baby.. underwent back surgery. To be more specific, spinal cord de-tethering surgery. It was one of the most terrifying things I’ve ever done, when I would allow myself to really think about what I was doing to my baby.
Let’s just say, it’s a ginormous weight lifted off of my shoulders that it’s all over, for the most part.
Avery was born with a whole host of complications and/or birth defects, including a missing soft palate in her mouth (cleft palate), feet that had the top 1/3 turned inward (clubbed feet or metatarus adductus), a strong dislike for turning her head to the right (torticollis), which lead to a misshaped head or flat spot (plagiocephaly), as well as an inability to look outward with each eye (bilateral Duane Syndrome), to name a few. And a tethered cord.
Most of these issues are now in process of being corrected: her feet were casted and she now wears special shoes on her feet to keep them corrected, she has a helmet on her head and it’s looking rather rounder and nice, she has physical and occupational therapy so she’s able to move and turn her head and is progressing wonderfully, and her cleft palate surgery is scheduled for June.
And two Fridays ago we had her tethered cord surgery. I can’t even begin to explain how much this little baby girl never ceases to amaze me. She has been such a trooper through all of it.
We arrived at the hospital at 6am to check in to the surgery floor and she, being a creature of habit, didn’t actually become hungry until it was almost 8:00, her usual breakfast time. Despite being up at least two hours earlier than normal. No, instead she was this cute little smiley cuddle that endeared all of the nurses to her because she’s just that sweet.
7:50 was the time they would be taking her back, and it was about 15 min before that that she really decided she was ready for her bottle, which of course she couldn’t have, and started to raise a fuss. I walked up and down the hall, bouncing and patting and shushing, until she fell asleep in my arms. She stayed that way until it was time to depart, and I handed her off to a nurse to carry her into the operating room. She awoke and looked at me with the saddest little face before she was whisked off and I had to go sit in the waiting room for an eternity.
The whole procedure, including anesthesia, prep, operation, and recovery took around three hours. I spent the majority of that time watching tv shows on my tablet to keep my mind from bad thoughts. Unfortunately Eric was at this time at his friend’s funeral so I couldn’t talk to him. When whatever I was watching ended I would get up and go check the screen for the update on where she was, and it just kept saying OR In.
After about two and half hours the neurosurgeon came and pulled me from the waiting room and told me everything went really well and once I was able to relax some we actually chatted a little about everything. So she would need to be completely flat for 24 hours, and restricted movement for 6 weeks, we shouldn’t let her cry or otherwise strain or put undue pressure or stress on her back or spine.
When she left I had to go back into the waiting room and wait some more.
Finally they came and took me to the recovery area so I could be with Avery as she woke up. But she didn’t really wake up, she just slumbered so peacefully. Not even the moans that Aria would emit when she was starting to arouse after her surgery. Avery was just this little angel puff swaddled in hospital blankets and tubes and wires.
A short while later we were taken to her room and there she did finally start to arouse. And what did she do? She started playing. She picked her feet up and examined them, she rolled onto her side to tug on the wires, she yanked on her oxygen tubes. She made me very nervous that she was going to damage herself.
I looked at the nurse and asked, “tell me.. how life threatening is all of this? Like how careful do we need to be and do we need to stop her from moving?”
She looked me straight in the eyes and said very matter of factly, “to be honest, the surgery is where the damage could have been done.. they’re working around nerves and that’s where something could have gone really wrong,” then added more upbeat, “And she made it through that without any complications so the scary part is over!” Nevertheless she checked that Avery’s eyes were dilating normally and that her feet were responsive to being tickled.
Later I looked online for info on the recovery from this surgery and read about moms whose children didn’t move their legs for about a month before they started moving again. How terrible would that have been.. wondering if your previously capable child were now paralyzed.
At some point Avery expressed an interest in being fed and I was given the ok to give her a bottle. I’m sure I sounded like the crazy lady going on and on about burps, but it seemed that no one really understood how important it was that I was going to need to burp her after she had had her bottle.. or else they weren’t entirely sure what we were going to do to remedy the problem. I had been so worried about this going into the surgery, because I know my baby and how much air she takes when drinking and how big her burps are and how loudly she will scream when she has one.. which is much louder than for nearly anything else, including things like blood draws or scratches from her sister. Well after she finished her bottle she fell asleep so it really wasn’t an issue, and I guess I just sounded like a crazy lady.
Avery ended up sleeping a good portion of the first day, and at some point Eric came up to hang out. A student nurse had come in with the regular nurse and ended up hanging around because she was so in love with Avery. She really was, she couldn’t stop talking about how cute and sweet she was, she brought her a mobile for the crib so Avery had something to entrance her (it was little animals that light up and moved around and was very entrancing), so when I said something to Eric about going to get dinner she immediately offered to watch Avery for us while we went.
So we graciously took the opportunity to head towards the cafeteria, but before we even made it to the elevator we walked past an event taking place.
Funny thing, the same event had been taking place when we were in the hospital with Aria. We watched from one of the toy rooms upstairs that looks down on a lobby like area as a musician sang and performed for a group of people who were milling around, drinking beverages and eating snacks and I just assumed it was some sort of fundraiser or something on a Friday night. This time we had to walk right past it and upon reading the signs realized it was for the parents of patients. It was a free event called the Coffee House that they apparently do once a month to allow parents that spend a lot of time in the hospital to get away and relax and have some ‘me’ time. Eric said to me, “you spend a lot of time in the hospital, I think we’re eligible” and really they weren’t turning anyone away so we went in. We had cookies and brownies and other fancy little desserts, and coffee… and they were signing people up for free chair massages, haircuts and manicures. There was seating to sit and relax and watch the musician, who was actually really good. It was so nice. I got a back massage. It was awesome.
So unfortunately we ended up staying away a bit longer than originally planned, and while out Avery became hungry. The student nurse had been present at the previous feeding, but she wasn’t entirely sure how to use Avery’s bottle. She had apparently taken over and hour and half for four ounces, and another nurse was in the process of giving her two more because the student’s shift was over.
But Avery was mad.
The nurse asked me if she was still hungry and my response was, “no, she needs to burp.”
I swear, I was the crazy lady in the room.
I tried rolling her onto her side and patting her, but she just kept screaming.
One of the nurses ended up rolling Avery onto a pillow face down and sat down with the pillowed Avery across her knees and proceeded to pat her gently. She then let me sit and I pounded Avery a little less gently (well clear of her incision) and finally managed to get a procession of itty bitty burps. Finally Avery stopped screaming and we rolled her back into bed.
This whole absolutely flat for 24 hours thing kinda sucked.
Eric finally left and I worked on getting ready for bed. It wasn’t the most peaceful sleep because of everything that goes along with recovery in a hospital, but it was by far one of the most restful hospital stays I’ve had. In the morning they let us sleep in, and Avery didn’t require too much during the night.
Around mid-morning of the next day they said we could now start working on elevating her some, starting with 30 degrees. They elevated the head of the crib a little and Avery did great. I asked for baby food and was brought an assortment of jars.
A little later the nurse said I could pick her up when I was ready, but then left. When I was ready I called for a nurse to show me how to pick her up and the assistant nurse said, “she said you could just pick her up like normal.” I asked, “like… like normal normal? Just… pick her up?” and the assistant hesitated and said, “that’s what she said..”.. she was nervous about it too.
So I did. I picked up my little Avery. And she wrapped her arms around my neck like usual, and it was wonderful. I think I even said how wonderful it was to hold my baby again. The assistant commented on how cute she was and I said I thought so, but that I was probably biased, which made her chuckle.
And then she burped. Three loud long trucker burps. Then she gave me the biggest smile and I told her she probably felt so much better. And I was rewarded with another smile.
The nurse that day would periodically comment on how cute or sweet she was. But at some point she said, “I’m really sorry if I’m overstepping, or if you’re tired of hearing this… but really, she really is the cutest baby.”
I replied coyly, “you say that to all the babies..”
And she said very seriously, “no, I really don’t! She really IS the cutest baby! I don’t ever use this expression, but she’s a doll baby.” So we chatted about how adorbs little Avery was for a little bit, which was music to my ears.
In the early afternoon we were told that she had recovered so very well, the surgery had gone so well, everything was wonderful and we could go home if we wanted, but we didn’t have to if we weren’t ready. After talking it over with Eric I decided it was safe, albeit scary, so at four I told the nurse we were ready and we went through discharge instructions.
But by the time I had packed everything up and taken it out to the car, forgotten to wear my badge so had to recheck in at the front desk before I was allowed back up, and had gotten Avery dressed, she expressed a desire to eat again. So we had to have another bottle or two before we could go, which meant I had to ask for more formula because I had packed everything in the car.. So we didn’t leave until after 6. And on the way home we had to stop and get her prescriptions, so we didn’t actually make it home until after 7pm.
She’s done really well with recovery so far. It’s a little tricky because she has to stay flat-ish or reclined as much as possible, and we can’t work on sitting up or anything that might cause her to strain. So mealtimes are in her bouncer, bottles are in my lap either across a pillow or with her flat against me looking outward so her back is supported. Diaper changes are probably the hardest because we can’t just pick her whole bottom up. You have to roll her side to side to clean and change her, and we have to keep a piece of plastic at the top of her diaper, below her incision, so nothing goes up her back and infects it. I made the mistake one time of lifting her legs a little too high and earned a cry out which made me feel soooo bad. But she really is tolerating it all pretty well and when you roll her to her side she just hangs out there and lets you do what you need to do. Even when I roll her onto her belly she stays put until I finish washing her wound or whatever I’m doing.
Such a sweet little pea.
Her cousin Kayla has nicknamed her Pea because “she’s so small.” Aria was Baby Owl, Avery is Pea. 🙂
We go for our post-opp followup on Friday and hopefully lose some of the restrictions. I know the poor kid is bored to tears. She rolls onto her sides to sleep now, which is a positive, and she plays on her sides. But she has to spend so much time lying on the floor that she’s run out of stimulation (the playmat and plethora of toys can only entertain for so long) and will do things like just rhythmically kick anything near her that makes noise (like first thing in the morning she’ll just sit there and kick the crib until I come get her. No crying, just ‘thump.. thump.. thump.. thump..’). Or our favorite, she’s figured out she can make a fist and knock on her helmet.
Poor baby, she’s not used to just sitting around not working on anything or going somewhere to be examined. This quiet life just isn’t her 🙂
But oh my goodness how wonderful that the scariest part is all over, we’re healing and getting better and it’s one thing that isn’t going to jeopardize her future because now she can grow without damage just being internally wrecked on her poor little body. Thank you God for continuing to heal my little blessing!
(I ghetto rigged toys to her crib so she’d have something to entertain herself)