Last night I was attempting to manage both girls while Eric was down for the count with some illness, and I told Aria I was putting Avery to bed and to stay downstairs. She was good at first but managed to find her way onto my lap when Avery and I had reached the storytime part of the routine.
We read a few books then I told her I was going to give Avery her bottle and she needed quiet to settle down. So Aria very reluctantly left, but only managed to go over to our bedroom and I could hear her saying in her highest, most motherly voice, “daddy sick?? Sick daddy?”
I set Avery on the floor and left her lying next to her crib still drinking her bottle (sippy cup). The floor is safer than the chair or changing table now that she rolls, and she freaks out if I put her in her crib before we’re done with the entire bedtime ritual.
I decided to go ahead and start Aria’s bathtime so that would be underway and it would keep her occupied. Once she was in I went back to finish feeding Avery, and the little doll was lying on her side, curled up in a little ball next to the crib, assuming that this must be where she was going to sleep tonight. Granted, her rug is super plush and soft, but still. That made me feel so bad that she thought she was going to sleep there. 😦
Then tonight I had to set her down on her floor again to get her a refill on formula. She was beyond mad because she was still hungry on top of being tired since it was way past her bedtime. So as I was in the bathroom preparing another bottle I was watching her in her room, watching me and squirming and struggling and throwing a full blown tantrum from her belly, up on her elbows.
And it gave me a terrible idea.
She is 10 months and still not crawling. Yes, she’s had more setbacks than most babies will ever have to endure, from having her legs casted, to having back surgery, to just having systems not all functioning up to par… but since the tethered cord release she has no physical reasons why she shouldn’t be able to crawl, so I turned into PT mommy. The mommy I usually struggle with and instead cave to her pitiful sobs when she struggles so hard and just can’t manage.
I put her bottle down on the floor…just out of her reach.
It felt awful. The whole time she was reaching and writhing and stretching I was both cheering her on and apologizing profusely. My heart broke at least 50 times during those 30 seconds.
She tried so hard. She squirmed and pushed and managed to get close enough to knock it over, and that was about all I could take. I tried setting it back up, but when she tried again and couldn’t grab it she buried her face in her carpet and cried and I picked her up, snuggled her close with her bottle, and told her how very sorry I was.
But don’t you worry. After she finished her bottle she lie there for a second all content with her full sleepy belly, sighed a big sigh, then turned and looked at me with her big beautiful eyes. She cooed once at me as she reached out her little hand and grabbed my nose. Then squeezed it with her fingernails digging in and tried to rip it off my face.
Oh my little baby girl that puts me through emotional acrobatics. I love that little squishy baby so much, and she’s just so stinkin’ cute I just have to absorb her cuddles into me.
Ok, that’s out of the way.
Ok now really.This last week was a good week. We learned some new news, but pretty much all positive.
We first visited the hospital’s NICU developmental program, who wants to follow Avery to track how she’s developing, and whom at first I was somewhat hesitant to visit because we are already visiting specialists for everything and it seemed a little redundant and like a potential waste of time. That being said, this was only the second appointment, the first having been at 3 months when I first learned about her chromosomal abnormality, so I did kind of have a bitter taste from that experience. But we went anyway, with the intention of trying again and if it wasn’t helpful, then I just wouldn’t schedule a follow-up. Well I’m glad we went. There were three ladies, one who played with Avery, one who sat and took notes, and one who sat next to me and asked a bunch of questions as well as narrated what the one who was playing with Avery was doing. They put her in a highchair and gave her different objects, like a ring with a string attached. The narrating lady explained, “she’ll put the ring out of her reach and see if Avery can figure out that she can use the string to pull it closer.. see, there she figured it out. This is a problem solving skill and is part of a next step ability, a skill you would need when driving, or when they figure out they can push a chair up to the sink.” Oh great. Another child that can push furniture around and get into things, just what I need!
They kept gushing over how pleasant she was and how sweet and adorable. I’m pretty used that that kind of talk and I tend to assume people say that to all the cute little babies, but the one who was playing with her said so many times that I actually lost track, “why can’t all my patients be this good!” They asked me if she’s always this easy-going and I replied that she was, unless she was hungry or sleepy (which when I told her pappy he said it with me verbatim in stereo when I was telling him the story). They noted that when she did something they asked that she looked for approval with a big smile, and it made me think about how we’ve been working on different skills and how when she does them we (PT, OT, grandparents, myself) all make a big deal with lots of applause. They asked about her motor skills and I did warn them that she might give heck if they put her into a crawl, so they saved that for the very end. And she did. She was so sweet and complacent the whole time, and sure enough, when they tried to force her onto her hands and knees she raised heck, but stopped the minute they put her back into a sit.
Because her back surgery caused her to be immobile and basically stuck on her back with little to no stimulation to her gross motor skills for 7 weeks, I joke that her 9mo adjusted age is 7 months. I told them that too, because I know that she’s doing roughly what Aria was doing at 7 months and that she’s a little delayed on getting to a sitting up position on her own as well as working on crawling.
Well sure enough, she scored at 7 months on her gross motor skills. But she scored above her age on her fine motor skills, and at or above her age on cognitive abilities! So basically, when she couldn’t move around much, she focused her efforts elsewhere 🙂 She’s not a lazy one, that little tot! They think she’s doing wonderfully and they had no concerns about her mental capacity. They do want to continue following her for her vision, as she seems to have some strange tendencies, like taking a vision break and looking over your shoulder or at your forehead, or tilting her head back to look at some things, which in all honesty I’m so glad someone else observed because I often feel like I’m the crazy one when I bring up quirks of hers and I get brushed off. It seems like some of her uniqueness is either out of everyone’s specialty or unexplainable.
So yeah, really glad we went, they saw all the things I and PT/OT see, I’m not crazy, and my baby is on track to being a normal healthy baby girl (and the cutest!).
Next we went and had her head scanned for her plagiocephaly (flat spot) and they said she could go without the helmet during the day but should keep it on at night for another four weeks. Yay for helmetless baby girl!
After that we went and saw the Cleft Palate folks and prepared for the surgery coming up in June. It was pretty straigtforward, and the doctor explained the risks and whatnot, and said, “less than 1% in my hands” which sounded both odd and comforting to me. Typical recovery is 2 nights in the hospital, but if she’s doing well the doctor said we might be able to be discharged after the first night, but my mother-in-law and I agreed that it would probably be best to just stay so that Avery can focus on recovering and not trying to keep Aria from jamming things in her mouth. Which she does, like play food. Plus Avery will be restrained to keep her from putting things in her mouth. Upon reviewing the appointment summaries on our Children’s account online, I found that the surgeon had left her review of the appointment, including my consent and her evaluation of Avery, which included, “On exam Avery is an adorable, alert, interactive 9-month-old female in no apparent distress. She is well cared for and well groomed.” 🙂
Last was ENT and after the doctor asked about her past Audiology appointments and based on his finding fluid in her ears that day, he recommended we move forward with putting tubes in her ears when she had the cleft surgery. So backing up a second: we’ve seen Audiology twice, but the first one was kind of a loss because her ear drums weren’t moving and she wasn’t responding to the tests consistently. So we went back in April and while her left eardrum didn’t move properly, she did hear mostly normally out of that ear, but her right ear drum was moving but she failed all of the hearing tests on that side and the audiologist said it appears she has hearing loss. But she did recommend that at the very least we repeat testing several more times with different audiologists to get the most accurate measurements, and ideally we would have an ABR test, which can only be administered while she’s sedated but would be the most accurate as it would actually measure brain activity so we’d know whether the brain could hear the noises or not, instead of just measuring Avery’s reactions. Back to the present: While talking to the ENT doctor he explained we couldn’t coordinate the ABR with the two surgeries (cleft palate and tubes in the ears) and I gave my hesitations about having her sedated again later, as it would be so many times (with these surgeries we’ll be at three in less than a year 😦 ). BUT, he said that even though the last audiology appt showed her right ear as being healthy but hearing loss, it could very well be that she did in fact have fluid in there and it may be why she couldn’t hear. SO, the tubes might actually improve her hearing on that side and she may not have the hearing loss.. or at least not as bad as we thought! After learning this Eric and I discussed waiting to schedule the ABR until we let the tubes work and follow up with Audiology again and see what we get. I would feel much better about that.
So that was one day, then another day we went to Orthopedics and learned a lot more! So her scoliosis is due to the plates between her vertebrae growing at odd angles instead of square/rectangular shapes. Its based on the cells growth and I’m not 100% sure I understood how that all works or how it would be corrected if it continues to grow wonky, but based on her last x-ray and this one it had not changed, and currently the scoliosis is very mild and he would be perfectly happy with her in 10 years if she continued growing the way she is now. He explained why, from his perspective, it was so important that we had the tethered cord release. From what I had understood, it was more about the future potential damage that it could do as it pulled and stretched where it shouldn’t, but from his perspective it was causing her nerves to not communicate with her body the way it should. So it impacted her scoliosis, her clubbed feet, her hips not moving correctly.. and now corrected it will take time for it to communicate properly so her body has some catching up to do. Wow! He couldn’t explain why her hips won’t abduct out flat the way they should, but said that might correct now. He kept using the words uniquely made, and God’s design when talking about her, like her extra rib that is fused with another rib. I brought Denise, my mother-in-law, with me to absorb whatever he might tell us because I was prepared for it to be a lot (which it was), and she brought up how Avery can be sitting there and reaching for something way out in front of her and her nose will pretty much touch the floor as she stretches forward. I hadn’t thought anything of it because babies tend to be flexible, but he actually explained that she has extra laxity in her joints. This means she will be more flexible than most, and may very well be a contortionist when she figures out how to move her body, and it will both be blessing as well as problematic as she’ll be more likely to dislocate joints. Speaking of which, she doesn’t show any signs of hip displaysia which everyone’s been watching for. He said her legs and feet looked beautiful, and he recommended we leave the special shoes on for another year to help them set and allow the muscles in her feet adjust but we could also swap out for regular shoes on the wrong feet. Otherwise he said she has a great structure and he had every belief she was going to be able to walk, run, jump, climb and do whatever she wanted and otherwise be a normal little girl!
So. This week. My baby is going to be ok. Normal. Uniquely made but capable of being a normal little girl. That’s all we really wanted.
And it finally sank in that God really does got this. He gave me her lullaby when we were in the NICU, before we ever learned all she’d undergo or how intense the first year of her life would be, or even before we knew she didn’t have calcifications in her brain.
My little Avery
just so small and sweet
you are so dear to me
my precious Avery
You will overcome
all that was undone,
And may the Lord be true
and bring new faith through you
He’s done exactly as I asked and he told me through song that He would. She’ll always have little tale-tale signs of her unique makeup, like her eyes and the one crease on her left hand, but maybe those are so she can share the story of how God healed her and made her whole so that she can plant many many seeds of faith for Him.
So now my emotions are just coming to terms with looking at Avery as “normal” and not thinking of her as special. She’s been so special for such a long time now, and has had to be treated as delicate, that it’s hard, but I don’t want to set her back or expect less of her or overcompensate for her when she has every possibility of doing more than I ever imagined she’d be able to do. So the new normal is thinking of my baby as a perfectly normal baby girl, like most parents expect their babies to be, with just a little bit of an interesting history behind her 🙂
This little girl is trying so hard to become mobile. She rolls around and then checks out her surroundings.
Avery playing the piano: (about half way through the video Aria takes the phone off of me, so stop watching if you get motion sickness!)
I just love my babies. When singing lullabies to them sometimes I’ll sing “You are my sunshine” but instead of “my only sunshine” I say, “one of my sunshines” because it just wouldn’t be true! In my world there is more than one sun. And they’re so sparkly and girly, and one has little bitty curls.
Anyway, my girls confound me at times. Aria can spout off any rule she’s ever been told while deliberately disobeying it at the same time. I watched her in the baby monitor one night as she leaned on the edge of her bed to reach the light and said, “no Aria, leave lights off or mommy will take out the lightbulbs” as she turned it on. “Turn the lights off, Aria.” “Lay down, Aria” as she sits there fluffing her blanket. At daycare she apparently sits on the potty and says, “no sticker if no pee on the potty,” which amuses her daycare teacher. She is constantly rattling off things she’s been told.
She had Eric and I in stitches one night, even though she just would NOT go to bed. I had put her back in bed countless times, had tried completely ignoring her but she would just come out of her room, I tried closing the door but she can open it now, I tried threatening her with spankings but she is very clever and manages to do the exact bare minimum of what I ask to avoid it (like sitting on the edge of her bed so she’s technically “in bed”).. Finally I just gave up. She came in to our room and crawled in to bed next to me and I just rolled over with a “whatever” and tried to tune out her babbling. She kept sitting up to do something or other and I was about to leave her to torment Eric alone and sleep on the couch when she sat up and said, “mommy, put Aria to bed” and climbed down and went to her room. “Come on mommy!” So I followed my very-awake-at-11:30pm-child to her room and tucked her in to her bed for the umpteenth time. And left the baby gate open because Eric and I agreed it did absolutely nothing anyway.
The end of the world happened. Just as I was crawling back in to bed we hear her yelling, “Mommy! Close the gate!” I grab the baby monitor and Eric and I watch as she stands in front of the baby gate which is mostly closed, just not latched, as she cries and screams about how her gate is open. Mind you, she can close the gate herself. She does it all the time. It is completely within the realm of her capabilities. But instead she stood there with her blanket around her shoulders, crying at the top of her lungs “mommy close the gate!” over and over again. Eric and l looked at each other like she was insane.. which she clearly is. Eventually it became clear she wasn’t going to stop freaking out over the gate so I went and closed it. And of course then she crawled over it. *sigh* We were wondering what would happen if the baby gate were to disappear completely.
Speaking of OCD, I made it a goal of mine to make ties for her curtains but I’ve only managed to make one so far. I tied her curtain back and she had a conniption fit. She literally cried and freaked out over it and threw it away she was so upset. So it hasn’t gone back up but Eric suggested I keep putting it back until she gets used to it. I figure I will once I get the other ones made. Maybe then it will have more order and she’ll be ok with it.
Avery is developing her own personality as well. She thrives on routine but isn’t OCD like Aria. It’s amazing that, when I watch her, I can lay her on the blanket on the floor with a blanket over her when it’s naptime, and she’ll just go to sleep. Sometimes it takes longer than others, sometimes she has to babble a bit first, or even cry for a brief moment just as she’s dropping off, but she always takes a nap eventually. And I don’t mean eventually like, hours waiting for it to happen.. more like minutes. The longest was probably 20 minutes of her playing on the floor before she went. She also tells me when it’s time for bed. She’ll be super sweet and playful and happy and all of a sudden she looks at me all devastated and starts fussing a little and I say, “ok we can go to bed” and she’s calm as long as she sees that I’m starting to get ready to put her bed. Even if it’s past her bedtime, once she knows we’re headed upstairs soon, she’ll chill. She sometimes cries out when she sees her bottle, but she still waits patiently for it. We’ll go upstairs, change her diaper and clothes, put her shoes and helmet back on, we’ll even read some books and the bottle will be sitting right there next to us, and she’s totally cool. But once we turn out the light she starts freaking out. She gets squirmy when I pick up that bottle and everything is flailing until she can snatch the bottle from my hand and jam it in her face. Then she’s calm and quiet and content again. Even if she’s still awake when the bottle empties, she’ll usually sit there in my lap all quiet until I flip her over and snuggle her. Or she’ll take it upon herself to try to flip over and snuggle. She’s an excellent snuggle. Probably the best snuggler that ever lived. Ever.
So she doesn’t have a soft palate in the roof of her mouth. And yet somehow she makes clicking noises. Sometimes I’ll be holding her in my lap and she’ll be sitting there contemplating life and I’ll hear the noises that you can make when you create suction in your mouth. I’ll look at her and say, “Avery! How did you do that?” and she’ll just look at me all nonchalant like, “I just do. Why do you ask?” Then I’ll do it to her and she’ll smile and find me amusing, but still won’t explain how she does it. She’s mysterious like that, keeping her secrets secret. She can also suck down a bottle in nothing flat when she’s feeling ravenous. She can hold her own bottle now and I’ve even seen her squeeze the nipple part to refill it when it’s empty if it’s not refilling fast enough on its own involved (special bottle, one-way valve that creates pressure in the nipple so she can essentially bite/chew on it to get milk out instead of having to suck). I’m not sure if it’s possible for her to understand that concept or the physics, but I have definitely seen her squeeze it to refill it more than once.
She does other things that she shouldn’t be able to do. She’s been arching her back to help you lift her out of her car seat since she was conscious of the world.. so like since 2 months or so. She has been pushing her arms through sleeves (VERY consistently) and, again, arching her back when you pull the shirt down behind her since she was 6 months. She started banging objects together and passing objects from hand to hand at 5 months. All of these early, some, like the helping to dress herself, ridiculously so. Meanwhile she was delayed on a lot of motor skills like rolling over and sitting up, but the thought is maybe because she was restrained by things like casts and devices or surgery restrictions, she just started working on other stuff instead.
Since she was restricted from nearly all physical activity for almost two months it was really hard work for her to sit up or stand once we got the all clear, but within days she was pretty much back to where she had been at 6 months and is continually improving. I was able to sit her up and leave her for roughly five minutes at a time, with her able to look around and not tip over. She’s even started to figure out how to catch her balance. She’s also willing to stand again; the first couple of days she just wouldn’t, but if you sit her in your lap in front of an activity table she’ll pull herself up and stand hunched over it. So I’m hopeful that with the progress we’ve made so quickly in a week’s time that she will just keep pushing forward. She does still have scoliosis to deal with, but hopefully it’s not too severe (we learn more in May).
I have such a hard time with my feelings towards Avery. Sometimes I look at her and think she’s going to be fairly normal, maybe very similar to her sister, and will have a normal childhood and life after she’s done with all of this stuff she has to endure right now. Other times I think she’s going to be special. Not sure how special, but somehow special. I mean, obviously both of my girls are special, but while life seems to be ridiculously easy for Aria, who rarely meets a challenge she can’t force to comply to her will and therefore gets frustrated easily when something is above her capacity, Avery is a hard worker who rarely gets frustrated and who seems to adapt amazingly to overcome her disabilities.
One thing though that I’m so blessed with is that they are both such sweet little girls. They adore each other, and they both know how to make me smile and laugh. They are such joys to be around and I’m so blessed to be their mommy. I don’t want to wish away Avery’s babyhood because she really is, no joke, the best snuggler of all time and I just love holding her, but I do also look forward to watching them play together and Aria teaching Avery how to get into mischief. 🙂
Two Fridays ago Eric had foot surgery to repair an ankle so damaged that they found broken pieces of bone and the ligaments on one side were no longer really attached to anything. It was an injury he obtained at a younger age, but had wanted to correct for a number of years. In fact, when we would just go for walks in our neighborhood, the slightest unevenness would cause him to roll his ankle if he wasn’t paying attention.
When he found out his insurance would be changing he took the plunge and scheduled a visit with a doctor who recommended surgery and got him scheduled.
Unfortunately for me, his surgery took place at the end of February, just a couple weeks after Avery’s back surgery. So she’s still recovering and requires a little bit of extra help, and now my hubby is out of commission too. So not only is he not able to help with the babies, he also needs help himself.
I will say, it has been a little bit stressful at home. I’m starting to find a rhythm and things are getting better, plus now Eric’s becoming a little more self-sufficient now that his pain is managed and he’s figuring out how to get around and to better take care of himself. At first it was so incredibly hard being nurse to two and mommy to two (Avery in the overlap), but each day gets a little easier (with the help of a LOT of prayer.. mostly for patience).
Aria is a little frazzled by all of the changes, between Avery and Eric’s extra requirements and now bedtimes and mealtimes are a little different, and mommy is the only one chasing her around and taking her places and reprimanding her bad behavior (Eric will verbally enforce but can’t pick her up so can’t do any physical punishments like putting her in timeout, etc.). It may have taken a toll on her behavior as she has gotten multiple negative behavior reports this week. I’m not entirely sure what to do about it. We had a talk last night and I told her she needs to be a good girl at school, and I’m trying to help her see that listening to instruction is beneficial (and can be fun.. like cooking or learning something new) while not listening means reprimands.
Funny thing, at home she is actually being pretty good. She’s been helping me with preparing dinner, she LOVES to take care of her little sister, and she’s been just an all-around help for the most part. We’ve had a few rough moments, but in general she’s actually a pretty good girl. And it’s not like she’s suffering from not enough attention, we go for walks or play outside most evenings, she went to the park for an entire afternoon with most of her cousins and her sister, and she’s having a pretty good spring. (The monkey is all about climbing right now)
And she really does adore her sister.. in the mornings before being dropped off at school she wants to just sit and hold Avery’s hand. Avery seems to really enjoy the attention. And she makes sure Avery has toys, and tells me if Avery is crying and needs a bottle (which she sometimes tries to make herself).
I think her favorite part of her daddy’s whole “boo boo” situation is that she gets a free ride around the house whenever he’s on the move. She throws a fit if he goes somewhere without her, because she loves to catch a ride on his kneeling scooter thing.
Bedtime has been a little different, but she really gets excited when I tell her Avery’s going to read books with us. I put Avery on the beanbag chair and Aria sits in my lap and we read books and it’s very sweet.
Last night when I was reading, Aria went over and was showing Avery how to put shapes in a shape sorter. She would stick the shape in the hole so that it was just sitting there not quite all the way in yet, and then she would take Avery’s hand and make her push it the rest of the way in. Then she would applaud her. It was so cute.. my phone was dead or I would have taken a picture.
She’s actually participating in prayers more now too. When I say her bedtime prayer for her (I say it from her perspective), she actually repeats everything as I’m saying it. Then we both say a very fervent “Amen!” at the end together.
So while things are different, I’m just not entirely sure why she’s acting up at daycare
Avery on the other hand has figured out she can manipulate me. She just loves being held, cuddled, snuggled, kissed, adored… She can play by herself as long as someone is nearby and she’s not all alone in a room, but she prefers to be held most of the time. I just can’t manage that, though, so she ends up on the play mat on the floor or in her bouncer seat in the kitchen and she generally tolerates it most of the time. But at bedtime she demands my full attention. So after Aria is in bed Avery’s bedtime routine includes washing her stitches on her back, cleaning her helmet, and then whatever else depending on time or dirt (like a full sponge bath or not). Then we usually read a couple little baby books, some of which she gets SO excited over, like the ones with flaps that open and show something different underneath. Then we cuddle and she has her last bottle of the night. When she falls asleep I flip her over and she drools on my shoulder. It’s very sweet. It’s the only me-time I really get during the day, because she will just snuggle there and I can read or watch something on my tablet and no one bugs me during that time.
When I’m sure that she’s sated and snoring and I’m ready to go finish off the night (like dishes or laundry or general cleaning up or preparing lunches or getting ready for bed or whatever is left to be done) then I go to lay her down in bed.
And that’s where the trouble has started. It used to be that I could lay her down and she would be done for the night. Lately she’s started waking up as soon as I lay her down and then I have to hold her more and try again. Or she might go down but then wake up an a few hours later and I have to try again. She’s figured out that I will tend to her if she cries… because I have to. As she’s still recovering, part of the limitations were that she can’t cry. At least not hard crying. It apparently puts the wrong kind of pressure on her spine, which we’re trying to heal, so along with no sitting up or standing or straining to poop, she’s not allowed to cry. And therein lie my troubles.
The last couple of nights she woke up and I let her cry as long as it was just fussing and whimpering, but when it became more forceful I would go try to comfort her. But then she would just get louder and louder until I ended up picking her up and holding her. I tried snuggling her in the rocking chair, and she would instantly fall asleep on my shoulder, but when I would lay her back down her eyes would pop open and she’d start crying again. I tried feeding her more, repeated snuggles then attempts and placing back in her own bed, but kept failing miserably. So I did what any exhausted mother in the middle of the night would contemplate but probably not actually do… I brought her to bed. I tucked her in between Eric and myself, made sure she safe from being smothered by the blankets, and then passed out. And or course she would sleep perfectly, pressed against my side, through the entire remainder of the night.
When she’s allowed to cry again I think we’re going to have to work on sleep training. Poor baby’s just going to have to cry, because she needs to be able to sleep in her own bed. Even if she is the cutest snuggle in the entire world.
So with Eric’s surgery at the end of February, the total came to four surgeries within seven months, one for each member of the family: my c-section, Aria’s tonsillectomy/adenoidectomy, Avery’s cord de-tethering and Eric’s foot reconstruction. I’m sure our insurance company LOVES us right now, and we still have at least one more surgery to go in just a few months!
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)
Eric and I are both bundles of nerves, for a few reasons. Both of us are nervous about Avery’s procedure tomorrow. Every time I think about her spine, and moving her, and feeding her, and burping her, and changing her diaper, and her spine… I just get squeamish, and think about the opening that will be there… I just… Ugh.
So at least there is something else causing some of my nerves which can help alleviate the nervous fear of that, and that’s work. I have to give a ginormous presentation to the entire sales organization next Friday, and it makes me tremble to think about. Two hours of me talking about stuff that I’ve been doing research on for the last few months! What if people ask questions I can’t answer? What if my data is wrong or I interpreted it wrong? What if I mess up while super high ups are on the call listening? Again, ugh.
Eric is nervous for similar reasons. So he’s also nervous about Avery but while Avery is having her procedure tomorrow he will be reading a Bible passage for his friend’s funeral, in front of lots of people, which is his biggest fear. He said he has to worry about not only not being nervous but also keeping it together, and I think he’s a tiny bit terrified.
What’s with all this public speaking while trying to not think about a teeny tiny baby having her spine dissected and surgically altered?
So yeah, ugh.
I’ve been so blessed with such a sweet, smiley little baby girl. She really is in a great mood about 98% of the time. There are very few things that upset her, the primary of which is needing to burp. Because of the cleft palate, she takes in a lot of air, and it must really be uncomfortable until that trucker burp comes out.
Case in point, when she had blood taken most recently the nurse was appalled at how she only fussed a little while the needle was going in, then was content while the blood was actually being taken. And after when it was all being bandaged up. Then the nurse walked us out and while I was holding Avery she started screaming. I explained to the nurse that she needed to burp (as I had been feeding her), and she turned to people around us and said, “this is a burp scream? Meanwhile she let me take her blood without a complaint!”
So otherwise, she gets mad if the bottle runs out and you have to go make more, but if you calmly explain to her, while propping her up in the rocking chair or corner of the couch, that you’re going to go get more, she quite often settles down and waits patiently for more food to arrive. But not always. And she cries with the most adorable pout ever when she gets hurt, but that only lasts for less than a minute and doesn’t happen very often. I can’t really think of when else she cries.. it really has to be something for her to maintain a cry for any duration, and then I get stressed out because, no really, it really is something if Avery is crying!
So anyway, now she’s in a helmet, and has taken to it fairly well. She complains a little while it’s first going on, but then gets over it.
The one scary thing about it is that she can get really hot with it on. I had read about all the different things to watch for when she was being fitted with it, but then stupid me still didn’t take it seriously when it was time to go home. I still bundled her up in her sweater, with a fluffy blanket over her lap and the snuggy carseat cover, because, you know, it was snowing outside, regardless of how warm the car would be…
So yeah, she started screaming on the way home and I thought it was a burp. But no, when we got home she was drenched in sweat. I felt HORRIBLE. I took it off immediately, as well as her clothes, cooled her down and reread the pamphlet on how to actually take care of my baby while wearing this stupid thing.
Last night she had a hard time sleeping with it, and it was making her irritated. She would pass out from sheer exhaustion, then wake up screaming. I was worried about her being hot so I forwent the sleep sack, and also ended up taking off her shoes and socks, thinking her feet would survive a night and not regress. But even so, she would twist and turn around while crying and trying to get comfortable, and pass back out, then wake up and do it again. This went on for a little while, and I was on the verge of going and taking the helmet off, even knowing that it would make the whole process take all the longer if I caved, especially at night, but eventually she did fall asleep and stay asleep.
And would you know, she wasn’t any worse for wear this morning. I inadvertently woke her up taking it off, so that she could have her 1 hour break before I dropped her off before work, and so I could clean it, and she stirred a little then drifted back off. But when I went back to get her ready for the day she was awake, playing with her little feet, which happened to be little ice cubes. Poor baby.
But no matter. As I was holding her to my side and gathering up things she leaned herself back so that she could see my face, and as I adjusted my arm to make sure I wasn’t going to drop her (her leaning back like that) I turned to look at her and was rewarded with a giant smile. Oh my goodness she’s so freakin’ adorable.
Just as I was about to drop her off with her grandparents I started to put her helmet back on, so that they wouldn’t have to do it. I thought I’d get at least some grumbling, but instead she just smiled at me. Lots and lots of sweet adorable I love you smiles. I forgive you for torturing me, I know that it will benefit me in the long run, and I’ll tolerate it because I trust you, smiles.