Life is changing…

Monthly Archives: February 2016

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.

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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.

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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.20160213_111217.jpg

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)

 

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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.


Ugh it has been a difficult few.. time periods. I don’t even know when it started to get so rough, but it feels like we’re sliding downhill over broken concrete on roller blades without safety gear on, hitting every shattered piece on the way down, all the while picking up speed, with no bottom in sight. Not that I would know what falling on concrete with roller blades and no gear, behind a car, would feel like…

I love my Avery so so much. But she does require a whole lot of emotional response. She brings me joy and breaks my heart all in the same day. Her enormous adorable smiles melt my heart and her little helmet makes it bleed.

God has a plan. I know it, He knows it, Avery seems to know it too. She started off so tiny and frail, with calcification in her brain, a body with so many complications, and a bleak future. And now at six months her feet look normal, her head is rounding out, her tethered cord surgery is right around the corner with a promising future after recovery, her cleft palate surgery is also scheduled and she’s eating baby food, interacting with her family and showing personality, grasping and cooing and playing, and even able to sit unsupported for a good long while. All things that I wasn’t sure she’d ever be able to do, or at least not within normal milestone timelines. I look at her and I apologize to God that I ever had any doubts. He placed a lullaby in my head when we struggled through those first few days, that “you will overcome, all that was undone, and may the Lord be true and bring new faith through you.” He may not have knit her together completely in her mother’s womb, but he hasn’t put down his knitting needles yet. He’s letting me watch and help work through some of the tangles. She has changed me so much in her short little life so far, and I need to just continue to trust that everything I still worry about isn’t worth worrying about, because she’s a beautiful perfect little angel puff just the way she is and however she turns out.

I did just stop this morning to buy the pre-op soap that I’m supposed to wash her with every night this week in preparation for her back surgery on Friday. I’m getting squeamish and nervous.. but it will be ok and will all be a memory soon.

And then there’s Eric’s family. Our nephew Mark ran away last weekend. He’s home now, but there is so much brokenness in that poor family, with him having been taken from home as a child, enduring the foster care system for years before being adopted by Eric’s brother and sister-in-law. He is so sweet with all of the little kids, his cousins, and even with us, his aunts and uncles. But he has so much grief that he’s buried and can’t escape. He watched his father die from an overdose of drugs at seven years old, and his mother chose drugs, alcohol and men over him, and yet he’s drawn back to her because it’s his mother. Despite all that Jason and Crystal do for him, try to teach him, and the future he’s guaranteed just by being part of a middle class family, he can’t see it through his teenage hormonal blindness and childhood trauma. They can’t seem to connect to him, and he keeps getting in trouble. Once he was found they did have a small breakthrough, but it’s such a long road ahead and the poor kid probably feels so alone. He can’t possibly understand why they would care for him and he’s surrounded by so many bad influences that tell him to take care of himself first and steal, cheat and lie to do so.

And then this weekend we learned more news. Eric’s childhood friend, who would come to game night every week, who watched Aria grow up for the last two and a half years and who I called Uncle Joel because of that, who helped me plan Eric’s surprise game party birthdays multiple years in a row (although it was only a real surprise the first time), who has a fiance who built her entire future on him.. is in the hospital dying. He had gone to the doctor with a cold, then later with the flu, then finally admitted to the hospital with pneumonia, and ended up with fluid in his lungs, kidneys that started to shut down, and sedated on a ventilator and life-flighted from one hospital to another as he continued to get progressively worse over the course of a month. On Friday it looked promising, that the dialysis was working and his oxygen was improving and it looked like it would be a long road to recovery, but recover he would. And then he had a brain aneurysm. Eric went up yesterday and was told to say his goodbyes, along with all of the other friends and family that had come to give their farewells. Joel’s brother was flying in and then they would pull the plug.

It’s just so heartbreaking because he was a such a great person and friend, and my heart just breaks repeatedly as I think about his fiance. I saw her on Wednesday when I went to visit Joel and she said, “I’m not worried about them calling to say he’s dead, I just can’t figure out how to manage without him every day though.” And then this.

I know I lay awake a great deal last night praying for her. They wanted to get married. They did not want to have kids because they didn’t want to bring children into the world with their health problems, but oh they loved their nieces and nephews and their friends’ kids dearly. Joel was always so very sweet with Aria. In fact, when I would tell her it was time to go to bed, while the guys were having game night, I would say, “let’s tell daddy night night” and she would climb in his lap to give him a hug and kiss, then she would go over to Joel for one as well. She ignored the other guys.. or would give them weird looks. But Joel was her favorite. Now she won’t even remember him. They hadn’t had game night since Avery was born because of all that is going on with life since her. But Eric was actually thinking about starting it up again. We had just had a talk a few weeks ago about him doing game night and me going to Bible study with Crystal. Now who knows if or when that will ever happen, with all that is going on with our families and our friends…

It’s just been a little bumpy over here, but we’ll get through it. I keep telling myself that God is on the move.

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Aria is SUCH a little mother anymore. She tells me when Avery is crying, even if Avery is sitting in my lap, and she brings her toys and blankets and anything else Avery might ever want, at random intervals throughout the day.

The other night she disappeared for a little while and when I went to check on her she was in the kitchen “making Avery a bottle.” There was a bottle dusted with formula, and what felt like hundreds of dollars worth of formula on the floor. It wasn’t really that much, it just felt like it.

She tells me when it’s time to put Avery to bed, she helps bathe her little sister, helps feed her sister, and in general makes sure I’m doing my job correctly.

She also keeps her father in line. Just the other night she asked him for something and he told her no, and she squared her shoulders, looked him firmly in the eye and said very sternly and calmly, “Daddy. Open this.”

I feel bad for the guy, he doesn’t really stand a chance against the tiny package of adorable bossiness.

Meanwhile Avery is starting to get a sense of humor. She is fascinated by hair and glasses, and gets the biggest kick out of pulling on them to get a reaction out of me or whoever. Like when Aria, or Kayla for that matter, put their face in her face to say hi or give her a hug, they are rewarded with huge smiles and two fistfuls of hair that have to be pried away.

The other night Aria was sharing her tablet with Avery, and was letting her watch Winnie the Pooh with her. Avery decided to lean forward and grab the tablet but then Aria decided she no longer wanted to share after that and turned her back on her.

And honestly I think Avery is starting to burp me. While I’m holding her and patting her back, she often starts patting mine as well. Not sure if it’s play or what’s going on. But one thing she Always does is wrap her arms around my neck. No more stiff arms to the side while she passes out on my shoulder, now those arms are wrapped around my neck, sometimes with fingers tangled in my hair, but it’s so sweet and cuddly.

She still hasn’t started actual laughter yet, but she has her own version which you swear is her laughing, even if it doesn’t sound like it. The face says it all, and then she makes little baby squeals and she’s just so infectious that you forget that you didn’t actually hear true giggles.

And I think she’s going to be a little bit mischievous like her sister, because she just seems so… so overly innocent after doing something, like untying the shoe you literally just tied.

Her grandmother told me that she had eaten a variety of the foods she’s been exposed to, but later in the day she spat everything out and clamped her mouth and refused anything but milk. Who knew Avery had enough presence of mind to decide what she does and doesn’t want. I guess I forgot when they start to have individual demands.

But no worry, Aria is usually around to tell us what Avery wants, or needs, or what she’s going to have whether she wants it or not.


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.

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Resigned Avery