Life is changing…

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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


Aria’s tonsillectomy and adenoidectomy happened this weekend. Poor thing wasn’t allowed to eat all morning, so I tried to keep her up the night before and feed her anything and everything she wanted. That didn’t work out so well, because she just wanted applesauce..not sure how well that sticks. And she wanted to go to bed just a tiny bit later than normal, instead of staying up to the wee hours (or at least until 11 or so, so that she’d sleep way in). But no, she woke up at 9.

So to distract her Friday morning we went to the playground at the mall, per Pappy’s suggestion.

When we got there she went from asking persistently, “payground? payground? Payground in there!” to so shy that she couldn’t pry herself from my leg. But she finally did and ran up to the playground… then over to the bench where the parents sit. She  climbed up and sat herself down, then pointed to the playground, “go play mommy.”

We ran around, went down the slide, and up the ladder, and I fully participated because it was fairly empty and she needed a friend.

When it was time to head to the hospital I told her where we were going, and she repeated, “going to the hociple,” but when we parked in the garage she asked, “shopping?!”

The poor thing kept telling me she was hungry too. When we had driven past Donut Connection she pointed to the sign and said, “go there?” and later, “mommy, donuts?”

So once at the hociple and checked in we were allowed to go to the playroom. That made it easier because she just made herself at home and had a ball with all of the toys. But when they called us back to our room it was a bit of a struggle to pry her from that room.. but after some questions we were able to go back, which was the most wonderful thing ever.

After surgery I was called back to hold her while she was monitored in recovery. I did as I was told, and sat in the rocking chair and was handed my largish precious bundle. Ah, to snuggle my big girl, who never lets me cuddle her like that any more. It didn’t last long, maybe 10 minutes before she woke up enough to realize that she was NOT comfortable, and made herself very understood that she wanted to lie down in her crib/bed/thing. The nurse thought that was amusing, that she definitely knows what she wants.

But while I was still holding her, when she was somewhat awake and before she was done being held, the doctor was called in to take a look at her. The second doctor with her needed to look in her mouth, so put a tongue depressor in and said, “open up sweety.” She did. I said, “open up wide” and she did. He said, “can you open your mouth bigger?” and she tried. I said, “say aaaah” and she whispered, “aaaaah.”

They looked at each other, “that never happens!” As they walked away they were still commenting on how amazing that she just did whatever they asked and actually let them look in her mouth and even said aaah.

After awhile we were moved to stage two recovery, where she was hooked up to monitors and able to watch tv. After awhile she whined at me and I picked her up and put her in my lap, in the chair next to her crib/bed/thing. It dawned on me, after she struggled, that she didn’t actually want to sit in my lap, but rather wanted my chair. So I gave it up to her, and she sat snuggled in the chair with her blanket and watched tv.

*sigh*

The nurses all thought she was a teenager already.

Eric showed up in the evening, at just about the time we were being taken to her room, and took her to the playroom in that hallway so that I could go grab some food. He played with her for a good long while, and I did too, and it definitely helped take her mind off her pain.

The night was pretty rough, what with her moaning in pain and tossing and turning, and nurses in and out checking on her, and just everything, so neither of us got a whole lot of sleep. But fortunately they discharged us pretty early in the morning so we were able to go home and she slept most of the next day. We did stick around long enough to eat breakfast, and while we were waiting we went back to the playroom, and she was in great spirits after that and breakfast.

She wavers now between crankiness and pleasant, especially when it’s about time for a new dose of medicine, but at least she’s getting a lot of rest, and Eric and I have and will be home a lot this week (Eric for MLK day and an appointment he has on Thursday, me for my regular Tuesday/Fridays as well as Thursday for an Avery appointment). So she’s home a lot and resting.

She’s actually doing pretty good at taking is easy, and the time in the playrooms at the hospital has given her new appreciation for her own toys, so she’s been dragging out everything she owns and rediscovering it. I’ve done a lot of puzzles and played a lot of games with her, and she’s done an awful lot of snuggling with her father.

Oh, and very interestingly… after the surgery the doctor pulled me from the waiting room to let me know how it all went, and besides the tonsils coming out that her adenoids had grown back to 90% (or 90% blockage, not sure) but she didn’t take them out completely because of her split uvula. What’s that, I didn’t know she had a split uvula?? Oh, someone probably should have told me after the last adenoidectomy, but that she needs some adenoids in there to compensate for the uvula so she doesn’t have speech problems.

So the split uvula is due to not everything fusing correctly.. basically a mild form of cleft palate!!!! Now I’m starting to question Aria’s health. But instead of rushing her to be tested for everything under the sun, I’m just going to bring her up in my meetings with Avery’s specialists to get their feedback. Maybe it’s a fluke… maybe not..

Ok, so one surgery down, two more (planned so far) to go! At least Aria is done, hopefully.
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